tamoxifin and endometrial cancer

Rennasus

Koshka, good for you for speaking up! Please let us know how it goes! 

I too discussed TVU with two of my docs, both said no, they go by symptoms. So if i start having odd bleeding, let them know.

Personally, I want a baseline measurement of my lining, so will be more forceful about requesting in when I see him next. 

Thanks for putting the fire under my butt, ladies!  ;-)

Sherbear

I guess I kinda lucked out with my fertility doc, she wants to monitor me every 6 months with TVU and if polyps do occur, she said they can take care of them at their office as they obviously have the facilities.  I feel very fortunate to have this (although I guess we are paying for it anyway lol) so that I don't have to fight with my onc's on this issue.

Juli50

Good news today... uterine biopsy came back negative. yay!

Juli

myra

Hello Ladies --

After a long time away, I'm returning to BC.org boards for information and support from my BC sisters!  I completed 5 years of Tamox a year ago, and had 2 endometrial biopsies while ON Tamox due to endometrial thickening, which turned out fine.  But NOW I'm postmenopausal (have not had a period for 2 years), and I've been bleeding steadily since Monday!  So, I had (my third) endometrial biopsy yesterday, and now the waiting and worrying begins again....

II appreciate all the input and information on this board, and understand that the general risk of endometrial cancer in patients treated with Tamox is not relatively that high (2 in 1000, compared with 1/1000 for others).  But, can anyone tell me what the odds are that a woman who has taken Tamoxifen, with significant postmenopausal bleeding, has an endometrial carcinoma?

 I'm normally pretty good at researching this stuff, but I'm pretty tightly wrapped in my "pity party dress" right now, so appreciate any help!

Myra

Juli50

Welcome back, Myra. I don't have an answer for you, but hopefully someone will.

Since my biopsy was negative, my onc is putting me back on Tamox. So I had a 1 month vacation.

Juli

myra

Thanks Juli --

Overall, I had a good experience with Tamoxifen... and I trust that you will too.

 I've concluded that all of this (treatment decisions) is like a big crap shoot -- you learn as much as you can about your odds (risks vs. benefits), and then you make the best decisions you can with the information available at the time.  Sometimes we win... and sometimes...

I'm just hoping that my luck holds out this time, and that my biopsy will be negative too!

Myra

Aggiecat52

Hi everyone. Have not posted for awhile. When I had my uterine biopsy done, it was inconclusive so I need to have an OR procedure on July 18th. The GYN thinks it's better to be aggressive and go in and take a look - could be OK but let's catch it early if there is cancer. I have never had any problems with post menopausal bleeding but there is thickening of the lining. There is likely a polyp and it needs to be biopsied.



Myra, hope your biopsy turns out OK. My Mom had bleeding out of the blue and we all feared cancer. It turned out to be benign polyps! That was a relief because she is quite elderly. My experience with Tamoxifen was generally good, some vaginal discharge but not too concerning. I'm switching over soon to an AI - Aromasin. Once my Tamoxifen runs out in the next week or so I'll make the switch.



Aggie

faithfulheart

I am so very happy your cancer was caught early and that you are ok. Thank God!!!!

Are they 100% sure it was do to the tamoxifen, maybe that is a dumb question, I don;t know. I definetly think we need to stay on top of our paps. Every six months really. I just also feel like

tamox saves so many live's too. I am on it now,  plus my ovarie's were taken out at 41, a year ago.

My onc. thinking behind the tamox is , if I take it for 5 years, I can switch to femara or arimidex for another 5, So thats 10 years on hormonal blockers. I think by my signitue you can see the risks of mets out ways my risk of getting cancer from tamox. It's strange I have this amazing team of Dr.'s here in Calif. they all reasure me that the risk is so low of getting cancer from taking tamox..

I guess I better start thinking about a full hystorectomy.

I do thank God everyday though that we can take a pill that could prevent our bc from going to other organs. I am so sorry this happen to you it sounds like you have an amazing prognosis!!

I think it does scare a lot of us to here this, especially when the stats say otherwise.

