Hi, wondering about other peoples experiences of having ovaries removed due to hormonal bc. I’m taking tamoxifen but haven’t been offered ovary removal and was wondering if this was something I should think about to decrease chances of recurrence? Any advice most welcome.
Thanks
Smiler
x
Hi Smiler ,
While you’re waiting for your fellow forum users to reply to you question, here is a link to one of BCC’s publications that you may find useful on Ovarian Ablation and Suppression:
breastcancercare.org.uk/upload/pdf/ovarian_ablation_june_2007_0.pdf
Kind regards,
Kate, BCC Facilitator
Hi Smiler
Just to say that I had my ovaries removed in June. I had been asked to consider the option then I began to experience twinges in my ovaries and was referred to a gynaecologist, who told me ovarian cysts were a lesser known side effect of Tamoxifen. So the decision was made for me really.
The op was so straight forward, one night’s stay, 3 tiny incisions and minimal discomfort (I wouldn’t even class it as pain,) I was back driving etc a week later. I was then changed to Aromasin, as I had had Tamoxifen for the recommended 2 years. This has been much better than Tamoxifen for me and my hot flushes have all but gone! I know it’s early days but I am confident that in my position I did the right thing. ( I had 100% oestrogen positive BC with 10 nodes infected, so I’m pleased that I have done something to lessen the risk of reoccurance, for me it has also turned out to be beneficial in other ways as the Aromasin agrees with me more than the Tamoxifen.
I hope that you get lots of good advice and make a decision that is right for you too! Any questions ask away!
Nicky
Hi Smiler
I am 36 and had my ovaries removed in July after 15 months of zoladex and tamoxifen for 100% + hormone positive cancer.
I will continue with tamox until the 2 years and then switch to AI.
The op was done as day surgery. I went in at 8am, down to theatre at 10.30am, and I was home by 3pm. I even went to my sons parents evening that night!
Side effects since are no different, just a few mild flushes. I am on calcium and vit d supps and have 2 yearly bone density scans.
I am very glad my onc offered me this op.
All the best xx
Hi all
I have spoken to my ONC re ovary removal, I am ER+ 6/8, Progesterone 8/8 and HER2+. He has said that in all studies conducted, there is no concrete evidence that removal of ovaries is beneficial, although the jury is still out. They are currently conducting a study with results available in a years time to see if anything has changed. He says that Tamoxifen is just as good, without removing the ovaries and bringing on a early menopause. So I am going with the flow for the moment. I will start tamoxifen early Jan so a year in, when the results from the studies are back will make a decision. I’m 37 and still hope to have a baby when this is over so want to keep them for as long as I can, although at the moment, more concerned about getting healthy and getting through this blip
Good luck and love
Jayney
xxx
Thanks for all your replies.I haven’t actually been offered ovary removal but was wondering whether I could ask for it? Just thinking it may be beneficicial? But obviously thats not always the case?
Smiler
x
HI ALL
I asked oncologist about ovary removal and he said there is no need.
However been having a lot of bloating and feeling uncomfortable since taking Tamoxifen, which I started 6 months ago, so my doc sent me for an internal ultrasound scan today to have ovary’s checked out,and the sonographer said she could not find my ovary’s, where have they gone? does this mean something nasty is hiding them?
I am so confused, she said go back to your doctor for results next week
Could anyone shed any light on this please as Im confused.
Libby xxx
bumping this to try and get responce
Hello
No, they coud be stuck in your pelvic area, mine were and I didn’t know this until I had them removed - easy peasy.
It reduces your chance of OC by quite a large percentage and also reduces risk of another BC by taking away the source of most of the oestrogen.
Oophorectomy can be done as a day case with keyhole surgery. For me it was a no brainer and recovery was swift.
Hope this helps.
Hi Smiler
Yes lots of women do have to ask for an oopherectomy, but my onc offered it to me right from the start.
When they knew i was 8/8 for both hormones, they put me on zoladex and tamoxifen and said that at anytime i could stop the zoladex and have ovaries removed instead.
They said this would be the best option, as it would stop oestrogen long term (as i was only 34) rather than just 2 years with zoladex, and also would remove the risk of ovarian cancer.
Ive learnt this…Different areas and different oncs = so many different opinions!
I was already on the list for ovary removal when I was diagnosed. I’d decided to go for it to reduce my risk of breast cancer. It was a year ago today I had the op, keyhole surgery, and was physically fine afterwards, I had to keep remembering not to do things rather than feeling I couldn’t.The menopausal symptoms really only lasted a few months and they were no worse than the hassle that PMT used to be. I felt I had reduced my recurrence risk and could take aromatase inhibitors which would be more effective than tamoxifen. So overall I’ve been really happy. Two tiny scars each side of my abdomen and two more hidden away (I’ve got the photos to prove it if that’s something that bothers you).Hope this helps
Thanks for the positive posts - I will be discussing the matter again post chemo and will opt to get them out if it increases my chances of the cancer not returning - as you say - it’s a no brainer really!
x
Oh well had my results now and they have found a cyst, now I have had a blood test to see if it’s overian cancer, what a nightmare…
Libby
What a nightmare - keeping everything crossed that it is nothing sinister. When do you get the results?
x
HI Jayney
have to wait about a week x
HI Jayney
have to wait about a week x
Hi Libby
have you had any pain in your ovaries or back ache? Or did you Journeyman? I ask because I went for my Tamox script Friday and after general exam Doctor said she wanted a blood test, had this afternoon, to check cancer markers in ovaries and urgent scan asap. I’m to go back to the GP on Thursday… I only mentioned my back ache in passing and ended up being checked.
Whatever my results are I think they will be taking the ovaries out as it was mentioned right back when first DX.
I’m hoping she’s just being super cautious and have fingers crossed. Got them crossed for you too Libby.
Katie
HI KATIE
Yes I have back pain and pain over my overies
really down and very worried xxx
Sounds like we’re worrying together then…
I try to tell the brain that it’s ok but it’s not working. They’re expecting my blood results back for the appointment on Thursday and insisted I had an appointment booked with a doctor I felt good/comfortable with for when they discussed the results, why… made me worry more actually, are they expecting bad results back?!
I’m not down but I do intend to have a glass of wine or 2 tonight. A consious decision as I’ve not had wine for 6 months and have “decided bugger it”!
Fingers crossed for both of us…Hopefully just regular problems.
take care
x x x x x
Hi Katie and libby,
Just wanted to send you both good wishes and support as you wait for your results - it’s such an awful time as you wait.
I’ve just been to see a gynaecologist re super-heavy periods, and he seemed quite keen to do away with my ovaries at the same time as any surgery (I’m hormone positive).He’s written to my onc (who I saw first, and who wrote to my GP to ask her to write to the gynae - I’ve gone full circle!) for his opinion, and I’m having an internal ultrasound and ovarian cancer screening before I see him again. I didn’t even know having hormone positive bc put you at higher risk of ovarian cancer until this week! And then tamoxifen can cause pre-cncerous changes of the womb… where will the worrying end?!
Jacquie x