Hi I got diagnosed with BC late last year aged 47 .Had lumpectomy in January this year followed by radiotherapy.Now on Tamoxifen.Had a Mirena in place for heavy periods which I had removed at the oncologists recommendation.Fast forward 5 months on Tamoxifen and having periods from hell! Saw gynaecologist yesterday. I need to make a choice between endometrial ablation or full hysterectomy with removal ovaries. My grandmother died of ovarian cancer at 54 years. I’m waiting on genetic testing result but as I understand even if negative it’s no guarantee as we still have a lot to learn about genes. Mum had full hysterectomy about my age ( no cancer found) but was able to take HRT for 7 years.So I’m really trying to weigh up the risks and benefits . Any advice/ experience would be appreciated I have changed my decision a few times already Thanks in advance x -

@Lisa1407 Thankyou so much Lisa1407 for your input. Sorry to hear about your diagnosis. Just got my result back last week. BRCA negative ..... but after talking to the genetic counsellor she said given my grandmothers ovarian cancer and my breast cancer both at young ages there could be a genetic fault that we don't yet know about.So I'm going to bite the bullet and go ahead with the hysterectomy and oopherectomy.Thankyou for the reality check! Best wishes to you and your family x

Hi @Greengirl. Sorry to hear you're having these issues. Just before I was diagnosed with BC, I was considering a radical hysterectomy (pre-menopausal, ovaries to remain) or ablation. In the end, I had to put it on hold while I had BC treatment - same as you - lumpectomy and radiation. When the doctors found out I was considering hysterectomy, they recommended oophorectomy at the same time because I was very ER+ and reasonably PR+.I decided to ditch the idea of ablation because I thought if it doesn't work, then I have to go through another anesthetic and another procedure. I don't do well with anesthetic or twilight sedation so I decided, if I'm going to do it, then do it all properly.So I had the full removal of everything in mid-2018. Since then, menopause hasn't been as bad as I feared. It hasn't been great, let me tell you, but I don't think I suffered as much as some other ladies. I was on Letrazole, Aromasin and Tamoxifen for 18 months. The side effects of these were probably worse than menopause itself. I've stopped taking the medication altogether. I weighed up the options and quality of life and decided for me, it was best to stop. I also figure that with ovaries gone, there goes the main source of oestrogen which may help stop the cancer returning and I do all my regular check ups and if I see anything weird I get it checked out straight away.I also had the BRCA gene test - came back negative.Another blood test I had was a genotype / pharmacogenomic test. It costs about $220. It tests how you react genetically to various medications. It tests a LOT of medications unfortunately it doesn't test for letrazole or aromasin. It did however test for my ability to tolerate tamoxifen and came back with a big NO - and recommended find an alternative.These days I mostly have what I call uncomfortable warmth rather than hot flushes. So in winter I turn on the fan for a few minutes or in summer I lower the air-con temp for a while until it passes. Then I'm good to go.And not having painful periods anymore? OH MY GOODNESS.....YEESSS!!!!! Loving it!

Although I was in a different position to you @Greengirl, having being diagnosed with de novo metastatic breast cancer, the first thing I had done was have an oophorectomy (at age 50). I was BRACA negative. The procedure was a really simple one even though it takes about 3 hours with keyhole surgery. I had mine done mid afternoon and the next morning was walking about and discharged from hospital. Of course it threw me into menopause straight away, but only had hot flushes for a few months and then it was over. I am not sure if everyone is that lucky. But my advice would be if you don't need your ovaries, get them removed because of the risk of ovarian cancer and if your breast cancer progresses. It is a 'brainer' for me. Same goes for having the hysterectomy, although I know that is a much bigger operation with recovery time needed. I have friends (w/out breast cancer) who have had ablation - it doesn't always work! Good luck with your decision! xx

@Deanne Thankyou so much for taking the time out of your day to share your experience.It helps a lot ! Thankyou! Take care and have a great weekend x

