Anyone refused Tamoxifen?

corian68 · May 2011

Just4life-

I will definitely let you know what my doc says on Tuesday. And share my treatment plan if you like? I am so excited to get started! I feel very empowered & I am ready to take control of my health.

It looks like our diagnosis was very similar, I was just stage 1.

You can PM me too;)

TonLee · May 2011

I'm 2 weeks into using Tamox and still fiddling with it to make SE more manageable. So far insomnia, exhaustion, and joint pain are the big ones...however, I am taking glucosamine for joints, and playing with the Tamox time so the exhaustion comes when I should be sleeping.

I believe the SE will diminish with time....

I understand how it is a personal decision tho.

What's ironic? Tamoxifen is a drug of choice for body builders using steroids...and they pay big time for it! Can you imagine?

corian68 · May 2011

Decisions like the ones we must face with this lame disease are difficult to say the very least. Not only should we consult more than one doctor, we should talk to women that are in the same boat. I don't think anyone on this board would make such a decision as to TAKE or NOT to take something like Tamoxifen because of someones opinion or experience on the subject.

Having said that....I do think it is very valuable to gather all the info you can on the subject.

After I told my oncologist no on the Tamoxifen, he asked if I would give him the info on the treatments I am going on through my NP. I don't fault him for not knowing about other options, he really doesn't have to know. But it is our job to know.

Peace

chico1 · May 2011

o2bhealthy

Your diagnosis was the same as mine and around the same time. Was interested to hear you stopped tamoxifen after 8 months. Are you taking any paticular supplements such as DIM or I3C? Have been on Femara, Aromasin and now Tamoxifen for the past month and feel lousy. Lots of shoulder pain and tendonitis. Have dropped my dose down to 10 mg of tamoxifen instead of 20mg and am tolerating better. Dr. not pleased but claims better then nothing. Would love to hear from you.

Chico

ovnemiro · May 2011

Peggy,

Here is a link to the original article. It was suggested to me by radiation oncoligist. Also I went to the Block integrative cancer center in Chicago and it was suggested to me as well.

http://jama.ama-assn.org/content/302/22/2437.full.pdf+html?sid=347afd8a-b9f7-4b91-a544-58cc6c488258

Here is an abstract

Context Soy foods are rich in isoflavones, a major group of phytoestrogens that have

been hypothesized to reduce the risk of breast cancer. However, the estrogen-like effect

of isoflavones and the potential interaction between isoflavones and tamoxifen have

led to concern about soy food consumption among breast cancer patients.

Objective To evaluate the association of soy food intake after diagnosis of breast

cancer with total mortality and cancer recurrence.

Design, Setting, and Participants The Shanghai Breast Cancer Survival Study, a

large, population-based cohort study of 5042 female breast cancer survivors in China.

Women aged 20 to 75 years with diagnoses between March 2002 and

April 2006 were recruited and followed up through June 2009. Information on cancer

diagnosis and treatment, lifestyle exposures after cancer diagnosis, and disease progression

was collected at approximately 6 months after cancer diagnosis

and was reassessed at 3 follow-up interviews conducted at 18, 36, and 60 months

after diagnosis. Annual record linkage with the Shanghai Vital Statistics Registry database

was carried out to obtain survival information for participants who were lost to

follow-up. Medical charts were reviewed to verify disease and treatment information.

Main Outcome Measures Total mortality and breast cancer recurrence or breast

cancer-related deaths. Cox regression analysis was carried out with adjustment for

known clinical predictors and other lifestyle factors. Soy food intake was treated as a

time-dependent variable.

Results During the median follow-up of 3.9 years (range, 0.5-6.2 years), 444 deaths

and 534 recurrences or breast cancer-related deaths were documented in 5033 surgically

treated breast cancer patients. Soy food intake, as measured by either soy protein or soy

isoflavone intake, was inversely associated with mortality and recurrence. The hazard ratio

associated with the highest quartile of soy protein intake was 0.71 (95% confidence interval

[CI], 0.54-0.92) for total mortality and 0.68 (95% CI, 0.54-0.87) for recurrence compared

with the lowest quartile of intake. The multivariate-adjusted 4-year mortality rates

were 10.3% and 7.4%, and the 4-year recurrence rates were 11.2% and 8.0%, respectively,

for women in the lowest and highest quartiles of soy protein intake. The inverse

association was evident among women with either estrogen receptor-positive or -negative

breast cancer and was present in both users and nonusers of tamoxifen.

Conclusion Among women with breast cancer, soy food consumption was significantly

associated with decreased risk of death and recurrence.

