Hi dear friends and family, We've set up this site to communicate better with everyone about my recent breast cancer diagnosis and treatment. Since finding out, I've really wanted to talk with all of you and it's been frustrating that I haven't had the time to do it yet--and have been speaking to many doctors instead. I still hope to keep in touch with you more personally, but I also know that time and energy will be limited during the coming months and many have recommended this as a good way of keeping everyone updated.
As you may know, I inherited the BRCA1 mutation from Mom, who died of ovarian cancer at 49 (we didn't know she had the BRCA1 mutation then, but her doctors were convinced she likely had a genetic cancer). Because BRCA1 increases your chance of developing breast and ovarian cancer, I have done regular scans and exams, as well as doing everything I could in terms of a healthy lifestyle to prevent cancer. I had a clear breast scan and exam in November. Recently, I found a large lump that I'm convinced has not been there very long at that size, as I would have noticed it sooner. The biopsy confirmed that it was invasive ductal carcinoma, one of the most common breast cancers. The pathology report further detailed that the cancer is strongly estrogen positive, only weakly progesterone positive (so weak that my surgeon said it is really more like progesterone negative), and Her2 negative. This detail is important in knowing how to treat the cancer--what hormones or proteins are driving the cancer growth. BRCA patients have a higher rate of triple negative cancers, which are the hardest to treat, so I was thankful to not be diagnosed with that. The pathology report also did confirm that my cancer is growing quickly (high proliferation rate). This, combined with my BRCA1 mutation, made the doctors concerned that the cancer was more aggressive.
Thankfully, all the scans have shown that, as far as they can tell, the cancer is localized and has not spread to my lymph nodes or other parts of my body. This is important for a good prognosis and means that their goal is to cure my cancer. Even though it is localized, the size of the cancer (3 cm or so) means they are currently staging it at Stage 2A.
My biopsy was also sent off for Oncotyping which is a special test which measures 12 genomic markers in estrogen positive breast cancer and compares it to a large study of thousands of breast cancer patients. This allows them to give more accurate predictions of how likely the cancer is to return after surgery (without other interventions) and how much better the likely outcome if chemotherapy is used. My score came back as a high risk of recurrence which was not a surprise to my doctors, given the BRCA1 mutation and the high proliferation rate. This score was further confirmation that I would need chemotherapy before surgery.
Breast cancer is considered a systemic disease. Even when small localized breast cancers are found, they have learned that microscopic breast cancer cells are already circulating in the body, trying to learn how to grow in other locations. They do not have tests to detect these microscopic cells, so they have learned from experience what has worked best to eradicate them and prevent them growing elsewhere in the body. With a breast cancer that is more likely to recur after surgery without other treatment, choosing to do chemo first enables them to see its effect on the tumor, which gives them information about how the microscopic cells are responding as well. The chemo is not primarily for treating the tumor, but rather for treating cancer cells elsewhere in the body.
When my cancer was diagnosed, my breast doctor was at Weill Cornell/NY Presbyterian. I also met with an oncologist and plastic surgeon from that team (all visits have been over video or phone so far because of the lockdown). While I really liked all those doctors, I felt I needed to get a second opinion from Memorial Sloane Kettering, as it is a dedicated cancer center and one of the top cancer hospitals in the world. Since BRCA1 mutations can be trickier to treat, being at a top research institution allows for more information available if they run into issues with my treatment. Everyone I know who has been treated at MSK has had a good experience, and I already had my fallopian tubes removed in a prophylactic surgery there two years ago (my ovarian doctor is there). I had to find a team of doctors there very quickly, but through the recommendations of friends, I was able to put together a team of surgeon (George Plitas), oncologist (Pedrem Razavi) and plastic surgeon (Michelle Coriddi) pretty quickly. I have decided to proceed with MSK.
The current treatment plan is 20 weeks of chemotherapy (starting this week), followed by a bilateral mastectomy and reconstruction. They also want me to remove my ovaries because of my increased risk. Depending on the results of the rounds of chemo before surgery, they may want to add additional treatment with chemo or other inhibitors post-surgery. They will add 10 years of hormone blocking aromatase inhibitors as well.
The intensity and length of treatment has been quite overwhelming to me. Without the BRCA1 mutation, the recommended surgery would be a lumpectomy, followed by radiation (although I likely would have had to do chemo with the high Oncoscore). With a BRCA1 mutation, however, my risk of recurrence rises each year, and as I am this young and hope to live many more years, they gauge the risks too large to not address every option to lower them. With all the expected treatment, the doctor hopes to lower my risk of recurrence to 10-15%, which he would consider an excellent outcome. I was a little surprised that a good outcome wouldn't be lower than that.
