In May of 2017, I went to the doctor for a yearly mammogram. I have gotten a yearly mammogram since I was 30 due to my paternal grandmother having had breast cancer. At that appointment they decided I would need a diagnostic mammogram and an ultrasound. Within 2 hours of this appointment, I was sitting in my doctor’s office and he was telling me that I would need a biopsy.
That was on a Wednesday. On Friday I had the biopsy. The doctor called me the following Monday to say it was indeed cancer. He called me while I was at work, with no family around.
After getting this news, my daughter and I went to see him. He thought having a lumpectomy would get it all, and that a mastectomy would be a bit too extreme. So a week & half later (June 2017) I had the lumpectomy and my lymph nodes were tested. He confirmed that it had not spread. I was ER/PR+ HER2- Stage 1B Ductal carcinoma in situ.
My doctor sent me to an oncologist who wanted to perform 33 radiation treatments and 4 chemo treatments without testing the cancer. I was not comfortable with this opinion, so I requested a second opinion and the doctor refused my request. I decided to send my information to a doctor in Franklin TN, who is also a breast cancer survivor. After reviewing my information, she scheduled me for a MRI, ultrasound, and a biopsy.
They found another cancer spot 1″ from where they performed the lumpectomy. She said the golden rule is, when there are 2 spots in the same breast, a mastectomy is recommended. I told her that if we’re doing it to one side, then we are going to do both sides. I scheduled my bilateral mastectomy and reconstruction so I would have 4-6 wks recovery because I had a granddaughter coming. In September 2017 I had a bilateral mastectomy with reconstruction. 4 weeks after my surgery, my granddaughter was born. She has given me even more reason to fight.
On December 2017, I had the surgery to have my expanders replaced with implants. I went from a DDD to a C.
Throughout this journey my family was very supportive. I had just started dating a guy 3 months before I was diagnosed with cancer. He stayed with me and took care of me and my daughter for 6 weeks while I recovered. I went to a new oncologist who did an Onco Type testing in the cancer and it came back a 5 meaning I did NOT need chemo. I am now taking Tamoxifen (which is a hormone blocker) for 5 years.
It was Monday May 14th 2018. I had been thinking I was pregnant for about a week. I finally took the at home test (okay more like seven of them!) and they were all positive! I immediately called the doctor’s office and I got an appointment for the next morning at 9 am with my good friends OB. That in itself felt like a miracle! Now knowing that I was pregnant I thought for sure that the lump that I had been feeling on my right breast HAD to be from pregnancy. That night, two days before our three-year wedding anniversary I told my husband we were pregnant. We were both super excited and nervous. He continued to say “I knew it” “I just knew it!” The next morning, we went in to confirm the pregnancy and got to see our little babe on ultra sound. They said I was about six weeks along! *Side note* my cancer timeline goes by my pregnancy weeks and how far along I was at the time! The weeks and trimesters are very important when it comes to cancer treatment and surgeries during pregnancy. Towards the end of my appointment Dr. Kyzer (my OBGYN) had asked if I had any other questions. I told her about my lump. She felt it and said that it felt like a fibroadenoma but wanted to send me to a breast specialist to be sure. Now looking back and also seeing so many other moms’ stories of their lumps being brushed off as nothing…I am so thankful to her for sending me to Dr Whitworth.
A week later at about 7 weeks pregnant I had my appointment with Dr Pat Whitworth. I was only nervous because he was a male and I always had a female doctor. I even told my husband not to come with me because they would just look at it and tell me it’s a clogged milk duct or something. After looking at it on ultra sound he said he wanted to do a biopsy right then and there, and that’s when I felt like I knew it was cancer. I called my husband and he rushed to be by my side while they did the biopsy of my tumor and a lymph node. If you know me, you know I am terrified of needles. I was very nervous about the biopsy. Dr Whitworth said oh don’t worry we numb you up and it just sounds like the sound that the ear pierce gun makes. I look at him terrified and said “I’ve never had my ears pierced!!” That was the joke we made throughout the whole journey.
At 8 weeks pregnant we went in and got the news. You have cancer. I didn’t cry. I just sat there and stared at them and my husband. I felt I had already prepared myself from the biopsy. My husband is a warrior. He was my patient advocate, best friend, and personal assistant starting right then. We had not even told family or friends that I was pregnant yet. My husband Ted took on the task of calling all our family and friends and letting them know we were pregnant but that I was also diagnosed with breast cancer.
I sat around for a couple weeks with our dog by my side feeling very tired from the pregnancy. I binge watched Impractical Jokers (I highly recommend!) and laughed a lot. Ted was always out on the phone calling doctors and friends to get opinions of doctors and who was the best. Sure enough we ended up with the BEST team of doctors who had a solid plan.
We found out that I had invasive ductal carcinoma, triple negative, stage 2 with lymph nodes clear. Most dread the thought of triple negative but for treatment with me they felt best about that type as any hormone therapy while pregnant would be difficult. At 10 weeks pregnant on June 5th I had a lumpectomy and one lymph node removed. If I was not pregnant they would have done the double mastectomy but since I was pregnant I could not be under anesthesia for that long. June 5th is technically my cancer free day but we decided to attack from every angle in case there were any stray cells. July 2nd I had my port placed. It may sound silly but that was the worst part for me. Being pregnant I could not have any anesthesia only local numbing. I felt most of it, plus could not take any pain meds after. On July 5th 2018 at 14 weeks pregnant and the start of the second trimester I started chemo treatment. After the first trimester the chemo is too big to cross the placenta so it is safe for the baby. If you are pregnant and fighting cancer I urge you to reach out to me and/or an organization called “Hope for Two”.
I did A/C first. Every three weeks instead of every two because my oncologist did not feel good about giving me the nuelasta shot (which brings up your white blood cells) while pregnant. My counts surprisingly all stayed very high during treatment until after I delivered, which just proves that Charlotte had my back and was fighting too! I am an artist so I brought some things to paint to help the time pass. I recommend bringing books, crosswords, painting supplies or whatever you enjoy doing. Thankfully I had very little side effects until the fourth and last A/C where I just got extremely tired. I did start to lose my hair after the second treatment. It was very itchy and hurt so I had my husband shave it. We got an amazing wig from HPI hair partners here in Nashville, TN and no one could tell It was a wig! People would always say how much they loved my haircut! We made it a funny experience since he is bald also, and it brought us that much closer together.
I then started Taxol. Taxol can cause neuropathy so my oncologist Dr. Vandana Abramson suggested icing my fingers and toes. It is not fun. I REPEAT NOT FUN, but it is worth it because I have no neuropathy! I suggest wearing two pairs of latex gloves and two of the super fancy puke bags on your feet! I iced them for 1.5 hours every Tuesday for 9 Tuesdays. I am thankful for Vanderbilt 100 Oaks private infusion rooms so I could curse the ice without anyone knowing other than my husband and Jerry Seinfeld.
At 32 weeks pregnant we did the Making Strides against Breast Cancer walk here in Nashville TN benefiting The American Cancer Society. I could not walk the whole thing but it made me feel so empowered! Until then I had not really put myself out there as fighting cancer. I wanted my journey to be all about my pregnancy. It was not until then that I decided it would be about both and I was okay with it! Being with other women, men and their co-survivors who have gone through it was so helpful.
Then, on November 21st 2018 my high risk OBGYN told us that Charlotte aka Charlie had stopped growing as she should and that I needed to deliver via C section on Friday November 23rd. It was the day before thanksgiving so I was admitted to the hospital so that I could receive a shot to help her lungs develop. On Friday Charlotte Rae Limmer was born at 8:15 am weighing 2lbs 9oz and a little over 15 inches long. She did not come early and small because of the chemo treatment, this was due to the umbilical cord being attached to the placenta on the side instead of the middle. That day was also Apple Cup which is the biggest rival game of college football season. We joked that mommy was talking so much about it that she just had to come and cheer them on herself!
Of course we won the game! She was and is the strongest girl I know. She is so brave and helped her mommy kick cancers butt. Charlie spent three weeks in the NICU at St. Thomas Midtown. It was hard leaving at the end of the day but I knew she was in the best hands.
I don’t think I could have done it without her. After she was born I decided to finish my last three taxol treatments to push out the time I could have at home with her before surgery. Charlotte came home on December 18th and got to spend Christmas with us! It also meant that she got to come and celebrate with us at our last chemo treatment. There was no better feeling knowing that she got to be there by my side as I rang the bell, after all she fought too!
I then had 5 weeks to either start radiation or have a double mastectomy. For me there was no question. I wanted to have the surgery. I would always worry about it if I didn’t.
February 4th 2019 I had my double mastectomy. I don’t remember much until getting home the next day from the hospital. My family came in to help and recovery went quickly with not too much pain. Getting comfortable in bed was the worst part. I would recommend an over the bed table as I found it very helpful! The drains to me were uncomfortable and grossed me out but my husband did all the cleaning and emptied them for me! It was devastating not being able to hold our baby girl but her being so small had its advantages. After surgery I had a 10-pound weight limit which meant I could still hold her and about a week later I could lift her. I had tissue expanders placed during surgery and went in for four fills. The needle looks scary but the fills don’t hurt, they just are a little tender that night. I had the final surgery on April 25th 2019 to replace the tissue expanders with the implants. I thank my plastic surgeon Dr. Jacob Unger for making me feel and look normal again! He was so great through the whole process. He made me feel so comfortable and his bedside manner was so calming. I would HIGHLY recommend him if you are in the Nashville area. It took about a year, but boy (or should I say girl) did it go by fast. All of my breast tissue from surgery came back clear and Charlotte, Mommy and Daddy are doing great!
