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I may have to start taking Timoxifen. Have goggled side effects and it is a long list. Have any members taken this drug and what was your experience? I appreciate any feedback.

I've had friends that took it. My SIL had no side effects and the other had minimal side effects.

Good luck in your journey.

I took raloxifine for about 10 years because of a high risk of breast cancer. It was recommended for 5 years but wound up having a beneficial effect on my osteoporosis so I remained on it. My understanding was that it is similar to tamoxofine.
I had no negative side effects and am so far, cancer free.

Thanks for the replies! The side effects list is so long and honestly a little frightening. It's so helpful to hear the experience of others to determine if the benefits outweigh the risks.

Nanatwo, I am debating starting this drug also. I am high risk for breast cancer. I have had awful hot flashes for the past seven years which my Dr said would most likely get worse with tamoxifin. I am also concerned about some of the other potential negatives of taking it.

It's not an easy decision. I certainly don't want cancer either.

Good luck with your decision.

Zebra25 - I sympathize with your struggle to decide about taking the medication. It doesn't really seem much of a choice - possibility of cancer or taking a drug that could possibly also adversely effect your health. I've goggled the medication and that just bought up more questions. Right now we are still in the waiting stage - once I get the diagnosis I will definitely discuss it further with my doctor. It is just very helpful to hear of others' experience.

Have you found anything helpful in trying to make your decision?

No. Unfortunately I am kind of stuck.

My horrible hot flashes make my anxiety worse and I am having a hard time agreeing to take something that will make me even more miserable.

I also have some GI issues that this drug could potentially make worse.

I really don't want to end up with cancer so I just go round and round trying to balance quality of every day life with the potential benefit of taking this drug.

I would love to hear any information or thoughts you have if you are comfortable sharing.

Best wishes for whatever you are dealing with.

Zebra25 - I know what you mean about being stuck. I guess it is just the fear of the unknown. Of course I don't want cancer - but I just wonder how prevalent are the side effects. Guess most people would say any side effect is better than cancer - but I believe in the quality of life verses quantity of life. I don't want to be dealing with debilitating side effects.

My doctor has suggested if I do need to start the medication and if side effects happen we can discuss other options. Just hearing other peoples experience is very helpful.

I will not know for a couple more weeks if I will have to start taking the medication (I know I seem to be jumping the gun - I just want tp be prepared).

Please let me know what you decide. I know your existing health issues make it even harder to decide. Wishing you peace in whatever you decide.

Nanatwo and Zebra25, I'm sorry you need to make decisions regarding a drug that could be a savior IF you can tolerate it.

I took Tamoxifen for 2.5 years. It had started to give me what I called "grand mal" hot flashes. I would sweat through my clothes and nearly faint with my heart beating so hard and also hear and feel it pounding in my head. It also caused me to need two uterine biopsies. The first was not too bad, the second awful. There were a couple of other very minor things, too. My doctors and I decided I needed to quit and it all subsided rather quickly. I tried Raloxifene after a while too, but it started those symptoms again and went off it immediately.

My sister, on the other hand, took Tamoxifen for 5 years and never had a single side effect.

You won't know until you take it for yourself if you need to. It won't be easy to decide, and I hope you either learn you don't need it or tolerate it well if you do take it. Be well.

thebighurt - thank you for your reply - hearing from others really is helpful. Are you not taking any medication currently?

I know the prudent thing would be to try the medication - can always stop if I want to.

Thanks again for all the replies - they really do help.

Best wishes to all who are on this journey.

I was started on Tamoxifen after a bilateral mastectomy, chemo, radiation. It started ok, then like someone else said the mother load hot flashes started, they instantly made me very angry, I swear I grew horns out of my head! then I got a lot of body pains. Stopped that and was put on Exemestane, ( always reminds me of a wild horse), still had similar side effects, took it on/off for 4 years. Had my tumor analyzed for the possibility of the cancer reoccurring, the results came back low possibility, by then I ended up with osteopenia, made the decision to stop all the medication. Started to feel so much better. Doctor wanted me to take for 10yrs as the cancer was in my lymph nodes, I had to weigh the quality versus quantity and the fact the tumor recurrence percent was low. It will be 6 years this fall since treatment. I feel good. When I was taking the medication and struggling for the years I took it, I kept saying to myself, l"m taking this for my kids and grandkids, but, I have to feel half way good. By the way, if your results are positive, think about having the tumor tested for the possibility of reoccurrence, I had to pay a lot out of pocket for this and I forget the name of the test, but your doctor will know. Just remember, it’s one day at a time, one treatment at a time. And the possible side effects of any medication can be a bit scary.

