Can I request a double mastectomy and reconstruction?

lllauraaa said:

surely they know what it looks like dont they just by looking at the mammogram scans etc??

The short answer to this is no, they don't. That is why they take samples to send to pathology, which is the only way to find out with certainty. I can think of at least 4 other things that can look exactly like cancer on a scan, all of which are completely harmless. So, while certain appearances do look suspicious, no one can say for sure until the pathology report is back.

Regarding preventative surgery: with your family history, and if you are indeed diagnosed with cancer, you would become eligible for genetic testing. If the test shows a breast-cancer related mutation, they would then offer you a double mastectomy and you can certainly opt to have a reconstruction at the same time, assuming your medical circumstances allow for it.

No one can force you into any treatment you don't want to do. However, a mastectomy does not provide a complete solution in that even once they do it, there could be microscopic cells left behind that no scan can detect. Statistically speaking, for a lot of women survival chances are enhanced by either chemo, radiotherapy or both, depending on the individual case. However, some women opt out of these systemtic treatments, as is their right.

New treatments are coming out all the time. I am aware of two that have come out very recently, one this year, for two particular types of breast cancer. This makes the current overall statistic better than it had ever been, and it keeps improving all the time. Unfortunately there is still a way to go before breast cancer becomes a chronic illness rather than the potentially life-limiting condition that is is now, but women who are disgnosed today stand an even better chance than those who were diagnosed in the past, let alone years ago.

You may still be able to get a double mastectomy with reconstruction on the NHS if you do not have breast cancer, but the path to that would be different, via your GP, based on your anxiety, and will likely lead to counselling as a first step.

I hope your test results all come back clear! 

Hi L

Hi Lllauraa,

Im really sorry you’re in this position, it’s so hard when you’re first diagnosed as there’s so much information to digest, and so much waiting when you just want them to get on and get rid of it. So I 100% understand the drive to want a double mastectomy NOW.  But they really do need the detailed results to know how to best treat you, while they’re probably fairly sure it’s cancerous if they’re saying “suspicious” they can’t know for certain until the biopsy results come back.

The decision of whether to have a mastectomy (single or bilateral) vs a lumpectomy is a separate one to whether you will be recommended chemotherapy and/or radiotherapy, it’s not a case of one or the other. Depending on the biopsy results they may recommend chemotherapy either before or after surgery.  Radiotherapy is normally after surgery to help reduce risk further.  Clearly you can’t be forced to have chemo first even if it is recommended and yes they will still go ahead with surgery if you refuse the chemo, but you should find out about the risks and benefits to you personally before you make that decision. If your drive is to minimise the risk of recurrence that may not mean immediate surgery, however hard that might be to cope with. 

Just to set some expectations on the bilateral mastectomy side, if you have no genetic risk factors you are likely to find it an uphill struggle to persuade the surgeons to remove a healthy breast.  It does happen though, so if that’s what you want be prepared to argue for it consistently and clearly.  If your mum and nana both had breast or ovarian cancer you should ask for genetic screening, that pattern should make you eligible on the NHS.  Even if they do agree, it may not be done in the same operation, that will depend what the rest of your treatment is. My surgeon refused to do a bilateral mastectomy initially as it would have delayed treatment and increased complication risk, so I had a single mastectomy with temporary implant reconstruction initially. I’m now nine months into treatment and have just today had confirmation that the surgeon is willing to do the contralateral mastectomy alongside the permanent reconstruction, but that surgery will not happen until early next year.  I have a very strong family history of breast cancer and a >40% chance of cancer in the other breast, the surgeon said that he will not operate below a 30% risk.  I’m not trying to put you off, but you should be aware that it is not always as simple as just asking.

Take care, I hope you get good results next week.