My biggest take away would be to STAY POSITIVE! I found out that I had the best humans in my life and I promise you do too. So many positive and helpful people right here in my community with family living so far away. I am so thankful to my family who made many trips down to help after surgeries. If you surround yourself with positive people it makes the journey go by easier and faster.
The second thing is to be your own advocate! No matter what. I was one of the lucky few that had so many advocates for me. My husband and my doctors were all so great and made me feel comfortable and informed about every decision. However, that is not always the case. I hear time and time again women saying they get brushed off by doctors saying they are too young, or new moms where doctors say it’s just a clogged duct. It makes me so sad to say but it does not matter how young you are, just get it checked!
Lastly ask questions, and take notes. NO QUESTION IS STUPID! My husband would always walk in with a long list of questions and walk out with a sheet full of notes. It is so helpful to have everything written down and in one place.
It’s a tough journey but you can do it! It won’t be easy but it’s worth it. I love this quote and I am not sure who said it but I lived by it and I hope it brings hope to you!
“YOU WERE GIVEN THIS MOUNTAIN TO PROVE IT CAN BE CLIMBED”
*My husband and I also did a podcast with Jake Owen about our journey that I would love for you to listen to. His podcast is called “Good Company” and its #20 “The journey of Jocelyn and Ted”
Through it all my faith and trust in God has gotten me through. My church and all of the prayer warriors have brought me so much peace and hope. Trusting Gods plan for me and my family and what he has in store for us!
I’m so excited for you guys to meet this beautiful lady. Her instagram page is one you definitely should go follow. Her words are so raw and beautiful.
“Everything looks fine”
That’s what 4 medical professionals told me before I was diagnosed with Stage 3, grade 3, ER and PR positive, HER2 negative breast cancer.
The 1 cm “bump” that I felt was so insignificant and tiny that people could barely feel what I was talking about, but I KNEW. Why? Because I learned to know my body and had started advocating for myself when it came to my health, and thank God I did.
I am married to the most incredible man who I call my Husbandman, and we’ve been married 14 years, this year, and parent 2 of the most insanely wonderful little humans.
This cancer battle has been hardest on them, especially our almost 10 year old son.
Our 5 year old daughter weaves in and out about talks on death and it bring tears to this mama’s eyes to see my babies battle through this as well and how their faith has grown.
People will tell you about how “brave and strong” you are on days where you’re barely holding on. That’s when I see God’s power! I also have learned that we are all so much stronger than we give ourselves credit! Thank your phenomenal body today!
The future seems a bit crazy since after chemo, a bilateral mastectomy, lots of radiation, and a ton of clean eating and detoxing, the cancer is still not all gone and continues to spread.
I’m exhausted & frustrated.
I’m blessed and so grateful.
How can I be all four of those?
Because life is a beautiful contradiction.
Because my life is God’s capable hands.
Because I am STILL here to live it,
and for that I am so insanely grateful!
Breathe it ALL in, warrior sisters & brothers!
We’re in this together!
Love you all💕
You can follow Asha’s story by going to her instagram.
Oh hey! I am happily the other half of the team of Tata to Cancer with Laura and like the other women we share stories of, I am a young breast cancer Survivor. Today I am going to share my experience with you, and like the others who have shared, I hope this helps other women who unfortunately may encounter something similar until we find a way to prevent this disease.
My story all started with an itch. Yes, literally, an itch. It was the first day in my new house in Nashville on November 1, 2017 and I woke up to an itch on my breast which led me to feel a large lump. When I took my shower that day I performed a self-exam, which I am so grateful to have learned in college, and it is then when I realized this was something I needed to get checked out as soon as possible. That morning, at 34 years old, I called my doctor whom I had just seen less than 6 months earlier where I received a clear bill of health. After a couple of days of trying to get an appt I found another OB/GYN who could get me in and then my process quickly progressed.
In hindsight I know how lucky I am that the first nurse I saw took this seriously and I went from finding a lump on the 1st to my first appt on the 6th followed by 3 days of appts to where I had an ultrasound, mammogram, MRI and biopsy which all led to my diagnosis on November 13th, it was a total whirlwind. When my doctor told me it was cancer I was in total disbelief, I really thought it was not possible. My friend and I sat in shock while my doctor quickly moved into surgical options and scheduling blood work and additional x-rays which I would be getting a mere 30 min after I heard the news. I found out quickly that this was no joke and in that moment my journey began.
The next few weeks progressed at the same rate – after my diagnosis I saw all of the specialists I needed within days; oncology surgeon, oncologist, plastic surgeon, and fertility specialist. I had genetic testing which yielded a full negative panel and therefore no indication of why I would have breast cancer so young. The first two weeks were an onslaught of information and decisions which at the time you know are serious, but how serious and what your decisions mean for the rest of your life you cannot even comprehend.
After reaching out to other breast cancer survivors (who gave me the best advice!), I decided to get a second opinion – which I believe is well worth it and highly recommended. While it could be an added expense and it does take time, for me having a third party validation gave me the piece of mind I needed at a time when everything I was hearing was not only foreign, it was crazy talk…there was no way I was a healthy and active 34 year old with breast cancer. My denial was put to bed with the confirmation of the exact same diagnosis from two full medical teams – I had triple positive (ER/PR/HER2 positive) breast cancer which required surgery, chemotherapy and years of follow-up care.
Once I started to accept the reality, I chose to enact my standard businesslike approach and get to planning. My family, from Detroit, and friends banded around and all ensured I never had to go to an appointment alone no matter what resistance I gave. I now totally recommend having a note-taker in every appointment through the process, we had a notebook which we could use to do our homework after the appointments since 90% of what was happening did not get absorbed on the first pass. It wasn’t until months later when I reread all of my paperwork that I started to understand my diagnosis and all of the notes helped me greatly in sorting through the medical jargon.
Within days of my diagnosis I started fertility to get ahead of the chemotherapy. (Side note: Fertility treatment is an important question to ask your doctor if you don’t yet have kids and was something I would have never thought about.) The egg removal procedure would be followed closely by the tumor surgery. While I was given an option for the type and extent of surgery, a double mastectomy was the overwhelming recommendation. There are a few types of mastectomies – skin/nipple sparing, skin sparing, or full removal. How and what is removed is based on the stage/type of cancer and location. In my case the location of the tumor required I had a skin sparing surgery which removed my nipples and all breast tissue. On December 14th I had my surgery and with the removal of the tumor, clean margins and clear tests of my lymph nodes, I was then cancer free! While that was the official case, I surely did not feel cancer free as I was preparing for chemotherapy to start in less than a month.
Like many cancer patients, I decided to keep working through my treatment. My work has always been a huge part of who I am and I felt that if I took time off then the cancer would have won. Luckily, I work for an amazing company and have a very supportive leader as well as an incredible team who made the hardest days of my life possible. While my mom and friends and family showed up for my treatments and to sit with me on the hard days (the 2-4th days after the chemo), my work family kept me uplifted and feeling useful – albeit I wasn’t always able to do as much as I wanted. My first chemo treatment was the second week of January, 24 hours after having my chest port placed. I went through 6 rounds, 1 every 3 weeks, of the hard stuff which was then followed by 7 additional months of Herceptin to treat the Her2 positive diagnosis. I lost my hair, which I shaved before it fell out, and decided to go bald for the majority of the time…wigs just were not for me. One of the things that got me through chemo, aside from work, was staying active. I got a trainer to help me get my mobility back after the first surgery and then joined a fitness group. Staying busy was hugely beneficial for my recovery.
Once I finished chemotherapy I was able to get the second reconstructive surgery. This surgery, while hard to recover from due to the skin grafts of my new nipples, was a mental game changer – it helped me feel a bit more like myself. I was hesitant to have the reconstructive nipples, where the doctor makes nipples out of skin from another part of your body, but after strong recommendations I opted in and am today beyond thankful. While this isn’t for everyone, seeing myself look more similar to my “old self” helped me move forward and accept my new body.
Following chemo I continued Herceptin IV treatment and started on Tamoxifen in addition to Lupron (both of which I am still on today) to manage my hormones and prevent reoccurrence. While I take these medications, I have found that making lifestyle changes has helped me the most with my recovery and I expect with my long term health. Cancer has given me way more than it has taken from me and I am oddly grateful for the journey it has taken me on and the path it is forging for my future. I am more aware of my body as a machine I need to take great care of than ever before. My desire to learn more about how I give myself the best outcome and in turn help to spread awareness to others has become an everyday passion. Advocacy, fundraising and being a part of a community of survivors has given me an entirely new outlook and I am excited to see where this path will lead.
The last thought I want to share and leave you with is in regard to mental health. For me the physical side of cancer, while unpleasant, was the easier part. I don’t believe my recovery really began until after I was months out of chemo and fully healed from my last reconstructive surgery. I was still getting treatment and had my chest port while my hair began to grow back and I started to feel normal, gaining my energy and living a normal routine, this is the point when I realized what had actually occurred over the last year. Reflecting on what had occurred and how much my life was changed hit me harder than the actual diagnosis and has taken more time to process than I could have ever guessed. If I can share one piece of advice it would be to take the time you need to reflect and feel all of the emotions cancer can bring on. Love yourself through the good and the bad and when you don’t have energy, have the courage to let someone else’s love hold you up.
