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Original poster

Can you have a mastectomy without cancer present?

28 replies

Btjdkfnn · 15/02/2023 18:07

Just that really. Is that totally unacceptable in the UK?

my mum had bc and now about 20 mets and will die of it if the treatment doesn’t kill her first.

i had a mammogram and ultrasound. I have a cyst, which is at this stage just an irritation. I have to be careful of anyone pressing against it. But I don’t know why I have to have these 2 useless aggravating boobs (post meno). I would pay for the operation and it would save the NHS giving me any mammograms (I paid for the one I just had as I’m not yet 50 but post meno with a boob irritating). So I don’t see it adversely affecting anyone else/the NHS. The mastectomy (just going flat, no recon) was the easiest part of my mum’s treatment. I’d like to eliminate the risk of bc and get rid of the aggravation. I have no worries about losing boob/s. I am not typically feminine and I just can’t really see the point of waiting until I probably do develop cancer and giving it the chance to spread. My mum had 2 different breast cancers that both had to be removed.

thanks for any advice

OP posts:
RachKen · 15/02/2023 18:11

Yes you can. I worked with a girl who's mum had BC and died young from it so her and her sisters were checked for the gene I think it was? They were checked fir something anyway! The eldest had it and the other 2 never so the eldest decided to have a mastectomy.

RachKen · 15/02/2023 18:12

That was on the NHS!

StandUpForYourRights · 15/02/2023 18:14

If your mums tumour is due to BRCA1/2 and you have inherited the alterations, yes prophylactic mastectomy is available on the NHS as is oophrectomy (removal of ovaries). So genetic family history referral and blood tests first.

Original poster
Btjdkfnn · 15/02/2023 18:16

Neither of my mum’s tumours were due to brca and I know I don’t have that gene.

OP posts:
Original poster
Btjdkfnn · 15/02/2023 18:17

Sorry I should have put that in the op

OP posts:
StandUpForYourRights · 15/02/2023 18:20

Then I suspect you would have to go privately unless there was some evidence you are likely to inherit via another means. E.g li fraumeni or other cancer predisposition disorder.

Caneloalvarez · 15/02/2023 18:24

I don’t have the answer but your post really resonated with me. My mum also had breast cancer a few years ago and we don’t seem to have the gene. But I don’t want to just wait around and wait and see whether I’ll develop breast cancer. If there was an option to have an elective mastectomy I would do it!

Bluebellbike · 15/02/2023 18:27

I had a bilateral mastectomy but it was after having breast cancer and a biopsy to remove the tumour. It was a Ductal Carcinoma In Situ and had not spread. My lymph nodes were clear. I had radiotherapy though. Every time I went for a check up more lumps were found and I had more biopsies. Thankfully they were all non malignant. It was so stressful I asked for an elective bi lateral mastectomy. I had to have a psychological assessment but it was allowed on the NHS. I was offered reconstruction but didn't want it. I am happily flat. My breast cancer wasn't hereditary.

Original poster
Btjdkfnn · 15/02/2023 18:30

I would be more than willing to pay for it privately, I am not sure whether a surgeon would actually be willing to do it though?

OP posts:
Original poster
Btjdkfnn · 15/02/2023 18:33

Bluebellbike · 15/02/2023 18:27

I had a bilateral mastectomy but it was after having breast cancer and a biopsy to remove the tumour. It was a Ductal Carcinoma In Situ and had not spread. My lymph nodes were clear. I had radiotherapy though. Every time I went for a check up more lumps were found and I had more biopsies. Thankfully they were all non malignant. It was so stressful I asked for an elective bi lateral mastectomy. I had to have a psychological assessment but it was allowed on the NHS. I was offered reconstruction but didn't want it. I am happily flat. My breast cancer wasn't hereditary.

Can I ask whether you had the bilateral mastectomy at the same time or two separate operations? I remember when my mum had a single mastectomy that she had to be careful with that side, but it was ok because her other side was almost untouched (little lumpectomy there). Although on the mastectomy side, she’d had some lymph nodes out as well as they contained cancer.

OP posts:
Original poster
Btjdkfnn · 15/02/2023 18:39

Caneloalvarez · 15/02/2023 18:24

I don’t have the answer but your post really resonated with me. My mum also had breast cancer a few years ago and we don’t seem to have the gene. But I don’t want to just wait around and wait and see whether I’ll develop breast cancer. If there was an option to have an elective mastectomy I would do it!

This is it - 1 in 7 women will get bc anyway, so with a family history as well, even if not clearly genetic, why would I risk it?

OP posts:
nocoolnamesleft · 15/02/2023 18:41

I hate to sound cynical, but surely any private surgeon prepared to perform bilateral mastectomy for trans men would also have to be prepared to perform one to help a woman whose mental health is being impacted by fear of breast cancer? Wouldn't they?

NeverDropYourMooncup · 15/02/2023 18:47

Yes, you will be able to have a prophylactic/preventive mastectomy, with or without reconstruction. It's a perfectly reasonable thing to have and you shouldn't have much difficulty in finding a surgeon who will do it, especially as you're opting for private treatment.

