I was diagnosed with breast cancer on April 11, 2019. It was then found that it was HER2 negative and strongly HR/PR 90% positive. After a double mastectomy on May 2nd 2019 I was blessed to have it staged 1A!
All of May as I went through the majority of the recovery and expansion process for silicone implants I anxiously awaited a follow up appointment with both chemo oncology and radiation oncology.
As I spoke about in a previous post the follow up was not as clear or handled as well as I would have preferred. For example, I received a call that I needed a stat Echocardiogram a few days after my double mastectomy, yet was never told by my oncologist that they wished for me to do chemo.
To say this was frustrating is a true understatement. But, unfortunately, it gets even more frustrating. I asked three times to receive something called an Oncotype, from a stand out study called TailoRx throughout the month of May, yet at my follow up appointment the end of May with my chemo oncologist I showed up and the following series of events occurred … none of which ended up with me having my oncotype score to my utter astonishment.
[[Here is a patient friendly explanation of who the oncotype is used in as well as a link to the article in case you or a loved one needs to know about it.]]
The trial used a molecular test (Oncotype DX Breast Recurrence Score) that assesses the expression of 21 genes associated with breast cancer recurrence to assign women with early-stage, HR-positive, HER2-negative, axillary lymph node–negative breast cancer to the most appropriate and effective post-operative treatment.
Back to my day of temper tantrums! While checking in for my appointment with the secretary… she questions why I have yet to get an echocardiogram – I explain that it is quite hard to get an echo in the first couple of weeks post op from a double mastectomy when you have drains and can’t touch your chest – also that since no one ever technically informed me as to why I would need one – I decided to ignore it. I don’t advertise or believe that any one reading this should 100% ignore a physician request … but, I also believe you should know exactly why you are having certain tests and procedures done. I knew from my pharmacist education an echo was needed baseline for a particular likely chemo treatment – and was very upset no one felt it necessary to call and talk me through that prior to having the cardiovascular institute tell me “I needed to come in ASAP.”
I will pause here – although that situation was beyond frustrating, It actually ended up allowing me to help someone. One of the women at the cardiovascular institute that I kept telling, “no I’m not coming call me again in a week” opened up about being concerned about her own lump in a breast and being afraid to go to a doctor. I gave her quite the pep talk – I hope that by now she has been told it was benign and that she is feeling a lot less stressed ❤️
After check-in and by the time I got to my exam room and the nurse showed me 6 empty vials for blood draws for pre chemo infusions I about lost it. I have never wished there was a portable punching bag in my purse more than in that moment. I refused all lab draws…. and then had my vitals done (blood pressure 147/94 – normal 110s/80s and heart rate of 145 – normal around 60). I am a super easy person to have as a patient as you can tell ….I WAS IN FIGHT OR FLIGHT YALL AND MAN WAS THE FIGHT ABOUT TO GO DOWN!
I’m not going to try to recount the exact arguments that occurred between myself (with interjections and very impressive backup from my husband) and the chemo oncologist. But basically it came down to – I am really young and he felt that the only appropriate treatment was an anthracycline based chemo regimen and that he felt the Oncotype was not indicated so never ordered one. Lets leave it at …. there was an ongoing argument about Oncotype as well as a list of other things my husband and I had come up with as important questions to address.
I left the office FUMING. I couldn’t believe that this whole month I thought my oncotype was being derived and it hadn’t even been sent off. (That physician did get back to me and offer to go ahead and order an oncotype if it helped me feel confident in my decision to use chemo for treatment)
A few days later I had a follow up with my radiation oncologist who after confirming I would not need radiation, was able to refer me to another chemo oncologist in the area at UF. She hoped this second chemo oncologist would be able to better explain the use of oncotype in my specific case and how to pick treatment.
Thanks to this long awaited second follow up I FINALLY have found a sense of contentment and peace in my treatment plans going forward. I am so thankful. I am also anxious as I await my oncotype score (I seriously thought I had already been worried about this for weeks…. who knew I didn’t have any reason to be!! 🤦🏻♀️)
Here is the plan going forward! I have no idea as to what will come back as no one knows what 21 expressed genes are used to come up with a score, but as promised I will continue to take y’all through the whole process!
Low risk < 15: Start treatment with Tamoxifen daily for 5 years
Intermediate risk 15-25: Start treatment with Tamoxifen daily and Lupron injections (to suppress ovary estrogen release – if you look at TailoRx they believe this may be what helped decrease recurrence rates in these patients)
High Risk 26 or >: Start a taxane based chemotherapy (3 week cycles, four treatments in total) I would receive this via peripheral IV and would not need to undergo surgery insertion of a port.
I will know my resulted number in the next 10-14 days! In the title I noted that I have found peace in my plan. Would it be easiest to not go through chemo?! Of course !!! Is that preferred – well yes 100%. But I have realized – it doesn’t really matter what number comes back cause I have decided to focus on the following.
Although each thing that happens seems like a curve ball to me and I am unsure of what I am suppose to do – God always saw this coming. If he was up to bat he would knock it out of the park on the first swing, he doesn’t strike out. When I focus on the fact that he has been preparing me for this fight in so many ways for so many years… I breathe easier and have such a calmness about it all. Whatever it takes to be cured and continue to educate and help others, I will do. I am one of the lucky ones. Each day when I wake up I choose to remember that, I choose to have a great day, I choose to feel gratitude in knowing a cure is a likely outcome and I choose to face each part of this head on with the passion and zeal that I have for every other aspect of my life.
In closing, I would appreciate prayers as we await this result that dictates what the rest of 2019 will look like for me! It has been quite the wait knowing where we would be with all of this.. and I am getting very impatient.
If you have it in your heart to join my breast cancer walk team in Gainesville, Florida the event is in October and no matter the treatment plan that occurs – I will be there and my team has already raised over $4,000. That amazing trial that came up with this oncotype score which tells patients if they truly need chemo – the money for that trial was funded through people buying breast cancer post stamps. The little things add up. Continue to support and fight 💖
A special thanks to Judy Lynch Photography for my amazing photos. All from 2 nights prior to my double mastectomy !! Love you!
Until next time, keep your boxing gloves up!
Sami
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