Should I have a preventive double mastectomy?

[TheRealMummyPig]

I’m 45 and on HRT after going through early menopause. My menopause symptoms were horrific and I never want to experience that again. I have two children age 10 and 7. We have a strong family history of breast cancer with my mum diagnosed in her 60s with ER/PR/HER + breast cancer. My Mum’s sister was also diagnosed at the same age and all of my mums cousins and her aunt on same side have had BC including one who died in her 30s. I also have an uncle on dad’s side who died of prostate cancer in his 40s. I tested negative for the BRCA genes and was recommended annual mammograms with contrast. I had one a few years ago that resulted in a biopsy that was benign but very stressful.

I am really considering a double preventative mastectomy to help relieve the annual anxiety of mammograms as I feel it’s only a matter of time until I get BC too. I also can’t imagine having to come off HRT if I ever got BC. My symptoms were so debilitating. I know it’s a big decision to make. (I’d be paying privately obviously and would have to find a surgeon willing to perform it).

I just don’t know if I’m being too dramatic considering it.

I’m 41 with BC and a 7 year old, chemo while parenting is a rollercoaster. I’d do anything to prevent that. I’ve had a single mastectomy before chemo which I recovered from easily.

I feel for you op.As someone's who's dm had primary peritoneal cancer stage 4 which returned in the ovaries and is treated as ovarian cancer.
Dm had the brca test which was negative but with df dying of prostate cancer and several bowel cancer cases in the family my dsis and myself were considering the thought of having double mastectomy and oophorectomy if dm was positive for the gene.
Dm was shocked but we would both rather have had less stress awaiting the almost inevitable in our minds.

I know someone who did just that. She quite a high percentage chance though. She then went on to have ovaries removed.

She had no regrets.

You tested negative for the gene though, you say? So surely that means you have the same chance as the t
rest of us?

Due to so many cases of BC in family, my risk is apparently higher than general population but not as high as BRCA gene

That must be incredibly tough @itchyhand I’m so sorry you have to go through that. That must have been a relief that at least the surgery recovery was okay for you.

Have you reduced/eliminated all of the other known cancer risks? Smoking, overweight, alcohol being the most significant ones. I’ve had bc and a mastectomy, chemo, radio etc and the mastectomy was the least of it. However, you may want reconstruction, which is likely to be costly. I would get several opinions and weigh up the pros & cons thoroughly. Genetics is only a small risk factor - the lifestyle ones are at least as risky.

You need to talk to a specialist, it might not be as ‘simple’ as a removal, I have cancer now and my reoccurrence risk is no different between lumpectomy and mastectomy. It’s complex. What genetic testing has been carried out to confirm no BRCA but an increased risk? I think it’s right you’re exploring it, but jumping to solutions before fully understanding the risk. So I’d seek some more robust support before going too far down the mastectomy consideration.

I’m surprised you’re getting HRT if they’ve said you’re at an increased risk of hormone positive breast cancer. Also, have you had your breast density checked? My lump didn’t show on a mammogram, my breast tissue is still dense, yours might not be if you’re menopausal, but I’d double check. They should know from the ultrasound you had a biopsy.

Indeed, exercise will reduce my reoccurrence risk by 30-50%! Far more than a mastectomy according to my risk profile/cancer type.

Definitely don’t have any of those other risks. Don’t smoke, rarely drink, not overweight, exercise most days.

I think the decision is very personal but understand why you might want to go for it. You dont mention whether you are considering reconstruction so just in case I suggest you research Breast Implant Illness (BII) before making any decisions.

Breast tissue not dense. Can’t remember what testing I had but it was thorough and no risk genetically however that’s not the same as no family history which is significant.
I went on HRT for early menopause due to horrific symptoms plus long term bone/brain/heart health. No one has talked about coming off due to my family history. From what I understand, mastectomy reduces risk by 95% which is pretty reassuring.

You tested negative for the gene...

I don’t really understand OP, how you can be negative for genetic risk but also at an increased risk, I’m not sure they’d even offer preventive surgery in those circumstances. Your worries are very valid, but I think you need to talk to a professional who can give you a more accurate picture of your risk profile, it’s something they can mathematically quantify, to weigh up risk and benefit of intervention.

Ironically, mammograms increase your risk of cancer. They don’t actually do them in some countries, Sweden for a start I think.

