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!
You can follow Toni’s journey on instagram!