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Just had mastectomy, do I really need to take Tamoxifen from now on?

blueice
Posts: 5
Joined: Sep 2013

 I just had a unilateral mastectomy due to recent diagnosis for breast cancer (DCIS grade 3 with less than 1mm micro-invasion, 5 lymph nodes removed and tested negative, 0/5, BRAC 1 and 2 gene tested negative). The oncologist said I do not need chemo or radiation, but want me to take Tamoxifen for at least 5 years. Now I am very struggling on whether to take it or not. I really need other patients' help on deciding if I should take Tamoxifen or not. The only reason that I don't want to take the Tamoxifen is because I am scared about getting the possibility of having endometrial cancer, sometimes, my endometrial thickness is already a concern by the radiologist, thus I am desperately hoping to seek real-life experiences and advice from anyone here who has already gone through this.  

My questions are:  If you have taken Tamoxifen for years, have you suffered from any significant side effects (particularly uterine or endometrial cancer)?  If you had opted not to take Tamoxifen years ago, do you still think it's a good decision or a decision you regret about now?  Your views and advices are greatly appreciated!

 

 

RozHopkins
Posts: 464
Joined: Dec 2010

The dreaded Tamoxifen.......... Like you double masectomy on Tamoxifen three years because Estrogen Positive and pre menopausal.  My oncologists view was stay on it for ten years.  This is a new view as I think too many people get it back after five years in my opinion (as did my mum) and they appear to be trying to prolong it to that length of time.  BUT my oncologist is very proactive on keeping fit and eventually I could virtually not move and had to stop going to my beloved fun gym classes.  We tried other things and even though I know you must keep on the meds I have just come off everything to see how I feel for six month.  I didn't know if everything happening to me was side effects, normal aging stuff, Menopausal stuff, things that were old problems irritated further by blocking estrogen etc. 

 

Its a tough choice but yes it is the norm to take Tamoxifen after treatment if pre meno and Arimadex post meno if you can.  If you don't wish to take it you may have to battle to get your way, but it is your choice.

 

No I have not as far as I know had recurrence nor the several cancers Tamoxifen can cause but I am having a scan this week to check out ovaries due to a recent problem which could be them, uterus, bowel or just a nasty bug.  That the trouble we never know.

 

other ladies will be sure to be chatting to you. 

Double Whammy's picture
Double Whammy
Posts: 2276
Joined: Jun 2010

I had endometrial cancer - all on my own.  It was diagnosed 4 days before my bc diagnosis.  I was told by gyn oncologist is that it is not unusual for a woman to have both endometrial and breast cancers sometime in her life because the risk factors are the same (i.e., estrogen).  Tamoxifen adds another risk factor (because the uterus sees it as estrogen and goes through changes).  Women on Tamoxifen are monitored closely for endometrial thickening.  And it does happen.  You will need to take gyn follow-up seriously.  Ugh.

Only you and your oncologist can make this decision.  Maybe you could also have a consult with a gyn oncologist, particularly because of your gyn history.  How does this play into taking Tamoxifen?  How do you feel about having a hysterectomy?

I think knowledge is power and so understanding why it is an increased risk rather than simply "it's a risk factor" might be helpful to you in your decision.  Make these folks explain things to you, give you statistics, etc.  Don't do it just because it is recommended and don't not do it because so and so didn't do it and is just fine.  So and so can still get endometrial cancer and Tamoxifen doesn't always work for everyone and is more important in some instances than others.  This is all about you and your cancer and while no one can know anything for sure about your outcome, making decisions knowing all the facts is so much better than not knowing. 

Good luck,

Suzanne

 

 

CypressCynthia's picture
CypressCynthia
Posts: 3955
Joined: Oct 2009

I was Stage 3 when I was diagnosed and had mastectomy, chemo, radiation.  My prognosis was not good in 1987.  The only new treatment was tamoxifen.  Some folks told me that it was not approved for premenopausal women and not to take it.  I looked at my odds and decided to go for it.  I took it for 7 years and nearly 27 years later, I am still fighting but still here.

My main side effects were temporary weight gain (about 10 lbs after 7 years) and decreased sex drive.  I had a couple of endometrial biopsies and ultrasounds along the way (mainly because my gynecologist was nervous and cautious), but they have always been normal.  I stopped tamoxifen in 1994.

Hope this helps!

cinnamonsmile
Posts: 1049
Joined: Dec 2010

breastcancer.org is an excellent website for you.

It has a section totally devoted to ONLY people with DCIS w/MicroInvasion. I highly suggest you post there as well. You will probably get more responses from people who have gone or are going through what you are going through.

There is a resident "expert" named Beesie that is extremely knowledgeable about DCIS AND DCIS W/MicroInvasion (she had DCIS with Microinvasion as well).

I hope to see you both here (wondering how you are doing?) and over at breastcancer.org. I use both websites.

It is best to talk this over with your oncologist and see what they recommend and WHY. Discuss any reservations you may have about Tamoxifen.

I wish you the best with your decision.

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

I don't know if your old enough to take an aromatase inhibitor instead of tamoxifen (Arimidex, Femara and Aromasin).  

I started on Tamoxifen in 1995 as it was the only choice I was given.  Aromatase Inhibitors didn't come out until 1998 and Faslodex was around 2001, maybe.  I had a ct scan six months later for another reason but they did find that I had a thickening in the uterus.  In 1999, a tumor was found and I went on Arimidex, six week later, I began to bleed.  I had been in chemical menopause since the end of 1994 when I was doing chemo.  I went over 2 years bleeding and finally a D&C took care of the bleeding in the uterus.  It was do to polyps but the cells were changing.

It doesn't hurt to try Tamoxifen, just be aware that you should be followed by your gyn doc.

Best,

Doris

PS  You want to give yourself the best option of not having the cancer return, that is why you probably should consider a hormonal therapy.

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