You could listen to some of the podcasts hosted by Chris Wark of Chris Beat Cancer. He has interviewed many breast cancer survivors and also Dr Kirsty Funk who is a breast cancer specialist and majors on all the factors you can manage to help prevention. It’s all the stuff we know matters like reduce your weight, do exercise, eat a very clean diet meaning lots of fruit and vegetables, minimal dairy (ideally none) and minimal meat (red, white etc - maybe once pcm) - a lot of us think we have a healthy diet when realistically we don’t when you look at some of the very deep research in this area

I’m BRCA1 and I’ve had a double mastectomy. If you’re going private, I would recommend the surgeon Professor Kefah Mokbel (Princess Grace Hospital London). He is amazing. Indeed, I think it could be worth you going to him for a consultation just to talk about whether he would recommend it for you. I know that may seem like Turkey’s voting for Christmas, but I really don’t think he would recommend the surgery unless he really thought you needed it. He has a very busy practice so wouldn’t need to drum up the business. Including reconstruction at the time, which you can do for preventative, this would end up costing about 40 K +

Having a first degree relative with BC doubles your risk, regardless of genetic testing outcome.

@TheRealMummyPig but what is the original risk? Honestly OP I don’t know why you’re talking to MN and not a professional. I’m on my way to chemo, it’s fucking shit and I fucking hate my life right now so yes I’d have got a double mastectomy if a medical professional told me what my relative risk was if the surgery would have dramatically reduced it, not if a few women on MN told me to. This is not a trivial decision, we don’t know your medical history, your risk profile, or indeed you as a person. We can’t answer this for you, what have your medical professionals said?

Thank you so much @curious79i will check out your recommendations 😊

“Doubling risk” sounds like a lot but if the original risk is 1%, you’re still only looking at 2%. A factoid like that means nothing without context.

I’m so very sorry, that sounds utterly horrific. It’s certainly not a trivial decision. It’s the biggest decision of my life so far.
I think my lifetime risk is just under 15% which is obviously low compared to BRCA gene people. My Specialist recommended to have annual MRI or mammogram with contrast which I’ve been doing for 4 years and just feels like a waiting game.

Sorry for getting snippy, bad day (already!) I’m glad they’ve offered MRI. 15% I’d probably do it but I am very biased lol. I’m assuming you’re looking into privately, I’d be interested if the NHS would offer it, only because if it was something the NHS would offer I’d assume it was worth doing considering they need to be more constrained. Have you had opinions both privately and within the NHS?

I can't add much here.. I'm being treated for breast cancer but it's not the hormonal type and they don't think it's genetic and I don't have any close relatives who had it..But I certainly understand your feelings OP. I'm on Facebook groups about it and they call it scanxiety , the waiting for scan results which for those in this position must be horrible. There's also the risk that mammogram won't pick it up. That seems to be a big issue for some. I totally get where you're coming from OP..Where you go now though I can't help or advise.. But do consider it carefully.. Don't jump into it.

As I understand it, the BRCA testing only tests for known mutations to the relevant gene. When I was screened, I was tested for just one possible mutation (the known one that affects my family). The first person to have screening in my family was tested for all known potentially harmful BRCA mutations because they didn’t know which one they were looking for. However, she was told that there could be others (on one of the BRCA genes or another) that haven’t yet been linked to an increased risk of cancer. Perhaps, therefore, it’s possible you are affected by an as-yet unknown genetic risk.

I know that doesn’t answer your mastectomy question but it might be an issue to discuss with a medical professional (which I am not).

@TheRealMummyPig

You need much more information to help make a really well-informed decision that is right for you, especially as you are so young with young children.

Although to some, a 15% lifetime risk, may not seem high, your current specialist is validating your high-risk status by ordering the most advanced scans available.

Under National Institute for Health and Care Excellence (NICE) guidelines, annual contrast-enhanced MRI is strictly reserved for women in the high risk category or those with suspected high-penetrance genetic mutations.

Your decision to switch from a surveillance strategy to a preventative surgical strategy may, very well, be worth pursuing.

You could ask your current clinician/or your own GP, for a direct referral to a consultant breast oncoplastic surgeon to discuss a bilateral prophylactic mastectomy.

When you have more information this hugely difficult decision may become more apparent.

Any decision will be entirely within your own remit then, but at least you'll have all the facts.

Wishing you the very best @TheRealMummyPig 🌸

I think one of the things to consider first is whether you would want reconstruction.

A simple bilateral mastectomy is a relatively straightforward procedure. If you have implant reconstruction then you’re looking at potentially needing the implants replaced every 10-15 years. If you have autologous flap reconstruction then it’s a much bigger surgery and you may well need several further small procedures to get a good final result.

All of these options are different in terms of risk, recovery time and cost if going private.

If you don't carry the. BRAC gene I think that's overkill. I would just ensure you continue to be monitored well