tamoxifin and endometrial cancer

Good luck Patti, I hope your eyes aren't worse

Hi ladies. This Wednesday is my next appointment with the GYN to attempt to biopsy my uterus. I'm now more concerned about getting the darn thing done than what the biopsy results might show! In my last post I was asking if anyone has heard of this drug called Misoprostal which can help the cervix open enough to do the uterine biopsy. Does anyone have any experience with this? I have 2 tablets to insert intra vaginally the night before the procedure (tomorrow night).



I would love to hear from someone else who may have experienced this kind of issue when trying to get a uterine biopsy. I'm not sure what the next steps will be if I can't get the biopsy done on Wednesday. Thanks!

Hi everyone,

I went back in for another ultrasound today after having been off Tamoxifen for barely 4 weeks and guess what...my uterine lining reduced from 1.9cm before to now just over 1cm. Also, not nearly as many cysts are shown. On the one hand this is great news as it is definitely Tamox induced, on the other hand what do I do ?? I need to schedule an appt with my gyne onco to get his opinion, but my regular gyne is suggesting I ask to be put on Evista instead as it doesn't cause same uterine changes, does anyone have any experience with this ?

Aggiecat - I was also given 2 tablets to insert before my biopsy, so it must be the same thing. I think it makes it easier to take the biopsy but it certainly doesn't make it easier to experience one. It definitely hurts, I never experienced labor as I had 2 c-sections so I can't compare but maybe it's similar. The good news is if it works it doesn't take long and the pain does go away quickly once the biopsy is over. You may have some bleeding after, I had a lot of bleeding the first time around very little the second, and almost none the third. Good luck !!

 TonLee/Tammy - I tested for CYP2D6 a couple of years ago and my results were 'extensive metabolizer'. Guess this explains why my uterus reacts so quickly to Tamox. My oncologist explained the reason they don't like to do the test now is that even women who come back as being low metaboliers have proven to benefit from Tamox. My thinking is why don't they just reduce the dose for those of us who are 'extensive'

Would love to hear any opinions if I should try Evista (not as effective as Tamox but close relative, biggest side effect is hot flashes), or stick with Tamox. I'm not too keen on shutting my ovary off at this point and switching to the unknown of an AI.

Thanks!!

Good luck today Aggie...I'm thinking about you.

Britchick,

I wonder why my Ob Onc said if I bleed there is a problem?  Hmmm.  I'm 42 and wasn't even post menopausal before DX.  They've done no hormone testing on me at all.  Guess I'll have to ask

Opal, they can remove it all...if it's gone, no chance of cancer.

That's true Opal...you could do swimmingly on Tamox.  Good luck to you!

Ugh! I m soooooo confused!!!! All of this wonderful information.....To you gals who are concerned about dilation: did you have c-sections? I had four and my OB/GYN managed to open mine enough to get a sample. There is hope!

Although I know I am taking a chance, I plan to remain OFF tamoxifen for the time being. It probably appears that I am being irresponsible, but that period I had knocked me on my bummy - I am still recovering from it.

Hang in there, Opal, good news tonlee and thanks for all your info britchick! Tammy

Hi ladies. I just wanted to let you know that the doctor was able to do the biopsy today. Hooray, never thought I would be cheering about a biopsy! Now the wait to get the results. It was painful but over quickly and definitely worth finding out. Next week I see my GP to get my new prescription for Aromisin (not sure of the spelling) which I'm sure will have lots of fun side affects. Oh well, that's the challenge we all face.



Good luck to all on Tamoxifen. Other than this recent development with uterine lining, I was lucky not to have many side affects on this drug.



Thanks again for all the useful info,



Aggiecat.

TonLee, I'm also confused by your Onc's statements.  Tamoxifen does stop periods in some women, but in others, it doesn't affect them at all.  It's even used in higher doses as a fertility drug.  Since you had chemo, I would suspect that to be more the culprit than the tamoxifen in stopping your periods.

AggieCat, also glad that they were able to get your cervix open with the misoprostol, as the mentioned alternative would have been way too drastic.  I'm a nurse in Labor & Delivery and we use that drug frequently to soften up the cervix and get labor started.

