Brca1 positive, TNBC, scared, alone

Hi Roses21

Please don't apologise for 'rambling', that's what the community is for

My cancer is not genetic so I can't imagine how that must feel knowing that you need to tell your relatives so that they can get tested if they want to. However, I do understand how difficult it can be to tell those closest to you about a cancer diagnosis. 

I'm hoping that by replying to you and, therefore, 'bumping' your post back to the top of the discussion list others in a similar position to you will step forward and tell you about their experiences.

While you're waiting for replies you could have a look through some of the other posts and reply to any of the posters who you you think might be able to help you further.

Macmillan has this information about the BRCA gene, which you might find helpful, and you could always chat to one of the nurses on the Support Line about how to tell the other members of your family. It's free to call them on 0808 808 0000 and they're available every day from 8am to 8pm.

Wishing you all the best

x

Hi, I think we're in similar boats. I'm 44, brca1 positive and I had one breast removed last month due to an aggressive triple negative breast cancer My hospital won't touch the remaining healthy breast due to covid backlog, even though all I hear is that I'm at such a high risk.. 

Hi, it does sound like we're going through similar things! How are you coping?

I've been to have a seroma drained today, to be told that it's an infection!

Start radiotherapy in a couple of weeks.

I saw my surgeon last week for pathology results (still active cancer but they'd removed it) and he said I could get back in touch in 6 months to talk about the other mastectomy. But now he's said 12 months, 18 months to 2 years and now 6 months! It just makes me feel like he's just pasifying me and will do what he likes! 

Hi roses 21

Im seeing my radiotherapy consultant on Thursday to discuss radio. Apparently its not usually offered to women who've had a mastectomy but my tumour was big(thank u brca) I'm told it may cause my implant reconstruction to fail so at the moment I'm in 2 minds and my head is completely scrambled. I've lost one natural boob so really don't want to lose my new one! And to be fair it's amazing! 

I had seroma too, my surgeon was quite matter of fact and to be fair it did go down within a couple of weeks.

Im keen to get 2nd boob done but apparently it will be next year at the earliest, something that is stressing me out and I'm not a stress person.

I too did chemo, back in Jan for 4 months, hope you got through it OK? Mine shrunk the tumour to nothing.

I'll let you know what they say to me tomorrow? I was expecting a lumpectomy until 9 days before surgery when I got my genetic result, but not having radio has never been mentioned. I'll be having oral chemo too my response to chemo wasnt as good as they originally thought!

I wasn't offered a reconstruction due to radio as surgeon said it can damage implants, but that's left me flat on one side! Which I didn't want!

This would have been the 4th time it been drained. But the nurse brought a different surgeon in who said he wasn't happy it being drained and he would want it ultrasound guided. The other 3 times someone's just stuck a needle in! It amazes me how different Dr's, nurses, surgeons do things so differently!

Why wouldn't they do your other one when they did new one? I've been told I can have both reconstructed next year.

I had chemo in Jan too, for 21 weeks! It was OK, I've felt better but some have it so much worse don't they? I 2as told I'd had a complete response but 3 areas of cancer and some infected lymphs were found in pathology after surgery.

Xx

My hospital haven't doing any preventative surgeries for over a year now, apparently the brca comes under that, even though I've already had a nasty cancer.

It's pretty frightening as I'm told there's a high reoccurance rate in the 1st 2 years.

Until my brca 1 diagnosis I planned for a lumpectomy all along too. My surgical results last week showed no active cancer cells and clear margins. The chemo killed the tumour completely.

For me chemo was gruelly for 6 days then OK for 14,although I was v anaemic.

When I went to surgery there was still a lump but my oncologist thinks it was old scar tissue as it was 12cm at its biggest. It literally grew from nothing to 12cm in the space of 4 months!

Hope today is/has gone well for you

Cheryl xx

Hi Cheryl,

I've sent you an email.

I hope you've had a good day

Xx