I'm well aware that there are natural treatments for cancer, and I've preferred natural approaches to many of my health issues overall. I've known I was at higher risk for cancer for more than half of my life, so I've pursued lifestyle choices that would prevent me from getting cancer. In trying to address my adrenal and autoimmune issues, I've tried a lot of different natural diets, supplements and other natural treatments. I've seen some good success over time with these, but none of them have worked long term without significant adaptations. They've either stopped working as my body gets used to them or I've become sensitive to some aspect of them, which meant I had to stop. Having the cancer appear so quickly and aggressively despite all I've done, combined with so many years of other experience, has convinced me that this is the route I need to take to deal with something that appears directly connected to this gene mutation. That being said, treating the side effects of cancer treatment is highly medicalized in hospitals and I'm planning to do everything I can within my treatment plan to avoid more side effects from the drugs given to treat the side effects. I have a natural doctor who knows my body well and has a lot of experience helping cancer patients through difficult chemotherapy and surgery. He's very careful not to interfere with the cancer treatment, but also has a lot of recommendations for helping my body through this in a way that will work for me. I have real fear about long-term effects of this treatment. I'm not at all looking forward to the year ahead, but temporary pains are less worrisome to me than permanent changes that are damaging. At the same time, I am thankful that I am not talking about metastatic breast cancer right now, or ovarian cancer. I'm well aware that my prognosis could be much more serious.
I am so thankful for your love, prayers and support. I have felt it upholding me, even from a distance (even those who live nearby are at a distance these days, unfortunately). The Lord has already used kind words and gifts and thoughtful help to remind me that I am loved by him and by so many of you--often when I've been at a real low point in processing all of this. I'm struggling to go day by day right now, to still see and take part in the beauty around me, and be reminded that I can't see the whole story right now--and I don't understand why cancer has become part of my story again--but I will eventually understand and know much more than I do now.
I'd appreciate your prayers and support for Joe and Bronwyn and Matteo has well. Joe is going to be shouldering a lot in this--he is already doing that. Bronwyn and Matteo have been doing okay, but emotions and fears surface without much warning. It is particularly hard not to have the regular distractions of sports and friends and pre-lockdown life. We had been enjoying our time together during the lockdown and were looking forward to tackling some family projects, and hopefully getting to travel some this summer, and they've been disappointed that even those things feel in jeopardy now. So much was already in limbo with the virus, and we've just added a lot more limbo. I know so many of you are experiencing these struggles too, so you will understand. I pray they will be protected from too much fear. Getting cancer has been one of the great fears of my life and having a sick mother was something I really didn't want my kids to have to experience. But I also know that suffering can build and shape us all in ways that other things cannot, and that God can bring good out of evil. I pray that is our story.
It's been a very busy December this year, but I've been needing to give you my good update on my recent scans. I had a CT scan and an MRI and both of them were clear, with no sign of cancer. After my MRI, I also had an exam with Dr. Paty to check the site of my previous tumor/polyp removal. The incision looked like it was healing well, but there was a slightly raised red bump in the area that he noticed. He said it didn't look like cancer, but out of an abundance of caution he wanted to biopsy it. So he took a small piece of it right then and sent it to be biopsied. After a few more days of waiting, I got a clean biopsy report too--only healthy cells. I also had another CEA blood test which was normal.
I'm very relieved and thankful for these good reports! Both Dr. Paty and Dr. Yaeger want to continue to follow me closely for now, which means I will have another colonoscopy in April with Dr. Nishimura, and then another MRI and exam with Dr. Paty in August. I will also have another Signatera test in there, as well.
I asked whether the negative Signatera test could mean that I didn't need to have the other scans and they said they don't yet have enough data on the Signatera tests in early stage disease to be able to tell if it is consistently more sensitive than the scans yet. They don't have a lot of data in general on cases like mine where the cancer was caught this early but was still at risk for spread. This is surprising to me, but I've been told this several times. I guess they usually catch it early enough to remove it without further concern or find that it has spread enough to require other treatment.
I'm still doing blood work with my doctor in NJ to continue to track the raised inflammatory markers that have shown up in my blood work. We're trying to get to the root of the cause and address it, in order to bring those markers down into normal levels. Cancer can be fueled by inflammation in the body, so it's important to address it--and for other health reasons, as well. I'm working on a combination of dietary changes, supplementation and exercise adjustments to hopefully see good results in the blood work and my energy levels. I've been quite careful for years about healthy food and environmental toxins, and yet my genetics seem to be stacked against me, so it's requiring more investigation.
Thank you all for your prayers and love for me. I greatly appreciate them! Wishing you all a very blessed Christmas and a happy new year!
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