I'm not going to take the estrogen inhibitors

currently finishing up my 5 years on aromasin.  all clear and since chose to work out with a personal trainer right after finishing up my rads.....can i say i feel better?  then again he has me stretching, i am doing much more on the treadmill than previously and use weights every week

busy stressful, commission based job and since I am single, it is me for health insurance but , i get to the gym for 45 minutes 2 nights a week and spend 2 hours a day on weekends......you can find time, you must find time to care for yourself

Yes, for some the side effects of tamoxifen or AI's are intolerable, but for many they are quite manageable. The most common side effects are not "un-godly" for most women. Reading this forum sometimes make it seem so but women who are coping well with these meds don't start threads about how well they're doing. This makes the the comments on this forum rather skewed. My best advice is to give it a try. If you are one of those who find it unbearable, you can stop.

Caryn

PS: two years on Arimidex and living a very normal and happy life

jmys999-

Talk to your doctor about clarification of the need for hormonal therapy. I had a total hysterectomy plus removal of ovaries about 5 years before my breast cancer diagnosis. And, I believe there are many post-menopausal women (with or without ovaries) for whom these medications are recommended. My doctor wants me to stay on Arimidex as long as I have no bad side effects with it and my bone density stays good.

But as I understand it, estrogen is manufactured in your body even without ovaries -- especially from fatty tissue (making it even more important to keep weight down). The estrogen inhibitors are to keep estrogen (from any source) from helping an E+ breast cancer in developing or metastisizing. I feel it's another tool in the arsenal against metasisis  or recurrence (after surgery, chemo, radiation). And I want to use every weapon available to me!

There are many different choices in estrogen inhibitors, and side effects from any of them are highly individualized. Some cause problems for some women, while others don't. I had hot flashes for a while, but I had been on HRT before my diagnosis, so withdrawal of that plus estrogen inhibitors made it even worse. Now I only have an occasional "warm glow". I agree with caryn (exbrnxgrl) that there are many women who are using these medications without significant problems -- they just don't start threads about their lack of side effects! Who knows, you might be just fine on it!

My onc told me that estrogen is still present in post menoposal women from body fat and is also produced by the adrenal gland - so the ovaries are not the only source.

Annie

wow

mbb I hope all this information is not overwhelming. The passion stired by this topic shows me we are all tough fighters.

I will add my story to this thread in hopes that it is helpful. When I was dx stage II I tried both tamoxifen. and AI and tolerated them for varring amounts of time. I went the naturopath rout for awhile taking large dose of melatonin. to block estrogen. The bc recurred in two and a half years. I dont know if tolerating the meds longer would have changed my course and truely I have no regrets about my decision. What I do regret is that I didnt think to gather more information about my cancer. I knew I was er positive but not how stronger the er positive was. I did AC and T chemo but hadnt read that sometimes they are not as strong for. er positive cancers.

I believe in our ability to make decisions for. our. own lives. Just gather the information you need and make the decision that works for. you. Good luck and wishing you peace.

Hello,

I am green with this. Just saw the med onc today for 1st time. I have IDC grade 3, 2 cm wide lesion. Right one was found by MRI to possibly have something suspicious so I'm going for u/s on it later today.

Med onc said just looking at it, looks like it's stage 2--but of course won't know until surgery time when pull sample of lymph nodes as to whether may be a 3.

Regardless, I've already decided to do both mxs. Can't deal with this again regardless of the probability of recurrence. I'm 50. I'll do reconstruction.

He told me I'm positive with the hormone receptor thing and would give me a pill for 5 years to take. Are there different types of pills or is it just one for all? And the side effects. OMG. I already have a lot of memory issues and am weak/fatigued all the time, even before this mess.

Any input on what hormone drug brand(s) to try to avoid if possible because of side effects? Can you not take it and all it means is you just risk it coming back again? If you have both breasts removed and reconstructed, how can it come back?

Thanks! Lost.

mbb, I will add my story since it is not what I typically see here. I did tamoxifen for 2.3 years. I did not tolerate the tamoxifen well. It made me very nauseous and I lost weight on it which wasnt great since I had already lost a bunch on chemo. I tried to stick with it, I tried lower dose, the highest I could tolerate was about 15mg, a bit less than the 20 mgs they prescribe. It also made me quite anxious and we tried working on that too. I had my ovaries removed recently. I am 50 years old but my estradiol levels were still high enough I couldn't just switch to an AI according to my MO. So now I will try the AI. Not all women react to tamoxifen the same way but you won't know until you try and then on top of it, you may wish to make sure you give it a fair shake - like a couple of months - to see if you adjust to it. Good luck!