God Bless you

Faithful

myra

Thanks Aggie... benign polyps is another possibility, and I didn't realize they could cause bleeding!  I still haven't got the results of my biopsy, but will post when I do.  Myra

myra

Just wanted to let you all know that my Endometrial Biopsy came back NORMAL! woo-hoo!  "Seems that I actually had a period after 2 years without one, but still don't know why... Whatever it is, it can't be as scary as hearing "the C word" again!  Myra

Juli50

Yay, Myra! Great news!!!

Aggiecat52

Hi Myra. So glad to hear that your biopsy was benign! In preparation for my OR procedure I had an ECG yesterday. Just three weeks away now.



Aggiecat

Aggiecat52

Hi to all. Just had this call from my GP saying that my ECG shows an irregularity. Don't want to say it but this is getting so tiresome. Can't any of my tests just be normal?? I broke down and cried - poor me! I need to go back to my GP tomorrow. Wish me luck. Sorry for being such a wimp!



Aggiecat

moonchild64

Hi everyone,

I am one week post-op from my DaVinci hysterectomy (uterus and ovaries) and everything went perfectly.  The pathology came back 100% clean - no cancer - and I am feeling so good.  Having the hysterectomy was definitely the best decision for me.  I have no worry for endometrial, uterine or ovarian cancer and no more Tamoxifen.  My uterus was 2 1/2 times size normal due to fibroids and cysts and I already feel better physically.  I realize it is major surgery and not for everyone, but I simply could not continue living a life of discomfort/pain, ultrasounds and biopsies and ... the waiting and worrying.

After my breast cancer diagnosis which caught me totally off guard and threw my world in a tailspin for 3 years, I feel empowered that I was able to be proactive and take control.  I am going to research menopause management and am going to discuss with my oncologist the 'natural' route for estrogen reduction. 

Hugs to all of you and best wishes for understanding at each and every turn of this journey.

TonLee

Glad it went well Moonchild!

Will you be on an AI now?

moonchild64

Thanks TonLee

My onc wants me to start on an AI. Feel I am heading into another jungle of SEs based on posts to this board.

Are there alternatives?   I will be exploring...

TonLee

I don't know if there are alternatives.  There's a good chance you won't get any SE.  I say that because most of the women in one of the BC groups I socialize with are on AIs and they have without exception said it is easier than Tamox.

And they really didn't think Tamox had too many SE (their experience).

Keep us posted!!

soulswithin

thnx everyone for the post. I've been on Tamox for only 4 months and already stopped. Lots of ovary pain and swelling. I also am worried about the cancer. I don't remember quite what the onco said about why, but apparently we conquor one estrogen problem but produce another hormonal change with Tamox. This all worries me, also having melanoma twice in the past. Between the radiation, the chemo and now the Tamox, all causing risks, I think my body is really telling me it can't handle all those quiet side effects the docs keep telling us are not there. Tough decisions to make. Best wishes to you all.

Had all similar problems, weight gain no matter what I ate, aged bones and joints beyond years, eyesight blurred, lower ovary area pain and swelling, discharge, arthritic-like pain all over and fatigue+depression. First check ups pending this month. My doctor does not know I have stopped the Tamox. 62 going on 80. I think if I was younger I may have tolerated the Tam a little better.

Anybody feel that they are ruining the last few good years of their life before old age? thnx

DenimBlue

Wow, reading these posts has convinced me I made the right decision.  At the time I was diagnosed with DCIS, I was already scheduled for exploratory surgery to look for endometriosis.  It would have been the fourth in a long line of surgeries I've had to have "down there" for various issues. When told about the likelihood that I would be taking Tamoxifen for 5 years, I read about the risk of uterine/endometrial cancer and asked my OB/GYN to do a hysterectomy, which she agreed to do. (She and the breast surgeon actually worked together and did the lumpectomy and the hysterectomy on the same day. They and the hospital were awesome about it.)  I did turn out to have endemetriosis and she was able to get most of it lasered off.  I still have one ovary so do not have to go through menopause yet.  Looking at these stories I am very thankful and sure we did the right thing.

TonLee

I keep reading about the "risk of uterine cancer" on Tamox....am I missing something?  I read the study and

Women on placebo had 1 case of Uterine cancer in 1000, and the women on Tamox had 2 in 1000.

I don't consider that a significant risk.

So am I missing a report/study/sompin?

