Hello all. I am now 19 days post double mastectomy. I've been journaling daily about my recovery experiences and thoughts, and I promise to post more on that another time. For now, I wanted to take this time to update you on some big stuff that's happening tomorrow. I completed six tough months of chemotherapy in July. On August 11, I had my surgery, and the first 14 days post-op was rough physically, mentally, and emotionally.
Six days after my double mastectomy, my surgeon left me a message saying she wanted to take me back to surgery to remove more of my lymph nodes (called an axillary lymph node dissection or ALND.) One sentinel lymph node (the first lymph node that my tumor drained into) was identified preoperatively. During that surgery, they removed the one sentinel lymph node and the second lymph node that had confirmed cancer cells (which was why I did six months of chemotherapy.) A live pathology evaluation said the sample taken from this sentinel node was "negative for cancer cells" during my mastectomy surgery. That was good news to hear after surgery! However, upon further study, they later found that cancer cells had in fact, metastasized to that node. By the size of it, it didn't even look like my months of chemo had any impact! These findings mean that the other remaining lymph nodes along the chain could also contain cancer cells. If so, those cancer cells could potentially travel to other parts of my body, leading to more cancer growth. There was also NO chemo response to my tumor. My final tumor measurements were 6cm x 6cm x 3cm. Bigger than any of the measurements they took during my two MRIs. Huge. I still can't believe that thing was hidden there all those years and wait....what? No response to chemotherapy?! All that misery for nothing?! WHAT, I now have to go back for another surgery?!!
I know it happens sometimes.
It's unfortunate.
It sucks but, why...why...WHY me?!
My biggest fear from this recommended ALND surgery and the following radiation treatments is the development of lymphedema in my right arm. It can be debilitating. Is another surgery really needed? Are there other options? Not only do I need the normal functioning of my arm for my activities of daily living, but I also need my arm for the many more years of doing the work I love to do as a Nurse Midwife!
Lymphedema occurs when the lymph system is damaged or blocked. Fluid builds up in soft body tissues and causes swelling. It is a common problem that may be caused by cancer and cancer treatment. Lymphedema usually affects an arm or leg, but it can also affect other parts of the body. Lymphedema can cause long-term physical, psychological, and social problems for patients.
After the news, my surgeon was out of her office for the week, but I had follow-up appointments with other treatment team members. Of course, me being me, I also researched ALND, lymphedema, and hormone receptive breast cancer recurrence. I listened to and read about the different treatment options and thus was conflicted about whether I should go through with the surgery. I was told that radiation therapy (which is already on my treatment plan) could be sufficient in obliterating the remaining cancer cells in my axillary lymph nodes as long as I didn't have any "high-risk factors." The quality of life post-ALND was not promising, so if it could be avoided, it should. The information was all so confusing, and I was frustrated.
Is it selfish for me to want to minimize my risk for lymphedema? Is that fear keeping me from getting the necessary treatment? If I don't do the surgery, what would my children say if I had a cancer recurrence? Am I not willing to do everything in order to be there for them? If I do the surgery and the final pathology report reads that all 10-15 lymph nodes removed had NO cancer cells after all, would I regret choosing surgery? What about quality of life?
As I was mulling over all my options, I received two text messages from breast cancer thrivers. They heard about my news and were sending their thoughts, love, and empathy. They each reminded me in their way that this was just another hurdle. It sucked, yes, but keep fighting. Living was worth it. They also shared that they, too, had the axillary lymph node dissection done and were living and even thriving post-cancer treatment. I so needed to hear that. It was comforting. Their timing in reaching out was perfect.
Finally, this past Thursday, I was able to meet with my surgeon. It was the first time we had seen each other since she left me that message several weeks back. Her voice was the piece I was missing while I debated over my options. After listening to her perspective, recommendations, and reviewing my pathology report in detail together, I am now at peace with having the surgery. All of my questions were answered. All my doubts were addressed.
So off to another surgery I go. She'll likely remove 10-15 of my level 1 axillary lymph nodes. The recovery won't be fun. I'm still hurting from my first surgery, so re-entering those scars won't be pleasant. Statistically, I will probably get lymphedema eventually in my right arm. But you know what? I'm trusting God in the now with the clarity and peace I have been given over my decision. My prayer is that the surgery and my recovery will go smoothly. And yeah, I pray that the final pathology report says that there aren't any cancer cells in the lymph nodes that they do remove. If there are cancer cells in those nodes, well, then I know we did the right thing. This is what I can handle for today. I will deal with the lymphedema consequence when and if it happens.
I know now that my cancer is invasive. Even though there is no evidence of "distal" metastasis, it is apparent that the tumor and the locations closest to it did not respond to chemotherapy. Given that my tumor cells are >95% hormone receptive, we knew in the beginning that there might not be a chemo response. My oncologist said that chemo was the best approach with the information she had at the time (confirmed lymph node involvement), and it was worth a try to prevent any distal disease hopefully. Still, it was disappointing news to get this final confirmation. I don't regret getting chemo, but yeah, I'm kinda mad that it didn't work for me like it has for others.
In the past seven days, I've met with my oncologist, surgeon, and gynecologist. My medical team has given me their expert recommendations. Tomorrow morning, I am going to have the completion of my axillary node dissection. I will have another four weeks of healing to do before radiation. Then, after 25 rounds of radiation, I will also have my uterus and my ovaries/tubes removed. Yes, another major surgery. The ovaries are the most significant contributors of the hormones that feed my cancer, so it's time to cut that source off. One of the endocrine therapy medications to fight my type of cancer can also lead to uterine cancer (what the heck, right?) Without a uterus, that won't be an issue for me in the future (a good thing.) I will have to take anti-cancer/anti-hormone medication daily for ten years! Without the normal circulating hormones a woman my age typically has, my body will rapidly age. Fatigue. Brain fog. Sore joints. Hot flashes. Brittle bones. Weight gain. I will feel old. Yup, that's how aggressive we are going to be.
I am not taking this lightly. I have cried, no bawled (snot and all) a lot about all of this during the last few weeks. I have felt sorry for myself knowing all the God-given parts that made my body a woman, and a mother will be gone before the end of this year. Without them, I will always be reminded of this messed up never-ending breast cancer journey. It sucks that I have to force my body into menopause. To fight cancer, I have to age my body rapidly. I feel beat up physically from the chemotherapy, diagnostic tests, and all the surgical procedures. I feel beat up emotionally from all my grieving. For the first time on this cancer ride, I asked, "Why me? Why now? What did I do to deserve this?" But I'm done with that. Nothing has gone as planned for anyone this year, including me. Yes, my plans for the rest of 2020 have been thrown out the door like everyone living during this COVID-19 pandemic.
Admittedly, I was in a dark place, but alas, I've somehow re-emerged with more resilience and determination. My will and heart to get through this cancer have not been squashed. I want to be around for a long time for my husband and my children. I trust my care team and continue to hope that the outcome is good. I want to live out my purpose with gratitude and vigor, no matter how much time I have left.
Gratitude keeps me going.
Thank you all for your thoughts and prayers. Thank you to my breast cancer survivor friends who let me bitch and lament about this process (Sandy, Sara, Joselyn.) Thank you to my besties and dear family members that visited and cried along with me these last few days. Thank you for allowing me to be still and whine and cry when I needed to and for helping me up when I needed to get moving. All of your support has given me the encouraging push to take the tiny steps required to move through each new day living with breast cancer.
By the time you are read this, I'll either be in surgery or recovering from surgery. Kindly send me your good vibes, healing thoughts, and prayers! XOXO