I am amazed about how much I've learned since reading this board! Just reading about other people's experiences is so helpful. As I was in menopause when I was diagnosed, I was told to report any spotting or bleeding when on Tamoxifen. But if you are still getting a period when starting Tamoxifen, does it cause your period to stop? That's confusing given it's impact on the uterus.



When my friend was diagnosed at age 50, she was still getting a period but stopped with the chemo. She was only on Tamoxifen for a year because of weight gain and other side effects. These hormonal treatments seem to affect people so differently, TonLee. Hoping some other ladies will come along with more insights than me about Tamoxifen impact on periods.



Aggiecat

TonLee, maybe it depends on one's age.  I think I read on another thread that women on Tamox were still having their periods, not sure, Tamox brain doesn't retain

Had chemo when I was 53, not yet menopausal (clock regular periods).  Had killer periods during 1st and 2nd chemo then nothing.  Have been on Tamox for one year now and no more periods.  It was the onco's intention to "send" or "throw" me into menopause and I guess my biology is responding. 

But, sometimes, I could swear I'm having 13-year old like cramping and feel like my ovaries are totally whacked out   Had severe PMS all my life which I hope never ever comes back ! 

My gyneco has told me to see him immediately if there is bleeding, as it would not be normal, I presume...?

Rae, also had thickened endometrium 3 months after starting Tamox.  The gyneco told me he is using this as a baseline and that there is no point in doing a TVUS every six months.  Chances of endometrial cancer caused by Tamox are very low and the doctors are not generally worried about a thickened endo.  For my own peace of mind, though, I'm wanting to have a TVUS every six months, i.e. for my ovaries.  Don't know if the gyneco will agree to this.  If not, then I will have to see two gynecos for 6 months follow-ups ....

Thank you so much for starting this post, Dianeinil.  I am in agreement with you about peace of mind.  I have scheduled a consult with a gyn onc that performs the davinci hysterectomies.

I have been on Tamox for 2.5 years and, other than some nausea at the begin of tx and occasional hot flashes, I hadn't noticed any major side effects. I have not had a period (other than a day of spotting every 4-5 months) since chemo in 2008.   Then a couple months ago, I started having lower back and pelvic pain and significant bloating and discomfort, which increased after eating.  Though my periods have basically stopped, my onc. bloodwork shows I am not yet menopausal (I am 46), so I must stay on the Tamoxifen.  However, if I continue on it, these side effects and issues are not going to go away - in fact, I feel they will get worse.

During annual gyn. visit two weeks ago, pelvic exam was very uncomfortable and gyno said I had an enlarged uterus and ordered a TVUS.  Met with her yesterday and the results show fibroids (which explain the enlarged uterus/back pain), cysts, areas in the endo. that are not 'uniform' and thickened  lining (5mm).  The findings on the report stated endometrial hyperlplasia (possibly pre-cancerous) and 'malignancy not entirely excluded based on the imaging appearance.'

Seeing that word sealed the deal for me.

I have made the decision to have the hysterectomy because I would rather be proactive and eliminate any opportunity for cancer to find a home in uterus, ovaries, or endometrium. I just don't want to go through years of biopsies, TVUS, etc. and, most of all, discomfort and pain. From what I have read, since I already had breast cancer, my chances for another cancer are increased as I get older.

I spoke with my onc yesterday and she is in full agreement that this would be a good age/health condition (early onset of issues) to have the procedure.  Following the hysterectomy and into menopause, she will switch my medication to Arimidex. 

This board has been such a blessing since my bc dx.  Thank you all for sharing your stories.  Doctors, tests and exams are one side of the story - it's the personal experiences that have helped me get through with guidance, knowledge and support. 

britchick, Thanks so much for joining this thread! I am learning a whole lot from you. Love how you always stress that the chances of developing endometrial cancer while on Tamoxifen is low. It is a great P.S.

So happy to be off Tamoxifen. I don't know why - guess I just feel like the rest of you - BC is bad enough, but having a "cancer" scare every six months is ridiculous!!! How do you begin to adjust when every part of what makes you a woman is in rebellion! Must be nice to be a male! 

Tammy

crselby - Celebrating with you!