Writing my story and sharing with friends and family was therapeutic in my process. My full journey and more about life beyond cancer can be found on my blog at www.courageforgoodbetterbest.com or you can find my story on Instagram @sparty_ang.
I look forward to being a part of sharing more stories of survivors and thrivers as we all band together for support and a drive for a cure! Tata to Cancer!
Toni is one of my Nashville Breasties! So excited for you guys to meet her!
I found my “lump” myself in 2016. It was small and about the size of a pea. I brought it to my Nurse Practitioner’s attention and she decided I should get a diagnostic mammogram. When I went for the test I was told I did not need a mammogram due to my age, so they opted for an ultrasound instead. I was told they were sure that my “lump” was nothing more than a fibroadenoma (benign tumor). I had these results sent to my ob/gyn who also confirmed there was nothing suspicious.
Fast forward to August 2017… I was at my next routine ob/gyn visit, and my doctor completed his breast exam and said everything looked fine. I questioned the lump again that now seemed like it was the size of a marble and pointed out that it was growing. Since I felt that it had grown he sent me for another ultrasound that confirmed it had doubled in size. The radiologist was still certain that it was just a fibroadenoma, but recommended a biopsy since it had indeed grown.
I was then sent to a surgeon to see about having a biopsy. At this point I was not alarmed at all! The surgeon gave me 3 options; I could do nothing and monitor it every 3 months, a needle biopsy, or remove it. I was at the surgeon’s office alone and of course asked him what the best option was. He told me that if I was his wife and had a painful lump that was “nothing” he would recommend removing it, so I was in agreement. To be honest, I wanted it gone as well. It was on my bra line and hurt so bad some days!
Surgery day came, Daniel, my husband, went with me and I had it removed. Again, I was not nervous. I was not scared. I thought they were going to remove it and all was going to be alright (the C word didn’t cross my mind, so naïve!). After surgery the surgeon told me to call and make a follow-up appointment within 2 weeks, I checked my work schedule and made the appointment closer to the 2 week mark due to convenience. His office called me later and asked if I could come in earlier, I was so annoyed with them, but went. Still I thought nothing about it! In hindsight, I think of how naive I was, but I think for my mental health I am happy that I was not worrying all of those days! I went to the appointment alone, again because I had nothing to worry about, right!?! (WRONG!) When he and his Nurse Practitioner came in and said those words, “I am sorry it came back cancer,” I was shocked. Total disbelief. How in the world at 30 years old did I have cancer!?! I cried. Not ugly cry (yet), but I sat there and just let the tears flow. The NP was AMAZING, she hugged me and I am pretty sure shed a tear for me as my life was instantly changed. She shared her personal phone number with me and said she wanted to be there for me if at all possible. They both told me they wanted to tell me so badly to bring someone with me, but knew I would be alarmed.
When I left the surgeon’s office I immediately called Daniel and told him that I have cancer. He cried with me, but he had the instant mindset of “we’ve got this” and he continued to use that phrase throughout all of my treatment. In that moment normalcy is all I wanted, he suggested we go eat and get ice cream to take my mind off of it. I just wanted to go to the gym and follow though my normal routine! Looking back, I realize how crazy that probably sounds. But I instantly knew I didn’t want cancer to take over my life. My mom goes to the same gym and she knew as soon as she saw me that something was wrong and I told her. From there, I text a few of my close friends, but I didn’t want people to know at first. I am not sure why, but once I had the final diagnosis and treatment plan I knew there would be no hiding it and decided to open up about it.
I got my final pathology back that my cancer was Her2+ ER/PR-. I was told that chemo was a must, due to my positive Her2 status, and that I would be doing 6 rounds of TCHP (Taxotere, Carboplatin, Herceptin, and Perjeta) followed by a total of a year of Herceptin infusions. I would also need a lumpectomy with radiation or a mastectomy (I ultimately went with the double mastectomy). My MO then ordered a breast MRI to confirm the cancer was only in my left breast, the MRI showed a tiny lesion on my sternum and a couple slightly enlarged lymph nodes. I was sent to a breast surgeon who did a biopsy of my lymph nodes which confirmed I had one positive node. Due to the sternal lesion I then had a CT scan and bone scan to see if the sternal lesion was cancerous. The CT scan revealed yet another lesion on my iliac crest (hip), now requiring a PET scan. Praise the Lord, the sternal lesion and hip lesion didn’t light up! I remember when I got the call that those did not light up, I cried! Throughout all of this, in my naïve mind this whole time I was hoping that they removed the tumor and I was done. Again, how was I so stupid!?!
The thought of chemo shook me to the core. I did not want to LOOK sick; I know that sounds vain, but I truly didn’t want pity from others! I did not want the world to know I was sick. What did I do? Google how to save my hair, found out about cold caps and Daniel was on board with helping me do this if I truly wanted to. I talked to my MO about it at my next appointment and was told to “embrace being bald,” he said that cold caps are painful, expensive, and not guaranteed. His office gave me lots of info on wigs, but was not supportive of cold capping! I am stubborn; I talked to many different companies and decided to try it anyways and got my caps through Arctic Cold Caps. At my first treatment everyone laughed when I rolled in my Coleman cooler full of dry ice and caps. Everyone was so interested in the process! Cold capping was hard. My first treatment I had them on 10-11 hours (you start 45 min before, during, and 4 hours after). It was a lot of work for Daniel, he had to change the caps every 20 minutes and make sure the caps were maintaining the correct temperature. He never complained! I am sure I complained more than him about the discomfort! Overall, I would say I lost 25-30% of my hair, it thinned overall, but I didn’t have visible bald spots. Many people say that I never looked sick, but I look back at pictures and they are just being nice! LoL.
Chemo was HARD, but it was doable! I expected to have no life other than cancer while going through chemo, yet I was able to maintain some normalcy most days. I still worked full time, only taking off the day of treatment and was still able to go to the gym and do low impact workouts. I think the biggest surprise was a loss of friendships. One thing many people don’t consider when you’re diagnosed, especially at a young age, you may lose friendships. Your “friends” may not be able to relate to you anymore and become distant. I wholeheartedly don’t think it’s on purpose, but as I’ve talked to other survivors it seems to be a pattern. Although I’ve grown apart from friends, I have gained some friendships that I’m forever grateful for! One of my now closest friends is someone I’ve met in a Facebook group. She messaged me back in December 2017 stating that I looked happy and healthy and that I gave her HOPE. Just knowing I gave one person hope made me happy! She was newly diagnosed and I shared all the information I could about Cold Caps, chemo, etc. We formed the best friendship and last June I was able to travel to Georgia and meet her in real life! It was AMAZING!
If I could give anyone going through this journey tips, it would be to be your own advocate! I cannot express this enough. Nobody cares about your own health as much as you do and nobody knows your body as well as yourself! If I would not have been persistent that my “lump” was growing who knows how much longer it would’ve been before diagnosis! Also, stay away from Google! It is not your friend and will just terrify you even more! Take it day by day and don’t compare your cancer journey to anyone else’s!
I would like to give some advice for those going through chemo. Listen to your body, if you feel like you need to rest, do not over do it! Stay ahead of the nausea meds. Tell your oncologist about any symptoms you are having a difficult time with, they can’t help with relief if they don’t know what you are going through. Lastly, don’t be afraid to ask for help with anything! Whether it be housework, helping with the kids, emotional support, anything!
Don’t be afraid to cry! Don’t hold your emotions in, express yourself. It is ok to have bad days! Find you a “breastie!” Someone going through the same treatment, it is so nice to have someone to relate to. Share stories with. Ask for advice.
Daniel from day one has always told me, “we’ve got this!” I think his positive attitude throughout this tragic time impacted mine and helped me stay strong during chemo, recovery from surgeries, and everything else!
So excited this beautiful lady is sharing her story with us. I love her attitude. And can we talk about her infectious smile? So beautiful!
Health has always been my burden. I was born with Sickle Cell Anemia Disease, a genetic blood disorder that has kept me in and out of pain and hospitals my whole life.
In 2017 I was diagnosed with Stage II Triple Negative Breast Cancer at the age of 30. I was completely shocked as I don’t have a history of breast cancer in my family nor did I test positive for the BRCA1 gene.
I endured 8 rounds of chemotherapy, a lumpectomy and lymphadenectomy (removal of lymph nodes) and 6 weeks of radiation. At completion of treatment, in February 2018 I was declared to be in remission.
It wasn’t 7 months later did I spot a white mass growing under my armpit, at the site of my last surgery. I immediately knew that it was back and sure enough a PET scan confirmed that it was. The cancer had come back with a vengeance spreading to the lung, brain, liver and bone- this was Stage IV Cancer. This time it also manifested on the outside of my breast causing a large wound. I currently have no skin on my right breast.
So, I’m back in the fight! I receive chemotherapy 3 times per month and wound care once every 3 weeks. I know the Lord is healing me.
One thing I have learned in this fight is that my burden makes room for my blessing. I knew that the Lords intent was to be glorified through my illness and that His people be loved, encouraged and blessed. My burdens is what launched Jewel’s Rhema, a nonprofit dedicated to providing resources and encouragement to young breast cancer patients. We provide chemotherapy care packages to clinics for their patients.
