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Ovarian cysts & tamoxifen

30 REPLIES 30
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Re: Ovarian cysts & tamoxifen

Hi Helena, I hope you are doing well and that you still managed to have your operation despite the cold You developed. Best wishes for a speedy recovery, let me know how you get on. Nicola x

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Re: Ovarian cysts & tamoxifen

Nicola

 

I promise I will do.  I will be in hospital for 2/3 days apparently and then I am off work for 6-8 weeks.  Hoping it is 6 rather than 8 though Smiley Happy Smiley Happy

 

Helena xx

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Re: Ovarian cysts & tamoxifen

Yes please let me know how you get on, all the best for 18th and hope all goes well. Nicola x

Community Champion

Re: Ovarian cysts & tamoxifen

Kiki

 

Lovely to hear from you and that you have a plan in place to srot this all out.

 

My tumour markers came back as normal but following a failed hysteroscopy I had to have an MRI which showed that the lining of my womb was very thick therefore I am having a hysterectomy on 18 September, they have advised me the best option is to have it all taken away.  Feeling a bit apprehensive about it all, but I know it is the best option, and as my consultant said to me the silver lining on the cloud is that I will be able to stay on Tamoxifen.

 

Will keep you updated with my progress if you would like.

 

 

Helena

Member

Re: Ovarian cysts & tamoxifen

Hi All, just thought I would update since last post. My tumour marker blood tests were all normal, but my scan in July showed more polyps , the original fibroids which I have had for a long time and the ovarian cyst still there, plus no sign of menopause yet at 54! I finally had my appointment with the consultant on Wed, she said she wanted to discuss management options and she wanted me to have a Mirena Coil, but I don’t want to risk this because of BC. Having had a lot of time to think about this I was keen for her to do a hysterectomy as I know it’s a big op but feel it will remove a lot of risk factors as well as sorting my heavy periods problem. She has agreed to this and I have a provisional date for January. Xx

Member

Re: Ovarian cysts & tamoxifen

Hi Kiki
I'm sure your team would be in touch with you asap if your bloods were raised. I had my repeat scan yesterday and I now have 2 cysts one in each ovary 🙁 The radiologist said she wasn't worried by the size or shape of them and now like you I'm waiting to see what the consultant says my appointment is on August. If you do feel anxious I'm sure a quick call to your Dr to see if they have your blood results might help.
Much love Clair xxx
Member

Re: Ovarian cysts & tamoxifen

Following on from my last post, I had a repeat ultrasound done last week and apparently the ovarian cyst is still there but hasn’t grown. Have had tumour marker blood tests done again but don’t know my results yet. Not sure whether to chase those results as have to wait till 5th Sept to see consultant again unless I can get a cancellation so if the blood tests are raised I shall only worry myself silly until I know what they are going to do! If only I could get away from all this uncertainty! Nic xx

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Re: Ovarian cysts & tamoxifen

Sorry I didn’t reply before. The tumour markers were c125 and another one, the c125 (which I think shows ovarian) was clear but the other was slightly raised. I was whittling about it so my gp ordered a retest and it had dropped back to normal range. Apparently now my consultant has ordered another scan for July and wants me to do bloods again at same time. Trying not to worry about it since everything else was clear! 

Nic x

Member

Re: Ovarian cysts & tamoxifen

Hi Nic,

thanks for your reply. The tumour marker test you had which ones was it for. No one has suggested this to me but from what I've read I may have had CA125 done way back at the initial bc diagnosis but was not reported to me. Have not had bloods taken since so not sure if I should be asking for this test from GP perhaps.

you said one was raised did you have taken again to see if falling? Hope it was good news.

hope you get your scan appointment soon

jac 

 

Member

Re: Ovarian cysts & tamoxifen

I haven’t really had any symptoms with the cyst but the consultant said they would do another scan after 4 months (which should be about now!) to see if it had changed. They also did tumour marker tests (see previous post). I’m waiting for a scan apt at the moment. They told me it was a haemorrhagic cyst (filled with blood I think) which is apparently quite common and that often they break down on their own so I’m trying not to worry too much! Good luck with yours! Nic x