I wish mbb would have let us know how her treatment went. I'm starting tamox soon, so fingers crossed that I'm one of the lucky ones that is able to tolerate it. I'm VERY glad to read that some women do ok with it.

sbab's post is 2 years old, but it bears repeating that just because a tumor has a low Oncotype score doesn't mean endocrine therapy can be avoided. In fact, the very things that make a tumor low Oncotype (post-menopausal, early stage, node-negative, clean margins, grade 1 or 2, small and ESPECIALLY hormone-positive) are indications in favor of endocrine therapy (SERMS or AIs). There's a new genetic-molecular analysis that assesses the advisability of continuing endocrine therapy past 5 years, but it's not yet “standard-of-care," though Medicare now pays for it. However, there are no tests yet that can predict the specific benefit/risk ratio of endocrine therapy at all for a particular ER+ tumor before the therapy starts, the way Oncotyping predicts the effectiveness of chemo. Maybe comparing the % of ER positivity with a patient's baseline post-menopausal blood estrogen levels, but that's strictly theoretical---and we've all seen logical recommendations based on solid scientific theory fail to pan out, whether it's weight control advice, statin use, prophylactic antibiotics, optimal systolic BP and lipid levels (and yes, even the lifesaving potential of early detection, which isn't necessarily lifesaving if we haven't yet come up with a foolproof way to prevent recurrence and cure metastatic disease). There's a new book out (just read the review in the NYT) on this very subject called “Ending Medical Reversal," about the flip-flops medical and nutritional science has taken in its recommendations over the past few years. Interestingly, it was reviewed in the same issue as medical oncologist Dr. DiVito's “The Death of Cancer," which derides those who would place safeguards and limits on the use of aggressive chemo. (When you're a hammer....)

ChiSandy, that is a very good point. According to my reading as well, low-grade, hormone-receptor positive breast cancer tumors are the ones that can carry a real risk of late recurrence. When people look only at five-year statistics, these look like "good" cancers. But they can make you just as dead as an "aggressive" one, eventually. Personally, when I hear of women refusing hormonal therapy because of side effects, I cringe. I hope their doctors explain the risk of late recurrence to them, and what stage iv would mean, and I hope they will do everything they can to manage side effects and stay on the therapy. Believe me, you can find a way to live with it when refusing is not an option. Well, technically it is an always an option but you have to understand what you're risking. I don't like scare tactics, but we need all the information to make a good decision. The reason I mention that stopping is a possible choice, is that I feel that helps someone who is afraid to at least try. People don't want to feel forced into something. And there are probably some for whom the quality of life issues trump quantity of life. But first try it.

Hi, Shetland - It was primarily to see if we could avoid the ALND that two other surgeons had absolutely insisted I needed. The tumor wasn't large so lx. was always a pretty likely option for me but I was very wary of ALND. My 3rd consult offered me the option of neoad. Femara to attempt to clear the node, bring down the (high) Ki-67 and possibly avoid chemo after surgery. We all felt that knowing how I responded to Femara would be useful, since I was 100%ER+ . Femara did knock the Ki-67 down to 4% after one month and then 1% at surgery, reduced the tumor and knocked out most of the nodal involvement. It was stressful to go that route but ultimately, I'd do it again. Thanks for asking - it's an interesting option, used a LOT in Europe and the UK but not widely here.

Marijen, it's interesting to run into another woman who used neoadjuvant Femara - there aren't very many of us on this board!

The Ki-67 is usually in the biopsy report somewhere although not all path. labs report on it - protocol seems to vary a lot. It's too bad not to have that info although your surgeon could ask them to review the pathology.

Did you see results (shrinkage) from your neoad. Femara? It looks like you had ALND anyway, which is kind of a bummer.

I see you'll start radiation at the end of this month - I hope it goes well for you. If you haven't already started doing so, you may want to take up moisturizing that area now - it can help your skin get through it in much better shape. If you're having supraclavicular radiation as well as to the axilla, be sure to apply lotion where it will exit at the back.

Radiation wasn't a walk in the park but I came through it with my skin in pretty good shape - no real burns (just very pink) and no peeling or oozing, thank goodness. I did end up with some fibrosis and some pneumonitis but given all the factors involved, I'd rather deal with those issues than skin issues or with a local recurrence. I hope it works out well for you, too.