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How to know if something is wrong, and ovaries!

14 REPLIES 14
debbi
Member

Re: How to know if something is wrong, and ovaries!

hmmm it is hard,I am lucky enough to have already had 3 children which is enough for me,so not thinking about that side of it,just the long term effects of having them out.I have got a family history,well my mum had dcis which wasnt cancer but would have been if left,my aunt had a lumpectomy and then 5 years of tamoxifen a couple of years ago and 20 odd yr ago my great aunty died of bc but she was 82.I am the only one in my family,and I have a very big family,mum and dad have both got 8 brothers and sisters each and they are all married so got 'millions' of cousins etc but I was the chosen one is what I say and thats why I got full ' blown cancer'.I will keep you posted on what they say to me,supposedly in about 6 weeks time I will get my appointment for genetics(not in scotland now thats why I have to wait for addenbrookes)I just look at it this way too,we r being monitered regularly so hey ho,but its very hard to try to live life without thinking cancer now,that word is forever embedded in my brain.Just wait and see what your results are and then what kind of risk you may be at before you make the deciscion.

jacqc
Member

Re: How to know if something is wrong, and ovaries!

Hi All

I am taking part in the UK FOCSS trial (familial ovarian cancer screening study - I think thats what it stands for). I have annual CA125 bloods and ultrasound scan. I have been told I can have my ovaries removed at any point I wish, in the meantime I can continue with monitoring indefinately. I believe you have to have a proven family history, but I could be wrong and it is worth enquiring.

Jackie.

lizalou
Member

Re: How to know if something is wrong, and ovaries!

That's really interesting - thanks Debbi. I'll get the results of my gene testing shortly so maybe that will help with my decision. It's hard to weigh up this kind of choice when you never really expected to have to consider fertility vs life issues. Obviously life wins every time, but it's still hard...

xx

lilacblushes
Member

Re: How to know if something is wrong, and ovaries!

hmmmm food for thought there then Debbi ...

debbi
Member

Re: How to know if something is wrong, and ovaries!

Hi liz,I have recently had an appointment about having my ovaries out with the surgeon.For the last 2 years I have been adamant that I am going to have them out,I am just 40 now,and I was told by the genetic clinic in scotland that it would be for the best if I had them out,but then my results came back and I dont carry the main 2 genes relating to bc,so now he does not think I am at as great a risk as first thought,and told me,your only 40,your symptoms will be a lot worse than having the zoladex,your libido will go,not,it might,he said it will,also if I remember rightly when you have them removed it takes away whatever makes the little bit of testosterone that our body needs??????so now I have been referred to addenbrookes to find out exactly what my risk is,and I am thinking if I am not at high risk I am going to leave them for a while,got another 3 years of zoladex anyway,then I think I would really like to feel 'normal' again for a while,whatever normal is,I have forgot what its like to live without all the probs that this mother brings on.

debbi x

lizalou
Member

Re: How to know if something is wrong, and ovaries!

Thanks Ann - that's really helpful

Liz

Ann_BCC_
Member

Re: How to know if something is wrong, and ovaries!

Hi Liz

I spoke to one of our nurses about this and she suggests you might find the BCC factsheets 'Fertility issues and
breast cancer treatment' and 'Ovarian ablation & suppression' (links below)

She also advises discussing this with your oncologist, as he or she will know your individual circumstances.

http://www.breastcancercare.org.uk/docs/fertility_issues_feb_06_0.pdf

http://www.breastcancercare.org.uk/docs/ovarian_ablation_june_2007_0.pdf

Hope this helps

all the best

Ann

lilacblushes
Member

Re: How to know if something is wrong, and ovaries!

regarding the waiting time for surgery - I thought like you that speed was of the essence so I used my private medical for referal, dx and surgery to cut out 4 weeks waiting time - I have since been told that 4 weeks wait would have made no difference whatsoever to my outcome, although it did cut out 4 weeks worth of worrying.

lizalou
Member

Re: How to know if something is wrong, and ovaries!

Thanks everyone - I have had testing for BRCA genes, but don't have any family history to speak of, so would be surprised to find I was a carrier which makes the risk of my ovaries a little less clear cut for me. Is tricky as really want to make decisions which could make a difference but sometimes I find getting straight answers from Drs quite difficult. When I was diagnosed they told me I had a lump in my nodes, but couldn't have surgery for 6 weeks due to wait times, but not to worry as it wouldn't make any difference when I would have thought speed was of the essence. Maybe am just a bit thick!!

Liz x

msmolly
Member

Re: How to know if something is wrong, and ovaries!

deleted

lilacblushes
Member

Re: How to know if something is wrong, and ovaries!

I was dx in Jan - marginally er+ (5%), not responding to tamoxifen so they are suggesting monthly injections (of zoladex I think). As I am 40 with a grown up son am considering asking for them to whip my ovaries out

Ruby1
Member

Re: How to know if something is wrong, and ovaries!

Hi Lizalou

I'm very interested in what you have said above as I'm HER2+ and I'm a bit confused about why having ovaries out would help survival because the cancer is not hormonal although I have to say I think I have heard this said before. If you find out anymore about it, I'd be really interested to know and in the meantime when I next see my oncologist, I'm going to ask about this. I'm in the same situation as you, young, got periods back 6 months after last chemo, been to see a fertility specialist who scanned me internally and everything looked fine but waiting for blood test results which will tell me. I'm sorry to hear you are post menopausal and hope your fertility comes back.

Best wishes
Ruby x

annamarie
Member

Re: How to know if something is wrong, and ovaries!

hi, im 36 and had my ovaries out 4 weeks ago, before hand i thought it was my choice, however i saw my onc 2 weeks ago and he said having my ovaries out was the best thing i could have done and has now given me "an excellent prognosis" my cancer was only weekly Pr+,
Anna

lisaf
Member

Re: How to know if something is wrong, and ovaries!

hiya, i was diagnosed in February this year but am already looking to have my ovaries out this year due to family history of the disease - Im 35 and no children but Im doing it to do whatever I can to reduce the risk
x

lizalou
Member

How to know if something is wrong, and ovaries!

Hello All,

Not been on for a while. I am just coming to the end of almost 18mths of treatment for HER2 + bc (mastectomy, chemo, rads and Herceptin). A couple of questions from people much wiser than me about where I go from here.... I had 14/25 nodes so realise that I could have a recurrence or spread.

Firstly, my bc nurse said that once I finish Herceptin I'll be seen in clinic every 6 mths or so, with an annual mammogram being my only scan unless something is wrong but that I can call her anytime if there is anything I am worried about. I really want to live my life and move on from this, but how will I know if I need to be worried?

Secondly, I didn't have hormone receptive cancer. My periods have come back but a recent blood test showed I am still post menopausal so not ovulating. I am hoping my fertility will come back, but wouldn't think about a family for a couple of years ideally. I am 29 years old. A dr mentioned to me that even in non hormone receptive cancers, having the ovaries removed has increase survival chances. Has anyone else been told this? They told me that I didn't need to think about surgery yet, but if my fertility comes back and I am able to have a child I might want to look at whipping them out afterwards...

Grateful for any views or advice

Thanks

Liz xx