Hi all, I just wondered if anyone had any experience with an elective mastectomy and reconstruction?
what the protocol is? Presumably this would need to be paid privately? Not nhs?
Sadly I lost my mum to breast cancer 5 years ago, so I know my chances are higher.
many information will be greatly appreciated.
In my experience, if genetic testing shows that you have one or more of certain gene mutations that increase your probability of getting breast cancer, you become eligible to have the surgery on the NHS.
Hi Amelia, I am so sorry to hear about your mum and understand your concerns.
You could ask your GP to refer you to genetics so they can work out your risk of breast cancer. You may be eligible for screening. I am not sure what the percentage risk of breast cancer over a lifetime is needed for elective surgery. You can go for private genetic advice too of course. I'd probably start with finding out your personal risk through genetics as they will use your entire family history. They can then advise about genetic testing or not too.
It's not a question of percentage over a lifetime, it's whether or not the gene mutation is present which opens the door to doing it on the NHS. As far as I know, the NHS only offers this genetic testing when they feel that the family history "justifies" it, but having one relative, even a parent, with cancer, does not seem to fall into that category.
Since Amelia says she has been refused, I too think she could try to go privately for the test. Then, if the test does show a mutation, the NHS will in all likelihood agree to do the mastecomies for her, especially if she's above a certain age, but sometimes they would do it earlier. (If it comes to that they will no doubt explain how they want to go about it.)
I think they can calculate lifetime risk if the affected person in the family is gene negative/ positive. Private genetic testing is a bit of a minefield, especially as it doesn't always come with appropriate counselling and the reports are not always well interpreted. Some look at the whole gene, some for specific gene alterations. If there is a BRCA or PALB mutation they will offer mastectomies, but it may also be possible if the family history is significant enough on its own.
Agree for peace of mind that you should go privately but. Your mum would’ve been genetically tested herself, if this came back negative, then the likelihood is that you would also be negative. I wonder if that’s why they refused you? I was advised that if I came back positive they would test all female members of my family over the age of 18. I didn’t I was negative despite having had breast cancer twice. Just the way it is sometimes x
Yes, I know for a fact that they do calculations if you are shown to have a mutation. I found out that what is done on the NHS can be open to issues too. When I had mine done, I was given certain probabilities for myself and my family. This was done by someone who was not an expert in the field but was authorised, and she made some mistakes that were only spotted three months later when I finally saw a doctor whose specialty was genetics. The practical implications for me were the same, but the changes in data rattled some people in the family.
You are right in voicing the concern over the private sector though; I can easily see how this could be an opening for issues, and I think people need to be very careful with that, but when it's someone's only way to proceed and they really want to know, they may feel they have no choice.
Hi, my mum and sister had bc. I was referred to family history clinic and without genetic testing have been given a 1 in 3 risk factor which makes me eligible for risk reducing surgery and reconstruction on the nhs. You need to ask your gp to refer you to a specialist family history clinic to be assessed. I hope this helps.