Member

Re: Ovarian cysts & tamoxifen

Hello, I've just read this thread with interest. Please can you tell me what symptoms you experience with the cysts? I have been on Tamoxifen for 4 months and just found out that the CT scan I had back in December showed an ovarian cyst, 2 cm. so pre Tamoxifen treatment.  My oncologist said to take a wait and see approach. I have had pain in my left side mid cycle and heavier periods so was wondering at what point I maybe need to go back to someone and get it checked or as pain is manageable just get on with it!

thank you for any advice

jac x

Community Champion

Re: Ovarian cysts & tamoxifen

The nurse also said that they would tell me at the appointment what they saw when they did the hysteroscopy xx

Community Champion

Re: Ovarian cysts & tamoxifen

Kiki

 

I have only been on it 18 months, I had a show, which 7 years after i last had a period was rather worrying so went straight to GP,, she put me on fast track, not because she thought it was anything sinister, she just wanted me seen asap. 

 

Helena xxx

Member

Re: Ovarian cysts & tamoxifen

Hope all goes well for you. At one point I was wondering whether to ask to stay on tamoxifen after my 5 years are up but with all these problems I’ve decided that’s not a good idea! This is the second time I’ve had to have polyps removed since starting taking it! Thankfully the nurse who did the hysteroscopy told me she was fairly certain everything looked ok so I wasn’t quite so anxious waiting for the results this time! Xx

Community Champion

Re: Ovarian cysts & tamoxifen

Kiki

 

Oh that is really reassuring as I am having the same thing done on Wednesday, fingers crossed I get the same outcome.

 

Also have a cyst on my ovary and have to have a blood test.  The nurse said that they are just being thorough, rather scary time xxx

Member

Re: Ovarian cysts & tamoxifen

That's really good news xxx
Member

Re: Ovarian cysts & tamoxifen

I had good news yesterday following my hysteroscopy. They removed 2 polyps 1 was 1.5cm the other 2.5cm but the results came back normal. So now I just have to wait for a repeat scan to see what is happening with the ovarian cyst. 

Member

Re: Ovarian cysts & tamoxifen

I haven’t got a date yet - approx 3 months was suggested but obviously and rightfully depends on number of women that have life saving surgery requirements x
Member

Re: Ovarian cysts & tamoxifen

Hi Badgers,
That is good news that your tumour markers were low & probably a good thing that you are having your ovaries removed. One less thing to worry about! I am due to have another scan mid May. When I had my annual oncologist appointment, he organised a blood test to check my oestrogen levels, which came back high! Apparently my ovaries are compensating for the lack of oestrogen caused by the tamoxifen, hence the cysts! I was advised that it would settle down but it does worry me regarding the effectiveness of the tamoxifen & the excess oestrogen potentially causing other problems! It seems never ending. When is your op? S xx
Member

Re: Ovarian cysts & tamoxifen

Hi Sonia, how are doing on your journey ? My cyst is apparently  the size of a small potatoe, and whilst cancer markers in blood test are 'low', I've been offered an oophorectomy, as I have increased risk of ovarian and breast cancer due to family history. Got the breast cancer badge and not keen on getting the ovarian badge, so have opted for the op. 

 

Member

Re: Ovarian cysts & tamoxifen

My tumour marker tests came back one normal and the other slightly raised which is very worrying! Discussed with gp and they said I could have it redone as it’s been a month to see which way it has gone and whether I need to worry! Still got to wait another month for the hysteroscopy so more waiting and worrying! Xx

Member

Re: Ovarian cysts & tamoxifen

Hello everyone
I had my 2nd scan today and the cyst has changed to half fluid half solid ? Whatever that means but radiographer doesn't think it's to much to worry about and definitely thinks the tamoxifen was making things worse for me so said for me stopping was the right thing, she's sending report to gyne consultant and I'll probably another scan after that and then go from there. I'm absolutely shattered now it's so draining all this worry but glad things are looking better for now . Hope everything goes well for you all too Lots of love Clair xx
Oh I had a marker test done in February too and it came back fine xxx
Member

