New To The BRCA Group ?

HI Caroline

Oh, b*****ks. I'm in a similar position and it is just awful. I had a end of treatment scan in January and then another in March which was all good and another in June (they are, for reasons I am not entirely sure of, very keen on scanning me). I was hoping to get the results from that and to hear that it was all looking fine and see you in six months. No. They'd found a 6mm node on a lymph gland just behind my stomach. Not big enough to trigger the next set of investigations but too small to ignore. So another scan next week. It put a right kink in my summer, I can tell you. Like you, I am worrying about a recurrence but hoping it's nothing. 

I do think it is fantastic that you managed a marathon. Well done. I couldn't have dreamt of doing anything like that this summer - partly because running is not my thing and even without the cancer I would not have been running a marathon but also because I was still not over the treatment. Because it was classed as uterine, I was offered radiotherapy and brachytherapy and while everyone says it is not so bad as the chemo I am not sure I agree. I was completely hammered. It ended in December; it was not until July that I could reliably get through the day without a nap. 

Anyway. here's to us getting through the next scan clear. I'll be thinking of you. Mine is on Wednesday next week with the results on 19th. When is yours?

xxx

So I just got my scan date for Mon 12 October.  Hope yours is OK on Wed.  They're not particularly nice experiences are they?  

Don't be too impressed by the marathon thing.  I'm not fast and it was really unnerving how many ultra serious runners the Berlin marathon attracts!  Still I needed to do this after the horrible previous year with the ops, chemo and general mental stress.  It gave me something to focus on. Let's hope that this was not my swan song! x

Hi Caroline

the fat lady isn't even in the wings yet :-) 

Fingers, eyes, toes, everything crossed for you on 12th. And I don't care how slow your marathon was, I'm still impressed 

xxx

Hi Donna,

Meant to ask you if you ever managed to get BUPA to fund your BRCA risk reducing surgery or did they still turn you down ?

Reason for asking is a new member is having similar problems with bupa (Oxford) for exactly the same thing.

G n' J

Hi, sadly not, it would appear the odds that having the BRCA 2 cancer gene are simply not high enough for BUPA to take seriously and they aren't in the game to help reduce risk and lighten the burden of the NHS. I paraphrase from my letter of complaint raised when I was initially advised that I was covered and then very quickly told that er, no actually I wasn't and I had been advised incorrectly because I was put through to the wrong department

"... our policies are to fund the treatment of acute phases of illness, which means the treatment is likely to respond quickly to treatment that aims to return you ot your state of health before experiencing the acute phase" ... "Consequently we have a number of exclusions, such as screening, monitoring and preventive treatment". 

..... "we can only consider funding towards prophylactic surgery if you're being treated for cancer and also have a test to show that you would be at high risk of developing further cancers in the future".

I gather that there does seem to be a slight potential if you go to BUPA BEFORE you are tested for the gene and they agree to you having, and fund, your testing. The medical opinion and risk factors provided by Gt Ormond Street were not enough for BUPA to consider that risk reducing operations might actually save my life and release a huge burden on the NHS either now or later if I develop cancer. 

Still, the appalling short-sightedness of our private healthcare companies aside I would like to advise that the NHS has looked after me brilliantly, and although the machine is slower than we might like once in the system with my requests and justifications fully understood and unchallenged (because they make sense weirdly enough - given my age, family history and risk factors) I have had my ovaries and fallopian tubes removed more quickly than I imagined as a cancellation came up ... and am now on track for my bilateral mastectomy. 

I would dearly love to say I had the energy to write to BUPA and question their logic in this matter but I really dont have the time - my life is too precious to waste right now. However, one day, when I'm out of the risk bubble I will get to say .... 'hang on a minute - does this make sense?'

Donna 

Hi Donna,

Thanks for getting back to us with a speedy reply - At least you tried.

Know what you mean about not having the inclination or time to chase these people up. They all know when you are fighting a battle you have limited energy and resources to waste.

Good luck for a hassle free recovery with your bilateral.

Take care, G n' J

Helpful to know, Donna. Thanks.

Hi,

has anyone successfully challenged bupa? i am brca2, and despite paying

for bupa, they are refusing to cover. 

Thanyou

wendy

Hi,

I was diagnosed brca 2 five weeks ago, and again BUPA have refused on the basis they do not do preventative surgery. Although they refuse to put this in writing at the moment. I have been informed that BUPA have set a precedent funding previous pbm's, and that this could be challenged by the health ombudsman. 

Best wishes

Wendy

There is a theme emerging.....

xxx