Tamoxifen

survivor81 said:

Suppose to say I had four

Suppose to say I had four chemo treatments

I'm sure every decision is relative to our ages.  I had a bilateral last May at 62 y/o and am on Tamoxifen.  I wouldn't take it for the first three months because of all the crazy side effects I read and heard about.  My mass was estrogen/progesterone positive by 98%, so it was a no brainer for a post meno woman my age, said the Onco!  That's when I came to this board to ask if anyone had refused it or had side effects, etc.  In my case, I can say in my 1st 9 mos on it, no SE's that I've noticed.  You can go back to my original post titled "Afraid to start Tamoxifen" and read the replies.  I ordered the med after I read the answers and have taken it since.  I hope you'll make the right choice for yourself.  Hugs, Linda 

49 lumpectomy-8 wks radiation and just finishing up my 5th YEAR of tamoxifen. About 3 yrs in to taking it I did have hystercotomy (NOT TO scare you) due to thickening of uterus. MY oncologist insisted on @ 4-6 mths an internal (Not sure of offical name) ultra sounds followed by D & C..

I have not had any noticebale  side effect such as hot flashes, fatigue etc..

Denise

disneyfan2008 said:

49 lumpectomy-8 wks radiation

49 lumpectomy-8 wks radiation and just finishing up my 5th YEAR of tamoxifen. About 3 yrs in to taking it I did have hystercotomy (NOT TO scare you) due to thickening of uterus. MY oncologist insisted on @ 4-6 mths an internal (Not sure of offical name) ultra sounds followed by D & C..

I have not had any noticebale  side effect such as hot flashes, fatigue etc..

Denise

I was like lintx.I waited 2 months. Had the med but put off taking it.I went to my breast surgeon and he said it will prevent me from getting other cancers. In a few days I took it.

My friend is a 19 year survivor.She took tamox 5 years another drug for 5 years and said she wants to take more but all there is.She felt comfortable with those meds and she's like me hates to take pills.

I've missed a few here and there.Just not sure how many so I might go a little longer.My friend went 3 months longer on the tamox and I'm sure she was faithful and never missed a pill.

Fortunately I had a total hysteroctomy and my doctor told me I was a good candidate to take tamox.

It is a protector from the cancer returning or getting another type.That's what I've been told.

Lynn Smith

disneyfan2008 said:

49 lumpectomy-8 wks radiation

49 lumpectomy-8 wks radiation and just finishing up my 5th YEAR of tamoxifen. About 3 yrs in to taking it I did have hystercotomy (NOT TO scare you) due to thickening of uterus. MY oncologist insisted on @ 4-6 mths an internal (Not sure of offical name) ultra sounds followed by D & C..

I have not had any noticebale  side effect such as hot flashes, fatigue etc..

Denise

I am suppose to start tamoxifen after I finish radiation.  I am like you, after reading so much about it, I am not sure I will.  I still have time to decide.  There is no rush as far as I know.

Tamoxifen two and half years then switched to Arimadex.  To be honest not sure if what I thought were side effects indeed were due to this drug but I am feeling a different person on Arimadex.  There is certainly not any easy answer it must have something to do with our individual cancers and chemical balance plus age etc.

Bilateral, Estrogen Positive here.  Seeing Oncol next week and asking if possible to take Arimadex for six years giving me ten year coverage in total.  He is a big believer in 10 years duration especially if Estrogen Pos. and at my age 57 I need to make sure ovaries are done working.  

On Tam my bone aching stopped me going to the gym.  Now whether this was arthritis I don't know but it has now disappeared since changing meds.  Discharge and fatigue.  Hot flashes weren't bad they were horrendous.  I hardly ever wasn't having one.  Then again Arimadex just appeared to stop them immediately.  I also was put on a three monthly implant to help meno on its way, there is that to consider too.

Still have fatigue and a slight headache a lot of the time, quite happy as things are at the moment.

Cancer2013 said:

48 bilateral masectomy and

48 bilateral masectomy and four chemo treatments.  I have currently been on tamoxifen for a year.  I have never had anything wrong with me until last year when I found out I had breast cancer.  Now, I think I have everything wrong with me.  My greatest fear is ovarian cancer.  How did you know your uterus was thickening.  My mouth is dry and I am very emotional.  I hate to stop taking the tamoxifen but I just don't know what to do.

I haven't started it yet either.  I've read about it and not liking a lot of the side effects.  It's good to know that some have none, but, I thought if you don't have any side effects, it's a sign that it isn't working?  That you aren't metabolizing it?  There is a test for that, but, I can't think of what it is now. Maybe someone else knows?

