You know, every time I think/post "I don't have much to say that's cancer-related right now," I really DO. (And from talking with other cancer survivors, I know this is normal/common.)
Two nights ago, I was up till the wee hours of the morning, deconstructing my pathology report, MRI report, and mammography reports, Googling every word I did not understand. I wanted a clearer picture of what my recurrence risk is. I’m mainly skeptical of the Tamoxifen because I don’t believe my risk of recurrence is high enough to warrant it. I feel so sure that I won’t get cancer again no matter WHAT, so why deal with the risks of Tamoxifen?
I guess two nights ago I was taking the opposite approach – trying to find information that would convince me my recurrence risk IS high enough to make the Tamoxifen worth it. Why am I so sure I can’t possibly have a recurrence? I was “so sure” I couldn’t possibly have cancer in the first place.
So here are all the facts as I know them.
I had two types of breast cancer at once:
A mucinous tumor, Stage 1, Grade 2 – 1.5 cm at its greatest diameter. Mucinous is a "good" kind of cancer to have if you have to have cancer, because it's so slow-growing/non-agressive. But it's really strange that I had it at age 30, when it's most commonly found in post-menopausal women over 60. In fact, I was the youngest patient my surgeon has had with mucinous cancer and she only sees about 5 patients with it each year. So it's hard to say what all that means. And the fact that it was Grade 2 means it wasn't the slowest of the slow.
An area of DCIS - approximately 3 cm. All DCIS is Stage 0, but mine was also Grade 2. Ductal Carcinoma In Situ is non-invasive cancer that does not (or at least, has not YET) spread beyond the duct that it is in. Some DCIS will never become invasive cancer, but doctors can't yet accurately predict which women's DCIS will become invasive and which won't, so DCIS is often overtreated because the risks of not treating it are just too high. Having DCIS increases one's risk of developing invasive cancer but it's hard to say by how much.
My Scarff-Bloom Richardson (SBR) score was a 6, on a scale of 3 to 9. A score of 3 to 5 = low grade, 6 or 7 = intermediate grade, and 8 or 9 = high grade. The SBR score takes into account 3 things: rate of cell division, percentage of cancer comprised of tubular structures, and cell changes/how similar the cancer cells are to normal cells. So, while less than 10% of my cancer was tubular (the higher percentage, the better), and the cells showed a "moderate" increase in size and variation (as compared to normal cells), cell division was slow. These 3 factors combined made the cancer "intermediate grade." That puts me in an annoying gray zone.
Something else that puts me in the annoying gray zone is my Oncotype score of 15. Oncotype dx is a test that analyzes 21 different genes from your tumor and uses that information to predict how likely you are to have a recurrence in the next 10 years. The creators of the test say that any score under 18 = "low risk," so low that you don't need chemo and/or chemo would be ineffective or not effective enough to make the risks worth the benefit. My score of 15 translates to a 10% risk of relapse in the next ten years IF I TAKE 5 YEARS OF TAMOXIFEN, otherwise the risk is higher. (Oncotype dx does not predict what your recurrence risk is if you take no Tamoxifen.) However, the National Cancer Institute disagrees with the Oncotype people and says that only scores below 11 are considered low risk, and that my score of 15 would actually put me in the intermediate risk category. In fact, that clinical trial that I signed up for was designed specifically to study those of us in the intermediate category, to see if chemo + Tamoxifen is a better treatment than just Tamoxifen. I had a 50/50 chance of being randomly chosen for the chemo category.
To me, what all of this says is I might be low risk, I might be intermediate risk, it depends who you ask, and it's kind of a toss-up. My risk of recurrence EVEN IF I TAKE ALL THE TAMOXIFEN is 10%, which is greater than my risk of having had cancer in the first place.
I also have fibrocystic "disease" (it's not really) with adenosis, stromal fibrosis, and atypical ductal hyperplasia. (A mouthful, geez!) This is a non-cancerous condition, but it's a higher risk marker. It's "pre-DCIS," ridiculous as that sounds. Pre-pre-invasive cancer. Hyperplasia = overproduction of cells, atypical = they're abnormal in some way, ductal = it's the cells in my milk ducts that we're talking about. Adenosis = those abnormal cells are also in my breast's lobules. I'm still not quite sure what stromal fibrosis is, but it's something similar - breast cells doing stuff they're not really supposed to. Lots of info here .
I have heterogeneously dense breasts. The denser one's breasts are, the higher one's risk of breast cancer. Check out Am I Dense for info . There's a lot of buzz right now about how dense breasts are an underappreciated risk marker for breast cancer...that is, the medical world seems to have known for a long time that dense breasts are a risk factor and that mammograms are often ineffective with dense breasts, but few doctors A) tell their patients about their breast density or B) use screening methods other than mammograms. I have to research this more, but anyway, I do have very dense breasts (about a 3 on a scale of 1-4, according to the info found in my MRI/mammo/path reports), and the doctors did tell me that, and that it's a higher risk marker for cancer.
I'm not exactly sure what I think of all of this information together means, but I had to put it all together like that so I'm rightfully focused on what's going on in MY breasts, not those of the women whose stories I stupidly keep reading on the Internet. There are so many stories at both extremes - women who say, "OH, the oncologist told me to take Tamoxifen but I knew I didn't need it and threw it out and just take green tea instead," as well as women who say that their cancer was so tiny/early their oncologist didn't even recommend chemo and just put them on Tamoxifen, but even WITH Tamoxifen, they had a recurrence 2 years later and are now at Stage IV. That woman said, to those of us who are all freaking out about not wanting Tamoxifen, "Tamoxifen side effects are better than Stage IV cancer." That has stuck in my brain.
But I can't let these other women's stories carry too much weight for me, because everyone's cancer is SO DIFFERENT. Before I was dx'd, I was so clueless about EVERYTHING - I didn't know the difference between radiation and chemo (I kinda thought they were the same thing and radiation's what made you lose your hair); and I never even distinguished between the nipple and areola, nevermind knew anything about milk ducts and lobules; and I didn't know that there was so much variation amongst the types of breast cancer. I thought breast cancer was just breast cancer.
It doesn't help me to compare my own situation to other women's and second-guess my decisions based on theirs, because I AM THE ONLY ONE who was a 30-year-old woman with a stage 1 grade 2 mucinous tumor, grade 2 DCIS, heterogeneously dense breasts, and atypical ductal hyperplasia with adenosis and stomal fibrosis.
I wonder if I will ever be at peace with my Tamoxifen decision, instead of continuing to anxiously analyze it from a million different angles. Right now I'm feeling like I have a greater understanding that yes, I DO have high(er) risk factors that might just make the Tamoxifen worth it. There's a lot of activity going on in my breasts that the Tamoxifen will hopefully calm down.