I hope that your Mum is kept as comfortable as possible and that you are being well supported throughout this period.Flowers

Booblessbeauty · 15/02/2023 18:56

please be aware of the reality

One reasonable neat scar, but one twisted, swollen, flabby ugly one. There is no rhyme or reason for this, both done together, one worked, one didn't

  • further surgery needed, but cant happen yet

Cant wear false boobs because of the complications around the scar

A week in hospital in horrendous pain - the worst Ive felt since child birth

Loss of strength and range of movement in both arms, permanent

Nerve damage on one side

On the plus side -

no bra ever needed again, no boobs flapping in my face, less aggro from men, a definite plus!

BUT - I could in fact still get breast cancer in the scar. It isnt possible to get rid of all breast tissue

Testng123 · 15/02/2023 19:00

Angelina Jolie had a prophylactic double mastectomy. She didn't have cancer but has the BRCA1 gene.

Teeshirt · 15/02/2023 19:09

I did, but I’d already had breast cancer in the other breast. My cancer is radio occult, so no mammogram or ultrasound, even MRI, could see it -not because it was small -it was actually extensive -but because of the type of cancer it was. That was my reasoning. It would make no difference the number of scans I could have if they couldn’t see anything. I had a psychological assessment and it was done on the NHS.

Teeshirt · 15/02/2023 19:14

NeverDropYourMooncup · 15/02/2023 18:47

Yes, you will be able to have a prophylactic/preventive mastectomy, with or without reconstruction. It's a perfectly reasonable thing to have and you shouldn't have much difficulty in finding a surgeon who will do it, especially as you're opting for private treatment.

I hope that your Mum is kept as comfortable as possible and that you are being well supported throughout this period.Flowers

I don’t think this is true -not in the U.K. Surgeons are wary of being seen to “mutilate” people. Even people who have had cancer in one breast often can’t get the other breast removed, and it’s not generally allowed. Perhaps there’s more leeway in the private sector.

Bluebellbike · 15/02/2023 19:25

Btjdkfnn · 15/02/2023 18:33

Can I ask whether you had the bilateral mastectomy at the same time or two separate operations? I remember when my mum had a single mastectomy that she had to be careful with that side, but it was ok because her other side was almost untouched (little lumpectomy there). Although on the mastectomy side, she’d had some lymph nodes out as well as they contained cancer.

Show quote history

I initially had a biopsy to remove the DCIS in my left breast, and removal of the sentinel lymph node on the left followed by radiotherapy on the left breast.
I had the bilateral mastectomy 3 years later, after 3 annual check ups and 3 more biopsies. Hope that answers?

Bluebellbike · 15/02/2023 19:28

Bluebellbike · 15/02/2023 19:25

I initially had a biopsy to remove the DCIS in my left breast, and removal of the sentinel lymph node on the left followed by radiotherapy on the left breast.
I had the bilateral mastectomy 3 years later, after 3 annual check ups and 3 more biopsies. Hope that answers?

Show quote history

To be clear, my lump was pre cancerous and the lymph nodes were clear. I had the radiotherapy as a belt and braces thing just to make sure. So technically I did not have breast cancer.

Original poster
Btjdkfnn · 15/02/2023 19:37

Booblessbeauty · 15/02/2023 18:56

please be aware of the reality

One reasonable neat scar, but one twisted, swollen, flabby ugly one. There is no rhyme or reason for this, both done together, one worked, one didn't

  • further surgery needed, but cant happen yet

Cant wear false boobs because of the complications around the scar

A week in hospital in horrendous pain - the worst Ive felt since child birth

Loss of strength and range of movement in both arms, permanent

Nerve damage on one side

On the plus side -

no bra ever needed again, no boobs flapping in my face, less aggro from men, a definite plus!

BUT - I could in fact still get breast cancer in the scar. It isnt possible to get rid of all breast tissue

Thanks very much for this info - I was not aware of a lot of it. I would not want a false one anyway / my mum wore hers for a bit then didn’t bother anymore. But clearly pain and nerve damage is a big problem.

OP posts:
Original poster
Btjdkfnn · 15/02/2023 19:38

Also thanks very much bluebell for that info

OP posts:
Original poster
Btjdkfnn · 15/02/2023 19:39

Teeshirt · 15/02/2023 19:14

I don’t think this is true -not in the U.K. Surgeons are wary of being seen to “mutilate” people. Even people who have had cancer in one breast often can’t get the other breast removed, and it’s not generally allowed. Perhaps there’s more leeway in the private sector.

Show quote history

That’s what I was concerned about - it being seen as mutilation.

OP posts:
dementedpixie · 15/02/2023 19:48

Tell them you are trans and you want 'top surgery'!

ScrollingLeaves · 15/02/2023 19:52

I am sure they might.

Young women who want to be men have mastectomies of perfectly healthy breasts.

Eatentoomanyroses · 15/02/2023 19:56

There’s a surgeon called Lee Martin who is very knowledgeable in this field. He does NHS and private work.