Monday, June 28, 2010

Recurrence Risk

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.


  1. I am so impressed that you've been able to thoroughly go over and through all of this, research further, gather it all together into a coherent list, and analyze it ... and yes, it's frustrating that there are no simple and easy conclusions. Life in the Gray Area. But you can be satisfied that you've done due diligence, that you've made the best use of the available information, and then made your choice. What more can anyone do? You're awesome.


  2. Wow! Great post. So thorough and clear. Super job, Britta. I probably did the same thing way back when, but it's all a big blur. Are you going to any breast cancer support groups? The one in Franklin County is next Wednesday. I've been going. Mainly for the free dinner, but I find it is helpful to vent among other survivors. In August I "graduate" to the post-two-year diagnosis group, which I'm sure will be STRESSFUL, because I'll hear about recurrences. I'm sure the Tamoxifen decision was difficult. It's so hard to know. Sounds like you've made a very informed decision and that's the very best you can do. I don't know what I'm going to do now, since I can't take the Arimidex. Feels scary not to have anything working against the cancer now.

    Love you,

    PS Thanks for your "long" E-mail. I'm going to read it tomorrow when I'm fresh.

  3. Thanks, Mom and Sue!! I found more Tamoxifen info that I'm going to write about in another post.

    Sue, the last time I tried to go to the local breast cancer support group (one of their "outings"), there were only 3 of us (including the facilitator) and I didn't really connect. There's another group in Westminster, I think, but I'm not willing to drive that far... I dunno. Glad you get a free dinner at yours. :)

    As for not having anything working against the cancer now...
    The AntiCancer book will help. It's uplifting, interesting to read, and full of practical strategies. When you come visit, you can borrow my copy, if you want!
    Also, if you want, I'm taking 10 supplements now, 7 of them specifically anti-cancer, if you wanna know the details of what I'm taking...all naturopath-prescribed. Of course it's a little different for everyone, and I couldn't tell you what dosage to take or anything, but you could see if any of the stuff would be useful to you.

  4. Great information - I had a Grade 1 / Stage 2 mucinous carcinoma outcome ... I had surgery to remove 2 lumps (1 cancerous and the other not) and there was no spreading of the cancer. I decided not to do Tamoxifen or Radiation - instead I chose to to "Gerson Therapy" - I figure if I don't go to the source of the problem in my body (weakened immune system and other things, that I have a stronger chance of it coming back). This was my choice - I did similar research that you've done also... good luck!! This was back in 2010 I see - I hope in 2013, you are still doing well.

  5. Hi Pamela! Sorry to hear you have to deal with breast cancer, too... but I'm glad you found my blog. Yes, there's so much to research, and it's complicated by the fact that mucinous tumors are so rare so there's not a lot of info that's specific to you and I and the other women with mucinous tumors... so we just do the best we can! I hope the Gerson Therapy is helpful for you. I wish you much health and happiness!!

  6. Oh, and yes, I wrote this post three years ago... I'm doing very well now! I took a four-month break from Tamoxifen due to unpleasant side effects, but I've been back on it for about 14 months with no problems.

  7. How are you now

  8. Hi Britta, I came across your blog while doing my research on Mucinous Breast Cancer. I am 36 and was diagnosed last month with Invasive Mucinous Carcinoma (Pure mucinous, Stage 1, Grade 2, 1.1 cm with DCIS (Grade 2, 3.2 cm). My oncotype dx score came out to be 24 which is put me in a lot of confusion about whether to do Chemo or not. The Drs are confused as well. My lymph nodes were clear and margins were clear as well after lumpectomy. I was about to get Mastectomy and take Tamoxifen after. I am not sure whether I will benefit from Chemo. My distant recurrence risk is 15% as per Oncotype DX and will be reduced to 12% after chemo. In your research, did you come across any more data on whether the oncotype dx test is valid for Pure Mucinous breast cancer.

    1. Hi Reenal, I'm sorry to hear you were diagnosed with breast cancer. Glad to hear your lymph nodes and margins are clear! Unfortunately, I didn't find any more data about how valid the Oncotype DX test is for mucinous breast cancer. Mucinous breast cancer is still quite under-studied, it seems, because it's so rare. Sounds like you have a tough decision to make, and I empathize. The seemingly-neverending stream of tough decisions was one of the most difficult parts of cancer treatment for me - always weighing the pros and cons, the risks and benefits, searching for more info, going back and forth! I wish I had answers for you, but I don't! I haven't read it, but I've heard good things about the book "Your Medical Mind: How to Decide What is Right for You," by Jerome Groopman. Best of luck to you!