Confusing stats on reoccurrence, help!

Your MO is the expert of Tamoxifen, chemo, etc. Your RO is the expert on radiation therapy and its benefits. A lot of surgeons give misinformation on such things as well. An oncotype of 26 is in the intermediate risk range, but it is on the high end. Your MO may recommend chemo as well as Tamoxifen based on that. With Tamoxifen only, your risk is likely 17%. There should be a statistic on Tamoxifen plus chemo. If you opt out of hormone therapy, generally they say that your risk doubles, which in your case would be 34% risk. 34% is still better than a 50% chance of not having distant recurrence, but it depends on your desire to be aggressive in treating it. The choice of what to do as far as treatment should be made in discussion with your MO, perhaps a second opinion MO, and needs to take into account your age (someone who is 35 might choose to be more aggressive than someone who is 75), your general health status, and your wishes.

KBeee is right that your MO is the expert when it comes to systemic treatments like chemo and hormonal therapy. If your oncotype is 26, and you can reduce your risk of recurrence from 34% to 17% by taking Tamoxifen, you might want to at least try Tamoxifen. Many women are scared of hormonal therapy because of the stories they read online about women who couldn't tolerate it. They rarely hear from those of us who get very few side effects and tolerate hormonal therapy well.

My advice is just to try it. If your side effects become debilitating, you can always stop. But, I'm always a bit surprised when when women don't give it a go first.

Hi DECODED:

I am wondering why your profile says 0/2 nodes, but Stage IB? Stage IB requires node involvement (i.e., pN1mi):

https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

Nodal status affects the type of Oncotype report you receive and the nature of the recurrence risk information in the report (e.g., 10-yrs versus 5-yrs, and other differences).

What it the title at the top of page 1 on your Oncotype report?

(a) "Node Negative Report"; OR

(b) "Node Positive (1-3 N+) Report"

Also, following your lumpectomy, your profile shows you received radiation to the Breast, Lymph nodes, and Chest wall. Is that correct? Do you know what finding led to radiation beyond the breast?

BarredOwl

Eh, Tamoxifen doesn't necessarily throw you into menopause. Some women are thrown into menopause by chemo, and by ovarian suppression. Tamoxifen is associated with irregular periods, but that's not the same thing as menopause. And, it doesn't cause osteoporosis; Tamoxifen actually prevents bone loss. (If you want bone loss, you can be like me and take Aromasin.) And, the likelihood of developing uterine cancer is pretty small. So, I'm not sure where you're getting some of your information from.

Yes DCODE there are possible SEs but they are all small chances. I have cramps from Tamox. I have fibroids in my uterus. I would love to have a hysterectomy to get rid of it and my ovaries as I'm 51 and don't need them. I have no major medical problems except arthritis pre-cancer. They told me I have a higher risk of complication from such sx than I do of the side effects listed. They have to list everything. One med I took said possible side effect is death. Doesn't get better than that!

DCODED, you do lust some valid concerns for Tamoxifen, the most serious of which is blood clots. You could speak with your MO about ovarian suppression and an AI instead. You would still have the risk of bone loss (Tamoxifen is protective in post menopausal women, but not premenopausal) and menopausal symptoms, but the most serious problems with Tamoxifen for you ... The possibility of endometrial thickening and blood clots ... Are not side effects of AIs. That is an important discussion to have with your MO because blood clots are not to be taken lightly.

If you opt not to take hormonal therapy, then you and your MO may want to revisit the idea of chemo do that you have some sort of systemic therapy to help ward off this beast in the future. I know these are tough decisions. When I had to make similar decisions, I made a pro/con list for every option. If clarified it for me and made my best option clear. What's best for one person is not for another

DCODED, the risk you are facing is not some future risk. The risk you are facing is the risk that some cells from your breast cancer might have already broken off from the primary tumor and traveled into your body. If you are going to develop mets, this first step towards progression almost certainly has already happened. Those breast cancer cells are sitting there, in your bones or your liver or somewhere else, just a few of them, too small to be detected, until one day they decide to grow. That is what the Oncotype score measures.

Diet and lifestyle changes might be effective at somewhat reducing (although certainly not eliminating) the risk that you might develop a new cancer in the future. But your decisions here are about a cancer that you already have, one that might have already started to progress. It's a whole different ballgame. Of course, it could well be that no cells from your cancer did move into your body, and as a result, diet changes might appear to 'work' at saving you from progression. However if some breast cancer cells have in fact already moved into your body - and the genetic assessment of your cancer cells done by the Oncotype test suggests that this is quite possible - then your choice is to either do something that is proven to significantly reduce your risk by killing off many or all of these rogue cancer cells before they have a chance to take hold and start to grow, or you could just eat healthier foods and cross your fingers and hope for the best.

