Rectal cancer watch and wait

Hi thassos 

As regards side effects, I did not find radiotherapy too bad at all, apart from at one stage getting really bad diarrhoea. 

As regards chemo, I was on capecitabine with oxaliplatin,   I was quite tired and fainted once after going for a walk.

I vomited once straight after eating.

I got bad blisters on my feet and had to take antibiotics to prevent infection.

Drinking anything cold felt strange and uncomfortable.

To be honest chemo didn't feel too bad either and I was very lucky that I got no permanent side effects either.

All in all I'd say radiotherapy and chemotherapy were not too bad in my case so I was very lucky.

Best wishes,

Jogey

Hi thassos as regards, what time did they see the tumour had a CCR I actually can't remember  exactly.

However I think they delayed the post radiotherapy CT and MRI and sigmoidoscopy for about 2 months order to give the radiotherapy a chance to continue to work and the complete clinical response was discovered then.

Hi Jogey, it is really amazing your results. What would of been the out come if you did not achieve CCP. Would it of been LAR surgery, or if it was only tiny less evasive  surgery.

Hi thassos 

It probably would have been Lower anterior resection I think.

After the complete clinical response, one of the plans I had for possibly dealing with any recurrence was brachytherapy which is a specialist form of contact radiotherapy.  I also looked into the possibility of lowering the chances of recurrence after the complete clinical response by getting a brachytherapy boost.

I actually was referred to Professor Myint of Clatterbridge Hospital in Liverpool. After examining me, he said he could not see any trace of cancer after the complete clinical response, nor even a radiotherapy scar, and in these circumstances felt a brachytherapy boost was not necessary. But he monitored me for 3 years and the idea was that if I did have a recurrence (known as a regrowth after a complete clinical response) he might use brachytherapy to get rid of it and preserve the rectum. 

Brachytherapy is a terribly interesting treatment. I knew a guy who had a very low stage 2 rectal cancer and managed to avoid surgery and a stoma by using brachytherapy instead. I don't think it is currently standard of care in the UK yet but several hospitals around the country offer it.

Best wishes,

Jogey

Hi jogey, this is interesting Brachtherapy, and not being standard treatment in the UK, if you would of needed the treatment would this treatment be on the NHS, hope you dont mind me asking was there any sexual dysfunction with the radio / chemo. because you here some horror stories out there.

Hi thassos 

The brachytherapy treatment would have been on the NHS but they have certain criteria for giving the treatment and you have to meet those criteria.

As regards sexual disfunction chemo and radiotherapy did not affect the ability to have sex at all, but I was warned that I would be probably be sterile after radiotherapy.  There is far less semen  than before chemo and radiotherapy. I have not had sterility checked out as I did not want to have children at this age, but I assume that I can't have children, which I am fine with. 

Hope this helps.

Thats great Jogy, like i say you here some horror stories regarding ED, i think you have been very lucky all round, and its brilliant you are still on the forum giving your advice and journey experience, i take my hat off to you, hope you don t mind me asking your age, i presume you keep fit, as your name on here suggests

Absolutely agree thassos I'm the first to acknowledge I have been really lucky no question. I'm 65 now and was 60 at diagnosis. 

Absolutely I keep fit, both cardio  and lifting weights. Also, I deliberately don't have a car which forces me to walk everywhere. This drives my wife crazy, so I don't know how long I'll be able to hold out with the no car thing. Quite early on I saw some research from Harvard University that there is reduced risk of recurrence in colorectal cancer patients who walk regularly.  I also have been guided by dietary tips from Dr Charles Fuchs from the University of Yale, see my profile if interested.

Best wishes,

Jogey

Fab, ill follow in your footsteps, and will check out Dr Charles

Ok so am now coming up to 6 years clear and was discharged from my watch and wait program at the Christie in May. I feel fine and have totally normal bowel function and no pain either. 

However I have noticed more frequent blood on toilet paper lately so my GP did a FIT test and a CEA test. Both of these came back with no concerns about results, but my GP referred me for a colonoscopy at my local hospital anyway.

I have haemorrhoids so I think the blood is probably from that however I can't be sure. 

So I will let you know what happens at the colonoscopy.

Take care,

Jogey