Peace of Mind Genetic Test

Going through breast cancer treatment Chemotherapy monthly threads
1

Hello all

I saw my consultant last night for him to check my wounds after surgery and take out my drain (he didn’t want to but said my skin was getting sore under the bandages).

I mentioned to him that he had said ‘in passing’ that I should consider having the other breast “done” in the future and asked what he meant.

So he said that he was referring to preventative surgery. I didn’t qualify for the generic test for the faulty gene at the beginning because I was hormone positive but he said that there’s still a 10% change that I could have it so I have the option to pay privately for the test. Then if it’s negative, I have peace of mind, if positive it could set the wheels in motion to take preventive active and I know for my children.

He said it doesn’t need to be now as I need to get through this treatment but to think about it for the future.

What would you do? The costs look to be a couple of grand max but, for some background, there appears to be a cock up from them in the past in 1999 and 2018 as I had the first lump since the former and it changed significantly with pain in 2018. They’ve already launched an investigation and independent review before I’ve even complained. So part of me worries that all their suggestions are trying to mitigate any risk from a potential claim situation. I don’t have the appetite for all that at the moment though as I’m knackered. But, it sounds like in 2018 they’ve missed this, hence the spread to the other side and into the lymph nodes.

x

2

I don’t know if anyone has ever responded to this and it looks to be a few months old but I had steroids today with my chemo so I have energy to spare, and I’ve had extensive genetic counseling and testing and am waiting for even more tests to come back.

Just for the record there are some genes which cause hormonal positive breast cancer. ATM and check2 for one. Even BRCA2! Yes the BRCA’s are more associated with triple negative but hormone cancers can sneak in there, too. For the moderate genes (ATM and check2 are considered those) nothing but monitoring is suggested if no breast cancer diagnosis but if you have one you could probably get a mastectomy with it. And of course your kids would know. That’s why I did it actually. I have girls. It’s scary, I don’t want a gene and I certainly don’t want to pass a gene to them, but I’d rather they know if they have one so they can take whatever precautions are reasonable to not end up with a diagnosis of breast cancer. If you can afford it, it can tell you quite a lot. Shoot if you have something you may even qualify for other treatments not generally given that lessen your chances of recurrences.