I still have to decide if I want to take the test. I am 30 and was diagnosed with triple negative BC in August this year. I have no history of cancer in my family apart from a great nan and great aunt (different sides of the family) diagnosed with BC both in their 80s.
I am pretty sure I will have the test done as I would rather know and be able to have the option of further surgery to help reduce the risks.
I don’t have children yet so would not want ovary op yet but would go for the MX as I am only having a WLE in the new year. I wish I had the option of testing earlier so I could have had all the facts and test results during my treatment. I was told they wouldn’t test me until April so wouldn’t get the results until July. I just want to get the resuts asap to give me time to deal with it if I am positive.
So many things to think/ worry about it is hard to process sometimes.
Kate that’s annoying they won’t tetvyou before April… We actually have fast track testing agreement set up for people where it would make a difference to treatment… Normally takes 4 months to get results but I think they can do it within a few weeks for those whose treatment is dependant in the test results.
As for not even offering the test until April what s their reasoning for this? Our ladies can get a pretty quick generic appointment with in a week or so for counselling and taking bloods.
I suppose one thing to think about is if you are found to carry a gene what surgery would you have, if no gene change was found what would you do and if a change of unknown significance (called an unknown variant UV) what would you choose.
Was it your onc that said he wouldn’t test you yet or genetics? If it’s your onc I’d ask for a genetic referral either through him, your surgeon or gp… I often have problems with docs telling patient they will get tested when they won’t but they will be assessed… Some docs like to think they know everything about everything but sometimes they just don’t know it all!
Thanks Lulu, I assume you would in this area as you are so knowledgable!
It was the genetics dept at my local NHS hospital (my treatment is private, I ma not sure if I can fast track through a private hospital?)
I would throw everything I could at it if I was positive! I just don’t want to go through surgery twice and ruin my summer waiting for the results and recovering if more surgery was required.
The reason for the long wait is because she said that the test isn’t s decision to take lightly and she wants to see how I feel about it after completing my treatment which should end in March/ April time.
I see my onc again tomorrow for my last chemo (Yippee!!) so will speak to him about it then.
I also wondered if you can opt to keep your nipples if you chose to have a bilateral MX with recon? It seems silly but my biggest concern is being nippleless!!
Hi yeah I’m a genetic BCN… We don’t put a time limit on it but we wouldn’t normally do it on th first visit but will do if somebody is fast tracked…
If you are really keen to do it sooner then call them back and make an appointment sooner… It’s your life so you can demand to have it sooner if you wish… It is good to think about it thoroughly though as often your reaction will be different than you expect either way… But I don’t think waiting 4 months will make it any different to 4 weeks… It will still uptake around 4 months tonget the results…
Your pribpvate hospital might be able to organise it quicker of genetics are still dragging their heels… Have a word with them and see I know others have the test through private insurance.