Thank you for your post.
It sounds like you are having a difficult time lately. Having your surgery postponed due to coronavirus and the problem with bed capacity for ventilators if you go ahead with a breast reconstruction is hard.
I have not previously come across anyone with spina bifida having surgery for breast cancer. Talking to someone who has had a similar experience can be helpful although we don’t have any volunteers with spina bifida but we may have some with other health conditions. It may be helpful to talk with someone who has had an implant reconstruction. Our Someone Like Me service can arrange for one of our volunteers to talk to you by email or telephone. Our volunteers have had a personal experience of breast cancer and are trained to provide support.
You can ring the Someone Like Me team on 0345 077 1893, or email them email@example.com 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. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000 (Text relay prefix 18001).
Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.
Breast Cancer Now Nurse
This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.
Thanks for posting your question.
We hope to be able to respond to you tomorrow.
In the meantime our Helpline is open until 4pm today if you would like to talk things through.
If you do phone our Helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you
With best wishes.
Ask Our Nurses Co-ordinator
Just before the pandemic, I was diagnosed with primary breast cancer, stage 1, grade 1. However, my course of treatment changed from lumpectomy and radiotherapy, to masectomy and possible reconstruction (tbc because my options here are limited) and I'm on tamoxifen until I can have surgery (tbc August). The surgery was delayed not just because of the pandemic, but also because I'm already disabled with spina bifida and I'm a wheelchair user. The main issue around surgery and reconstruction is because of the reduced capacity of my lings and surgery is tricky. I'll definitely need to be ventilated after surgery and the surgeons are trying to keep the surgery time under two hours. I know one other person with spina bifida but she had a different cancer to me and underwent lumpectomy, chemo and readiotherapy. My sister had a different kind of breast cancer to me. We've been tested for BRACA and I don't have that. My sister doesn't have spina bifida either. I'm trying to be as concise as I can, but I'm wondering if you have come across any other spina bifida patients who have had breast cancer or are undergolng treatment at the moment. I would particularly like to hear from those who might have had a pre-pectoral implant and mesh which is the only option available to me due to other complications. Many thanks.