To feel terrified and angry?

[Slinkery]

The women in my family are under the wing of a specialist breast cancer clinic, because we have a genetic risk of an aggressive form of BC.

My mum is one of four sisters and they were all strongly advised to have preventative mastectomies in their 30s/40s. My mum and her sister Jane had the surgery and never got breast cancer. The other two sisters didn't have surgery and one of them, Amy, got BC. The other sister died of pancreatic cancer.

Amy has a daughter the same age as me called Laura. Laura has been told to have preventative surgery, because she is at high risk. The clinic fully accept that my mum and Jenny would likely have developed the cancer if she hadn't had the surgery, but they are refusing to offer me, my sisters and Jenny's daughter a preventative mastectomy.

They fully understand and accept that my risk is likely the same as Laura's, but on paper, because mum never got cancer, I don't qualify for the surgery.

I became quite upset and angry in an appointment about this yesterday and was offered therapy to deal with my feelings about it!! I tried to explain that therapy doesn't get rid of my very real risk of getting BC.

They then admitted that if I got breast cancer, they would immediately offer my sisters and Jenny's daughter the mastectomy. So essentially we have to wait for one of us to get it before we get the help.

I'm sorry this is long and a bit complicated, but AIBU??

Wow you poor thing. That's a shitty decision to make. Can you appeal or get a second opinion?

YANBU. This seems absolutely, ludicrously ridiculous. I'm guessing it's about money, and somebody adhering rigidly to the letter of the rules, rather than their spirit. To then offer you therapy is an insult. Have you tried complaining to PALS?

Are they offering you all regular mammograms?

Sorry that should say Jane's daughter at the end, I've written that post in a rush. I hope it makes sense.

I asked the professor yesterday if I can appeal and he said I can't. I haven't spoken to PALS, I wasn't sure how to challenge all of this. I will look into that.

They have offered yearly mammograms, which I am grateful for, but ours is an aggressive cancer and my Aunty Amy developed it between scans. They fully accepted yesterday that the mammograms are only useful for finding the cancer once you have it, so my only hope is that they might catch it early enough for me to survive.

I should add that Laura wants more children and is now worried that if she has a daughter, they could do this exact thing to her if she has the surgery.

My mum and her sisters lost their mum to BC when they were children and it has affected their whole lives, and now they are scared that their daughters will go the same way. We are all very upset. I have a 4 month old son and I feel absolutely sick at the thought of what could happen. It gets the women in our family in their late 30s/early 40s and I turn 30 in Feb. The fact that they are happy to wait for the first of us to get it before the help the rest feels so wrong.

I don’t know the answer to this but I think it’s beyond shite. In terms of cost, surely cancer treatment, inability to work etc etc is far far higher than a preventative mastectomy in the light of an extremely high risk of developing the disease?

In terms of what to do next, can you ask your GP for a referral to another specialist centre? Write to your MP?

to you Slinkery which I know is a bit of a crap offering but I really do feel for you.

I'm in a similar position to you OP. Is it the BRCA1/BRCA2 gene?
I have been offered a blood test/genetic testing from 3 different health boards (I've moved a lot lol) regarding my chance of having it (my dad has the gene but has not had cancer but they still understand the risk).
The blood test has shown I don't have the gene so no further care. My GP referred me with no issues if that helps?

How you looked into how much it would cost to go private?

@DannyWallace They have always explained that it is very similar to BRCA1/2, but it isn't either of those genes. They know it is a specific aggressive gene because it has killed so many women in my family, but they can't test for it because they haven't found it yet. He has said that one day they might find it, but he said that to my mum and her sisters 20 years ago and nothing has yet materialised. So there is no way to determine which of us has the gene.

@thecatneuterer I asked them this and they said that no surgeon would do it. Apparently a surgeon needs to know 100% that my risk is 1/3, and it is only 1/3 if your mum had the cancer.

Another thing:

He explained that Laura's risk is 1/3 (so she qualifies for surgery) and mine is 1/5. I then asked what my risk would be if mum DIDN'T have the surgery and had then never got cancer...he said my risk would still be 1/5! So they are literally working in the presumption that she would never have got it, even though they openly accept she probably would have!

You can always make an official complaint. There will be a set procedure to follow. In writing ask for complaints procedure. Do not let it drop. Their decisions as a public body must be rational, and this clearly isn’t.

The surgeon seems to have a very poor grasp of statistics. There must be a way to appeal this idiocy and PALS will hopefully be able to advise you. I also would not take the surgeon’s word that no one would consider operating on you privately. There are doctors out there who do multiple breast enlargement operations for cosmetic reasons, surely there is someone who understands the choice to have a preventative mastectomy to avoid a real risk of cancer.

That seems absolutely crazy. No words of advise, but just wanted to say your logic is sound and surely common sense would suggest you should be offered the surgery

The surgeon seems to have a very poor grasp of statistics.

My thoughts too. This is seriously fucked up.

Kick up a fuss. Do not just quietly accept it.

Sadly, I've seen way too many times that it's only the people who set their quiet politeness aside and start being pushy and demanding that actually get treated properly.

I have found a complaints email address for the hospital and have sent a complaint. Thank you for your replies I just needed to hear from someone who wasn't a family member and directly affected that I'm not being unreasonable here. It goes against all common sense. It was like talking to a computer, not a person. He just didn't see me as a person at all but a flawed statistic.

Kick up a stir until you are heard. I appreciate that adding this stress on top of everything else is not ideal but don’t give up.