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Breast cancer and autism

Elisa
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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 

Parents
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    HI Elisa,

    A very warm welcome to our forum.

    I am so very sorry to hear of the position that you are in.

    These Multidisciplinary team meetings (MDTs) are made up of all the professionals who will potentially be caring for your daughter. There will be input from the doctor who has already seen her and I am sure that he will mention some of the challenges ahead. They must have come across this situation before and will know a way around most of the challenges that this poses. If not, you will get the opportunity to see a consultant after the meeting

    Nothing will be set in steel and decisions can be easily changed if you disagree with them.

    I fully respect your decision to maintain quality of life over quantity. I am not a doctor and don't know whether or not it might help, but I understand that chemo comes in different forms and wonder if taking oral chemo might be a possibility. Have you been given another appointment for the clinic?

    Please keep in touch and let us know how you get on. This must be a heart breaking situation for you and your family, please remember that we are always here for you. 

    Kind regards,

    Jolamine xx.

  • Offline in reply to Jolamine

    Hello Jolamine

    been quiet a journey to say the least. The learning disability coordinator has been incredible. The hospitals have truly worked in partnership with us. We have used social stories and had a carers mum make scrubs for Ken and Barbie. These dolls have been the key for getting through appointments and admissions. Andrew her anaesthetist has been true to his word and taken such good care of her. Ken had his hair coloured brown and we dotted hair on his face to just look like Andrew. .  Georgia had a biopsy and CT scan on the 9th November. The biopsy results came back as no cancer detected. After the certainty which had been expressed at the scan stage we were delighted. However, on the 7th December she had the lump and lymph removed and this went again for biopsy. Devastatingly these tests showed triple negative cancer which main treatment is chemo or radiotherapy. Unfortunately my daughter would need to be sedated for any treatment which means pretty much that she is unable to have this treatment.  We only had the results on the 2nd of January. She’s now booked in for a further procedure for the 18th January and will have a mastectomy and removal of all the lymph. Her learning  disability and social and communication challenges makes it very difficult to know whether she is in pain, frightened, frustrated, sensory overload, angry, sad etc. When things go wrong or feel wrong for her she expresses this through challenging behaviour and often physical violence in an attempt to communicate. Everything we do is aimed at keeping things calm and trying to understand what’s going on for her. Life is hard for her and this breast cancer bomb is very difficult to navigate. As her parents we are trying our best to do what’s in her best interests and this involves some very difficult conversations. 

    from our meeting earlier this week the plan Is to remove as much as possible then wait and see. There doesn’t seem to be any chemo pill suitable and as it’s not hormone related cancer this rules out alternative courses of treatment . 

  • Offline in reply to Elisa

    Elisa 

    thinking of you and your daughter sending best wishes to you all love Lara xx 

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