Hi,

I have a daughter who is autistic who is 26, like your daughter non-verbal and highly anxious due to her not understanding the world around her.   I also work with young adults who have complex needs.  I am not going through the same as you but the fear of my daughter ever getting ill is so distressing as she has refused treatment and had to be sedated to deal with any situations even the dentist.     She recently got cellulitus and they could not take any blood or give her the antibiotics by IV,  we did manage orally. 

I am lucky as she responds better to male nurses or doctors and I have taken a NOW and NEXT symbols with me, which helps a little also a DVD player.   Does your daughter have PA's?  Most hospitals have a designated team which are for vulnerable patients to make sure they and the families are supported throughout treatment.

Hope this helps

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.

Thank you - your reply really does help and your daughter sounds very similar. My daughter is totally distracted and engages better with males as she has all her hormones firing - she loves a flirt. 

I will enquire in the hospital about the LD team. Our previous visit re cervical screening was a disaster with security being called as she had a melt down. She does have PAs and 24 hour support but for these initial appointments I need to take part to speak for her. 

I have given up any hope of a smear or even having a mammogram in the future, for my daughter.   Most of the autistic young adults I know respond better to a male figure!!    My daughters PA is amazing and I sometimes have asked her to take my daughter on my behalf to appointments but this is different for you, every appointment is necessary for you to attend.   I have come across some amazing nurses and doctors who try to understand the needs of people with challenging and complex behaviour but this is not always the case, that is why most hospitals have introduced a team to support those who need it.    You are her voice, have you got the Power of Attorney for her Health and Wellbeing?   I know this is very hard to get but it maybe something to look into.

Please let me know how you get on.  Unless you live with someone who have complex needs due to their disability its hard to understand the challenges as a family we face, but there is plenty of people out there who will support you and your daughter to the challenges ahead and hopefully give you the help and support you all need.

x

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 . 

Hi Elisa,

I have been thinking about you and wondering how you and your daughter were getting on. I am delighted to hear that the learning disability co-ordinator has been so helpful. It sounds as if your daughter's team has managed to pull together, in an effort to carry out her tests and surgery.  It was a truly inspirational idea to put Barbie and Ken into scrubs and the icing on the cake, was to personalise Ken, to look like Andrew.   

To have been told that she was cancer free after her first biopsy, would have been such a relief.  You must have felt totally devastated to get the post-surgery pathology results back, only to find that she had triple negative breast cancer. I am sorry to hear that none of the chemo tablets would be suitable for her. Did you also discuss immunotherapy options?

How do you feel about her having a mastectomy? You haven't had long to think about this yet. I have no doubt that she'll get through the surgery easily enough, with the same care team. Sorry for firing so many questions at you, but how did she react after the lumpectomy? I have had 2 bouts of breast cancer. First time around I had a lumpectomy and, a year later, I had a double mastectomy. There was quite a difference in the appearance of my chest after the mastectomies and, I wonder how Georgia might feel about, or react to this this, after surgery?

I don't envy you and your family having to make this decision and, I'm sure that there will be some difficult conversations to be had. Whatever decision you finally reach, I hope that it turns out to be the right one for all of you.

Please keep in touch and let us know what you decide. In the meantime, don't forget  that we are always here for you. 

Kind regards,

Jolamine xx