I am 37 with two children and married. Diagnosed stage 2, grade 2 on the 21 Sept.I have ILC, halfway through chemo. Start Taxotere 3 Dec…have chosen bilateral M and delayed reconstruction. Can anyone answer some of these questions?
1)I don’t see the point of keeping my ovaries, risky. I am currently on health insurance, but they won’t cover preventative treatment, will the NHS cover this as preventative treatment?..or do you think I would have to pay myself?
2)Does the NHS pay for genetic testing…Does anyone know…I have a daughter and this is important to me…I need to know that she will have as much information as she needs when she gets older…
3)Are there any diabetics like me out there, that have had implants as part of their reconstruction. I’m too slim to just take muscle from any part of me. Any suggestions?..There are so many choices
hi sorry that you have had to join us… but welcome…
can really only help a bit with your second question… i was referred to our local genetic testing centre but that was only because i come from a family with a bad family history - they tend to only do genetic testing if several family members and over several generations have had cancer… in my case my grandmother died at 45 of bc and her three sisters also got it in their 40’s… their daughters also went on to develop it and my aunt was diagnosed at 48… they are also interested in other cancers and you have to fill in a huge family history form with anyone’s cancer plus any other causes of death… in my case my other aunt had stomach cancer as did her daughter…
if after looking at your family history they decide there is a significant history they take a sample (either blood or saliva) and send it off to be tested… this doesn’t come back for many months i am waiting for my results…
in my case she said she is really pretty confident something must be happening - but did say so far they have only discovered some of the mutations… so even if you do get a clear result for brac1 and brac2 that doesn’t mean there is definatly no family mutation… i’m not sure if that is one of the reasons the testing is so scarce at the moment as they want to identify more of the mutations… if you do have brac1 and 2 they do recommend that other close family members are tested and also that you think about ovary removal as they are linked to a high chance of ovarian cancer and other cancers - so it is a lot to consider…
hope i havn’t rambled on too much… and to answer your question - yes the testing is free if the genetics people think the family history is bad…
re ovaries - I think that along with lots of other things, it depends on the hospital trust, as different ones seem to have different policies. I asked about ovary removal and was disuaded. This was a couple of years ago now, and I can’t remember the arguments, but I know I was persuaded by them. I imagine this is a very personal thing, and the answer will depend on a number of different factors, which will be different for each one of us.
Re ovary. I am 32 with er positive grade 3 cancer. One consultant told me to get them removed yet when she went on long term sick, the new one told me not to and that " i would regret it!". So guess it must perhaps be a personal opinion in the medical field and it would be done on the NHS.
My ONC, like Sue’s has disauded me so far, and I am er+. Says tamoxifen does the job without removing the ovaries and pushing into early menopause unnecessarily. Unfortunately, I have left it late to start a family, and it seems highly unlikely now that I will be a Mum
Thank you…that answers my question re genetics…No-one in my immediate or 2nd degree (granny, aunts etc)family has had breast, ovarian or tummy cancer. Strange that I got it at 37 yeah? I will have to ask to be referred and then pay for it myself as a (private patient). I am not waiting to have the BRAC1 AND BRAC2 results. Read articles about Lobular cancer and metastases…if it ever happened…in my case it would head for…ovaries, tummy and tummy wall…I will do something about my ovaries…its the only thing I can do…my ONC said he could arrange something and thought it wise.
Hi Lolly
Yes I am highly ER+ …will ask my GP if I can have this done for free then on the NHS…thanks for the advice
Roadrunner…I have had my children and will the tamoxifen not throw me into early menopause in any event?..thats what I have been told…so removing the ovaries…would not really make a difference? I will ask if inactive ovaries still pose a risk…
Evie…nice to speak to you again…you sent me an encouraging message when I was first diagnosed!..I think I am afraid of the fact that ovarian cancer is silent…not like breast cancer that you can feel…and loads of times its caught too late…would feel better if it were gone…it would help me cope over the long term with less worry…
Jayney…Nice to speak to you again too…I am sorry to hear that…I can’t begin to imagine how that must feel…there may be other options open to you though, depending on how you feel about it…adoption etc?..I will ask the ONC if its necessary to remove inactive ovaries…if they still pose a threat after tamoxifen
