Hello
i am mum to a 33 year old autistic young woman. I detected a lump in her breast two weeks ago and she was seen at the local breast unit yesterday. She is non verbal and has very elevated sensory issues and with over stimulation can become very aggressive and upset
She did very well with the initial consultation as we were able to manage her anxiety (mum and sister) and were able to let them know her special needs beforehand.
She was seen by a doctor and then had a scan and they say she has breast cancer and it’s also in her lymph glands. There were no consultants available but I am told they will discuss her treatment on Thursday. They were unable to carry out a biopsy due to her anxiety
The idea of chemo or radiation is inconceivable as she can’t even have her teeth cleaned without full sedation. It’s only in the dentist that we have ever been able to take blood samples. We briefly talked about sedation for biopsy and then potentially for mastectomy, discussing the issues involved with managing pain and drains
With them saying it’s in her lymph I worry about carrying out an invasive procedure and putting her through such a fearful and anxiety producing procedure if anything has spread elsewhere. Even at this stage they suggested a full body scan would be out of the question which to me makes no sense. I feel it would be important to know the full position before making any plans. I am probably ahead of myself but worrying that the discussions that take place will not involve anyone considering the challenges my daughter faces. She doesn’t understand the situation and we are focusing on keeping everything positive and upbeat to prevent her worrying. Our focus after much discussion with limited information is about maintaining quality of life and happiness rather than quantity of life at huge cost and trauma to her.
Has anyone been in a similar position and able to offer advice?
I would be very grateful for any guidance to help us navigate this situation.
Thank you
