Tamoxifen

survivor81
survivor81 Member Posts: 2

I was diagnosed at age 31 of breast cancer, I had to freeze my eggs before I started treatment.  I had ftreacherous treatments & 33 radiation treatments. now my oncologist wants me to be on tamoxifen for five years.  I have a strong family history of breast cancer & my sister had stage 1a ovarian cancer.  My genetic test came back negative for the mutation.  I've been reading a lot about tamoxifen and the more I read the more I do not want to take this drug.  I want kids in the near future, I'm 32 now so my clock is ticking. Any thoughts on tamoxifen and side effects you had to deal with!??? Please help!

sincerely, survivor 81.

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Comments

  • survivor81
    survivor81 Member Posts: 2
    Suppose to say I had four

    Suppose to say I had four chemo treatments

  • lintx
    lintx Member Posts: 697

    Suppose to say I had four

    Suppose to say I had four chemo treatments

    Hi

     

    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 

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    I had few side effects on

    I had few side effects on tamoxifen.  I took it at age 33 for 7 years (Stage 3 IDC).  I am now 60 years and had a recurrence in 2005 and another this past year.  Still fighting, but, I strongly believe, if it weren't for tamoxifen, I would not be here.

    I wish I had taken it 10 years, but no one knew how long to take it back then (1987-1994).

    Good luck! 

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    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

  • Kristin N
    Kristin N Member Posts: 1,968 Member

    I had few side effects on

    I had few side effects on tamoxifen.  I took it at age 33 for 7 years (Stage 3 IDC).  I am now 60 years and had a recurrence in 2005 and another this past year.  Still fighting, but, I strongly believe, if it weren't for tamoxifen, I would not be here.

    I wish I had taken it 10 years, but no one knew how long to take it back then (1987-1994).

    Good luck! 

    If you decide to take it,

    If you decide to take it, good luck to you.  I chose not to.

     

  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member

    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 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

  • peanutcat
    peanutcat Member Posts: 104
    Tamoxifen

    survivor81,

    I have had side effects BUT most people I've heard from and read they haven't. Don't take mine to heart, I'm 59. I had leg cramps, hot flashes and a discharge. I don't know why I'm so lucky LOL to have these when only a thimbleful of others did too. I had a double Masectomy and I don't have the Bracha Gene. I do still plan on staying on it for 10 years because of family history Now I'm a 2 yr survivor.

     

    Take care,

    peanutcat

  • Candi Cane
    Candi Cane Member Posts: 159

    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

    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.

  • aj59w
    aj59w Member Posts: 1

    Suppose to say I had four

    Suppose to say I had four chemo treatments

    Tamoxifen

    I am 33 years old and have been taking tamoxifen since Dec 2010. The side effects I have  are.... occasional hotflash, irregular menstral period, vaginal dryness and pain, no sex drive (biggest complaint) and fatigue. Not sure if that is helpful to you or not.....goodluck!!

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    Hi

    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
    Cancer2013 Member Posts: 1

    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

    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.

  • June Bugs
    June Bugs Member Posts: 167

    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

    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?

  • SIROD
    SIROD Member Posts: 2,194 Member
    Hard Decision!

    I used Tamoxifen for 4 years before a tumor was found in the axilla.  There are pros and cons to this drug as with every drug.

    What you don't want is a recurrence that will take you from stages 0, 1, 2, 3 to stage 4.  Then you have no choice, treatable but not curable is not a fun place to be.

    I had a friend who was early stage and then had a child.  She was ER+ and the cancer return in her bones.

    Certainly she loves her child and wouldn't trade for anything.  Most of everything she tried, the cancer progressed.   You can figure out where the story will end.

    Think twice about a child, there are lots of children waiting for a good home and think twice about trying Tamoxifen.  Not a perfect drug but it has kept many women in that 70% club of survivors.  You don't want to join the 30% club.

    Tough decision, good luck to you,

    Doris

  • Mariannemm
    Mariannemm Member Posts: 136
    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

  • grannabeth
    grannabeth Member Posts: 95
    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

  • DebbyM
    DebbyM Member Posts: 3,289 Member

    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

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

  • jlharris
    jlharris Member Posts: 47

    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

    Tamoxfen VS Arimadex

    Grannabeth;

    I too will be finished with rads (14 more to go) and I have my appointment with my ONC July 2nd. I have been doing a lot of research on line about the difference between Tamoxifen and Arimadex. So, ask your doctor about that. I have read that Arimadex seems to have less SE than Tamoxifen.

    Good Luck on your decision and let me know what your onc says.

    Jenifer

     

  • Megan M
    Megan M Member Posts: 3,000

    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

    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

  • JJDS
    JJDS Member Posts: 258

    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

    Wishing you good luck!

    Wishing you good luck!

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    DX at 32 here!

    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?