CSN Login
Members Online: 27

Tamoxifen

survivor81
Posts: 2
Joined: May 2013

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.

survivor81
Posts: 2
Joined: May 2013

Suppose to say I had four chemo treatments

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

 

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 

aj59w
Posts: 1
Joined: Jun 2013

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!!

CypressCynthia's picture
CypressCynthia
Posts: 3954
Joined: Oct 2009

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! 

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

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

 

disneyfan2008
Posts: 5337
Joined: Oct 2010

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

Lynn Smith
Posts: 1265
Joined: Mar 2011

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

Candi Cane
Posts: 161
Joined: May 2013

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.

Cancer2013
Posts: 1
Joined: Jun 2013

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
Posts: 169
Joined: May 2013

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?

peanutcat's picture
peanutcat
Posts: 104
Joined: Mar 2011

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

RozHopkins
Posts: 464
Joined: Dec 2010

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.

 

 

 

 

 

 

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

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's picture
Mariannemm
Posts: 136
Joined: Apr 2010

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

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

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

grannabeth
Posts: 91
Joined: Apr 2013

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

jlharris's picture
jlharris
Posts: 48
Joined: Apr 2013

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's picture
Megan M
Posts: 3001
Joined: Dec 2009

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
Posts: 259
Joined: Apr 2013

Wishing you good luck!

survivorbc09
Posts: 4378
Joined: Jun 2009

Beth, did you decide on whether or not you're going to take tamox yet?

Jan

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1654
Joined: Jan 2011

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?

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network