Mastectomy after having all treatment

Life after a breast cancer diagnosis Coping with fear and anxiety
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I hope this finds you all doing well.

I’m in a bit of rare situation I think and could do with some advice.

In 2018 I had Lobular breast cancer, I had 2 lumpectomies but after the 2nd operation which was due to not having clear margins, my breast was 2 cups smaller than my good breast. The breast care nurse suggested reconstruction so I had a perforated flap operation first which failed, this was followed by 3 lipografting procedures which also failed, so now I’m left with a much smaller breast.

After my last lipografting procedure in August 2024, I decided I wanted to stop having operations and just get on with my life with my smaller breast, after all, it had been 7 years.

In November 2024 I began to get lumps in my breast, went to the clinic, after mammogram, scan and biopsy, the results said I had fat necrosis and quite a few cysts. This happened again in February and April due to more lumps, the last 2 appointments I couldn’t have a mammogram because you have to wait 6 months. This has caused a lot of worry each time as you can imagine.

At each visit to the clinic I had said I wished I’d had a mastectomy which was offered at the start of treatment. It was suggested I looked into having a mastectomy although I might have to talk to a psychiatrist to make sure it was the right thing for me. I dismissed these suggestions until my last visit last month. The breast specialist was discussing this with me and I said my breast is so lumpy that I am not sure what’s been checked anymore, she also explained to me there is a slight possibility that a lump could appear in the same area that had already been tested and I either miss it as a new lump or it’s deeper and I don’t even feel it. This will obviously play on my mind and the specialist explained to me that my GP could refer me for a mastectomy. I’ve seen my GP, she totally understood my concerns and agreed a mastectomy could be a good option at this stage. So I have had a couple of weeks to think about this with my husband and we decided to get referred.

Sorry for the long post but thought it’s important to understand what I had already been through and why I’m concerned, especially as I had Lobular cancer which is hard to find.

My questions are:

Is it even possible to have a mastectomy when not currently having cancer, hopefully? :crossed_fingers:

Has anybody else been in my situation and had a mastectomy?

Thank you for any help and advice you can provide.

Sue

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Hello Sue
I am not in the same position as you but from what I have read elsewhere my understanding is that if your GP and consultant both think a mastectomy is the right option for you then you should be able to have one as a preventative rather than curative measure. However I would suggest you talk to the breast cancer now nurses for clarity.
I wish you all the very best.
Xx

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Thank you so much for your quick response.

Its such a drastic step to take but I’ve been worrying about recurrence for 8 years now. My cousin was diagnosed with the same cancer as me, stage 2 as well, she opted for a mastectomy because she knew what I had gone through and as she has said, she’s had cancer for 2 months and now it’s gone, no more worries for that breast but here I am 8 years on still worrying.

I am so worried I’ll miss a lump, my breast has a lot of cysts, my last lump was 5 cysts bunched together. My breast also has a lot of fat necrosis so it’s really difficult to work out what’s what. My breast looks ugly now, still small and I feel at risk of cancer forming without my knowledge so is such a worry.

I don’t want to put off anyone having the same options as I did though because we are all different, our cancers are different and will effect us differently.

Take care x

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Hello @SueDerb

Wow you have certainly been through the wars. You sound incredibly stoical to me

I started my breast cancer journey with a lobular tumour which was mostly occult on mammogram and u/s. A 1 cm lump became 4.5cm at initial lumpectomy and I was offered a second lumpectomy. I declined and went for a mastectomy at that stage, and never regretted it as there were lots of satellite lesions in the rest of the breast at second histology. I asked for a second, prophylactic mastectomy at that stage, but was refused.

Fast forward 11 years and I got a second primary in the other breast, this time ductal/herceptin pos. Again, with no discussion, they wanted to do a lumpectomy. I think it’s the only time I’ve yelled at a doctor “no way, I’m having a mastectomy”. I got it and have never regretted the decision. I always felt if I had got my wish for a prophylactic mastectomy in the first place it would have saved me months/years more of chemotherapy, herceptin and zolendronic acid infusions. That was all 6 years ago, and I remain fit and well.

As far as aesthetics go, if you don’t have a reconstruction, the prosthetic breast forms are really good and easy to match with a remaining breast (and even easier to match up now with a bilateral mastectomy).

Prophylactic mastectomies are common when women have BRCA gene mutations. I just can’t understand why the breast consultant would want a referral from your gp to proceed with a mastectomy which had already been offered to you a long time earlier!!

I hope things go much more smoothly for you from here on. Wishing you all the best and sending loads of hugs

Eily :heart::heart::heart:

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Hi @SueDerb
I’m not in the same situation as you but I am having a risk reducing second mastectomy despite not having cancer in it (that I know of).
I have already had cancer twice now, first time lumpectomy, second time mastectomy. They did genetic testing the first time round as have a family history of breast cancer too. It came back negative for brca and palb genes. They are redoing it again now they know about new genes in case but got to wait some time for the results.

In the meantime have managed to get the surgeon to agree to do a risk reducing second mastectomy due to still being high risk for a reoccurrence as well as a strong family history and already had it twice myself.

I hope that helps and reassures that providing the surgeon is on side for you to have a mastectomy despite no disease then i dont see why you can’t.
Hope all goes well and you get the outcome you want.

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I haven’t been in your situation but after the going on you have had with all the failed procedures all the time that must have taken from your life despite anything else and is still taking from the sound of it then it would sound very reasonable to me to have it done . I’m sure any Psychiatrist if you have to see one would be able to understand that. I have also experienced fat necrosis - just the once but finding a new lump was scary and for a few days there was also a burning pain right across my breast into my axilla and down my arm and I wouldn’t fancy experiencing that on multiple occasions and in your position I would also be considering mastectomy . The only thing is that because you don’t have cancer I imagine there might be a wait to get it done on the NHS . Wishing you all the best . Xx

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Hi SueDerb,

Sorry to hear that you have been through so much. The constant worry must be so debilitating. My situation isn’t the same as yours but three years ago I was due a lumpectomy for a small IDC. The op was cancelled as they re-read all my scans and realised that they had missed more areas of DCIS. The plan changed to a mastectomy and I’ve never regretted it.

I have a family member who has had lobular BC and, as you say, it doesn’t always show up on mammograms. She too had a mastectomy and reconstruction.

I’ve stayed flat as I didn’t want any more surgery and it’s been absolutely fine. The recovery from a mastectomy can be quite quick. You’re generally in and out in a day and up and about very fast. I walked my dog the afternoon after my op and felt fine.

Whilst we always have to be vigilant, it’s very reassuring that after a mastectomy almost all of the breast tissue is removed. It has helped give me peace of mind.

Good luck with the surgery if you go ahead.
Frances x

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Thank you so much for your lovely messages.

It has been a tough few years but I know there’s so many more ladies on here that have been through so much more than me and that’s why I feel guilty taking up the time of the breast care staff every time I visit with another lump, although they have all been very supportive and said I did the right thing.

I have an appointment on the 19th May with the clinic to discuss my options so I’m hoping when I leave I will be satisfied with the next steps, if any.

When I was diagnosed I was really strong, supporting family members and just getting on with it but I honestly thought once my first lumpectomy was finished I just had 23 sessions of radiotherapy and that was it pretty much, I never expected to be worrying more now than I did then and I feel like I’m being a nuisance and should just be grateful I’m still here and I really am.

I know I will have a long wait for any treatment/mastectomy but it’s better than having more years of what I’ve put my husband through :cry:.

Anyway, thank you again for your support. I really hope your paths are all go well.

Sending much love x

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