To all my Warriors in the fight: Keep the faith- you CAN beat this. You WILL beat this.”
Hello! My name is Amy Cox and I live in sunny California – Orange County to be exact. I am a wife to an amazing husband who was my primary caregiver through cancer and I am a mom to two amazing daughters who are ten and six. When I was 35-years-old, I was diagnosed with Stage 3 invasive ductal carcinoma breast cancer. My cancer was ER+ Pr+ HER2-. Currently I am on Tamoxifen for hormone therapy, and I am waiting on a second opinion for other hormone therapies that may be available.
Today I am 37, thriving after cancer, and living my best life! Here is a snippet of my story:
The possibility of cancer was something I didn’t want to face. Being the granddaughter AND daughter of two very badass cancer survivors and thrivers, I knew it was a possibility. Never would I have guessed it would happen when I was in my 30’s. I had my second baby in 2012 and nursed her for about a year. Six times during that year, I developed mastitis (infection of the milk ducts). It was so painful! It was a little ball on the side of my right breast. I really didn’t put much thought to it then. Fast forward a few years later. The mass was still there, and it was getting bigger. I was still in denial. Had this cancer been with me all this time? I found out later that there was no direct correlation between the cancer and the mastitis. It was explained to me that the two are not brother and sister, but maybe 2nd cousins. Maybe there will be more research about this subject in the future, but for now, it’s anyone’s guess. A frightening fact is that four years ago (roughly two years before my diagnosis, and two years after my second baby was born), I posted an image on Instagram telling other women what to look for in their breasts during a self-exam. But I was too scared to even look at mine. What? That is a scary thought!
I finally decided to face my fears, after about four years of ignoring the growth, and go to the doctor. I didn’t tell my husband I was going until the day before my appointment. A mammogram confirmed an abnormal mass. A core biopsy confirmed it was cancer. It was a huge starburst-shaped mass, about five centimeters. I’ll never forget the look on the face of the technician who did the ultrasound before my biopsy. She was about my age, and she could tell that it was cancer. She told me later that during that ultrasound she had wanted to cry with my husband and me. In fact, after we left, she did cry. I was officially diagnosed with Triple Negative breast cancer on October 31, 2017. Happy Halloween!
We decided to tell our girls about the cancer that day, but we were determined to keep up with a normal life for them and took them trick or treating with our friends. Later that night, my husband and I did some (okay, a lot) of self -medicating! We decided not to tell anyone else until we knew exactly what we were dealing with. Our family and friends knew something was happening because we had so many doctor appointments, and they could also sense our overwhelming emotions. The hardest thing was having to tell my sister over FaceTime since she had recently moved to Arizona. She was always my sister/mom, so I really hated that I couldn’t tell her face-to-face.
I was initially told that I had triple negative breast cancer, so I really didn’t have a choice on treatments. Triple negative does not have any targeted treatments, and that’s freaking scary! I was told that I needed the strongest chemotherapy available — I ended up doing the AC-T regimen — and a double mastectomy after chemo. My breast surgeon was wonderful! She walked through all of the details with us and calmed any fears we may have had.
My oncologist was a different story. She never explained much, never gave me options. She just said this is the only way. It wasn’t until I got the final pathology report from my oncologist that we found out I was in fact NOT a triple negative breast cancer fighter, but that my cancer was ER+ PR+ HER2-, a cancer that I knew nothing about. I had been researching Triple Negative cancer the whole time. Knowing what I know now, I would have requested a new oncologist. If I can make one suggestion for cancer fighters it is to find a doctor who gives you his or her cell number and assures you that it’s okay to use that number, and is a doctor who answers questions.
Treatment sucks, no matter what. I honestly can say that nothing surprised me. I knew it was going to rock my world in a way I can’t explain properly. I knew I was going to be sick. I knew I’d just have to put my head down and do work. Okay, maybe one thing surprised me: I didn’t have a complete response from chemo. I was hopeful that I would, but that wasn’t the case. Now I know that some people don’t fully respond to chemotherapy, and that’s okay. For some reason I thought that chemo was going to take it all away magically and I wouldn’t need a double mastectomy. Basic life lesson: No two people are the same. We all know that, but do we always believe it? Hell no! We all desire to have the best outcome, but we need to prepare ourselves for when it’s not.
The outpouring of love and support from friends and family has been endless, and continues even now, almost two years since my diagnosis. My parents, my husband’s parents, my sister and my husband’s sister were all there to offer any help and support we needed. We have the best friends who were always there to help with the kids as well. We have some amazing people in our corner! One awesome event was a huge fundraiser at my old place of work. I was a figure skating instructor for many years, so my amazing rink family came together and planned a skate night in my honor. It was pretty spectacular! If you have cancer, get yourself an amazing village, and don’t be afraid to lean on them.
My advice for new cancer patients
When someone is newly diagnosed, it is my pleasure and desire to help them! I want to be there for anyone and everyone who needs help. which is weird, I’ve always been a people person, but I mostly kept to myself, especially with health and female issues. Now, after cancer, I have this burning desire to put myself out there and just help. So, here are some very practical and honest thoughts about what I went through and some advice for you. I hope it helps.
100% would say to get a second opinion. Don’t go with the doctor you were sent to just because you feel rushed. There is time. My breast surgeon (whom I absolutely adore) told me this. She said we have time. I wish I had taken that advice seriously. I wish I had gotten a second opinion. I wish I had gotten another referral and checked out a few other doctors. Even though the process of getting a referral is a big ole pain in the butt, just do it! And if you are one of the lucky ones who don’t need a referral, go see ALL of the doctors until you find the perfect fit. You will be spending a lot of time at the oncologist’s office. You want to be comfortable with that person. Your oncologist will be your doctor, your therapist, and if you’re lucky, your friend by the end of your journey. You also want to be comfortable with the office staff. I unfortunately had major issues with the staff. Crazy to think that they didn’t have empathy when I was just so scared. Can you imagine getting a bitchy attitude from the staff and having to say to them, “gee, I sure am sorry that YOU’RE the one having a bad day!” That is absolutely unacceptable for an oncology office. If you don’t like the office because it doesn’t seem clean enough, request another doctor. You won’t be judged by that. I thought I would sound like huge a biotch if that was one of my reasons. I wish I had said something. It’s your life, your health, and you have the right to control that! BELIEVE THAT! You do have control. But I would also say, just breathe. The time right after diagnosis is scary. Deal with it how you need to. If you need to self-medicate, do it! If you need to work out your fears and frustration by working out, do it! If you need to sleep all day every day, do it!! But most of all, remember that “this too shall pass”. Just BE BRAVE! And seriously… ask Jesus to “take the wheel”. He really helps.
The actual process of chemo is really boring! Make sure you always have a ride to and from. The pre-meds are lit! Haha! A little pre-party before the heavy drugs are given! What is it about Benadryl in an IV? You will walk out feeling great, like a perfect little buzz from a nice night out. But this hangover is way worse than any you’ve had before. So make sure you have all of your anti-nausea meds ready. Keep up on them. Ask for dissolvable Zofran. If you get super sick like I did, you won’t be able to keep a regular pill down. And if the nausea and vomiting get so bad, ask for a suppository. If you need more tips on those bad boys, hit me up. I’m a pro. There weren’t any anti-nausea meds that worked. Trust me, I TRIED THEM ALL! I was so sick. If you are that sick and you throw up a ton, get to the ER as soon as possible for IV fluids. Don’t make the same mistake I did and end up in the ER almost in kidney failure and needing six bags of fluids! It’s rough, and not glamorous at all. During chemo, always have hard candy or cough drops to suck on! I used TheraBreath dry mouth lozenges. I put the link below. And I had Biotène spray on hand daily for the constant dry mouth! Don’t be surprised when it takes FOREVER for the dry mouth to go away! They say to bring a book, or movie or something to occupy your time, I honestly had more fun people watching! There was a guy there each time, and he kept me and my favorite nurse so entertained drinking about five Mountain Dews during his chemo, eating nasty sandwiches that reeked of raw onions, flossing his teeth in front of all of us, yelling at people over the phone, and disappearing for an hour at a time. ALWAYS entertaining! Bring a blanket! It’s freezing in there! But mostly, just try to relax! Key word… TRY!
Fortunately, I was able to forgo radiation. Praise the Lord for that one. I’ve heard that it’s a lot harder on some than chemo. So I really don’t have any tips for that! Except if you really feel like you don’t need it, find a doctor that will look into your scans and give you a straight up answer and one that is not just looking for the $$.
