New To The BRCA Group ?

Just seen your other reply! Yep, looks like bupa get you at your weakest, so you don't have the energy to fight back!

I will push it further!

Wendy

xxx

I think your point about 'get you at your weakest' is most valid Wendy .... I suspect BUPA assume we might not fancy squaring up for a lengthy debate about why it might make sense to help support the growing number of us that are finding out we are in this boat and want to do something to help ourselves with the knowledge we have acquired. After all there's so many more fruitful things we can be researching and understanding and working out how to manage it all, heck why bother having a confrontation when you can just walk away and join a queue elsewhere? 

If we all push in our own way someone somewhere will start to listen. 

Donna 

This debate has been on the Facebook BRCA forums too and AXA and others all refuse to cover as they feel it's 'preventative' surgery. All poor. I think we need some well established Drs to write to them before they'll take notice. 

Most people I know have simply had all surgeries on the NHS instead. But it's a bugger if you have paid into private healthcare and get nothing back. 

Dr Adam Rosenthal from UCLH is in an ongoing battle with BUPA about this. The Telegraph is working up an investigation. If you are interested in talking to them friend me and I will pass on details. 

Just giving this post a bump for new BRCA members.

There is further information at the top of the previous page for anyone newly diagnosed.

Take care, G n' J

My sister has just been diagnosed with oc and selfishly I'm now panicking about myself! I'm just over 40 and scared incase I have the gene. The doctor said I can get genes tested once I know more about my sister. However I've gone into a total state of panic and can snap out of it. 

HHi Diane

First things first: DON'T PANIC. 

Right. Got that said. So second, I am really sorry to hear about your sister. Any kind of cancer diagnosis is always a horrible shock and when it's ovarian cancer it now comes with the added pressure of thinking through the genetic testing aspects. 

Did I say don't panic?

I think it's really important to remember that only about one in ten cases of ovarian cancer is BRCA related. If your sister does prove to be BRCA positive, then she will be carefully monitored and may have access to new drugs called PARP inhibitors that are highly effective for some of these cancers. It would also open the door for you to get checked. For now, though, all you can do is wait. It's tough, I know, but honestly this is not an emergency. Hopefully all the information and the news about your sister will start to settle and you and she will be able to find a way to care for each other. I really don't think you are selfish - and as a sister myself I do think we need to care for each other at times like this. Ok, she probably needs more support right now but I bet she's worrying about you too. 

So really. Don't panic. It won't achieve anything. Focus on the things you can influence now - whether that's being there for your sister through appointments or making her tea or making her laugh. For yourself you can make sure you know the signs and symptoms of breast and ovarian cancer. 

I hope this helps. 

Sending you lots of hugs. 

Xxx

Hi Diane,

Totally understandable that you are scared, read through some of the old posts and you will find a lot of positivity from those of us that are on the other side of finding out we have BRCA and even on the other side of having had the risk reducing operations.  It is all very daunting and as sad as it may seem, if you are diagnosed with BRCA it will just become a part of you and you won't even think about it on a daily basis.

If you have a strong family history of breast, ovarian and pancreatic cancers you should be able to get tested now regardless of what happens with your sister, push for this if you want the testing done now rather than later.

Best wishes and love to you and your sister.

Katie

Thank you. The doctor has sent me for a  125 blood test and scan and said to what to see my sister type of ovarian cancer. 

Thank you for your reassurance. 

You are all amazing and strong women and very much appreciate all the responses. 

Thank you for your positive words. Really appreciate it. I need to man up and reading what other women have gone through has amazed me. You are all such strong women and very inspiring.