Low risk breast cancer - why hormonal therapy?

my risk factor of recurrence was less than 5%, with tamoxifen it takes my risk down to 2%. I had a bilateral mastectomy, stage 1 IDC, no node involvement. I wanted to do everything in my power to decrease the possibility of it recurring so i chose to take tamoxifen.

Loomisgal, after you fill out the profile bit, when you're back in the community pages, scroll down & find settings on the left hand side. Then on that page you'll get to choose which parts of your profile to make public. Things that you set to public will show in your signature

The thing I'd add to the discussion at this point is to consider time frames for risk. Usually when they say x% risk of recurrence it's in the next 5, 10 or 15 years (& with most breast cancers the risk or recurrence continues and often increases as time goes on; this is true of hormone receptor positive cancer). Depending on your age, you might be hoping for a life expectancy considerably beyond that. And just so we're clear, usually they don't talk about loco-regional early stage recurrence (which is treatable); they're talking about metastatic recurrence, which at this time there's no cure for, so it would be ultimately fatal.

btw, you can put in your stats in the calculators yourself and see what kind of outcomes are common and see if you're getting similar numbers to what your MO said.

Predict: http://www.predict.nhs.uk/predict_v2.1/tool

Life Math: http://www.lifemath.net/cancer/breastcancer/therap...

hth in your decision making

I agree with moth after reading studies about distant metastasis as in my case. That's why the word cure is not used. In my case I used AIs for two years and stopped. That was summer of 2014and became sympathetic this time last year. I was extremely active/good health/had clean mammo and blood work 5 months earlier-After a move and finding new onc who wanted me to start letrozole again as a gaurd against recurrence. I didn't have a recurrence but went metastatic. Do I blame me -no. Doctors won't even go there because they know how illusive HR+ is. You can see my DX AND TREATMENT below. You can always stop the inhibitors if you feel you need to. Hate to scare you but this is a nasty ghost of disease.

loomisgal. Not sure how similar my dx is to yours. But my risk was extremely low. I did not do radiation or meds. My recurrence rate is still verrry low. My tumor was caught very early. We are doing ultrasound every 6 mo. Mammo didn’t see my cancer at all. Very dense tissue.

I’ve also started intermittent fasting and my diet and lifestyle (stressors etc) are changed to be more healthy. I’m feeling great! Have lost weight and feel fabulous!!

I’m doing just fine. My onco said he’d support my decision as long as I see him and do diagnostics periodically. So doing those every 6 mo.

Regarding statistics, if you recur with metastasis, it matters not that your predicted recurrence rate was 2 to 4 percent.

Moth, other factors go into the higher rate, such as other comorbidities, for example heart failure, systemic organ failure, accidents. There is no way to separate out deaths from breast cancer, when other comorbities exist. Here is an explanation from a study that I have been reading:

"Breast cancer is the most frequent malignant disease and the leading cause of death due to cancer among women in the world [1]. Survival after breast cancer is determined by disease related factors such as stage at diagnosis, patient characteristics, e.g., age, and treatment [2]. The incidence of breast cancer as well as other chronic diseases increases with age, older breast cancer patients being more likely than younger to suffer from other diseases at the time of diagnosis [3]. A common term for such other diseases is comorbidity, defined as concurrent, etiologically independent chronic health conditions, unrelated to the disease under study [4]. There are two main mechanisms whereby comorbidity can influence treatment and survival after breast cancer. If the comorbidity involves organ failure, like compromised respiratory, cardiac or renal function, curative treatment involving surgery, radiotherapy, and chemotherapy may be impossible leading to an increased risk of dying from breast cancer due to insufficient treatment. On the other hand, the risk of dying from the comorbidity may be so high that the patient may not benefit from the breast cancer treatment, even if she receives the recommended therapy."

Moth, that 24% that you are quoting, is that from breast cancer alone or combined with other comorbidities? Is it derived by stage, type, etc. Could you please inform us where you saw that statistic?

There is no way to separate the influence and impact of comorbidities, that is why these math calculations don't work. They are a great prediction tool, but not a study tool, nor are they weighted as an information source for oncs. For those of us with early stage breast cancer, Oncotype has been a great tool for decision making. Oncotype actually looks at the individual's tumor and characteristics.

Looms needs to post her specific diagnosis. We have alot of phishing on this site that can go on for years undetected. Phishing occurs when open ended questions are asked and everyone dialogues and those doing the phishing analyze the dialogue and thought processes. Not commenting anymore on this topic because not sure of the motivation behind the original post.

Hi LoomisGal. I had stats similar to yours, but with an Oncotype DX score of 18 and a mixed IDC/ILC tumor. Given that the Oncotype DX score put my recurrence risk at 11 percent, even with the beneficial effects of Tamoxifen, I opted to reduce it by taking the pill. So far no side effects at all, but I am 59 and post-menopausal.

It's really such a personal decision when you are low risk it is hard to give advice. But if you can, I'd try it for awhile and see how you feel. Even two years of anti-estrogen therapy has proven benefit.

(edited to fix math error. Without Tamoxifen my recurrence risk would have been approxImately 22 percent.)

Loomis, I was scared as well, and I have a background in Pharmacy. I was supposed to take an AI, but after a hysterectomy/oopherectomy to get ready to take the AI, we discovered that I had osteopenia in my hips. So, I take Tamoxifen and for some strange reason, I feel really good on it......makes no sense at all. There will be some initial side effects, but they dissipate over time. My worst side effects were lack of concentration/fogginess, a bit of stomach upset, sleep issues. The sleep issues started after I had radiation and somehow my circadian rythmn was changed and my days became nights and vice versa. Now, Tamoxifen can help put me to sleep. I take it with a tiny bit of amitryptline. I use light therapy in the winter/long rainy periods and try to get in my daily walking. I had to take Magnesium for a while, which helped with any muscle cramps/leg pain, which is gone. Magnesium can also help you sleep and builds bones. I take 50,000 units of vitamin D per week, and chow down on some vitamjn c every day. Your doctor let you go a really long time not taking anything. Start with 10mgs of Tamoxifen for two weeks, then 10mgs 2x per day, for less side effects. Even if you take it at 8pm and 11pm, it helps to reduce side effects. Good luck.

Well, Oncotype is only useful for some of us - it's not helpful for tnbc. It classified me as triple neg & it's not validated for tnbc so my oncologists did use calculators such as Predict and Lifemath to assess risk when discussing chemotherapy benefits. I do agree that these calculators are not specific to individuals; they are large population data and do not necessarily apply to each individual but still, they provide information which can be useful to the individual.

Also the Oncotype recurrence score assumes 5 years of tamoxifen.

Georgia, I'm confused by something you said about Oncotype giving you a score & tam halving it - Does it give on your report somewhere the recurrence risk without tam? I've only seen reports for the benefit of tam alone or tam + chemo.

Staying on Track with Hormonal Therapy...

This is a link to a breastcancer.org article. You have hormonal receptors all over your body. I would suggest getting on the AI.

I had BMX Nov 2017. Stage 1 no lymph involvement, no chemo, no radiation. Post menopause. Took Letrozole for 8 months off 1 month because of side effects tried Armidex for 10 days worse side effects. Currently stopped all ALS blockers. Deciding whether to try Tamoxifen. My Oncologist thinks I most likely will have severe side effects. These drugs have caused severe depression and anxiety plus severe insomnia. I don’t want to take more drugs to alleviate the side affects.

JG, it is impossible to intelligently reply to your question, because you have not provided your stats.