Can I insist on a double mastectomy

Hi Purpleauty (Sharon)

Thanks for contacting Macmillan Cancer Support and welcome to the online community.

It sounds like an overwhelming situation for you.

The feeling of uncertainty and of the unknown can be frightening.

Unfortunately, Macmillan are not directly part of the NHS so have no access to patients records that would allow us to offer you more direct information about your individual care.

We have some general information about risk -reducing breast surgery.

However, risk-reducing breast surgery (removal of health breast) is only appropriate for a small number of people with a high risk. A high risk means a 3 in 10 or greater chance of getting breast cancer in their lifetime.

People may also be offered the risk reducing surgery if there is a strong family history of breast or ovarian (or both) and if they have a positive gene mutation. These include BRCA1, BRCA2, TP53, PTEN and ATM.

As your team have access to your records, they are best placed to offer you the correct advice. We would strongly encourage you to chat through this further with your team.

Equally, it’s important to let your treatment team know about all your concerns. This is so they can give you the best possible support.

If you went ahead with the surgery, you may find this Breast mastectomy recovery tracker helps guide you on what to expect and within what timeframes (click on the breast mastectomy link for the full leaflet).

You could consider getting a second opinion that would allow you to speak to another consultant. Your GP or current consultant can refer you for this. Unfortunately, this is unlikely to happen before your appointment on Friday.

We have a supportive breast cancer group that you may also find helpful.

Breast Cancer Now have a ‘someone like me’ service where you can have the support of someone who has also been through a breast cancer diagnosis and treatment. Some people find the support of others can help.

We are offering free one-on-one counselling with a qualified Bupa therapist, who has been trained in supporting people living with cancer. Do you think this is something you would be interested in? If so, then please ask her click here to make an appointment for a wellbeing assessment.

It may be helpful giving one of our nurses a call directly.  We are always happy to take the time to listen and advise when and if you may need to talk.

We are open 7 days a week from 8am till 8pm. Our number is 0808 808 0000.

I hope this helps.

Please don’t hesitate to get back in touch if you have any more questions.

Annemarie

Cancer Information Nurse Specialist 

Ref: AC

Thank you for all this information.

I will have a look. I know I do not have any of the high risk aspects you are talking about. I deliver therapeutic training myself and can't work with therapists or psychologists. I know what they are doing and I have excceptionally good friends who are pyscotherapists and psychologsts and social workers etc. Right looks like I will have to decide I need gender reasignment surgery. I don't mean to be difficult but it makes no sense and I don't want to jump through these hoops I just want both breast off as simple as that. I might be better to ring. But not that I think that will make any difference. Im not going in for surgery on one. 

I might have a look at the other informatin, but I doubt it will do me any good. I really appreciate your response but its not what I want or need. I would rather not be here.

Hi Purpleauty,

I’m Eileen one of the nurses on the Macmillan Support Line.

I’m sorry the situation you find yourself in is causing you such distress.

We would strongly suggest that you contact your Consultant or Clinical Nurse Specialist/Breast Care Nurse at the hospital to make them aware of the emotional impact the prospect of undergoing a unilateral mastectomy is having on you. They will take this into consideration when planning treatment.

It may help to talk things through with one of our nurses.  We are always happy to talk with you should you wish to call.

We are open 7 days a week from 8am till 8pm. Our number is 0808 808 0000.

I hope this helps.

Please don’t hesitate to get back in touch if you have any more questions.

Eileen

Cancer Information Nurse Specialist

Ref:AP