Hello MagpieMaggie , that’s interesting,I was diagnosed with bilateral Breast cancer in July 22 ,all good now . Had reconstructive surgery as well and taking Letrezole for 10 years .Nobody has mentioned genetic testing ,but I will find out as well . Keep me posted xx

I did do some research, NICE have guidelines that states bilateral BC should have genetic testing. 

I'll update after my 1st appointment x

Oh ,that’s interesting ! Will have a look as well . Thanks for that xxx

Hi Magpiemaggie,

I hope that you are doing well. I am so sorry to hear that genetic testing has been overlooked for you. You should have been offered this under the Nice Guidelines. I am sure that you won't be looking forward to more testing, and I sincerely hope that there is no genetic link.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

Thank you, hope your well too. 

I got bloods taken and now sent off for testing. Told it will take a couple of months for results. It was difficult having to relive what I had to go through with regards to original diagnosis/treatment but also had to discuss what I would do if test comes back positive. It was brutal. 

I am really unhappy that this wasn't done when first diagnosed. I feel let down by the NHS.

I'm hoping for a negative result, not sure what I'd do if positive or inconclusive. 

Also wondering how many others have fallen through the cracks and could be completely oblivious to potential danger. 

xx

Hi Magpiemaggie,

You're the first person that I've heard of this happening to, but no doubt there are others. I was offered this straight after diagnosis, but my daughter didn't want to know. She said that she would rather take her chances, than live under a perpetual cloud. She does check herself routinely though. There is nothing much that you can do if positive, apart from ensuring that your family have regular monitoring.

Here's hoping that you don't have to face that problem and that you get a negative result.

Keeping my fingers crossed for you.

Kind regards,

Jolamine xx

Hi Jolamine

I've met with my breast consultant, who says the policy to offer genetic testing to those diagnosed with bilateral cancer has been in there for years.

We had a discussion about breast cancer in the family but told theirs don't count as they were diagnosed post menopause.

I had blood taken and sent to genetics and should hear back in two months time. 

Hi Magpiemaggie,

I am glad to hear that your genetic testing has been done at last. Why this was overlooked initially, beats me. I expect that this means more anxiety while waiting for the results, but I hope that it doesn't unearth anything untoward.

Fingers crossed!

Please keep in touch and let us know when you discover the outcome. We are always here for you.

Kind regards,

Jolamine xx

Thanks Jolamine 

I'm not anxious just angry. The conversation with the consultant focused on the bilateral cancer and the different cancers in both, but they thought I was post menopausal at the time of diagnosis, which I wasn't. So wrong data and lack of continuity of care is to blame.

Its just a waiting game now. I will update once results are in. xx