Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.
After you are diagnosed with breast cancer, there is this flurry of activity that needs to happen. This is why they give you a nurse navigator – because the entire process is insane. Or maybe it just feels insane because your life was turned upside down? Either way – it is crazy. The strange thing is that while it is happening, you are getting asked about 5 million questions from other people who love you and just want the best for you. Overwhelming does not even begin to describe it – and, strangely, looking back to that time, which is now about 4 months ago, I didn’t have any concept of how much more overwhelming it was going to get. I am not sure if I even do now since I am still in the chemotherapy phase as I write this.
As an epidemiologist, I conduct medical research for a living and I love my job. However, when that is your job, it is almost a mental conflict of interest. It is like trying to serve as your own doctor. I made it my life’s mission to become an oncologist in less than a week. I lived on PubMed reading everything I could get my hands on. I scoured the NCCN guidelines. Then, a really good friend who also happens to be my past PhD advisor told me to cut it out and stop reading. He was right – all it did was give me anxiety. Sometimes, you just need to give it to God. I am not saying to be uninformed or not to be your own advocate, but at a certain point, you are starting to do harm.
Anyway…onto cancer staging. The next step was an MRI of both breasts. The scary thing about that MRI was that it had the ability to tell me if the cancer spread to lymph nodes and also whether it was present in the other breast. To be clear, cancer can spread on a microscopic level without it being seen on MRI. This is why some people have imaging that is “clear”, but then later find cancer in other places in their body. However, it is the first best guess they have as to extent of spread (they will check lymph nodes during surgery).
My MRI showed the following:
Left breast: 1.4 cm anterior-posterior by 1.2 cm transverse by 1.2 cm craniocaudal irregular, enhancing mass in the deep outer, lower left breast. No additional suspicious enhancements.
So all they saw on the left side was what they already knew I had (whew!). However, what they also found were 3 nodules in the right breast (ugh!). These were very small and they thought they were benign based on the imaging, but they also thought my original mass was benign, so I had to have an MRI guided biopsy to further evaluate them. Thankfully, those did turn out to be benign.
When all was said and done, here is where I landed:
Stage 1c
- T1c (~1.2 cm mass)
- N0 (no lymph nodes on MRI)
- Mx (low risk of metastases)
Treatment
- Neoadjuvant chemotherapy: Adriamycin (aka doxorubicin) and cytoxan (aka cyclophosphamide) once every 2 weeks for 4 cycles followed by taxol (aka paclitaxel) once every 2 weeks for 4 cycles
- Surgery: Lumpectomy with radiation OR single/double mastectomy (to be determined later)
Next Steps
- Have port placed (I admit this made me really nervous, but I am glad I did it – it is ugly looking, but made chemo, blood draws, etc. so much easier)
- Have echocardiogram to get clearance for adriamycin (adriamycin can damage the heart)
- Think about fertility and egg freezing (after 4 miscarriages I decided it was time to just let this go)
- Think about cold cap (this is a system that freezes your scalp to help minimize hair loss. Given that brain metastases is one of the common sites for breast cancer spread, I decided against this even though I knew the risk was small. Also, I knew someone who did it and her hair fell out anyway).
- Argue with insurance company who tried to deny my chemotherapy (I am not kidding – this actually happened. My doctor had to get on the phone and show them the NCCN guidelines so they would approve it)
- Talk to other breast surgeons and oncologists (Luckily, the good friend who I had referred to earlier in this post had published a lot in breast cancer and was able to connect me to some oncologists in different networks for informal second opinions. I was able to get 3 additional opinions really quickly, and they all agreed with the initial treatment plan. They pointed out some small deviations they might make, but generally, everyone was on the same page. That made me feel a lot more comfortable, especially considering that I was right on the cusp for getting neoadjuvant (before surgery) vs. adjuvant (after surgery) chemotherapy. Besides the fact that I was (am) a triple-negative patient and the cancer is aggressive, there were 3 main reasons that they decided on neoadjuvant chemotherapy: 1) It may take 2-4 weeks to get on surgery schedule and without chemo during that time, the tumor will continue to grow quickly; 2) after surgery, you cannot start chemotherapy for 4-6 weeks because you need to heal, so during that time if it had spread anywhere else, it will grow in it’s new location, and 3) because triple-negatives mostly rely on chemo given the lack of hormonal targets, receiving chemo first helps doctors understand what chemo agents are effective against a person’s tumor. For example, they want a 100% pathologic complete response, abbreviated as pCR, at the time of surgery or I will get more chemo. This is because if the chemo did not make the original breast tumor disappear, it is likely that any cells that spread outside of the breast are still present and those are the ones that are dangerous. If they did surgery first, there would be no way to tell if the chemo worked since the tumor has already been removed.
So after all of this was agreed on…it was time to start chemo!
May the Lord bless and protect you. May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace. Numbers 6:24-26 NLT
Disclaimer: I am not a physician and am simply sharing my story. Please consult your physician for any medical concerns or treatment decisions.