JAMA. 2009;302(22):2437-2443

Anonymous · May 2011

I have to agree with member and southport. I also took tamoxifen for 5 years and did fine. Lots and lots of women do fine, You just tend to hear more of the negative stories here rather than the positive ones. My mom took it many years ago and is now a survivor of over 24 years without a recurrence. I would just recommend a yearly transvaginal US to monitor both the uterine lining and the ovaries while on tamox.

anne

e67 · May 2011

I guess I wanted to ask you to discuss it further with your doctors and explore if you have alternatives to tamoxifen as it is only one method of hormone therapy to prevent breast cancer recurrence, and selecting the method that has the least side effects for you rather than throwing out the baby with the bath water. Statistically you will increase your survival rates if you are no longer producing eostrogen which grows the breast cancers. I have declined tamoxifen because it has been linked to higher risks of endometrial cancer which is in my immediate family. I am also passing on arimidex because of arthritis and weight gain (have enough of those already). So between ovarian removal and an implant of zolodex (which might suit you if you don't like taking drugs per se) I'm erring towards the last one. Not side effect free but suits me the best out of 4 options.

corian68 · May 2011

I am chiming in with the risk of once again being slammed...but let me remind one in particular: this is " Anyone Refused tamoxifen" thread....not "let's hear it for Tamoxifen"

For what it's worth? After my Hormone panel results come back, I am starting DIM, PSK, & in about 6 mo's Modified Citrus Pectin for Estrogen inhibiting and BC prevention. I will be medically supervised by a doctor just as I would be if taking Tamox.

Every patient is different, fortunately there are many options for our differences.

wishing everyone peace in their decisions:)

lust4life · May 2011

Hi Beesie and ladies for all your thoughtful and interesting replies. Beesie I consider myself to be a fairly low risk as I had a tiny 10mm tubular (invasive) cancer in amongst extensive but low -intermediate grade DCIS-my understanding is that if there were a recurrence this would be 'contained' and unlikely to spread, it does of course raise my risk slightly of a new cancer in the other breast as I am young-ish (37) but I just don't feel the benefits which don't seem great-will outweigh potential risks and side-effects. For me I just don't like the idea of taking a drug for 5 years to de-activate my hormones, if I have the choice- and I think I do.

Problem is that my breast care surgeon (she is a breast cancer surgeon) seems keen for me to go on it-I have discussed the fact that I seem to be low risk, which she agreed, but apparently still wants me to take it, probably based on my Van-Nuys score of 6/9 due to the extensive nature of my DCIS-the tubular cancer is being treated as if it was a non-invasive cancer in terms of my grading, apparently-hence the grade 0.

I started the thread as I wanted to hear other women's experiences- good and bad and to see what other women were offered who may have been in a similar situation to me- not to base a decision on, but for more information about how others reached their decision-for some that is clear cut and for others not so much, but I think it is useful to know how people have reached their decisions and what issues they have faced. I know that I will not take Tamoxifen unless I really have no other choice.

It's interesting also that other drugs have been offered to other women- I have only been offered Tamoxifen- this may be because of the funding system here for drugs, ie we usually only have the very cheapest drugs funded here....

rgiuff · May 2011

Lust4life, the reason you are probably only being offered tamoxifen is because it is the only proven drug available for premenopausal women. Which I'm assuming you are because of your age. Some women's doctors recommend aromotase inhibitors because some studies have shown that they give a slightly lower risk of recurrence than tamoxifen. However, they are only effective in postmenopausal women. In order for a premenopausal woman to take them, your ovaries would have to be put out of commission, either by surgical removal or by taking another drug which shuts them down, making you either permanently or temporarily in menopause. Obviously, not the ideal state for a young person's body to be put into, which is why tamoxifen is the drug of choice. While the estrogen is kept out of the breast cancer cells, the ovaries can continue to do their job which nature intended.

kalyson · May 2011

I am probably going to refuse Tamoxifen, too. I had the lumpectomy and am just finishing radiation. Since I have mucinous, stage 1, low grade invasive ductile cancer, and my MRI showed no evidence of cancer anywhere else, I am at pretty low risk of recurrence. My appt with the oncologist is in a few weeks and we will discuss the actual percentage, but I am pretty sure it will be very low. If so, it just is not worth it to me to expose my system to such a drug.

This article I found to be VERY interesting:

http://www.all-natural.com/tamox.html

Chocolaterocks · May 2011

I read the article with great interest- I have been taking 10mg for over a month- had gone to 15 mg and the symptoms got worse so I reduced it back to 10. Still would love to understand what I can do better and if I can eliminate this. My eyes are so dry... plus other symptoms.. Since I have ITC- which are controversial- I am scared despite my grade1, onco 1......

I really appreciated your article.

thanks

Chocolate

o2bhealthy · May 2011

((((Nancy))))

faithfulheart · June 2011

I agree with member of the club. Clearly by my dx, I have no choice but to take the white little pill.

