Does anyone say no to Tamoxifen

Rose, someone else (I think FitChik) was having terrible side effects from an AI and took a brief vacation.  When she went back on the SEs disappeared and she's been on it, comfortably, for years.  I don't know why this would be, but I hope you have that experience as well.  I'm glad you went back on after your vacation.

It really isn't a choice at all.  I will put myself into menopause and switch to an AI.  I dread it, but I was stage IIb and I feel like I have to do everything possible to be around to raise my children.

Member, I have a friend at work who was also Stage 2b.  She went the whole route of Bilat MX, Chemo, Ooph, and has been on an AI for about 7 years, is now 47.  She says it's not easy, constantly fighting the side effects, but feels as you do, that this is what is keeping her alive. 

I sometimes try to picture myself being that stage or even having younger kids (my youngest is 13) and wonder if I would feel less resistant to more extreme measures.  I do wish that there were better options to keep the cancer away, without denying us our hormones.  I keep hoping that soon a breakthrough will come.

Vivre:  Thanks for the links.  You are right the oncology doctors do have us scared to death.  My dentist (male) told me today that the doctors are doing overkill on ridding our bodies of estrogen not thinking or caring what it is doing to us.  Got rid of the cancer but look at me now I look like I have aged 10 years in five months and feel like crap..... 

I am glad I came across this forum.  I don't think I am going to rush right away to get my ovaries out until I get some other opinions from other doctors.  It just scares me that I will get ovarian cancer next if I don't get them out.

I was offered Tamoxifen and declined (too many side affects, min. % of reoccur, etc.)--I have no regrets.  Just saw my breast care surg....2 year anniversary is right around the corner...all is well--woo-hoo!. Erin

I quit Tamoxifen this week after 3 1/2 months of hives, itching and then THIS!  Swelling lips and airway constriction. 

My oncologist said that so long as I am not having periods anymore ( I was premenopausal age 44 before being diagnosed last fall but have since stopped having periods) and after chemo this spring now testing post menpausal, then he is not concerned about me not taking it.  He said that estrogen is not the bad guy, but rather un-opposed estrogen. Read the book What Your Doctor May Not Tell You About Breast Cancer . It is fascinating!  My doctor also cited studies done in Europe showing that women who quit menstruating after chemo, did no Tamoxifen, showed same lower recurrence and better survival stats as the American studies WITH Tamoxifen.  He thinks that the studies are scewed by the pharmcy companies who run the studies to support their drug they want to push. He may have a point.   The FDA never cites these studies done elsewhere on the world.  Also our medical system allows for people to sue their doctors and these doctors are paranoid about not keeping you on SOMETHING, some type of drug, Tamoxifen or A.Is and so regardless, they prescribe it to all women. He said also the figures given on survival and recurrence are on women who took Tamox. 10+ years ago with chemo drugs that were not as targetted and as good as the ones they are using today. They also don't factor in Herceptin use, which I am on. Even adjuvant online is so far behind the times that it doens't factor in this Her2 status or treatment which has been around for 5 years for adjuvant treatment.  So why is my doctor telling me all of this?  I am seen at a military hospital, which in a sense is like socialized medicince.  My doctors don't wake one dollar more if they do 10 mastectomies in a month or just one.   They practice medicine and not for profit.  So in many ways, they are not as influenced by drug companies or malpractice worries.  Something to think about.

Tammy,  first of all tamoxifen is not under patient anymore, so it is not an expensive drug, relatively speaking.  It has been around for a long time.  Secondly, if I remember correctly, it reduces the rate of recurrence by 40%.  For me, as that is a relative figure taking tamoxifen for five years would reduce my risk having a recurrence by 10% or so, from 26% or so to 16%  Given that the rate of serious side effects from tamoxifen is small, I think advantages outweigh the disadvantages.  I couldn't say the same thing about chemo, which would have reduced my recurrence risk by 3% to 5%, so I didn't have chemo.

So far so good.  I haven't had any major side effects from taking tamoxifen. 

My Onc. told me Tamoxifen is the only thing to keep me from having mets. so, I think I'll take the risk and continue to protect myself from more cancer, until they come up with something else.

I hear you Dawnn, I'd much rather deal with tamoxifen than removal of ovaries!

My oncologist said she thinks Tamoxifen will stop my periods. I am just 44 last month and my Mom had periods into her 60's...So, being 90%ER 80%PR positive....with an oncoDx of 6....

Tamoxifen seems a good idea. Until you think about the other 10% of my cancer cells who are ER negative....Do we just let those guys grow? Yes, we do. That is why girls on Tamoxifen who have recurrences are more likely ER negative....

This is not rocket science, with all of the brilliant minds in this country working on this, why are women dying? Tamoxifen has been the drug choice for 20 years. TWENTY YEARS!!!

Boys were popping it in high school to get big muscles. With the research going on, nothing better, has been found in twenty years? And the dosage?

Everyone take 20mg?

I weigh 108 pounds....do I need the same dose as a 300 pound woman? I have found only two trials & it shows effective reactions at much lower doses. Do any of you have information on dosages?

Dawnn, boys were taking TX in high school?  I hadn't heard that.