I have been on tamoxifen for 3 yrs, I didn't think twice before I started it. I was so affraid of the cancer coming back that I went right into taking it. One year into taking it, I started have horrible pain in my scalp, horrible thick flackes that made my scalp bleed, couldn't wear anything dark or you could see all the dander on my top and it itched uncontrollably. I started with a dermotologist to figure out what was going on. Never thinking that the tamo was causing this issue. Then I started breaking out with terrible rashes on my legs, I looked so bad. Middle of summer long pants on, no dresses. I had been having the achey bones, hot flashes ect. ect.....all the normal side effect. About 2 months ago I stopped tamo, my husband had been reading up on the drug and he found that it can cause these reactions in rare cases. Within 3 weeks of stopping everything cleared up. Waited 2 more weeks and started it up again. Everything came back! Called my onc, just saw him this morning, he wasn't happy that I had to quit it becasue he felt that was my best chance, but he completely understood that I need to try another one. So I am moving on at arimadex (sp?) tonight. I was willing to work with all the normal side effects, but the scalp I just couldn't stand it anymore, it was driving me crazy. I feel so much better not being on tamo, my mood is better, my body feels better. Hoping that the new drug is not going to rain on my parade! I know it is a small price to pay to be alive and I will gladly do it! Marianne

Mariannemm said:

Stage 3 Lobular 12 positive lymph nodes

I have been on tamoxifen for 3 yrs, I didn't think twice before I started it. I was so affraid of the cancer coming back that I went right into taking it. One year into taking it, I started have horrible pain in my scalp, horrible thick flackes that made my scalp bleed, couldn't wear anything dark or you could see all the dander on my top and it itched uncontrollably. I started with a dermotologist to figure out what was going on. Never thinking that the tamo was causing this issue. Then I started breaking out with terrible rashes on my legs, I looked so bad. Middle of summer long pants on, no dresses. I had been having the achey bones, hot flashes ect. ect.....all the normal side effect. About 2 months ago I stopped tamo, my husband had been reading up on the drug and he found that it can cause these reactions in rare cases. Within 3 weeks of stopping everything cleared up. Waited 2 more weeks and started it up again. Everything came back! Called my onc, just saw him this morning, he wasn't happy that I had to quit it becasue he felt that was my best chance, but he completely understood that I need to try another one. So I am moving on at arimadex (sp?) tonight. I was willing to work with all the normal side effects, but the scalp I just couldn't stand it anymore, it was driving me crazy. I feel so much better not being on tamo, my mood is better, my body feels better. Hoping that the new drug is not going to rain on my parade! I know it is a small price to pay to be alive and I will gladly do it! Marianne

I hope if you decide to take tamox, that you will get along well with it and have no or few side effects. 

grannabeth said:

I am unsure of the tamoxifen, too

Survivor 81,

I understand your situation with the tamoxifen.  I am in exactly the same boat. I see my medical oncologist on Tuesday for blood work and then a discussion about going on tamoxifen.  I finsh my rads next week, too. So it is a big week for me next week.

The SE of the tamoxifen are scary.  I don't want the hot flashes since I never had them when I went through menopause the first time, so to me that is a big drawback.  But I am still going to research some more before Tues and then hopefully be a more informed patient with intelligent questions when I meet with the doctor. 

Anyone out there have good resources that we should be reading about this drug?

Good luck to you and let us know what decision you make about taking it.

Grannabeth

Breastcancer.org has LOTS of separate topics and discussions.  You ought to check out the tamoxifen and hormone therapy discussions there.  You will get a lot of information from many that are on the drugs. 

Good luck tomorrow and can't wait to celebrate your finishing rads!

Hugs, Megan

Hi -- I was dx at 32 in 2011. I harvested my eggs, took chemo, radiation and now taking tamoxifen (going to two years on it). I did a lumpectomy although I wish I would have done a mastectomy.

Tamoxifen is my other weapon to fight cancer. I would take anything they throw at me to keep cancer away. Cancer is no fun as you know. Tamoxifen has side effects, but the worst ones (edomentrium cancer) are in the low %.  As a prevention, I do vaginal ultrasounds every 6 months. I have cysts in my ovaries and have missed periods twice. Otherwise, I keep getting my periods every month (yes i have a lot of estrogen). My worst side effect with this pill was depression which I experienced for close to 3 months. Then it slowly faded after my body got used to it.

I choose weapons. In a way I feel lucky I was estrogen + because that gave me more choices to try and fight. If you have this choice, I suggest you use it. You don't know how you would react to this drug until you take it.

I get my treatments at Sloan and they told me older women have a harder time with tamoxifen (e.g. bone pains, cancer). Young people hardly get any side effects. I think you should try it and see how you react to it. The studies now show 10 years are safer then 5. Not fun. I know. You can talk to your Onco about pregnancy once you're ready. She will advise you best.

I want to have a child too but I am scared. I was told the estrogen produced by pregnancy is different from the one cancer eats. Many women get pregnant after cancer. Not sure there are stats on women who get cancer back due to pregnancies. Something to look into I guess.

I totally understand your fear as I am also the same age as you (35 now, and no kids!). I say you talk to a counselor who handles family planning after cancer.

You can do it! Good luck.

Hugs to you.

p.s. you can pm me if you'd like to talk more. Where are you from?