60 and been diasnosed TNBC

Hi, there seems to be an increasing number of kadies late 50s to 60 plus being diagnosed with TNBC who don't fit in with the expected target group. Perhaps this is an area for research?? More treatment options are definitely needed in the near future if the recurrence rate us to drop significantly. How do other older ladies feel? Especially if you've been denied genetic testing on the grounds of older age! Told it was just unfortunate but it happens! Sending hugs to everyone.  X

Hi Franchuck

Im feeling bit better today, but think I now have a UTI waiting for gp to call me back. 

Im still in the dark really about TNBC I am hoping on friday I might get more info. My test results seemed to come back in dribs and drabs. 

Xx

Hi Vibby

Thats how I feel too, Breast surgeon, hasnt really said much only its same treatments to start with. Lotsvof ppl with TNBC have chemo first then ops but mine is other way around, probably  because they didnt know full result, mine was 1.6 cm margins now been redone so hoping its clear now.

Sending you big hugs xx

Hi 

I had op first then chemo , but I had to have another op in Oct to clear margins just waiting for radio . They don’t scan unless you have lymph node involvement and Genetic testing up to the age of 60 on NHS . Good luck and love to you all x

Hi Chaka I think it's certainly something that needs improving. Generally people are living longer and are  fitter than in previous years & the age limit for genetic testing seems to be a little out of date. I imagine though that like everything it is all money lead & therefore I can't see any changes coming soon. For my daughter to get a private test done the cost is about £1400 which is a lot. 

Franchuk 

It's very frustrating isn't it. The waiting has been the worst thing for me. I hope you aren't feeling too bad . Xx

I had know idea they wouldn't offer genetic testing over 60 !

Im bang on 60, and was offered it immediately. 

Still waiting on a treatment plan,  hadn't even thought about more than 2 op, getting clear margins etc. 

There was no mention of radiotherapy either. But some seem to have all 3.

Guessing there must be individual reasons,  but struggling for understanding currently. 

I was 60 when diagnosed so just managed to get genetic testing on NHS but I believe there’s a Company in USA called Color that does private genetic testing for £300.

Since finding out I have PALB2 mutation almost all my wider family, including my daughter, have got the mutation too but feel glad they have the knowledge and are able to have preventative surgery.  

Im over 2 years NED now and although it is a horrendously worrying time at diagnosis, it gets better when you start treatment and I found all the surgeries and the chemo very doable and hope you have a similar experience x

Hi Wobbly1

Did you have surgery first , then chemo ,radio ? 

Hi Bonny, yes had lumpectomy first, then chemo but no rads as found out I had genetic mutation so went on to have DMX (and also ovaries and fallopians removed).  I was concerned at not having dmx but surgeon explained nothing to radiate.