It's a personal decision of course but why remove your ovaries if you are not a BRCA carrier? And for Stage I disease? It seems like such an aggressive approach. Why not take the tamoxifen? That at least is not permanent.

Lastly, I would (if it were me) not ask a Gynaecologists about hysterectomies and removing of ovaries. For them this is big business $$$$$. And most gynaecologists don't know that much about breast cancer. I would have a good discussion with my oncologist first before doing something so irreversible.

Best to all,

Helena.

Helena-They do have something without side effects. It is called i3C/DIM/Myomin which is derived from cuciferous veggies. It does the EXACT same thing as tamox, which is inhibit hormone receptors. It does not block hormones as the AI's do. The AI's have even more serious side effects. We also have iodine therapy which is showing promising results. Go to breastcancerhoices.org and link to the studies. The problem is doctors seem to only believe in the heavily funded studies while dismissing anything else. They should be doing the research. We all should be doing the research before making these decisions.

I had a full hyster/ooph in May, when I had my implant exchange.  I'm fine, I cannot argue what may or may not be happening in my body since we don't really know the role of ovaries after menopause, but I think if you are going to have a difficult menopause, whether it is natural, chemical, or surgical it will be more difficult.  I started taking Tamoxifen in December and at first had dry eyes, some vaginal discharge, I had hot flashes, and my periods stopped.  After several weeks my eyes were fine and the discharge stopped.  I continued to not have my periods.  I still have hot flashes, but for me they are not a big deal. I'd rather have a hot flash than go to the dentist, or do my taxes. I chose to have my ooph because I was 100% ER/PR positive and based on oncotype didn't have chemo.  To me it felt like the right thing to do, my oncologist never suggested it, but when I asked him about it he said it is how I would be treated in many European countries and they have the same or better survival rates with women who have a similar diagnosis.  I had my uterus out because I wanted to remain on Tamoxifen since the CYP2D6 said I'm a good metabolizer, and I had few side , and I didn't want to worry about any possible SE, although low, related to my uterus. I've lost weight since taking Tamoxifen, and the hyster/ooph surgery, mostly because I've cleaned up my diet and ramped up my exercise. I'm enjoying not having my period after bleeding heavily for 5 days a week since I was 11, I was ready to be done.Becoming a post menopausal women whether medically induced or as nature intended brings with it a sense of loss, our fertility is gone, and it is devastating to women who are younger and still want children, but for those of us in our late 40s and 50s, menopause is what our bodies do.  Yes, maybe if men went through it there would be different treatment options, but men have to share their lives with us, they have wives, mothers, sisters, daughters--do you think doctors and medical researchers really don't care about women's health?  Someone mentioned prostate cancer, those with it don't have the greatest options either, and the treatment can include hormones that give them some female characteristics--they can grow breasts.  Often it leads to sexual disfunction for them.  Cancer sucks, there are no easy answers.

I am a single mother, work full time, and I'm starting graduate school in two weeks, and will continue to work full time.  I do Pilates, run, aqua jog, train on the rowing machine (former rower), use the stair master, hike, and lift weights.  I'll be 50 in a few months and someone I met yesterday guessed my age at "aroung mid 30."  I cannot speak for others, but being on Tamoxifen or having my ovaries out have not aged me over night as some worry about, as I worried about.  Frankly, I think the stress of dx ages us more, at least that is how it felt to me.

I am LESS moody since starting Tamoxifen and having my ovaries out, than I was before, but again, I'm sure that is different for everyone.   

I had an oncologist gynecologist perform my surgery (a total abdominal hyster/oop), she made a total 1254.00 (and she did an apendectomy that I requested since some times I'm far from medical care for extended times), and she is one of the best in Oregon.  It is not a huge money maker in fact several weeks later I went to have my dog spayed and all the vets in my area charged 450.00.  When I asked how long it took for them to do the surgery and compared it to the surgery time it took for my hyster/ooph the pre (2) and post op visits (2) (included in the above insurance payment)--the VET makes more money than the doctor.

Regarding body size and the Tamoxifen dose.  If you use aspirin, Tylenol, allergy medicine, vitamins, antibiotics, anti-depressants, cholesterol drugs, flu shots, etc. do you change the dose because of your body size?  In the beginning the common dose of Tamoxifen was 40mg, and they have dropped it because there is success with the lower dose.  Have you read the potential SE for most antibiotics, heart medications, or even allergy meds?  Tamoxifen is vilified because it can cause some uncomfortable SE, but it may also save your life.  All of what I've written is about personal choice, and I support any decision a woman makes for herself, hopefully it is made out of personal research beyond the web, that includes mainstream scientific journals and alternative literature, many conversations with doctors, naturopaths, and other health, or alternative providers.  I hope decisions are based on one's own judgment after seeking answers for herself, and not on fear and urban lore. We are all survivors of a complicated disease, which in fact is many different diseases that fall under the two words "breast cancer."  Unfortunately there is no one simple answer--overweight/skinny, meat-eaters/vegans, couch potatoes/ultra-athletes, young/old, breast feeders/non-breast feeders ALL get breast cancer.  We just have to be as informed as we can be and make the decisions that we feel are best for ourselves, and continue to live our lives.

Karen