Treatment Options

Hi Fifra. This is purely my opinion and I’m not medically trained but I think watch and wait is not an option and hubby needs to get rid of this tumour once and for all. Contact radiotherapy sounds a good idea as it may potentially shrink the tumour and the smaller the better to remove it. APR is a big operation but there are lots of people on here who’ve had it and are now getting on with their lives. Has your surgeon expressed an opinion as to which he would advise?

Take care

Karen x

thanks for replying , consultant didnt really advise , said they would support any decision we made (helpful).

We are just trying to judge if we went for contact radiotheraphy would it remove the option of APR.

Impossible to know its it , would like to preserve organs as long as possible.

Hi Fifra,

I had an APR operation on 16th August.  This was because my (very small early) rectal tumour was so low down that it was virtually on the sphincter.  After 2 biopsies under GA failed to remove it all, it was explained to me that any more surgery would leave me incontinent (because they would have to take a lot of the sphincter).  APR would be curatvie as it would remove all the cancer, the nodes and fat around.  I was a bit horrified at this drastic solution and asked about chemotherapy (not on because it hadn't spread) and radiotherapy.  The oncologist said that radiotherapy might also leave me incontinent because it would damage the sphincter, and, if I later on needed to have the APR, the radiotherapy would make the healing of the wound underneath very difficult.

It is a big operation but now, 9 weeks later, I'm feeling back to normal again and very grateful that they have managed to remove all the cancer.  I am finding that a stoma (the thought of which had terrified me) is very manageable and am getting used to it.

Really you need to ask your consultants about the upsides and downsides of each option in the matter of oncological results as opposed to quality of life.  I know it was a very difficult decision for me to make but I did it with all the knowledge I could gather.

Please ask me any questions you want in relation to APR and I will try and help.

Jane xx

thank you Jane , reading your experience we feel reassured , we are torn as the oncologist supports the contact radiotheraphy where as the surgeon said the treatment was our choice . We are taking time out to decide .

Good to know you recuperated well and relatively quickly. 

Keep well and thanks again for giving us your experience.

Hi Fifra,

Is the contact radiotherapy what is also called Papillon?  If so, I think people on the Anal Cancer Board know more about this.  You could try asking there.

Best wishes with your decision.

Jane xx

You might like to check out KevH posts as he has written about his experiences of Papillion!

Take care ,

Court 

thanks for that will head there

Thanks reading posts very helpful and re-assuring