Tamoxifen and pelvic checks

Hi. I have been on Tamoxifen for 5 years with looking at a possible 5 more. I took myself off to get a pelvic scan ultrasound and what a good idea. Even for piece of mind. I ended up having a Hysteroscopy where they put a camera in your uterus. Lining was fine, took a polyp and that was ok too. Now I have cysts on my ovaries, bugger. They say they are simple cysts, fluid filled. Not sure what the next step will be. I think if you have been on the drug for a long time or are experiencing symptoms then you should check. After breast cancer I don't want to have to deal with more. Just like to sort these cysts out. K

Hi. I have been on Tamoxifen for 5 years with looking at a possible 5 more. I took myself off to get a pelvic scan ultrasound and what a good idea. Even for piece of mind. I ended up having a Hysteroscopy where they put a camera in your uterus. Lining was fine, took a polyp and that was ok too. Now I have cysts on my ovaries, bugger. They say they are simple cysts, fluid filled. Not sure what the next step will be. I think if you have been on the drug for a long time or are experiencing symptoms then you should check. After breast cancer I don't want to have to deal with more. Just like to sort these cysts out. K

I hope you are well darl!  Long time no see/talk!  My fault - I haven't been on the network for some time.I share your concerns with Tamoxifin....and I'm not happy with it at all.  My hot flushes are appalling and wrecking my life and I have stopped taking it.I'm going to my Oncologist soon to discuss an alternative.With regards to the concerns over having a scan I think you are very smart thinking about this.  I definitely think you should proceed if you're concerned. I am all for 'power to the patient' (as you may know) and you are ENTITLED to ask for a referral if you are genuinely concerned.I would ring up the Oncologist and DEMAND the referral.  Tell him/her (can't remember who you're seeing) that you can't sleep because it's worrying you that much and the cost is irrelevant - you'd rather have it done than worry about it 24/7.  No good, ethical Onc or Dr should refuse you on that basis.Another alternative (although I don't like to condone this*) is to go to another Dr (perhaps a bulk bill place) and explain the situation to them and ask for a referral.   (*Some Drs look on this as 'Dr shopping' - hence my comment.)They can only say 'no'.... I do hope you can get a referral as I believe it's important for YOUR piece of mind.BTW - aside from all this - how are you??  Haven't seen you on EE Group for a while so I'm not sure you if you're aware that I'm organising a get together for all of us at MY PLACE for lunch.Looking at a FRIDAY towards the end of May / early June....it's going to be fun lunch with lots of chatting and getting to know some new members.It's been suggested by one of the members that people bring a plate, although I was happy to provide all...but I decided to take them up on that kind offer as I'm trying to accept help these days...Can you please email me at geminishopgirl@yahoo.com.au to let me know if you'd like to come.cheers and luv H

It sounds like you might be in perimenopause.It's the stage when your periods start to "muck"up.You might go for months on end before you get one and it might be quite heavy.Then they might be regular again for awhile. You are in menopause when you haven't had a period for 12 months.Some doctors might say 2 years.You've only started Tamoxifen recently Janet so I doubt there is any cause for concern at this stage.Talk it over with your GP and work out a plan.Your GP might be happy to refer you for regular pelvic ultrasounds. And anything that doesn't seem like a normal period to you,get it checked.Also have your pap test done. Best wishes and try not to stress-that's not good for you either.

                                                                                Tonya xx

Don't really know where I stand in regard to menopause. I was having normal periods when diagnosed last year at 46. I had one really heavy one during chemo last July. Then they stopped for a while. Had another normal one before Christmas but no more since I've started taking tamoxifen in mid-Jan. I think the tamoxifen is inhibiting my periods becasue I still sometimes get cramps like I'm going to get one but no bleeding. But oncologist says I could still get one. So am I in menopause or not (am now 47)? And if I do have any bleeding is it a sign of something sinister or just a my periods coming back? Sorry Tonya, I know you can't answer my questions, just venting my frustration. I really wish there was some sort of screening. All this makes me very uneasy. Janet.

I guess I should add that I'm coming from a post menopause situation where any pelvic bleed is investigated.So if you are still having a period on Tamoxifen then that's even more of a worry cos monthly bleeding is normal. Perhaps if it was heavy bleeding or eractic bleeding they might do an ultrasound? Still a worry either way.

                                                  Tonya xx

I think I read that up to 8mm of endometrial thickening was ok but over that and they start to worry -especially if there are polyps as well.They do a D&C (scraping of the lining) to send to pathology to check for cancer. The thing is,you wouldn't know if your endometrium was thickening unless you had a pelvic ultrasound.And the only reason for ordering that was if you had discharge or bleeding.A  D&C requires a general anaesthetic and is NO picnic! I know ladies who have had a few and then get told to just keep taking Tamoxifen until the next bleed. I think it's a real concern and there should be some sort of screening just like we have a pap test every 2 years as a precaution.

                                    Tonya xx

Thanks for your reply Tonya. It's so annoying that a drug that stops breast cancer means we have to worry about another cancer. I know it's rare but still... I think I will be questioning my oncologist more about this issue next time I see her and if she still totally dismisses the idea of any kind of check I will ask my gp about it. I don't want any unnecessary treatment either and I think my onc said if thickening was found, and it likely would be, a D&C would be recommended.  I think that is scraping out the uterus usually associated with abortions.But I'm just wondering whether having that done would reduce the risk of uterine or edometrial cancer. Maybe I'll do some more googling too. Anyway thanks for sharing your experience, I hope you are okay. Janet :)

Hi Jandy,

I was only thinking of this yesterday.

This is exactly what my oncologist said too! (RPAH Sydney)I have been on Tamoxifen since January 2012 and am worried about the possibility of uterine/ovarian cancer which they say is increased by the taking of this drug. Some people on this site seem to get checks but others not-is someone wrong??

Julia