Rectal cancer watch and wait

Hello Susie64,

I have completed two of the three Papillon treatments at Clatterbridge with one more to go in mid March. After the first session and before the second, the photos showed the residual tumour had substantially reduced again with a small amount remaining.  They were pleased with my response.  Professor Sun Myint and his team at clatterbridge are fabulous and I’ve found the treatment experience to be fine and no issues with any side effects.

i’m optimistic that I’ll continue to respond well and that I’ll be one of the 80% that achieve a complete clinical response and no regrowth during the first 2 year of watch and wait.

Hi Powder,

Thanks for sharing. That sounds really positive.  I'm keeping my fingers crossed that I will be suitable for treatment, How long did it take for your referral to Clatterbridge?

x

Hello Susie64, I had EBCRT first for 5 weeks.  I completed that on October 24th 2023 and had MRI and sigmoidoscopy on 20th December.  The tumour had shrunk substantially  to 5- 10mm and was within the <3cm for papillon.   Clatterbridge contacted me in mid January 2024 and I started treatment on 16th February 2024 and my second treatment yesterday on 23rd February.  Go, overall from the scans ion 20th December 2023 it took only 1 month for Clatterbridge to contact me and another 4 weeks to start treatment.

best regards

sue

Five years clear on watch and wait and now discharged!

Hi all ,

So after a CT found no metastasis but thickened rectal walls they ordered an MRI to investigate this.

The MRI fortunately was completely normal.

My CEA was completely normal.

Today I had my colonoscopy and that was completely normal too.

I had a chat with the consultant surgeon before the colonoscopy and he said if the colonoscopy was normal I would be discharged.

He said that 'as far as we know' the risk now is the same as for any person in the street who has never had rectal cancer before.

Given that I started out at stage 3 that was just a wonderful thing to hear!

I feel physically very well without any physical difference now compared with before my rectal cancer diagnosis.

Watch and wait has enabled me to preserve the rectum and so my bowels function completely normally.

I feel that watch and wait requires mental strength as you have so many scans and endoscopies and they often throw up equivocal results that have to be investigated further. For instance one of my CT's showed suspicious areas of the Liver and they weren't sure if these were metastases but subsequent MRI and PET scans showed they weren't. There were quite a few similar scares. However I gained skills of how to handle this uncertainty.

I'm writing from the perspective of someone who has been very lucky through the watch and wait process in that I never had a recurrence..

However some patients on watch and wait do have recurrence and then go on to have surgery.

I have no idea if this would have happened to me I would have regretted my decision to go on watch

and wait or not to be honest. 

I was told by my colorectal surgeon when he told me about watch and wait right at the start that there was no greater oncological risk compared to having surgery so given that I felt it was worth trying watch and wait and that logic still feels sound to me.

I can only speak to my own experience of watch and wait, I'm very happy to acknowledge that I've been incredibly lucky with it,
and can only say that it has been a wonderful treatment path for me.

If anyone is interested in my watch and wait journey, please see my profile.

Very best wishes to all of you,

Jogey

Wonderful news Jogey . I think you could teach classes on how to deal with the variables this brings and to do so with a sense of calm . 
Quite incredible.

Well done and thank you as ever for sharing . I sincerely hope you are able to stay around . Such a valuable resource but also understandable people move on .

Take care ,

Court 

Thanks so much Court and I'd like to thank you too for the very helpful comments interest and attention you pay to the forum users here. You are doing great work.

Very best wishes,

Jogey

Good news and not so good news.

So my surgeon rang me today.

The (very) good news is that I am going to be discharged as a rectal cancer patient, because I've been clear for over five years now.

The not so good news is that in my most recent MRI of the Pelvis and Rectum, restricted diffusion was noted in the prostate.

Restricted diffusion in an MRI can sometimes (but not always) mean that cancer is present..
However when they checked previous scans going back as far as two years ago they found the restricted diffusion in the prostate was present then and has not changed at all since.
The implication is that it is likely this is not cancer, because if it was cancer it would probably have changed in the past two years.
However my surgeon is not sure, because she is a bowel cancer specialist, and doesn't have much knowledge of prostate cancer so she has messaged her colleague who is a prostate cancer surgeon for an opinion on this and she will get back to me.

So I'll live with uncertainty for a bit longer.

Its interesting because this is exactly the kind of thing you get used to as a watch and wait patient because you have so many scans that they turn up lots of  unexpected things that are equivocal and need to be investigated.

I'm a real veteran here though and I'm OK waiting to hear where this is going to go, and I feel that whatever happens I can handle it.

What will be will be.

Very best wishes to all of you

Gosh you are a veteran ! 
We got to a similar point with mum’s scans . Always seemed to be bits that required another eye to be cast over them .

Does sound encouraging though that it has been static for so long !

Holding onto that being good news .

Court 

Thanks so much Court

Jogey,  well done you on getting the discharge, I’m with court it does sound encouraging, (I just read my words and auto correct changed your name to Nigel,) good luck going forward.