Hi,
I was diagnosed at 34, with triple neg, grade 3 lump in Sept 2010, Found out I had the BRCA 1 mutation in January and am now planning for a BSO as soon as possible, due to earliest occurence of ovarian ca in the family at 37. (just found out about 10 days ago that another aunt has ovarian ca as well, so sooner the better). Before the op I have an appointment with the menopause clinic so they can work out ‘how to manage my menopause’ particularly as my onc advises no HRT.
I am unsure what is going to be involved in this clinic appointment, so was wondering if anyone had any advice as to what questions I should be asking. I have thought about bone density, but unsure what else, I should be thinking about.
Any suggestions gratefully received
Jen.
Hi Jen,
I am sorry you are having to deal with this.
I too have a brca1 mutation. I had b/c first in 2009- like you grade 3, triple negative. I had bilateral mastecomies in Feb and was due to have my ovaries removed (now!!) but this has been disrupted as an ‘occult’ tumour was found in the tissue removed from my other breast so I am now having more treatment. This was also grade 3 triple negative. But, I will have my ovaries removed after chemo.
This is hard for me, because I dont want to project my own axieties about the menopause onto you, and you need to remember that everyone is different. Not knowing where you are at, dont want to make you feel more worried.
I am a bit older than you (42) and my first chemo put me into menopuase. I found hot flushes manageable, but I have met some women who suffer really badly and it undermines their quality of life. You rightly pick out bone health, but I would also asks lots of questions about sexual health - very important to all women, but esp as a younger woman because you will be dealing with these challenges sooner in your life. You need to tell me if you want more details.
For what its worth, despite having had breast cancer twice, my onc thinks HRT is fine when my ovaries are removed - this was a big motivation for me in having the breast surgery first. So, my advice is to research this carefully and maybe think about a second opinion. The reason I am being so strong in this is that the Marsden told me they ha recently changed their position on this. Again, tell me if you want more info on this.
I am sure you will get some other responses, but in the meantime hope this helps and good luck.
Rattles xx
Hi Squeak - I had a BSO last July and would be happy to share my experience with you. PM me with your specific questions?
N x
Hello Squeak,
I had an ooph 5 years ago when I was 35. Since then I’ve had a couple of bone density (DEXA) scans to monitor my bone health, which has been fine (I took Calcichews until recently to help with this, especially as I was taking an AI as I’m ER+). Other than that, there’s been no management of my menopause - I just had to get on with it! But it really hasn’t been that bad; other than the hot flushes and weight gain, I haven’t really had any major SEs.
Feel free to PM me if you want any more specifics. Good luck!
Angelfalls xx
Hi Squeak,
I noticed a message in my inbox but when clicking on messages it was gone - probably a website teething problem. Just in case the message was from you (I could not see a name) I thought I’d post my experience here.
Was diagnosed at 41 in June 2010 with ER/PR positive, HER neg. Post treatment (chemo, WLE + full clearance and radio) I discussed a BSO with my Onc as large tumor, node involvement and a significant family history (BC + Ov) puts me potentially in a higher risk bracket for recurrences/secondaries. Onc was happy to refer me, so to cut a long story short, had the oophorectomy 5 months after active treatment finished. Op itself was done via keyhole surgery and recovery was quick.
The SE’s : Hot flushes became more intense and more frequent but you do get used to them. I did not have a bone density scan yet as am on Tamoxifen. I do take calcium and vit D3 supplements. When I move to an AI checking of bones will become more topical. I do weight bearing exercises regularly to help with prevention of bone thinning. The main problem for me has been mood swings, that I put down to menopause. But really in the bigger scheme of things, it’s been not as bad as I thought it would be. Little bit of weight gain, but I go to the gym regularly to combat this!!
Mentally I felt relieved that my body’s main oestrogen production had been stopped. Hope this helps, do PM me any time. I don’t come here too often now, but will look out for messages and hope they don’t just vanish into cyber air!
Nx
Hi Squeak,
I noticed a message in my inbox but when clicking on messages it was gone - probably a website teething problem. Just in case the message was from you (I could not see a name) I thought I’d post my experience here.
Was diagnosed at 41 in June 2010 with ER/PR positive, HER neg. Post treatment (chemo, WLE + full clearance and radio) I discussed a BSO with my Onc as large tumor, node involvement and a significant family history (BC + Ov) puts me potentially in a higher risk bracket for recurrences/secondaries. Onc was happy to refer me, so to cut a long story short, had the oophorectomy 5 months after active treatment finished. Op itself was done via keyhole surgery and recovery was quick.
The SE’s : Hot flushes became more intense and more frequent but you do get used to them. I did not have a bone density scan yet as am on Tamoxifen. I do take calcium and vit D3 supplements. When I move to an AI checking of bones will become more topical. I do weight bearing exercises regularly to help with prevention of bone thinning. The main problem for me has been mood swings, that I put down to menopause. But really in the bigger scheme of things, it’s been not as bad as I thought it would be. Little bit of weight gain, but I go to the gym regularly to combat this!!
Mentally I felt relieved that my body’s main oestrogen production had been stopped. Hope this helps, do PM me any time. I don’t come here too often now, but will look out for messages and hope they don’t just vanish into cyber air!
Nx
Hi squeak
I have brca 2 and had bilateral BCs followed a hyst and ooph followed by a chest wall recurrence. I was 37 when i had first BC it was hormone positive, then 40 when i got tnbc, 41 diagnosed with brca 2, 42 when i had hyst and ooph, 43 recurrence of grade 3 tnbc in chest wall.
I didnt go to a menopause clinic but because of my work i have a good knowledge og meno symptoms and treatment.
Lulu x
Hi Jen,
Similar situation - aged 35 at dx (31 March 2010), triple neg. After surgery, chemo, bi-lat mx then ovaries out (due to BRCA1) Nov 2011 I’ve had a chemical induced menopause and now the surgical one.
Oncologist has said that although HRT is technically contra-indicated, due to the TN dx I can have a low-dose HRT. He thinks this will help me with the SEs I have. GP wouldn’t prescribe anything for me without checking with an endocrinologist first - JUST had appointment with them this past week so we have a plan of action. It’s really about quality of life as they can give other things to help with the bone health side of things. If you haven’t already the menopause booklets from MacMillan are helpful (although for older women mainly a lot still applies).
If they don’t offer you a DEXA scan to baseline your bone density make sure you ask for one. I’m not on this forum much so if you have any questions for me best to PM.
All the best,
Mia