Hello!

Hi folks

My apologies if I have posted here already - I am finding the Macmillan site a bit clunky.

So I have DAC - and have known since the start of 2025. 

I have been on testosterone blockers since about February.

I was due to start Radiotherapy - 20 sessions - today - but it has been put back - hopefully just for a few days,

I was told about 10 days ago that I had to decide whether I agreed to a very aggressive Radiotherapy programme (A) or a less aggressive one (B). 

My original sign off date for the treatment was cancelled because they had not finished working out the treatment plan.

So they asked me to meet just before the start of the programme to agree the plan - either A or B.

I had asked the consultant whether they had treated anyone with this condition before - and they said no. This did not fill me with confidence.

I also asked if they had spoken with any consultant who had conducted such a programme - again the answer was no.

I have used ChatGPT to identify other consultants with experience in the UK - and have passed this on to the consultant.

My concerns are the usual ones - Effectiveness of the treatment and risk of damage particularly to my bladder and rectum.

Yesterday I received a phone call from the consultant asking me to agree to A or B - so that they could set the machines up. 

I said that I could not agree over the phone without a discussion and we had a meeting set up the following day to discuss this anyway.

So in 2 hours I go into the meeting (with and advocate) knowing that my treatment is on hold. Its a bit dispiriting.

Finally, the consultant has asked if I would like a second opinion - to be honest I just want them to talk to another consultant who has experience - because I worry that a second opinion will just hold everything up ... and I am now geared up for this intervention.

Its a bit dispiriting, any thoughts?