Emotions The emotional part of this journey is almost harder than the physical part. I journaled and put it all out there. It really helped a ton. But there will be dark days. That’s unavoidable. Let yourself sit in the darkness for as long as you need, but always try to pull yourself out of it. Find a community of women going through the same thing. Better yet, find one person you can text at any hour of the day. Having even one person who knows exactly what you are going through is key. I found my soul sister in the midst of this fight. She was going through leukemia treatments at the same time. Having her to message was what I needed. She got it. Even though she was all the way in Texas, she was and is always with me. We got to meet in the middle of our treatments, and it was amazing. Lots of tears shed with this girl, happy and sad! I get to see her in July, and we cannot wait! Love you so much Kelli!! #soulsisters
Which leads me to this: I wish that I had known from the beginning that I wasn’t alone. I felt incredibly alone. Unfortunately, breast cancer is perceived as an older woman’s disease. All of the informational pamphlets you are given only show women with wrinkles and white hair! That wasn’t me! I was a 35-year-old young and busy mom. I was scared and felt alone. But that’s not the case at all! During my treatment, I had no clue about the wonderful community of young cancer thrivers and survivors. I would look at my healthy friends and family and be incredibly jealous of them. I thought I was the only 30-something out there dealing with cancer. It wasn’t fair! But I was so incredibly wrong. I wish I had reached out sooner! Don’t wait!
Just one more thing: Let’s take a minute to thank Walgreens for their newest ad about breast cancer. It shows women of all ages and backgrounds. Cancer doesn’t discriminate. I linked the commercial on the bottom of the page. Reach out, find your tribe of warriors and hold onto them!
Our lovely Woman Candy Wednesday this week is Lisa. Lisa’s attitude and her not wondering, “why me”, really made me smile. You can tell she is one inspiring lady. I’m so glad she shared her story with us.
Here is Lisa!
In early December of 2018, I was watching football with my husband. It was a Sunday and I was planning my week ahead (as most busy moms do). For the past year or so, once a month around my menstrual cycle, I had been experiencing tender breast. So on this day, I was feeling the side of my breasts, kinda under my armpits and on the left side, I felt a small lump. I then went into full self exam mode and felt again, and there was a definite lump. The panic in me happened, and my gut reaction was, well this is it. I have cancer. Then the optimist in me quickly rationalized that this was probably a benign Fibroadenoma. I had already had one of those in my early twenties. I had it removed and tested and I was fine. I thought this would go about the same. So I made a Dr. appointment, he confirmed there was something there but that it was probably just a cyst.
The day after Christmas, I went in for a sonogram, followed by a biopsy the next week and a diagnosis two days later. My ob/gyn came into the room and informed my that I had “just a little cancer”. I thought, what?! Who has “just a little”?! Either I have it or I don’t!
I knew right away that I wanted to be treated at UCSF (University of California San Francisco). They have some of the best doctors in the world and they have a Breast Cancer Treatment Center.
I found out in the weeks to follow that I was Triple Positive. That means that I am Estrogen (ER), Progesteron (PR) and HER2 Positive. I thought of course I tested triple positive, I am such a positive person! This type of cancer tends to be more aggressive so the decision was to have a lumpectomy first, then chemo, then radiation. After my lumpectomy, my cancer was staged as a diagnostic stage II and prognostic 1b. One of my lymph nodes tested positive, so my treatment includes six rounds of Chemo. It’s TCHP (Taxotere, Carboplatin, Herceptin and Perjeta). The first two are chemo drugs and the second two are antibodies. I will have chemo until July of this year, followed by 4 weeks of radiation (20 sessions total) then 8 months more of infusions every three weeks of the antibodies only, followed by a shot once a month for I don’t know how long, followed by 8-10 years of oral medication. All this, for “just a little” cancer.
Through all this, I never thought “why me”. I don’t know why. I guess maybe because I have never known anyone with breast cancer so I have always thought that either I will get it or someone close to me will. Since 1 in 8 women are diagnosed, I knew that chances are this cancer will impact my life at some point. I know that statistically speaking, it shouldn’t be me. I have done almost everything they say to prevent cancer. I am young (39), I have no family history, I breastfed all three of my children, I am not a drinker, I exercise very regularly and I eat well. I have had one break down. The week before my first chemo infusion. I don’t like not knowing what to expect and with chemo, even though my doctors did an excellent job of preparing me, there is no way to know how your body will react to the side effects.
My best advice to anyone beginning this journey, is to just prepare the best you can, get a team of doctors that you trust your life with and ask questions. For me, I have had to travel to each appointment to a bigger city (San Francisco). It’s about 1 hour 45 min. away, but my life is worth it. Also, get your support system in place. You will find out quickly who is there for you and who isn’t. I have the BEST husband. We were high school sweethearts, married young and going on 20 years of marriage. I want for nothing. He waits on me hand and foot, tracks my meds, gets me anything I want and knows what I need before I do. He’s made this whole thing so much easier. Also remember at your lowest points, the reason you are doing this. To live. The treatment is torture on your body physically, but remember what it’s doing. It’s killing cancer too! You will get through this, we will get through this.
Today’s WCW is Candy. Candy reached out to me on Instagram wanting to share her story with us! Thank you so much for sharing your journey!
Hi, my name is Candy and my journey started in August 2017. Years ago I attended a health fair and I was told that since I had large breasts, I would need to be creative in my self checks. They suggested things like bending over or laying on my side when performing the checks. I hadn’t been as diligent as I should have been and one evening, I was in bed and was like, Oh My!!!! I haven’t done a check in a few months. So, I was doing my self check and was reaching under my left breast and I felt something. No Way!!! This can’t be!!!! I kept feeling the lump and checking on the right side.
The next morning, I call the doctor’s office to get a diagnostic mammogram set up. By the time I went in for my check up and mammogram, I had found a second mass. I pointed it out to the technician performing my scans. They suggested I have an ultrasound. When I went for the ultrasound, the doctor showed me how the first mass looked suspicious and the second one looked like it was a cyst. The biopsy appointment was set up within the next few days, and 3 days later I hear, “It’s Cancer”. I was at work when I got the call and decided to take it because it was at the end of the day and the weekend and I was not going to wait till Monday for the results. I broke down when I heard the news. My husband came to pick me up from work. I went home and immediately got call from one of my closest childhood friends. One of the doctors that I work with has known her forever and called to tell her the news. I was extremely touched that he took the time to contact her knowing that I needed her.
They had an appointment set up with the surgeon consult 3 days later. I met my surgeon and we talked about my options. They suggested a lumpectomy with reconstruction. I made the joke, I didn’t want her to rebuild to match my other breast, I wanted a reduction. She said that is something I could do, and yes I wanted to do this. I remember after my consultation, she had the technicians ultrasound the area under my arm to see if it looked like it had spread to my lymph nodes. I remember the tech saying that the mass looked so much smaller than it felt. The surgery was set for 3 weeks later. They wanted to perform a MRI as well because I had so many cysts in my breast.
The MRI for me was horrible. I almost hit the panic button. The results came back that the original mass was triple in size, and the second one I had felt was showing it could be cancer. Both of my breast were lighting up on the scan. We had to do a biopsy on the second mass. It came back showing it was in fact cancer. I had to have a biopsy via MRI on my right breast which came back negative. So next was surgery.
Wow, was this an experience. They marked where they were removing the masses and the reconstruction on both breast. During the surgery, my doctor said that she could tell that 4 of the lymph nodes had cancer. She biopsied 4 more and they came back positive. She removed all of the nodes and all but one had cancer. At my doctors visit, my initial Staging was Stage 2A. After my surgery I was Stage 3. After recovering from my surgeries ( I had to go back 4 days later for emergency surgery. My left breast got a hematoma and was bleeding and swelling), I met with my Oncologist. We went over my treatments. I would be getting 8 rounds of chemo total. I would be getting them every 2 weeks, then I would meet with the Radiologist and discuss the next treatment. My Oncologist wanted to do a Pet Scan first to make sure that the cancer hadn’t spread further. The scan showed that the lymph nodes by my lung and trachea was possibly cancer. Immediately, the next day, I was having them biopsied. When I woke up from the procedure, the doctor immediately told me that it was cancer, but it will be sent to the pathologist to confirm. At this point, I think hearing that news was the hardest for me. I felt like every time I turned around, bang more cancer. This was my breaking point. I was not going to survive this. I went from starting with Stage 2 to Stage 4.
I feel very lucky for the doctors that were part of my treatment. My oncologist treated my aggressive cancer with aggressive treatments. The chemo was tough on me. The first 4 that caused nausea and hair loss, I slept through. I was off 10 days after chemo, then worked 3 days. The second 4 of the chemo treatments, I felt like my bones and muscles were being attacked. I was off a week and worked a week. I’m very grateful to my co workers who helped with my schedules, and my family and friends who went to every treatment and kept my spirits up. My chemo sessions were sometimes called the party area. We livened the place up!
I had 39 radiation treatments total. I am very fair and surprisingly I didn’t burn as bad as I thought I would had. I had my second pet scan before radiation and it showed that the two lymph nodes by my trachea were showing no activity, and the one by my lung had shrunk from 7.3 cm to 1.7. My symbolism is the Sun. When I found out I had cancer, I lost all my rays. At this point and the news of the pet scan, the rays were coming back to my sun. I was literally walking on sunshine and I think it became my theme song.
I finished radiation, and I started on Letrozole instead of Tamoxifen because Chemo kicked me into menopause. I also started on Ibrance. The combination was to suppress my hormones and shrink my tumors and prevent any other tumors from growing. Two PET scans later and I am NEAD, No Evidence of Active Disease. Words I never thought I would hear.
More rays for my sunshine.
I started following Laura because Amy from the Bobby Bones Show had shared her picture after her surgery and I was like, Hey I took a picture too in the surgery bra. She has been an inspiration. I started my journey before her but Laura and others are keeping my spirits up.