Your family and friends who are don't trust the medical system aren't the ones facing a significant risk of mets. You are the one facing that risk. And if that first step of progression has happened and you do have a few breast cancer cells floating around your body, this is your only chance to do something about it. There is no second chance. Once you know for sure that you have a problem - once the mets is large is enough to be detectable - treatment is available to extend life, but can no longer save life.

It seems to me that you are very worried about what might happen if you take Tamoxifen.

I understand that. There are risks. But what you are omitting from the equation is the significant risk of mets that you already face from this diagnosis of breast cancer.

As for who to trust... skeptical friends who have no experience and nothing at stake, or doctors who have dedicated their lives to understanding breast cancer and helping women with breast cancer survive? The well-hyped "The Truth About Cancer" or research studies about Tamoxifen and chemo and the Oncotype test conducted over many years on hundreds of thousands of women with breast cancer?

It's interesting to me that I never questioned my MO when he prescribed tamoxifen, probably because on the same day, he said chemo wasn't being recommended so I was relieved but I ran to the pharmacy to fill that prescription and never looked back. I've been taking tamox for a year and a half, have regular periods and very few side effects which could be from tamox OR the fact that I turn 50 this year, who knows but I consider it my battle partner and am happy to take it if it means watching my 11 year old grow up and spending many more years with my hubby. Just like everything on this journey sometimes the thought of something is worse than the actual event. I wish you all the best as you face these decisions

Regarding the idea that diet and lifestyle changes can prevent recurrance I disagree. I know that in today's very unnatural and synthetic world it seems reasonable to think "I'll go organic and exercise more,that will fix it"... but years ago all food was organic and people were more active and healthy weight and they still died from cancer. Lifestyle changes are good for many reasons and will improve your health, well-being and maybe help your immune system fight cancer, but I think you still need a big boost from conventional therapy.

Hi DEDODED:

The timing of initiation of endocrine therapy depends on other treatments received. Adjuvant (post-surgical) endocrine therapy may be given concurrently with radiation or after radiation.

If you were diagnosed on March 4, 2016, then September 4, 2016 would be six months from the date of diagnosis. In a recent publication (2016) of a study of MediCare Part D enrollees, using the the SEER database (period: 2007 to 2010), among study patients who initiated adjuvant endocrine therapy (with tamoxifen or an aromatase inhibitor), 38.5 % initiated endocrine therapy within 0–3 months, and 36.7 % initiated endocrine therapy within 3–6 months, from the date of diagnosis. This study reflects practices regarding initiation of treatment, with the majority (75.2 %) commencing treatment within 6 months from the date of diagnosis.

It should not be "too late" to initiate endocrine therapy now. Of course, please call now, and do not delay taking treatment any longer.

I assume you already discussed your co-morbidities (e.g., endometriosis, Graves' disease, and history of blood clots) with your medical oncologist. If not, please be certain to do so now to ensure full consideration, and to discuss possible base-line testing, routine monitoring, and/or other intervention (e.g., aspirin, other), if indicated.

BarredOwl

Hi Lovinggrouches:

I see a distinction between a situation such as yours where there was a medical reason for a delay in treatment (unavoidable delay of 8 months from diagnosis; also, RS 14 "Low risk", ER+ PR+, grade 1). I kind of doubt that your MO would provide the same sort of advice to DCODED at this point, because she is not similarly situated to you (an "Intermediate risk" recurrence score on the high end (RS 26), PR-, grade 2, and who received a recommendation for chemotherapy), particularly in the absence of any medical reason. Most MOs encourage patients to avoid treatment delays, when feasible.

Patients should not assume that it is "too late" (the point of my previous post, and consistent with your experience). Nor should they assume from advice given to another person that they can comfortably wait even longer. In their best interest, they should act without delay to seek case-specific expert advice about time-frames for initiating therapy.

BarredOwl

Good for you, DCODED! (But don’t pour yourself that drink just yet--regardless of treatment, ER+ patients should restrict themselves to no more than 3 drinks--e.g, a little less than a pint of wine, 3 cans of beer, or 3 shots of booze (and not on the same day) per week. Make that glass of wine or champagne a short 2.5 oz pour and you can have it more often--like 5x/wk.

The reason tamoxifen doesn’t throw you into menopause is that unlike aromatase inhibitors (which keep your body from making estrogen), it works by gumming up your tumor cells' estrogen receptors so they can’t access estrogen. Your bones still do, as does the rest of your body. (The side effects may mimic some of those of menopause, but they aren’t the result of total estrogen deprivation). You might still need to use barrier methods of birth control.