Can anyone who has already had it, answer this question related to the ‘Gold standard’ of anal cancer treatment

Hi welcome and I hope you and your wife are coping with this awful news.. this forum is great for answering some of your fears and questions..

My 5.5 weeks start on 6th Jan also.

Thats Monday to friday for 28 days

My oncologist told me that I see her every tuesday and as far as I'm aware when you have the radiotherapy pictures are taken each time and will be discussed when you wife sees the doctor each week..

But I  still have lots of questions so any advice anyone could give on here would be great.

Good luck for starting the treatment 

X

Hi Vik63

Sorry about your wife's diagnosis. I finished my treatment on the 6th November. I was told nothing during treatment and I did ask the radiotherapists but they said the images they can see aren't that clear. Some of my tumour was external and I do think it's mostly gone apart from the biopsy site which could just be scar tissue, as for internally I have no clue. They said I would be scanned at 3 months post to see if it had gone but not to worry if it hadn't as the treatment is still working and the 6 month scan is the important one. From everything I know the treatment is usually successful so I choose to go with it has worked and if it hasn't I will cross that bridge if I come to it. I'm not a doctor but I don't thing they repeat the chemoradiation if it doesn't work, I think  the next step is surgery but you would need to speak to your wife's consultant about this. Hopefully it will work for her and you can get on with your life's. Have a good Christmas. Xx

Thanks for your reply - very informative - I will tell my wife - she got it into her head that there would be more. I will tell her the good news.
 Yes, part of my wife’s tumour is outside too. She will be very glad to see that shrink - it’s very uncomfortable for her to sit. 

Thsnks again X

Hi I found sitting a bit uncomfortable pre treatment and they gave me this stuff called instillagel which numbs everything for about half an hour and then it starts to wear off, maybe see if your wife can get some. People on this forum will give you lots of advice if you want it. I would just say to tell your wife to start moisturising downstairs to help protect her skin but check with her medical team about any products she might use however harmless you may think they are.  Once treatment starts water wipes instead of loo roll I also wore mens baggy boxers much more comfy than girl pants. Xx

Hello,

Yes, that’s right 28 days. I’m not sure we took in everything our oncologist said that day - my wife was quite distressed at knowing how far away that start day might be (we did not yet know then). It was a day or two later that we were informed.  I suppose 6th Jan was just within that ‘target’ they have athough when they start counting from is a bit ill defined. She got her tattoo yesterday. 
yes we wish each other luck. For us it’s at addenbrooke’s - wondering if we should stay somewhere locally for each week rather than that trek everyday.

ttfn

x

Hi Vik,

Hope you are feeling a bit more informed now that some people have responded to your query.

I imagine your wife will complete the course of treatment, then have a few months to allow things to settle, as the radiotherapy carries on working even once the course has finished.

My experience was that I had scan and DRE at three months after finishing chemoradiation, and oncologist told me then the treatment had had the desired effect, and there was no sign of tumour. He explained then that I wouldn't have any further scans unless I had symptoms or he felt anything during examination. 

I then saw oncologist every three months then for the delightful digital examinations and checking of lymph nodes in groin. I'm now three years post treatment and have just gone to six-monthly checks, all ok so far. 

I think this radiotherapy and chemo treatment is standard, and as has been mentioned they move to a different treatment path if this fails. It is a very well-used protocol and is known to have good results, even if it can be a bit harsh on the body at times.

All the best to your wife, hope it goes well.

Oh, also meant to add, your wife may start to feel treatment working after a week or so, which is reassuring even if radiotherapy staff can't tell you anything. I had such a sore bottom and was surprised when I realised it was starting to feel much better.

My wife was so glad to hear such news and thanks you do much ️

She is  feeling more positive now.

BTW the reason I’m here rather than her is because English is not her first language, it’s as if I’m her secretary 

Also...it might be worth buying a sitz bath, many of us have them. They fit over the toilet seat and you can fill it with warm water either to wash in, just to soothe or you can also go to the loo in them - it can be less painful to 'go' into water, and it's easy to clean.

There is also a small device about the size of an electric toothbrush, which you fill with warm water, then squeeze and the water gently sprays out of the little holes at the top. Mines is called a Happy Po. Both definitely worth a look.

Hello Vik63

I'm sorry I can't give you an answer based on my experience as my tumour was higher up in the rectum and apart from tiredness and skinny stools, I was unaware of it.  But based on other posts from other forum users she may well start to see a change during treatment.

When I had meetings with the oncologist during treatment it was to check how I was coping rather than check any shrinkage and any visual checks were to see how my skin was bearing up, in fact the first real examination for most of us is an MRI scan three months after treatment ends.  Even then, sometimes there is still some trace but the radiotherapy carries on working for a long time afterwards and more often than not completely gone by the six-month scan.

The treatment is 28 days, excluding weekends, and by my reckoning your wife should finish on 12th February.  Additional radiotherapy is not normally given in the same place but normally this treatment is very effective at eradicating anal cancer, and if not then the next step is surgery.  But that is jumping way ahead and I hope very much by very early spring your wife is fit and cancer-free.

The sixth of January is getting closer and I hope your wife manages to have some sort of Christmas before 6th January.  Even though initially she will still be in pain there is an enormous sense of relief and a feeling of having some sort of control when treatment starts.  And mark off those days of treatment - it is amazing how quickly they pass.

We are here to offer both of you support all the way too should you need it.

Irene xx