I didn’t really do a hashtag but I love hers. Ta Ta to Cancer. I have loved saying Ta Ta and want to keep saying Ta Ta. I am enjoying reading everyone’s journey and hope you enjoy mine.
Any of you guys following my journey know that I praise my Plastic Surgeon, Dr. Jacob Unger, all of the time. Literally it was a blessing that my breast surgeon, Dr Whitworth, referred me to him for breast reconstruction. His work is SO natural. He is a true artist. You can find Dr. Unger at Maxwell Aesthetics in Nashville, TN.
While I was going to his office, I met Tracy Jensen. I decided after seeing some of her results, and hearing rave reviews from her clients, that I would go to her for something I’ve been thinking about for a while. Fillers. I was SO nervous to go to anyone for fillers. I wanted to make sure that I could achieve a good result without looking like a chipmunk. You know what I mean. Just look at any of the Real Housewives… No thanks. So after meeting with her and discussing my concerns we came up with a plan. I immediately felt at ease.
Then came injection day! Tracy put some numbing cream on my cheeks to help with any discomfort. I will admit I have a pretty ok pain tolerance, but if I was going to score how bad it hurt I would say about a 2.5 out of 10. It doesn’t feel good, but it isn’t bad at all. The best part is I could see results immediately. Honestly if I never told anyone I had it done, you guys would never notice. But I notice. I have cheek “bones” now! I can’t even tell you how happy I am with the results. So natural and only one small spot had a little bruise (totally expected) that I covered up easily with makeup. I am so glad I found Tracy! If you are in the area and are interested in fillers, set up an appointment with her. She is the best!
Here are my before and after! You can see how there is more volume and an added benefit is it helps thin the lower face! Win/Win!
I had Tracy answer some questions that you guys asked me on Instagram. So here is Tracy!!! #injectionqueen 🙂
My background: I have been a Nurse Practitioner working in aesthetics for over 6 years. I love my job- I love the artistry and I love working with my patients to achieve their goals. I went to University of Alabama for my undergraduate degree, and I completed my Masters in Nursing at Vanderbilt University. I am married, and I have 2 little girls, and we love living in Nashville.
What are fillers made of?
The dermal fillers that we use at Maxwell Aesthetics, are all made from hyaluronic acid. Hyaluronic acid is a naturally occurring substance in the body, so there is little risk for allergy when injected into humans.The hyaluronic acid molecules are suspended in a gel, and that gel is what we inject.
How long does filler last?
The longevity of your filler treatment is based largely on the product that is injected. On Laura, I used Juvederm Ultra Plus. This product lasts about 9 to 12 months, for most patients. It is important to ask about longevity, as it can range anywhere from 6 months to 2 years, depending on the product!
How painful is it?
Filler injections are not THAT painful! We use a topical numbing agent that sits on the skin for about 10-15 minutes prior to the injection. Most patients would report that their pain is mild to moderate, and quite short-lived. I have never had a patient that couldn’t tolerate the injection!
Is there any downtime after treatment?
Yes- there certainly can be! I want all of my patients to plan for bruising. It typically occurs less than 50% of the time, but we do not have good control over who will, or who will not, bruise so I ask that everyone be prepared for that. Swelling is also very common, and usually resolves in about 48 hours.
Does filler help with acne scars?
This is a tough question! This question is best answered on a case by case basis. Often times, acne scars are better treated by lasers or micro-needling types of treatments. Fillers can be used, but again, this would something best discussed face to face with a provider, as there is great variability in the appearance of acne scars.
What is a good filler for lip lines that won’t give you the duck lips?
There are a couple of good options for patients that are wanting to treat lip lines without adding too much volume. I like using Volbella and Refyne. Both of these products will smooth the area, without adding a lot of bulk, preventing the duck lips from happening!
How do you know how much to use to make it look natural?
Every patient is different- it is very important to assess the patient and have a discussion about the patient’s goals, and what are realistic expectations. Most patients get 1-2 syringes, and we can space that out over several visits, so that results are very natural appearing.
Can guys get it?
Yes! We see male patients all the time in our office. While this was once thought of a very female thing, I can assure you that is no longer the case! Male patients are very interested in maintaining their youth, and botox and filler injections, along with good skincare, are a great way to do this!
Thank you Tracy! You can find Tracy on Instagram Here .
I am totally humbled that Lesly has chosen to share her story with us today. Lesly was the first one I reached out to when I knew I was going to be needing chemo. I remember her and a friend of ours going to my first wig appointment at HPI. I said to Kimberly, the owner of HPI, that I was more traumatized by the thought of losing my hair than I was losing my breasts”. Lesly looked at me and laughed and said she legit said the same thing!
Lesly is one of my heros. I’m so lucky to have had her in my life during that unknown journey, and I’m so glad she is in my life now to help each other learn how to navigate this new life of ours.
Enough of my babbling! Here is Lesly!
Laura is one amazing lady! We met through mutual friends just after her diagnosis. I was about 6 months ahead of her in my BC journey, and I met her at her first wig appointment. Her spirit and joy were infectious. Like many women I have met in “the club you never want to join,” she was strong and full of positivity. I continue to be inspired by her courage in sharing her story. Early on, I was told by another friend in the club, “you can’t feel angry that your diagnosis is worse than some nor can you feel guilty that yours is better than others.” She was spot on. At the time I was already feeling both of those things. As I look back over the last 2 years, I realize that for whatever reason, this is part of my path. I choose to be better because of it and I am so grateful for the lightness I feel on the other side.
I am 46 years old, live in Birmingham, AL with my family – my husband, Robert, and his 2 great kids Max (17) and Miller (14). I am also career woman, traveling to Nashville (and all over the country) with my work. On June 26, 2017, I was diagnosed with breast cancer. I had always been a big planner, super organized and highly focused. Needless to say, this diagnosis was not something I was expecting and it hit me like a ton of bricks.
A little backstory first. I had been married previously in my late 30s and spent 5 years desperately trying to have children with my first husband. Seven miscarriages, multiple drugs, shots, surgery, IVF, etc consumed me in that period of time. I read as much as I could about infertility and everything surrounding it. Somewhere along the way, I read about increased cases of breast cancer in women on a similar infertility path, and it stuck with me. I don’t remember exactly what it was or what drug it was linked to, and truthfully, that part doesn’t matter. What is significant, is at that point, I started doing self breast exams every month. In the Spring of 2016, I found 2 lumps in my left breast. My breast tissue was too dense to show anything on a mammogram, so an ultrasound was ordered….it revealed 2 cysts. I had them aspirated and tested, and all came back fine. No big deal! In April of 2017, I found another lump in same breast. I was not overly concerned…it seemed just like the first cysts to me, and it was on the same side. I already had a mammogram scheduled for June 19th, and Robert, and I were getting ready for a 2 week trip to Israel, so I decided to wait and have it checked when I was scheduled in June. The NP doing my exam that day, had a difficult time finding it, at first. When she did, she explained that it didn’t feel like a cyst, and because of my dense breast tissue, she wanted me to have an ultrasound, as well. After my infertility struggles and miscarriages, I had come to recognize when an ultrasound wasn’t looking good. And THIS was one of THOSE ultrasounds. They could not give me a definitive answer that day, but I saw the concern and asked the radiologist to send my results to my friend who was a surgeon. I was traveling for work that week and just pulling into Nashville when his office called to schedule a biopsy…immediately. Friday morning, we had it done and Monday, Robert and I went together to hear the results from Dr. Fischer. I had known Philip since High School and he is married to one of my best friends. I can’t imagine what it was like for him to give Robert and me the news, but he did with the utmost compassion and care. Hearing those words, “it’s cancer,” is not anything I can describe. It was terrifying and numbing (and a whole lot of other emotions) all at once. But the shock could only last a minute, because reality was about to set in. I had to figure out exactly what I was dealing with and how to get rid of it. My cancer was diagnosed as Stage II, grade 2 invasive ductal carcinoma, hormone positive and HER2 negative.
Robert was my rock. I am a pretty private person. I only wanted to talk to the few people who could really help me determine the best course of action, and get me moving. I called and told my parents, asking them to share the news with my siblings and my huge extended family. Robert told the kids, his mom (Marcia), his sister (Carrie), the rest of our extended family and closest friends. My friend and co-worker (also a cancer survivor), Mandy, shared the news for me with my work family and business associates. I was so overwhelmed by the diagnosis, and I needed to process it. Because of that, I was not comfortable talking about it or sharing it on social media. My key people…Robert, Carrie, my Mom and Mandy, helped manage those early conversations for me. Once I understood what I was dealing with and had my surgery scheduled, I sent an email to my friends and family sharing the plan. I will forever be impacted by the strength my friends and family gave me at that time. It humbles me still today.
In gathering information, I knew I wanted more than one opinion. I quickly realized there was no ONE WAY to treat this disease, but there were options based on my specific cancer, my age, my health, my oncotype score, etc. I went to a second hospital for another opinion. It was drastically different than the first and I left in tears – full blown ugly-crying breakdown. I was lucky enough to have connections to 2 additional oncologists in other cities – one being one of the leading breast cancer oncologists in the country. My discussions with them confirmed my gut instinct and I chose my treatment plan. I opted for a radical mastectomy and reconstruction first. Dr Fischer did the mastectomy, followed by Dr. Steinmetz doing the reconstruction the same day, then Dr. Piede at the Bruno Cancer Center took over after surgery as my oncologist. The surgery was a success. The path and test results concluded clear margins, no cancer in the lymph nodes, but a high enough oncotype score that I would need chemo. The good news – only 4 rounds of Taxotere and Cytoxan…no RED DEVIL and no radiation! Small but monumental victories to me!
