I was diagnosed with ER8 HER2 - grade 2 on the 27th May - it’s a 5mm picked up on USS but occult on mammogram and MRI - the next step is double mastectomy due to genetics. My question is that I’ve yet to get an appointment to meet to discuss the surgery and told that another surgical meeting will be needed if I’m to precede with an autologous reconstruction. I am so worried that there seems to be absolutely no urgent. I’ve spoken to the breast cancer nurses several times and they keep saying that they’ve made a note on my file for the booking teams. They keep telling me how fantastic it is that it’s been caught early but all seem in vein if I have to wait and then give it a chance to spread.
Hi @strudderz,
Thank you for posting.
It sounds like a difficult time for you, and it is natural to have questions about the waiting time for your appointment to discuss having a mastectomy with breast reconstruction. Many people describe the time between diagnosis and treatment beginning as especially stressful.
It is natural to worry that the wait you are experiencing will allow the cancer to spread, however it may help you to know that a small grade 2 breast cancer like yours should not change in this time. You can also discuss this concern with your breast care nurse or treatment team. It is usual to wait a few weeks before surgery is scheduled and there are NHS guidelines for waiting times to start cancer treatment.
It may help to contact your breast care nurse again to clarify when your appointment to discuss reconstruction is likely to happen, and the possible timeframe for surgery following that. Alternatively, you can contact the secretary for your breast surgeon, who may be able to help with making sure an appointment is booked.
You also mention that you are having a double mastectomy due to genetics, and you may find it helpful to read our information on family history and managing your risk.
We offer a range of free supportive services which you may be interested in. They include face to face and online courses and events
Talking to someone who has had a similar experience can often be helpful, especially if you are considering different breast reconstruction options. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to help answer your questions, offer support and listen to how you are feeling.
You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.
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,
Katy
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.