@Greengirl what a toughie! I had a hysterectomy in 2017, due to fibroids - ovaries preserved. I was pre menopausal at the time. Now I am 48 and at the start of full blown menopause... I get a lot of hot flushes which end in me breaking in a sweat...not nice at all.Endometrial ablation sounds a fairly easy procedure in comparison to hysterectomy (mine was rather complex, 3 hours in surgery and recovery was not an easy road).I guess for you, the history of ovarian cancer throws a spanner in the works.It really is a matter of wighing up the risks and benefits. sorry I am not really helping🙈.Good luck with everything xo

To remove ovaries or not ?? | BCNA Online Network

primek
Member
5 years ago
I went through peri- menopause between 47 to 49 anyway and finally through by 49. The ovary removal will put you into fast menopause but the tamoxifen probably is causing similar symptoms anyway. I had strong family history of ovarian cancer with a BRACA1 gene, which is the one linked to both ovarian and breast cancer (still risk with BRca2 but lesser so). I didn't have the gene though so didn't have the surgery.
I had irregular periods in last year of menopause after the prior year of increased frequency and flow.
Tamoxifen does have some uterine risks so this could be what is causing issues. Is that what they think and doing genetic testing to be sure?
Greengirl
Member
5 years ago
@JulieVT11 thanks for that Julie.Sounds very unpleasant.Sorry you are going through this.I can’t cope with the periods.endometrial ablation is an option for that (50% success rate )but ablation doesn't address the family history of ovarian cancer.You have given me some food for thought.I appreciate your honesty.Freight train doesn’t sound real flash lol.Thanks for helping me in my research to weigh up the pros and cons.Your right I think I’m trying to rush my decision. Take care x
JulieVT11
Member
5 years ago
@Greengirl I had ovaries removed few years before BC due to cysts and then went on HRT which was an absolute life saver. Then BC came along which was ER and PR positive so had to stop HRT immediately and have Mirena removed. Full blown menopause then hit like a freight train and as I am on tamoxifen now I’m really struggling with it. My only advice is if you think you can cope with periods it might be easier to cope with rather than menopause, perhaps you could give it 6 months and see how you cope before you make the decision.
Greengirl
Member
5 years ago
@Deanne Thankyou so much for taking the time out of your day to share your experience.It helps a lot ! Thankyou!
Take care and have a great weekend x
Deanne
Member
5 years ago
Hi @Greengirl,
I was 47 at diagnosis and after mastectomy, chemo and radiation, I went onto Tamoxifen. Chemo stopped my periods and I was told that this would most likely be a permanent menopause. But, after 18 months my periods returned very heavy and painful. I then had ovaries and tubes removed at the age of 49.

The only issues I have had (5 years later) is bone density loss which was attributed more to changing from Tamoxifen to Femara than having ovaries removed. Vaginal atrophy also attributed to Femara.

Due to side effects of Femara my oncologist changed me back to Tamoxifen about 18 months ago. I have a better quality of life on Tamoxifen.

Everybody has a different situation but I do not regret removing the ovaries. Best wishes for your decision making.
Greengirl
Member
5 years ago
@eightdays hope you are doing well ?? Just wondering if you went ahead with removing your ovaries and if so how’s it going ?
Greengirl
Member
5 years ago
@Jovdp Yes it’s a bit of a pickle isn’t it. Thanks for your comment.
All the best for the rest of your treatment x
Jovdp
Member
5 years ago
Hi @Greengirl I’d be interested to see the advice you get from ladies here. I’m looking at making a similar decision myself. Diagnosed with two tumours both 85-95%hormone+ bc and full axillery clearance in March. Lumpectomy to remove, now nearing the end of chemo, then radiation and then on to Tamoxifen. I’ve had a history of periods from hell and endometriosis which ended up getting to stage 4 before anyone diagnosed and removed. Had the merina in to control periods but that came out, now it’s out I’m getting those delightful ovarian pains again! Will see my gyno once chemo done just to get his advice, interested to know what others have done.
Hope you’re keeping well x

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