Been a long,long time since I posted on here.
Anyway, I am now living out in Australia where the cancer care is VERY different to the UK. I can say it’s definately more thorough.
My oncologist here has advised me to have my ovaries removed in 2 years time when I’ll then be 38 AND I’ll have been on Tamoxifen for the 5 years.
If I agree to it, I’ll then be eligable for the drugs which have proven effective for post-menopausal women. If I don’t go ahead with it, there wil be nothing for me to take as the Tamoxifen loses it’s effectiveness after 5 years apparently.
BUT - I feel ok about having my ovaries removed but NOT ok about how I’m likely to feel afterwards. Plunged into an early menopause at 38 and unable to take HRT!
I’m not sure how I’d cope. The Onc said I can take a drug called Bishosphonates to help my bones ( ovary removal causing early menopause can bring on early osteopososis! ) but I THINK they are nasty drugs with naff side effects so I don’t want them. I’m more worried about how I’ll look and feel at 38 and post menopausal.
Anyone shed some positives on the scenario?
Had my ovaries removed about 3 years ago when I had to have a hysterectomy, had very little side effects as I suspect I may have already been going through an eary menopause at 44. As far as the bisphosphonates (hope I spelt it right) go been on them 2 years now first infusion was very hard felt very flu like lots of aches etc after that no problem. Here in NZ the thinking is that using pamidronate (which is the drug of choice here) and using it with letrozole they seem to have a good anti cancer relationship. Nothing proven with studies but that seems to be the thinking.
Geeez Kiwigirl, that’s really interesting.Thanks for replying. I think I might be peri-menopausal. I need to have my blood checked to see where I’m at. Sometimes I have a period, other times not. I feel really scared about the bisphosphonates. When I’ve tried to find info on them I end up losing patience as it’s all medical blurb! Do you think there’s ways round NOT taking them? Like increasing calcium intake big time? Also, I think I’d be put onto one of the arimitase inhibitors post ovary removal. I really don’t want to be taking them or even just a lot of other tablets once I’ve had the op. One tablet a day is MORE than enough.
Did you use any support groups or anything to help with going through a surgically induced menopause at a young age?
Hi pearly, good to ‘hear’ from you. Glad to see that you are enjoying life in the Antipodes.
I had a hysterectomy when I was 34, 15 years ago. Although the surgeon left one ovary, it packed up pretty quickly and I went through the menopause when I was about 38. Because there is a history of osteoporosis in my family I was put on to AD-Cal, a vitamin d plus calcium supplement. Regular bone scans have shown that my bone density has remained stable. I was also encouraged to take more exercise and walk a couple of mile a day, usually to the pub!
So now I’m nearly 50 and I don’t think I look any different to my ovaried 50 year old friends. As to how I feel, that’s another matter because in the last five years I’ve had breast cancer twice. Lumpectomy, chemotherapy and radio therapy followed 18 months later by mastectomy, reconstruction and some seriously awful chemotherapy. I still struggle with the side effects of the latter but overall I feel pretty good!
Sounds as though your oncologist is taking good care of you. I’ve read really good things about biphosphonates but I can’t comment on how they would effect you.
I had my ovaries removed 2 years ago and was dreading being thrown into instant menopause. I must admit it isn’t nearly as bad as I anticipated. I have a few night sweats but thats all. I had a bone density scan 6 months after oopherectomy and it showed osteopenia. I take a supplement called osteocare and have increased the amount of weight bearing exercise I do, my last scan which was about 4 months ago showed no further deterioration in my bone density so I think the supplements must be doing the job.
Hi there, I had my ovaries removed when I was 41, after being diagnosed with Ca Breast at 40. I recovered from surgery, chemo and radio, before taking the next step. I have the BRCA2 gene which makes you more prone to ovarian cancer too, so felt the sensible thing to do.
My sister and i were diagnosed within 3 months of each other, and so had our ovaries out together!!
I had hot flushes which were fairly awful for a time, but my sister had none. I found a herbal remedy and soya milk helped. I had regular bone scans, and my density was that of a teenager, so did not need to start biophos. (I now have bony secondaries, so have them IV every 3 wks with current chemo.)
The reason i started on the bisphosphonates was because I have bone secondarys and of the danger of fractures etc. Not sure if you fit that or not. As a general thing the bisphosphonates are only given to women with secondarys in the bone and those who have osteoporosis (forgive my spelling). That seems to be the thing here in NZ. As to Calcium supplements would check that out as I had heard that there is the danger of hypercalcemia a very dangerous condition involving too much calcium in the blood.
good to read all your replies as ever. Kiwigirl, I don’t have bone mets ( that I know of ) so I’m desperately trying to do what I can to avoid those bisphosphonates post ovary removal. I’m doing as much research as I can on how to cope with the side effects from the op. I was prescribed Calcium with Vit D after I had my DEXA scan 2 years ago which showed up early osteopaenia ( the early stages before osteoporosis but not osteoporosis at the time ) I don’t take the Calcium anymore. I walk every day now and feel so much better than before. My bones don’t creak and moan whenever I move! I think I’ll get another DEXA next year to check progress, if any. I think I’ve got my head around the idea of the oopherectomy ( ovaries removed ) but just want to learn more about dealing with the side effects of early menopause for someone who couldn’t get HRT.( me )
Any other ideas welcome guys!