Best of luck….keep posting if you have more concerns.

Thank you thebighurt and countingsheep for posting your experiences. I have had a few others tell me about similar experiences.

I have an increased risk (I was originally told 30% but my last report looked like it increased) of developing breast cancer. My Dr wanted me to take tamoxifen for five years to lower my risk.

I'm a little confused about how much it would lower my risk. If it would only lower it a small amount I don't think it would be worth it.

I have my annual MRI this week. Besides worry over the results I am very claustrophobic and struggle to make it through the scan.

Thanks for starting this post nanatwo and thank you to everyone for sharing you experiences.

Best wishes to all on your journey.

I've just started on tamoxifin...since Feb.

I'm 46, not in menopause yet. Officially done with breast cancer treatment.

I also have a genetic mutation that increased my risks for breast cancer. It's not one of the BRCA genes, but a lesser known one (chek2). My gene is also associated with prostate cancer (not a worry since I don't have one) and colon cancer (so far, so good there).

The side affects for me have been minimal. Mine are mostly extra vaginal discharge (tmi?). I do get hot flashes on occasion.

I am fortunate that the hot flashes come on at night, and they aren't disruptive to my life (at least in the same way cancer treatment was.). Because of that, staying on the drug is my preferred path.

As long as I stay on tamoxifen and do my part, my risk of reoccurance is about 1.5%, even with the mutation.

My mom had breast CA, lowest stage, cured with a lumpectomy and radiation.
Unfortunately my mom diagnosed about 3 months into HRT for menopause, and had wicked hot flashes. So back then 30 years now, they had just released studies showing links between increased chances of breast CA, and hormones.
So my uptight mother, had her hormones ripped away, in addition to dealing with breast cancer, working full time, and radiation treatment.

She flat out refused any meds to help her deal, like an antianxiety, or antidepressant to help her through. So when it came time for Tamoxifen, she also refused it. To her dealing with daily/nightly hot flashes for "the rest of her life" (recommended treatment then) was not something she was willing to do.

Like I said she is now 30 years out, and not so muuch as a scare of a recurrence.

But I would urge anyone who is being recommended this drug to speak with their Dr, and a pharmacist on how to deal w/ the side effects if that is your biggest concern, and of course length of treatment.

Thanks for all the replies and words of encouragement. I was suppose to have surgery with biopsy yesterday, but surgery has been postponed til next Monday. I had breast cancer 10 years ago - last mammogram and US showed atypical cells - if surgery shows no cancer - just the atypical cells my doctor recommends the tamoxifen.

I have pretty much decided I will at least try the medication and see how it goes. I will not start the med until the end of summer as we have plans to take trips to see my sister in Ohio and our daughter and granddaughter in Texas and I want to enjoy the visits and not deal with any possible side effects.

I so appreciate everyone's support and just wish this was a decision none of us had to make.

Nanatwo, good luck with your surgery and biopsy.

Nanatwo, good luck on your upcoming procedure. Keep your head clear and positive. How the medication makes someone else feel, the next person may do just fine. I was also given Gabapetin to help with the hot flashes, it helped, but then that medication makes one sleepy. So there’s combination things to help. You get through one step at a time.

I was on Tamoxifen for several years after breast cancer surgery, chemo and radiation. I had no issues. One of the things I did discover is that NATURAL FABRICS ONLY are your friend. Any fleece, polyester or blend tends to exaggerate the hot flashes. So my wardrobe is now cotton, linen and wool. Don't forget bedding as well--only cotton or wool blankets and sheets.

I'm now on Arimedex, and still have no issues.

If you're careful about not overheating yourself in situations where it would be uncomfortable or embarrassing, this can work.

Cat