However, I was 98% er pos, which actually makes it more effective.I am doing really well on it thank God, I've lost a ton of weight through diet and excersise. I also had my ovarie's out, but again, I have 2 small kids, advanced dx, and I want to do anything and everything to prevent a reacurance. My mother-in-law was stage o, very good prognosis. She still decided to take tamoxifen, she felt it could save her life, she just was not willing to take the chance and felt blessed to be able to take something after treatment was over. Remmember our triple neg sister's

don't have this option. I guess I am saying really give it serious thought, I feel blessed to have ongoing prevenitive care. Again i am not comparing my situation to your's, most all of the sister's here are very early dx, thank God! I pray everyone makes the right choice for them!!!

Blessings to all !!!!!!!!!!!!!!

isee · June 2011

I have invasive tubular carcinoma. I spoke to my oncologist last week after my last radiation treatment....I also had a lumpectomy and then a partial mastectomy as margins were not clear the first time (no chemo)...given the stats that he provided me, and given the fact that I am postmenopausal, I have decided not to take tamoxifen. He said that by taking it, I would reduce the risk of a recurrence by between 5 and 7%...but then when I look at the risk of uterine cancer and blood clots...I decided I would be better off without it. My biggest concern in taking it would be blood clots as I have varicose veins and have received treatment for them. I do think this is however an amazing drug that given the research, has been shown to prevent cancer recurrence significantly for those with more aggressive cancers then what I have. Tubular has a very good prognosis...I'm actually a bit surprised that they even did the radiation treatments. I echo what others have said...make sure you do your research based on your own diagnosis and do what you feel is going to give you your best long term quality of life.

Beeb75 · June 2011

I'd urge caution before anyone opts out of tamoxifen too hastily. I have seen too many women decide not to take it (and sometimes do alternative estrogen lowering approaches instead) only to have their cancer go metastatic within a few years. In fact, a young woman just showed up on another breast cancer support site in that exact situation. She was Stage 2B in 2008, did chemo but refused tamoxifen, and now has metastatic breast cancer. (PM me if you want proof, I could point you to other examples as well.)

Of course, some people take tamoxifen and still have progression of their breast cancer, but studies show that tamoxifen keeps that from happening for many women. Like this study, which is considered a gold standard:

http://www.ctc.usyd.edu.au/cochrane/publications/EBCTCGpaper.pdf

How would you feel if you were the unlucky woman who had a chance to take a life-saving drug, but turned it down because of side effects (some of which might never have affected you)? And then your cancer became metastatic?

Some people who opt out of tamoxifen are taking a bigger risk than others, of course, depending on their stage at initial diagnosis and other factors like age. And I'm sure some side effects really aren't worth living with, and that person prefers to take the risk of cancer progression. I just think everyone should think long and hard about their decision, and be fully aware of the worst-case scenario (and the likelihood of it.)

That said, I'm taking my Tamoxifen and so far have side effects of hot flashes and joint pain. But it's nothing a little aspirin doesn't help (which lowers the risk of blood clots too) and those minimal side effects are a hell of a lot better than dealing with a terminal cancer diagnosis.

Even if I were the unlucky 1 out of 1000 women who gets uterine cancer from Tamoxifen, that's much more curable than metastatic breast cancer, which, given my cancer stats, I'd have about a 12 out of 100 chance of getting without Tamoxifen.

peggy_j · June 2011

Beeb75 (and others), thanks for the reminders. Yeah, I was thinking if I were ER-/PR- I wouldn't have this option to reduce my risk. FWIW, I am 95%ER+/95%PR+ so my MO's logic is that I have a greater than avg expected "benefit" from tamoxifen.

TonLee · June 2011

Me too Pegs!

BeckySharp · June 2011

I was so hesitant to take tamoxifen but after listening to my oncologist and some advice from Beesie I decided to at least try it. I started on March 25. So far not one side effect--that also worries me--am I metabolizing it well? My oncologist said for sure I would have hot flashes--but again not one! I also never had them when I went through menopause (I am 63). If I ever have my bc return I want to be able to say I tried all that I could. I do feel a little more moody, so maybe there is a little side effect. Each person has to decide for themself. I forgot to add. I have not gained weight and I do gain very easily. I also have developed lymphedema and have not exercised as strenuously as before and have still not been gaining.

peggy_j · June 2011

BeckySharp, one friend had horrible SEs on tamox (her MO said hers were the worst he'd seen) and she said her mother also had bad SEs during natural menopause. So my friend (no expert) seems to think there's a link. i.e. many of the tamox side effects are ones we'd see during menopause? Some bodies have a harder time responding to the "change" in estrogen, regardless of the reason??? (and maybe you drew a lucky card, the easy menopause gene

MaryChambers · July 2015

Hello Marie Kelly,

I saw you post and although it has been a long time since you wrote this, do you still feel the same way, that you are glad you did not take the Tamoxifen?

Moderators · July 2015

Hi MaryChambers,

Welcome to Breastcancer.org! You may want to start your own thread in the hormonal treatments forum to better help you reach others who are actively posting. This thread hasn't been active since 2011 and it's likely many of the members here are no longer posting on these boards.

Let us know if we can help!

--The Mods

Anyone refused Tamoxifen?

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