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How do I know if Tamoxifen safe for me?

malewine
Posts: 1
Joined: Apr 2011

I was diagnosed in Sept of 2010 with Stage 3 bc. 2 tumors in right breast with 4 out of 18 lymph nodes involved. After undergoing a lumpectomy, 8 rounds of chemo (every two weeks) and 30 rounds of radiation, my dr has prescribed Tamoxifen for the next 5 yrs with an AI for 5 yrs after that.

After researching the drug, I am now too afraid to take it. I am really struggling with the side effect possibilities. I'm afraid that taking this to prevent a re-occurrence will result in a diff cancer. Would I be better off with a double mastectomy to prevent the issue?

Please share with me your thoughts and experiences with this med.

Thanks so much and God bless!

Mary

BioAdoptMom
Posts: 358
Joined: Mar 2011

A double mastectomy will not prevent it from coming back because it could come back somewhere else in your body. I have been worried too because I know I will be taking it after chemo and rads. I have PCOS and the risk factors for that are also uterine cancer and blood clots. I certainly do not want to double my risk. Someone on here suggested talking with my GYN. I have an appointment on Tuesday and am going to do just that. I would consider it. There are other options I understand too, like having your ovaries removed. Let us know what you decide to do. (((HUGS))) and prayers for your wisdom.

Nancy

disneyfan2008
Posts: 5437
Joined: Oct 2010

I was just taken off Tamox after just over 2 yrs..on it..

I thought I did not have many side effects...some: trouble sleeping, leg cramps, night sweats...but I also have thickening of uterus (have internal ultra sound followed by D & C each six months...recently I started bleeding after 4+ yrs of NOT...so taken off tamox..

at this point I am not sure what the Dr will put me on or IF I want to take anything else? HOW much does it help Vs not taking anything!

I will do much research prior to starting something new..I have been just doing what ever my Dr says...now I think I'll really research..

AT the start I was told pros outweigh cons..now I am not sure..

Denise

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

I had a double mastectomy AND am on tamoxifen for the next 4 1/2 years. I researched tamoxifen & it's side effects also and THEN i talked to my doctor about it. He said the risk of uterine cancer is extremely rare, and I have to be sure to have a pap exam yearly, which I do anyway. When it came down to it-the benefits of tamoxifen far outweigh the risks & the only side effects I have are mild hot flashes, mostly within the first few hours of taking my pill.
*hugs*
heather

roseann4
Posts: 994
Joined: Sep 2009

You can't go by the potential side effects. If I did, I would have declined Arimidex. So far, 2 plus years later I have no obvious side effects. The docs will look for issues along the way. I recommend you at least try taking it before you rule it out. Don't you hate all these decisions?!

Roseann

disneyfan2008
Posts: 5437
Joined: Oct 2010

(dont 'know offical name) MY gyno didn't do as rule of thumb but did at onologist highly recommended suggestion. I had 2 so far followed by D & C each time due to YES I DO HAVE THICKENing of uterus.(more each time) so now off tamox next week come up with different game plan!
also NOW have bleeding which I have not had in over FOUR YRS

Denise

Lynn Smith
Posts: 1265
Joined: Mar 2011

I was fearful to start the med.It took me about 6 weeks.I have alot of allergies why I was hesistant. I am doing OK since but my hair is thinner.I still have 3 1/2 years to go.I will keep taking it since the doctors seemed to think it is a protection. I don't worry about uterine cancer(I had total hysterocomy).I had some blood in my urine but I found out I had kidney stones.I have varicose veins but no problem with clots etc.

My friend was on it for 5 years and something else for 5 years.She is a 16 year survivor.She just recently had some bleeding but they found nothing.I am told this can happen with women by my doctors.Blood for no reason after all tests have been done.

Like someone said "Uterine cancer is rare".I believe that too but I feel comfortable not having any female organs since I take it.A better protection. A few less places to get cancer.

Now when I am done with this it will be a fear for the next drug they will put me on.Gee I may not have any hair.AND I didn't have chemo or radiation.

Lynn Smith

RozHopkins
Posts: 471
Joined: Dec 2010

Only been on Tamox four/five month. Dont think anyone knows how we will react to this drug. I did ask oncologist and he insisted it was my only option as I am still pre menaposal and cancer was estrogen positive. Had bilateral mastectomies and four chemos. Tamox. has been fine except for hot flashes and I had a reaction with Cymbalta which was resolved by taking the tablets apart and not together,is obvious now I think about it. Both these drugs are strong. Good luck with your decision making.

Double Whammy's picture
Double Whammy
Posts: 2321
Joined: Jun 2010

This is just my personal, non-medical opinion (as usual). Endometrial cancer is indeed a known potential side effect of Tamoxifen. It is also a rare side effect and you will be carefully watched for it. So if you do develop endometrial cancer from Tamoxifen, it will likely be very early stage and early stage endo cancer can often be cured by surgery (hysterectomy and bilateral oophorectomy) alone. It is still cancer, tho, and is, of course, always something to worry about and something nobody wants.

It is also known that Tamoxifen (or aromotase inhibitors in the case of postmenopausal women or women who have had hysterectomies) is very effective in preventing or delaying a recurrence of estrogen receptor positive breast cancer - most of the time.

From my gynecologic oncologist, I learned that it is not unusual for women to have both breast and endometrial cancers over the course of their lifetime - basically because the risk factors are the same, and this has nothing to do with Tamoxifen. I'm the classic case, having developed both - and at the same time. I certainly had not been on Tamoxifen or Arimidex and I got endometrial cancer. A woman can have endometrial cancer first and then develop breast cancer down the road or visa versa.

It must be difficult to put yourself at risk for endometrial cancer by taking Tamoxifen, but without it you're allowing your ovaries to continue producing estrogen which your breast cancer may just love. Can you be sure that every single cell of breast cancer is gone or are there some waiting for some estrogen to get their second wind and reproduce? It's a crap shoot either way, and only you and your oncologist can decide which is the least risky in your case. Get all the facts as they relate to you, and then get some more. You don't know what, if any, side effects you will have. I'm quite fortunate. So far, I have none from Arimidex after 4 months.

Good luck with your decision.

Suzanne

CypressCynthia's picture
CypressCynthia
Posts: 4011
Joined: Oct 2009

I firmly believe that the only reason I am alive is tamoxifen. When I was diagnosed with Stage 3A (large tumor, 4 nodes, ER+) in 1987, my prognosis at that time, even with mastectomy, radiation and chemo, was about 25% chance of making it 5 years later. The new kid on the block back then was tamoxifen. I took it for 7 years, because, back then, we weren't sure if I shouls take it or how long I should take it. We winged it ;-).

Obviously, that gamble payed off because I am alive and kicking 24 years later!

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