Re: Ovarian cysts & tamoxifen

Hi Badgers,
Your situation sounds very similar to mine. I had an MRI & tumour marker blood tests which thankfully all came back fine. It does appear to be a side effect of Tamoxifen unfortunately. I will get another scan in 6 weeks to see how things are & will see the oncologist in a couple of weeks to maybe discuss an alternative to Tamoxifen. I do wish you well also, let me know how you get in? Best wishes. Sonia x
Member

Re: Ovarian cysts & tamoxifen

I started tamifen in October last year, and have stopped for a break advise of breast care consustant  as having some reactions to to it  . I was was looking for posts on coming off tamoxifen and came accross this post  - just fresh from an internal ultrasound. One of my ovaries is distended as so full of what appear to be cists , but sonongrapher is discussing with consulatant as so big. I found this post strangely reassuring despie been one edge until get results next week . I wish you all well . 

Member

Re: Ovarian cysts & tamoxifen

Hi Jasmin,
I am having a very similar experience. Saw the gynaecologist last night with my ultrasound scan results. I was told by the radiographer that my many cysts were simple & to be re-scanned in a couple of months. The gynaecologist read the report & sent me for cancer marker blood tests & an MRI today. I will get the results at my consultation tomorrow morning. I am going out of my mind with worry, feel exhausted, can’t sleep etc, it is awful do I feel your pain. S xx
Member

Re: Ovarian cysts & tamoxifen

Hi , I diagnised breast cancer, surgery in August 2017, I satrted taking Tomxifen about 5 months, I had USS  in September showed Dermid Cyst, and 2 cm Cyst in ovaries. I had another TVUS 2 weeks ago, showed the cyst got bigger ( 6 cm). They gave me blood tests for tumour marker today. I am in shock. Can any one  had similar exprience?

Member

Re: Ovarian cysts & tamoxifen

Thank you Nicola & Clair, it is so annoying that Tamoxifen appears to have these side effects. I cannot believe I have 7 cysts & I have only been on it for a year! I don’t know what the gynaecologist will say. Such a shame as I don’t seem to have any other side effects on Tamoxifen. Best of luck to you both. S xx
Member

Re: Ovarian cysts & tamoxifen

Hi Sonia
I had a very painful 6cm clear fluid cyst removed last may it showed nothing nasty then and I've just had another scan Feb 22 that showed another cyst so that's 2 in under a year and of the lining of my womb is thicker. I'm seeing my consultant on Thursday to talk about stopping the tamoxifen ( I was diagnosed with dcis high grade in July 2016 ) and waiting for a gyne referral again . Love Clair xx
Member

Re: Ovarian cysts & tamoxifen

Hi Sonia,

I’ve had a pelvic scan as well which revealed polyps in the womb and an ovarian cyst of  2.8cm. I’ve been sent for a blood test to see if I need another scan in May to check if the cyst has changed, waiting for consultant to tell me about that and have to have a hysteroscopy to remove and test polyps. Had to have one of those 18 months ago too but results were clear. Been on tamoxifen 3 years!  It is worrying as you have to go through all the waiting for results again. 

Nicola

Member

Re: Ovarian cysts & tamoxifen

Sorry should say the biggest cyst was 5cm not 2
Member

Ovarian cysts & tamoxifen

Does anyone have any experience of developing ovarian cysts whilst on Tamoxifen?
I started taking tamoxifen in January 2017, zing August 2017 I had a pelvic scan which revealed thickening of the womb lining & a 4cm ovarian cyst. I had further investigations & it was all benign.
Had another scan today & I have 5 cysts on one ovary, the biggest being 2cm & 2 smaller cysts on the other ovary. The sonography said they all look like simple fluid filled cysts so I guess I will be discussing this with a specialist. Seems the tamoxifen is to blame but was keen to hear from other ladies who may have had a similar experience? Thank you. Sonia