Tamoxifen induced womb cancer

Hi

I am so sorry you are now having to deal with the possibility of a second cancer. You're the second woman this week to arrive here in the womb cancer community like this. 

Womb cancer cannot be diagnosed from a scan. They tend to use an ultrasound to look for a suspiciously thick womb lining and go from there. A biopsy is needed to look at the cells; they may be pre-cancerous or cancer or just normal as the thickening is something that can happen with age. It's really impossible to say from this perspective. The risk from tamoxifen is known but is small; abnormal bleeding post hysterectomy is common and well over 90% of the time is not womb cancer. So I hope what will happen is you will have a chat with the gynaecologist who will recommend a hysteroscopy and biopsy (opt for as much pain relief as he or she offers) and you'll go from there. It can take two weeks to get biopsy results back. 

I have to say, the BC nurses seem a lot better than the gyna cancer nurses. I have never even met mine. 

Do let us know how you get on; if the worst happens then there is a whole bunch of lovely people here who will answer all your questions, no matter how small. If not, then we will do the traditional womb cancer warrior victory dance in your honour :-)

Love and hugs xxx

Hi Lee,I'm in the same boat as you (although hopefully you will find that your womb thickening is not cancer).Had breast cancer diagnosis May 2015,surgery ,rads ,Tamoxifen .Bleed after 18 months of no periods .They have me a hysteroscopy and took womb biopsy ,wasn't pleasant but if you've had a core biopsy for BC it's not as bad as that!!I too am an "expert " in breast cancer and finding starting again getting my head around a new cancer is really hard.Hope you get good news from both biopsies.

I've also been told to stop the Tamoxifen and am now under 2 cancer specialists at same hospital ,heads spinning !!

Thanks Daloni, that's more info than I've received from the hospital, BC nurse or my GP.  I was supposed to have a hysteroscopy for occasional bleeding last year but chickened out so they gave me a scan which, at that stage, showed no abnormality.  I'm going to have to ask for a general anaesthetic and hope they can fit me in soon.  

I'm not sure why I'm so phobic about gynae treatments, maybe because I had a mirena coil put in many years ago and it was the most painful thing ever.    I should console myself with the fact that at least they don't take pictures (they take them of your boobs before the op which is definitely not the sort of photo shoot  you want).  

Looking forward to the victory dance!  

Lee x

Hi 64scouse (I'm also from the 'pool but have moved south) 

Sorry to hear you're going through this too.  When I was prescribed tamoxifen the oncologist was so flippant when he told me a side effect of tamoxifen was womb cancer I didn't even ask for stats.   If I'm lucky enough to find this is just a scare then I'll really need to be persuaded to go back on it.  I'm hoping the joint pains will ease now I've stopped - surely there has to be some benefit!

Will you have a hysterectomy now?  And will that be all that's needed or does it all depend on the pathology post op like with BC. 

Good luck and I hope life starts to get fairer for you soon 

Lee x

Hi Lee ,fellow scouser !!Im from Allerton but live in Lancashire now,my Dad still lives in the Pool.Yes its very much like BC diagnosis ,they will piece it all together after various tests and decide on treatment depend on variety of factors ,if you are lucky it will "just "be hysterectomy .Keeping everything crossed for you.Xxxx

I also had breast cancer before my uterine cancer. That was in 2007 with a recurrence in 2012, then uterine in 2015. But I did not have tamoxifen as I was ER andPR negative. I asked whether it was possible that they were linked, but was told ´possible but not probable ´ 

I wonder if the possibility of a genetic cause has been discussed? I have no children so no-one is interested in invesigating this any further. I do wonder though!

Hi Jo Jo ,blooming heck you seem to had even worse luck than me.You must be able to find your way to Ocology in your sleep.The nurse told me this type of Uterine cancer unlikely Tamoxifen related .My brother who has worked in cancer research for years ,thinks def chance of genetic link .Maybe you should kick up a fuss about testing  .I am certainly going to ask .Can I ask you how you have coped with dealing with this 3 times ,I am hoping prior knowledge from what I've learnt from 2 years of breast cancer treatment will help ,but right now feel just as terrified as first time round.

Hi 

Gosh this raises so many questions. If anyone wants to check out the facts on this then do call the Macmillan nurses on the helpline and they will be able to help. 

These are some facts as I understand them. 

1. Tamoxifen can double the risk of womb cancer - but only from less than 1/1000 women to less than 2/1000 women. So it's a small risk. 

2. The benefits of tamoxifen outweigh the womb cancer risk by many orders. 

3. There are two types of womb cancer. Type 1 is oestrogen dependent- endometrioid adenocarcinoma. Tamoxifen increases the risk of developing this type. 

4. Type 2 womb cancers (which make up 10% of the ~10,000 cases of womb cancer a year) include uterine serous carcinoma and - I'm not 100% on this but as far as I can see - this is not associated with taking tamoxifen. 

5. Womb cancer is linked with a genetic fault called Lynch Syndrome. It's worth thinking about this if there is a patttern of womb and colon cancer in your family. 

6. Uterine serous carcinoma is much more like an ovarian cancer in its behaviour and at a molecular level. I had USC and tested positive for BRCA1 which is linked to high risk of ovarian and breast cancer. The report from the pathologists said the BRCA mutation was the probable cause of the cancer. It's controversial and not everyone is on board with the idea there may be a link between USC and BRCA. 

7. I don't know if there is any genetic fault that links type 1 womb cancer and breast cancer. 

8. Whether you have children or not, knowing if you have a genetic fault such as Lynch or BRCA can change things. For a start, you can be monitored more closely to catch any cancer early or consider preventive surgery. It can also change your treatment options in recurrence. Second, your family members can get tested too. 

I hope this is helpful and not just confusing. I am not a doctor so do check with someone qualified if you want to understand what this means for you. 

Xxx

Hi Jojo11,

It shouldn't matter if you have children or not you could have brothers or sister who do have children who could be at risk. I was originally asked if I had tamoxifen  when I was diagnosed as I did not fit the criteria for womb cancer, I did not have tamoxifen and I was a high grade. Anyway despite me telling them about mom and her mom and brothers it seemed to fall on deaf ears. it was not until after radiotherapy some months later and I had a different person sitting in front of me I was discussing the side effects and I said again about all the history of the big c in m family that she said that's a lot of cancers surprised no one had picked up on it before. I said well I think some times I don't think people listen cheeky I know but it was then I was referred for genetic testing and I had my answer I had a faulty mismatch repair gene MSH6 associated with Lynch Syndrome.  Some genes in lynch can be associated with a higher level of breast cancer and womb cancers can be either endometriod or non endometriod. On my  path report although my tumour is enndometriod it shares feature of type one and type 2 in the make up. I do hope you can get tested. I hope you get answer and wish you well.