IMPORTANT NOTE – there truly is no ONE RIGHT treatment plan. Every person and their exact plan is as unique as their specific cancer and their DNA. Right after my diagnosis, I found a lot of well-meaning friends wanted to share with me what they thought I should do. Those opinions came from a place of love and support, but they were not what I needed. I had already connected to a few women who were members of the club. Those women helped me understand that the only people that could determine my route were my doctors, Robert and me.
There were so many unknowns going into the surgery and treatment. I had never been under anesthesia for more than a couple of hours, and I was under for 9 hours for the mastectomy/ beginning reconstruction/ expanders. I was not prepared for how difficult the “hangover” from that amount of anesthesia would be…nor for the discomfort, the inability to do almost anything that required my arms, the pure ick of drains, etc. I was exhausted and struggled to remember things…everything it seemed. I had a note pad with me all of the time. Once treatment started, I was determined to NOT have a port. I didn’t want the reminder in between treatments (mine were 21 days apart) that I was “in treatment.” I obviously didn’t realize that looking in the mirror would be a constant reminder (being bald will do that to you). Truthfully, being in treatment was the 1 thing I DID remember…everything else was a struggle (YES – chemo brain is a real thing)! On top of that, I did not realize how hard the chemos would be on my veins. By my last treatment it took my nurses close to 2 hours to get a vein to hold up for me. If I had to do it over again, or if I was asked for advice from someone new to the club, I would say – GET THE PORT! There is a reason for it!
Losing your hair sucks! It’s that simple. I didn’t realize it until the day we shaved off my few remaining straggles, but emotionally, it feels like losing an appendage. I had a much harder time losing my hair than I did losing my breasts. Think about it – most women have never seen themselves without hair. I certainly had not. I had 2 girlfriends with me when that last little bit came off. They brought wine and wigs and made sure to keep my spirits high. We went to HPI (the amazing women in Nashville who custom made my wig), let them shave what was left and do my final wig fitting. I was looking at my friends as the clippers cleaned up my bare scalp, then I turned to face the mirror. All I could do was cry. When I saw myself bald for the first time, it was like I lost part of my identity in that moment. Add to that, the reality check that most acquaintances and strangers had no clue about my diagnosis at that point. The new bald head would change that – now everyone would know I had the “C.” Those first 2 days were tough. But then, I started to get comfortable with it. I guess I really started to get comfortable with myself. I was managing major changes to my body, while managing nausea, exhaustion, mouth soars, hot flashes, headaches, body aches, the list goes on, and also trying to keep up with every other aspect of my life. It was a lot! But then, I eventually started to appreciate how easy it was to NOT have hair. I wore my wig when I went out or to meetings and events, but when I was home, working out, going to the grocery, living everyday life, I wore a hat or a scarf. Eventually the freedom of being bald helped me learn how to not to sweat the small stuff.
I did get some great advice from my fellow club members and from my primary physician’s nurse (Pam was a former oncology nurse). Hydrate, Hydrate Hydrate! Pam told me specifically 40 oz of Gatorade or G2 starting the Sunday before my Wednesday treatments, plus 60 oz of water each day. I was religious about getting my fluids and it paid off. I also exercised everyday. I have always worked out – I am a runner and have a trainer 2 days a week. After surgery, as soon as I got the green light to walk, I started walking outside. I continued that during chemo. Dr. Piede, said it made a huge difference in my overall health and how I handled treatment. There were some days I was shuffling more than walking, others I could barely make it to the end of the driveway, but I tried to do something, even if just for fresh air. I always had a friend or my mom with me to make sure I made it back ok (some days were questionable). Those walks and visits with friends were as important to my mental and emotional health as they were to regaining my physical strength. I also set a goal during treatment to do a 10k Thanksgiving week. I realize this is a bit crazy and not the right goal for everyone, but for me, it was pure motivation. We were going to Rosemary Beach for Thanksgiving and it was supposed to be the week of my last round of treatment. Because of the holiday, Dr Piede let me push treatment to the following week, giving me an extra week of recovery between my 3rd and 4th rounds of chemo. With his blessing, I signed up for the race. On my good days between treatment (I was typically down for 5-7 days, then gradually improved over the next 14 days) I would walk/ jog 2-4 miles each day. When race day came, I had no clue if I would make it. Two friends joined me for the race, talking and running with me all 6 miles. I cannot remember how we did, but it did not matter – we finished! Robert and our family were cheering us on at the finish line. It was the best Thanksgiving I have ever had. A couple other little tidbits:
Chemo nurses are amazing. My friend, Laine, who was about 6 months ahead of me in treatment, told me early on to meet and get to know my chemo nurses. I did and Kim and Lorie became my angels.
Rest is one of the most important things you can do. You really cannot get too much of it. Rest your mind, your body and your soul. They all need it.
Anything that comes up in your body that feels off or weird or abnormal – tell your doctor. Even if it feels insignificant, tell them. You are the only person who can communicate what is happening in your body to your doctor – don’t shy away from sharing that information.
Chemo brain is real. The change in my brain, my memory, my ability to find vocabulary…it was all so frustrating. I still take notes in every phone call, every meeting, all day long. Find what works for you to give you confidence to make your way through that obstacle. It does improve and I still have hope it will be back 100%. Acknowledging that it exists and being honest about it, rather than trying to hide it from everyone (including yourself), makes it easier to manage. It is OK! And on the bright side, I really don’t remember my worst days after chemo!
Being the sounding board for “new members” the way so many women were for me is an amazing way to perpetuate kindness, hope and love. We need more of those qualities in this world and I have yet to meet a woman on this path who is not a shining beacon for all of it!
I am on Arimidex now and for the next 10 years. I went through 4 AI’s to find this one. The menopause symptoms are REAL, but they eventually settle. The bone pain is no joke, but it calms down too. I met the most amazing woman in my travels last month. Her name is Amy and she is Stage IV Metastatic BC. After 7 years post her first diagnosis (hormone +, HER2 -), treatment and an AI, she is in the battle again. But she is gorgeous and strong and HAPPY! She is living life FULLY! Another member of the club whose presence inspires me. In this whole experience, I had to learn to let things go. Historically, I had been a bit of a worrier. My family and I were not expecting to get this diagnosis when we did, but then no one is. If you are reading this, you know first hand that cancer does not discriminate. It is painfully cruel and systemically hard for everyone affected by it. You have to educate yourself on YOUR version of the disease as quickly and thoroughly as possible, and preferably, without getting on the internet. Both hospitals gave me information from the American Cancer Society on MY specific cancer and on breast cancer in general. I read all of it. I compiled questions from that research for my oncologist and my oncology contacts. I insisted on being informed so I could clearly weigh my options. I also respectfully thanked advice-giving friends who had not personally experienced a similar cancer and stayed away from engaging in their opinions. I read books, I listened to podcasts. Not just about the disease, but about life and living… fully, joyfully and with purpose. I continued to work, setting short term and long term goals that gave me something to look forward to on the days when I felt terrible. Accomplishing those goals when I felt good gave me hope and strength. I kept a spreadsheet of every person that reached out to me, and I thanked them personally with a written note or email or text. The pure love from my people was amazing. Telling them how important they were to my recovery, energized me and gave me the opportunity to share and spread the gratitude that enveloped me.
I am just over a year post final reconstruction and 16 months post final chemo. The experience of my cancer- the entire experience – is one of the most transformative in my life. I found grace in tragedy. I believe that cancer (or any life set back) can make you better, kinder, wiser, happier, stronger, more humble, more loving if you choose to open your heart and soul to that transformation. And I now know that when I lost my hair I didn’t lose my identity, it was really just the beginning of discovering who I really am.
You can follow Lesly on instagram at @leslysimon72
I’m Blair! I am a mom, wife, hairstylist and SURVIVOR. I am a Tennessee native, born and raised in a small town north of Nashville called White House before moving to my current home of Gallatin. My journey with breast cancer started when I was just 25years old. I am now 26 years old and have 3 babies under the age of 5 with my husband of 5 years, Spencer.
My life changed last year when I felt a lump while showering, when I was 34 weeks pregnant with my 3rdbaby. I went to the doctor and had the lump checked. After they performed an ultrasound, I was told I would need a biopsy. When my results came back I was home alone with my oldest and my middle child. I will never forget that day because it was February 2nd, my husband’s birthday. I received the news I’d hoped I wouldn’t be hearing. It was cancer. As soon as I hung up the phone with my OB I called my husband, then my parents and my sister right away to deliver the not so great news. While they already knew cancer was suspected we didn’t believe this would be happening.
I was diagnosed with a hormone positive (Estrogen and Progesterone positive), HER2 negative, stage 2 breast cancer. By definition ER/PR positive breast cancer is fueled by hormones, therefore my cancer was feeding off of my pregnancy as my body was naturally producing more of the hormones the tumor responded to. My doctors told me once my daughter was born there was a small chance my cancer staging could reduce due to my main supply of hormones being cut back. Thankfully this rang true and after my double mastectomy in March 2018, my final pathology came back to be stage 1.
