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
Sorry should say the biggest cyst was 5cm not 2
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
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
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
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
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 .
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
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
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
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
That’s really good news xxx
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