Hi there, just wondering if anyone has had a second masectomy on a healthy breast because they are such a worrier like me!!! BCN said I would have to go privately to get that done, but just wondering if anyone had been ‘lucky’ enough to go that route on the NHS without having the gene? I had a masectomy and reconstruction following diagnosis with a high grade 7cm DCIS 6 wks ago and feel like I am living under a constant cloud. Can’t rest til the other one is off whatever they tell me! Specially as it never showed up on a mammogram, ultrasound or FNA. Would love to hear your experiences.
if you dont have a family history regardless whether you carry a gene or not its very unlikely although not impossible to have a bilateral mx. being a worrier in itself wont indicate a need for an mx, but sometimes they maybe consider it for psychological reasons.
however if you dont have any indicators that would increase your risk your probably more likely to find the side effects, of what might be considered by some as ‘unnecessary’ much more difficult to deal with.
statistically you are probably more likely to be in a car accident than get another bc but the risk of an RTA probably wont stop you getting in a car or crossing roads.
i think if its affecting your mental health they may consider it but it could be a long wait as its not essential surgery…
a wee bit off topic now but can i just ask how your cancer was picked up? was it through clinical exam only?
It was picked up by a core biopsy - they had only done fine needle before that. Thanks for your advice. Still weighing up which way to go forward.
Hi - I had bilat done to reduce anxiety (amongst other things). I had both done at same time after 2 ops failed to get clear margins. No recons. I haven’t had genetic testing but have had history of cancer in close family. Happy to pm if helpful.
Cheers
Maggy
There are guidelines on Nice about genetic bc testing, maybe you’ll find some pointers there! My bc was also confirmed by core biopsy, FNA&Mammo clear. Maybe the helpline could be of help to you? X
Hi!
I had bilateral done because, as I understand it, I was only 25 when diagnosed and although right breast clear my age would suggest that it is genetic and also I’m adoptedso family medical history unknown! As harsh as the system is I think that it just depends which PCT you fall under as to whether the NHS will fund a selective mastectomy!
All the best!
Em
Hi all
Here is the link to the BCC ‘Breast cancer in families’ publication which you may find useful to read:
Our helpline is open 9-5 weekdays and 9-2 Sat on 0808 800 6000 if anyone would like to talk things through with one of our team.
Best wishes
Lucy
Hello Loulou
I had a double mastectomy with a prophylactic mastectomy on one side. The reason was that my tumour was very difficult to detect and was very large by the time it was discovered. I decided I did not want that constant anxiety and it also meant I would have to have two-yearly MRIs with contrast to check the other breast.
I talked to my surgeon and was given this on the NHS although I did have both done at the same time. I have never regretted it.
Would I have paid for it privately? - yes, definitely although it is expensive.
You need to talk to your surgeon. The BCN told me I would have to have psychological testing etc and it was unlikely to be agreed but I had a long talk with my surgeon and onc together and they agreed immediately.
In your case I would stress the difficulty of finding the tumour - that’s what swung it for me.
take care, Elinda
The only thing I’d add is that the greater risk is still on the side that you had cancer. For that reason I wouldn’t delay the rest of your treatment.
Hi there, I have a seroma under my arm following Sentinel Node Biopsy that just won’t seem to shift. Had it drained once and it was 4x4cm. Now it has filled back up again and is uncomfortable. I’ve had it 5 weeks. Will it eventually reabsorb? Thanks Ladies.
Hi lou lou
I had a seroma after my mx in april and had to have it drained for 5 weeks. It still hasn’t gone properly. I showed surgeon on tuesday he tried to drain it but nothing would come out, but since then it seems to be going down on it’s own.
I didn’t have it drained while I was going through chemo in case of infection. It wasn’t sore though just a hard lump.
Everyone heals differently so if your worried speak to your bcn or surgeon
Chris x
I keep bringing this up with my doctors, they’ve given me a 4% chance of recurrance on the other side. They are very reluctant but my surgeon has done them before and said he will basically do whatever I want, although I might have to see a counsellor. It would be on the NHS.