Prior to my double mastectomy I delivered my daughter at 35 weeks and 6 days, just 2 weeks after finding my lump! In order to determine the next steps for my treatment I had to wait for all my milk to dry up and have an MRI of my breast. When I went in for the test I had a panic attack and wasn’t able to complete the MRI. I then saw the general surgeon on my case and had genetic testing, all of which was negative for any cancer linking genetic deformities such as BRCA 1 and 2. At this time the biopsy tissue was also tested to determine which hormones my cancer was fed by. Once we had these results I met with my oncologist who determined I would be having a double mastectomy without any upfront treatment.
For those of you who have had a mastectomy, you may be able to relate to my surprise when I found how limited my strength was afterwards. You just don’t realize how many muscles and how much strength you pull from that area in everyday life. Just sitting up for the first month or so I had to have help from someone. This procedure is not for the faint of heart. If there is one thing I wish I would’ve known, it would be to have research more options on reconstruction and advocate for myself more on exactly what I wanted! I’m learning to love myself, but to only be 26 it’s very hard to accept my body for what it is now. I feel if I would have been more informed and were able to make choices for myself prior to the surgeries, I would’ve been happier about my new body.
If you are just diagnosed I would recommend you DO YOUR RESEARCH. It’s kind of a double edged sword, because in doing so you can totally scare yourself by things you can read and not fully understand. On the other hand, by doing so you can fully present yourself with every option and ask every question/concern you have, to put your mind and heart at ease.
The other side to the process is the mental/emotional side. I am not an emotional person. I do not like for anyone to view me as weak or emotional, but through all of this it was very hard not to be. If I could give one piece of advice to help someone mentally and emotionally go through their journey, it would be to keep yourself busy and surrounded by people who love you, support you, and will always keep you laughing. My family, friends, and babies kept me going strong and moving forward through this entire journey. Every day is new and while it may not be what you wanted you take the cards you are dealt, you lean on the ones you love and love you, and you trust in the Lord to get you through!
My journey was definitely the furthest thing from easy, but it could’ve been a lot worse. I am so blessed and thankful to say, that as of March 12th, 2019, I am 1 year cancer free, and hoping and praying for many more years. I am thankful for all the support and love I received throughout my journey and would love nothing more than to be a rock for someone else experiencing breast cancer. If you need me I’m here.
Hi guys! Laura here. I’m so excited to begin sharing YOUR journeys. I will be posting my #wcw every Wednesday. I’ve already had such an amazing response! Email me at email@example.com to share your story.
Now for my first rockstar! Here is Amanda. 💜
I have Stage IV metastatic breast cancer that is HER2 positive and hormone negative. It is in both breasts, lymph nodes throughout my body, my liver and my spine. I am still currently doing chemo. I thought I was done with that but my oncologist and I decided to do a few more rounds. Hoping to get to NED! And I will receive targeted therapy via infusion every three weeks for the rest of my life. I remain hopeful because lots of strides are being made with HER2 positive breast cancer.
How I found out: I was following your (Laura) journey so breast cancer was at the forefront of my mind when I had a pain in my right armpit that just would not go away. After several weeks of dealing with that pain and after finding a lump, I decided to go have a mammogram. The mammogram uncovered what they called “suspicious calcifications” so they did an ultrasound, too. The radiologist told me that very day that he was sure I had DCIS. That same week I was referred to a Surgical Oncologist who biopsied the lymph nodes in my armpit as well as tissue in my right breast. The next week I found out I had at least Stage II breast cancer. Within the next two weeks I had an MRI and a PET scan, had my chemo port put in and had a liver biopsy. I also found out I am hormone negative, HER2 positive. A couple days after I had the liver biopsy it was confirmed that I have Stage IV breast cancer with mets to my lymph nodes, liver and spine. It was a very fast diagnosis.
How I told my loved ones: Because things were happening so fast my family was on the ride with me. After the mammogram when I was told I likely had DCIS, I immediately called my husband and my mom. Both of my parents as well as my husbands parents were very much involved in the entire diagnosis process from taking me to doctors appointments to staying at our house to help with my kids. I’m so grateful that I had so much support surrounding me because I would not have been able to hold myself up. My family held me up. Telling my kids was challenging more for me than for them. They are both so young that they hardly understand. The know Mama is sick but they don’t understand the magnitude of it all. And I honestly don’t want them to. I don’t want them to be afraid that I might leave them one day. It hurts to even write that. They’re not ready for that. I’m not ready for that.
Steps my doctor took towards treatment: Because my diagnosis happened so fast I was getting my treatment plan quickly, too. Once they had all of my scan and biopsy results as well as my cancer type, it was go time. The diagnosis was harder than the treatment plan as far as waiting. Once my oncologist had all the information he knew exactly what he wanted to do. My family and I consulted with MD Anderson and toyed with me going there for treatments, but I ultimately decided that I was happy with my current oncologist and that it was better for me to be home. I didn’t want to uproot my kids and I was not about to be away from them not knowing what my life expectancy was.
One thing that surprised me about treatment: I was taken aback that I would not be having a double mastectomy. I had mentally prepared for that. I actually stood in the mirror and said goodbye to my breasts. I was ready. I was actually looking forward to it. I thought by getting rid of the girls I would be cutting the head off the snake. When I found out that surgery was not something that would be beneficial for me I was actually really upset. We always hear the saying “cut the cancer from your life.” I wanted to literally do that. My best friend explained it to me best; she got this analogy from someone she spoke to. Metastatic breast cancer is like a dandelion that we blow in the wind. When its a perfect ball, cutting the head off means its gone. Done. It can’t go anywhere from there. But, if we blow it first, all the little pieces go everywhere. So, cutting the head off then doesn’t really make a difference. The pieces are already everywhere. So, since my cancer had already spread, having a mastectomy didn’t offer any benefit.
What tips would you give someone just diagnosed: 1)Stay off the internet. Don’t google your statistics. Its scary and its gut-wrenching and it won’t help. And those statistics don’t have to be your statistic. 2)Find somebody who you can relate to to talk to. Whether its a family member or a friend, or even someone you follow on social media. Reach out to somebody who understands what you’re going through. Breast cancer can feel like a very lonely disease and its unlikely that the people surrounding you will truly understand what you’re feeling. But there are people out there who do understand. And I have not come across one person with breast cancer who hasn’t greeted me with open arms. And it has saved me. 3)Don’t stop living your life. Cancer can take over. You will be devastated and sad and that’s ok. But keep doing what makes you happy. Keep living. Its more important now that ever. Your mental health depends on it. You will find your strength.
What tips for chemo: So many! You (Laura) gave me so many that made my life so much easier as it relates to side effects. So I’d recommend anyone about to start chemo to find somebody who’s done it or currently in it and get all the info you can. I live for Claritin for bone pain (that shit really works) and ice packs for neuropathy!
Tips for emotional/mental part: Again, don’t stop living your life. It will have to alter, of course, due to treatment, surgery, side effects, etc. But keep doing things that you want to do. Especially when you feel good. Take advantage of those good days and enjoy them. I truly believe that continuing working out and doing date nights and getting together with my friends has helped me stay strong. I decided that the things I enjoy don’t have to become things I did before breast cancer. I’m not giving this disease that power. And also, give yourself a break. You are going to break down. You are going to cry. You are going to get angry. And all of that is ok. It does not make you less strong. In fact, I think being honest about how you’re feeling makes you a warrior.
One thing I wish I’d known: I wish I’d known that the beginning is not the end. When I was getting diagnosed and going through all of the scans and port surgery and getting my treatment plan, it felt like all of it may be for only a few months of life. It was a dark place. But that’s not the case. Diagnosis is excruciating. But its not the beginning of the end. Its just the beginning of a different life.
My mantra: I don’t know that I have a mantra, per say. I just have refused to let this cancer define me or take over my life. I’m still me. Cancer is something I have to deal with, not who I am.
This time last year I was going into the hospital to have my cancer removed. I didn’t know what to expect. I didn’t know if it was in my lymph nodes or not. I just knew that whatever the case, I would be waking up from surgery with no cancer in my body. Just knowing that, made me feel at peace. At this time the only people that knew where my family and a few friends. I didn’t know how I wanted to share this news. From day one I knew I had to do something to make this worth while. I really truly believe God wanted me to use this hard time in my life to help others and open younger women’s eyes to realize this could happen to women at any age.
Thinking back on the fact that I had no real fears in making my decision to have a double mastectomy is crazy. One reason is because I trusted my plastic surgeon Dr. Unger completely. He is truly an artist. But also I believe God led me to that decision.
So here I am one year later. I am not the same person I was before. And for that I’m thankful.
After surgery we found out I would need chemo and radiation. I had a CT scan done and there was NED. (No evidence of Disease). I don’t like saying I’m cancer free. Maybe I’m scared of jinxing myself. But I at this moment have had no evidence of disease for one year.
Just want to send a thank you to my family who has been by my side through the tears and the smiles. For my friends who have become family. And to my boyfriend who has become my soulmate. I love you all. And last but definitely not least, thank you to the people I haven’t ever met but feel like friends. You guys have followed me, prayed for me, made me feel loved and supported.
I’m excited to see what this next year has in store for me.
I love y’all!
I’ll leave you with a few pics. Starting from one year ago, and going to the last picture of me celebrating with some of my new breastie friends.