I’m newly diagnosed with IDC breast cancer in my right breast (luminal B) ER and PR positive and HER negative. I’ve been reading many patient experiences and I feel strongly that a double mastectomy would give me the most long‑term peace of mind.
My medical team is currently recommending a more conservative approach, but emotionally I feel safer removing both breasts, especially because this is a hormone‑driven cancer and I worry about future risk on the other side.
Has anyone here advocated for a double mastectomy in a similar situation? How did you approach the conversation with your doctors, and what helped you get your request taken seriously?
Thank you so much for any guidance.
2 Likes
Hi @paza2026
Good for you, you know what you want. I did too, I was TNBC with BRCA2 so was offered the double rather than just the single. Me too wanted peace of mind. I had implants as not enough fat for 2 reconstruction.
Maybe they will consider if for your wellbeing? Sometimes they do 2 ops one for the immediate and later for the prophylactic. Have a good chat with them and let them know how you are being affected by the situation .
I’m sure the BCNow helpline will also give some advice on how you can approach this with your BC team
Good luck xxxxx
1 Like
Hi and welcome
I’m also oestrogen’ and progesterone positive and HER negative. Small 15mm tumour when measured after surgery.
I went the lumpectomy route, was on hormone therapy which I couldn’t tolerate and have 5 days of radiotherapy. Predict gives me a 93/96 survival score with those treatment options so I’m happy with that. A mastectomy wasn’t suggested and it would only have been a single.
If a double mastectomy is what you really want I can see why and hope your team are receptive to your decision.
Thank you so much for sharing your experience. It really helps to hear from someone with a similar diagnosis and treatment path. I’m glad your lumpectomy and radiotherapy worked well for you, and that your Predict score is so reassuring.
In my case, I’m leaning towards a double mastectomy because emotionally it feels like the option that would give me the most peace of mind long‑term. I know it’s not always recommended, but I hope my team will understand how much this is affecting me and be open to discussing it.
Thank you again for taking the time to reply — it really means a lot.
Thank you so much for sharing your experience. It really helps to hear from someone who also knew exactly what they wanted and went through a similar decision. I completely understand the need for peace of mind — that’s exactly where I am as well.
In my case, I’m trying to advocate for a double mastectomy because emotionally it feels like the safest long‑term option for me. I hope my team will take my wellbeing into account too.
Your point about the two‑step approach (immediate and later prophylactic) is really helpful, and I’ll definitely bring it up with them. I’ll also reach out to the BCNow helpline for guidance on how to approach the conversation with my breast care team.
Thank you again for the support, it means a lot.
1 Like
Hi, to be honest if I had been given the option I would have had a double mastectomy for peace of mind as mine is ER cancer an hereditary. I think it very much depends on what NHS trust you fall under and if you have gone private. But others may have a different experience.
Hi @paza2026,
Thank you for posting.
Following a breast cancer diagnosis, it’s natural to worry about the future risk of cancer after treatment and many people ask if there is a benefit to having a mastectomy rather than a wide local excision (lumpectomy) to remove the cancer and reduce the risk of it coming back (recurrence) in the affected breast. It may help you to know that a wide local excision with radiotherapy is considered to be as effective as a mastectomy for reducing the risk of cancer recurrence.
As it’s natural to be concerned about the risk of cancer developing in the other (contralateral) breast, some people also wonder whether they should have their unaffected breast removed as well.
Research has shown, unless someone has a higher risk of developing breast cancer in the other breast, for example having a BRCA gene alteration, as @Ahbc21 has mentioned, there is no survival benefit from removing it. It’s therefore not usually necessary to remove the unaffected breast, (see section 7) as the majority of women will not develop a cancer in that breast in the future.
Having both breasts removed can increase the risk of complications from surgery, for example, chronic pain and wound infection. It’s also important to consider the impact on how you might feel about your appearance, alongside the peace of mind you mention if you did have both breasts removed.
This is a very personal decision though, so having the opportunity to discuss your situation with your surgeon is important. As @bluetit11 says, your surgical team should listen to your wishes and can talk through the risks and benefits of each option with you to help you come to a decision that feels right. Do also talk to your breast care nurse about how you’re feeling, so they can support you.
If you are considering having your unaffected breast removed, your treatment team may refer you for an appointment with a psychologist. This is to make sure you are supported with making such a significant decision. If the removal of both breasts (bilateral mastectomy) is not recommended, your surgeon should explain their reasoning.
You will have annual mammograms to your unaffected breast, or both breasts if you have a wide local excision, to look for any changes in the breast tissue. It’s also important to remain breast aware and report any changes you notice to your treatment team or GP.
You mention that your breast cancer is ER and PR positive. For this type of cancer, adjuvant (after surgery) hormone therapy is usually recommended. It may help to know that this not only reduces the risk of the original breast cancer returning but can also reduce the risk of a new cancer developing in the other breast. Your treatment team can tell you more about this.
Sometimes talking to someone who has been through a similar situation can be helpful. Our Someone Like Me service can put you in touch with a trained volunteer to talk to for support. You may also want to post your question in this section of the forum.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
Our number is 0808 800 6000. If you have hearing or speech difficulties dial 18001 followed by our number and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
If you would prefer one of our nurses to call you. Please complete this form ticking the box agreeing to a call back.
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturdays.
We are closed on English bank holidays.
Out of hours you can leave a message and we will call you back when we next open.
Best wishes,
Cassie
Breast Care Nurse
Please read the disclaimer Full details on how we collect and use your data can be found in our Privacy Policy
As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.