Dianeinil

Yo I never expected such negative comments on my original post . I was only trying to help women understand the reality of tamoxifin and endometreial cancer. These "studies" can be whatever they want them to be. You need to be aware of signs and make sure your doctors do the tests needed to be sure it isn't lurking as mine was with no sign . Wise up that 1 in 1000 could be you and I am just trying to help. I was that 1 in 1000 and had NO sign !

Dianeinil

I'd love to know that also if there is a more natural AI... I was put on Arimidex after the tamoxifin induced cancer then  had such SE's I am on "vacation" from it now

cp418

Dianeinil --- thanks very much for your original post!  I remember back when I was dx at age 49 premenopause and being very fearful of taking Tamoxifin. Strong ER, PR 100% and still had 2 periods while on chemo.  No one would measure any hormone levels and just wanted to give me Lupron shots and take Tamox post chemo and radiation treatments.  I tried Tamox 4 months and had lots of SEs with insomnia, depression, extreme mood swings and large abdominal bloating. My Mom had uterine fibroids removed and father had multiple strokes.  So I requested an ooph to switch to an AI.  During the ooph procedure they found a uterine fibroid so I believe it would only have been a matter of time before more problems occurred requiring more surgeries.  Some patients do very well however some do not and we must be diligent.

Polyana

Hi i am on tamoxifine 3 month only i want to ask about white vaginal discharge could that be normal i am only 36 and almost a year i lost my period are those discharges normal i got worried when i read u can have cancer without symptoms. My follow up is end of july i am following wiz my doc who is great he told me that by now if there were issues it wod developed symptoms by now so what do the experts say here

Polyana

By the way any one experienced period missing and vaginal discharge due to tamox

Carola32

TonLee,

There is an increased risk of endometrial cancer if a woman takes Tamoxifen or Toremifene. These two anti-estrogens block estrogen in breasts, but stay the same or slightly increased the levels in ovaries; that is what makes the endometre thicken and can lead to another cancer. Ok, so 2 in a thousand women got cancer in the study group, but hey - I got breastcancer at 29 which for every doctor is SO strange, NOT normal (as if getting cancer was NORMAL!!) , that only happens RARELY...Yeah right, I've been looking aorund and it is not as strange as it sounds, considering how many of us there are under 35 getting dx'd with BC.

Anyway, personally I say no thanks to Tamoxifen or any other anti-estrogen for that matter. To play around with hormones and putting up with SE's (even if it would turn out to be 'only mild hotflashes and night sweats' they still disrupt my sleep and put me in a very bad mood for a good part of the day). I would be more anxious about eventual problems due to Tamixofen if I took it, than my BC returning. In my honest opinion, our bodies can't be healthy when taking Tamoxifen. The SE's are there for a reason.. I prefer to build on a healthy body and take my chances. 

This link about Tami and endometrial cancer is in French, but I'll post it anyway :-)

http://pro.gyneweb.fr/portail/sources/congres/jta/98/endomet anti-og/echo.htm

TonLee

Carola,

I am not implying 2 out of 1000 is an acceptable risk to every woman who chooses or refuses Tamox.  I thought perhaps there was newer info out that I missed.

Personally I will risk Tamoxifen because my cancer was so highly ER+ and my hormones have never in my entire life been "right."  But I understand it is an unacceptable risk to some.

lalisa

On tamox almost 4 years now, and the whole time I have had thickened endometrium. 3 hysteroscopies, the first 2 normal but the last one showed hyperplasia and tons of tissue, like 36mm or something!!

Gyn and onc (and me) feel it is time for a hysterectomy. Does anyone know if it is important to remove the cervix as well? Gyn feels there could be endometrial cells there and wants to remove it.

lalisa

P.S. I am still happy with my decision to take tamoxifen. I believe the benefits far outweigh the risks. I just happen to be one of the unlucky ones (but not even that unlucky- they caught it at hyperplasia before it got really scary)

knowledgeforpower

Two weeks ago I had a CT scan of my abdomen because I was having a lot of pain from a C Diff infection.  The scan showed I had fluid in my uterus.  I am on Tamoxifen so the radiologist recommended  transvaginal ultrasound.  I had the ultrasound yesterday and had mild cramping during the exam.  The technician said everything looked normal.  Tonight I am having vaginal bleeding with blood and mucus and some mild cramping.   Is bleeding normal after the ultrasound.  I am 60 so I know it's not my period.