The big question with watch and wait

Absolutely excellent post Jogey. I have observed a few people wrestle with this difficult decision and having this post to refer to for future  posters will be an invaluable resource from someone who has knowledge and experience. 
Many thanks,  I would anticipate using it . I would love to see some way of keeping posts like this as a resource for people for some of the more complex decisions. Total pelvic exenteration is another one where people with insight and experience are so helpful . 

Many thanks again ,

Court 

Thanks Court and I will be very happy if this is of use to anyone thinking over whether to go on a watch and wait program or not. Take Care.

Bookmarked it now ! 

Thank you Jogey - I’ve just been put on the Watch and Wait program as I had a ‘Total response’ to chemo and radiotherapy and subsequent biopsies have come back clear. I live in Oxford and have been told that the long term outlook is the same as for having surgery. I’ve been told I will have an MRI and Sigmoidoscopy every 4 months for 2 years then every 6 months until 5 years. I was told 70% of patients have no further issues but thinking about it even if you have surgery the question would remain ‘Did they get it all?’ So I’m very unsure about it but on the other hand I don’t want to have unnecessary surgery. I was told it would be immediate surgery if anything changed, but I do feel a bit better knowing they have biopsies the area and they’ve come back clear so they are not just guessing. Are you still on the program? How are you getting on if so? Thanks. Judy

Hi Jbel,

I'm very pleased to hear that you have had a clinically complete response to chemoradiation as that is a great thing to happen. I have now been doing watch and wait after my clinically complete response to chemoradiotherapy finished in January 2019 so it is now around 2 and a half years. So far there has been no local recurrence and no distant metastasis. I have no physical symptoms at all. Psychologically it can be challenging because with every scan you have as part of the program you never quite know if they will tell you the cancer has returned locally in the bowel or spread to distant organs. After the 2 year mark, the risk of local recurrence goes down significantly, so when this time had passed I found it was easier psychologically. Also if you have surgery, you still have to have follow up scans so you get the same psychological stress.  I personally consider myself to be the luckiest guy in the world so far as my cancer started out at stage 3 as it had spread to the lymph nodes, so watch and wait was really  wonderful for me. 

That said, the a minority of watch and wait patients do have a local recurrence, and although this can usually be dealt with the same surgery they would have had in the first place, these patients can have an increased risk of metastasis compared to those watch and wait patients that don't have a local recurrence. I know there are patients who have had watch and wait, have had a local recurrence, have had the surgery to take out the recurrent local tumour and have then found it has spread to distant organs and they are stage 4. I think it would be a good idea if you could have a chat  with one of these watch and wait patients who it didn't work out for. That way you could get a more balanced view. 

But back to me, so far I am one of the incredibly lucky patients that watch and wait worked out for so in retrospect it was a great choice.

If you don't mind reading academic stuff the following research is great for helping show what the risks are: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)31078-X/fulltext .  The short video by Dr Philip Paty I referred to above is also very good. Take care and don't hesitate to ask me any further questions you have. 

Jogey.

Jogey. Good to hear from you again and with such a fantastic response to the watch and wait - so pleased for you

Take care

Karen x

Thanks again Jogey. The article you linked to was very interesting and was roughly what I was told by the surgeon treating me. I’m really pleased you’ve done well in the long term and I agree with you in that the anxiety about scans and tests is overwhelming at times. I hope you continue to stay well! Best Wishes and Thanks again for your help.

Wish you every luck in the world whatever you decide about watch and wait.

Thanks so much Karen and looking at your profile very pleased to see you seem to be doing really well.

Take good care,

Jogey

Hi Jogey and Jbel59,

Your posts about watch and wait are very interesting. I am at the same stage as Jbel59 - just been put on W&W after CCR to neo-adjuvant chemo and radiation. I think you both raise some great points. The only thing I would add is that my surgeon emphasised that the op for such a low tumour (mine was 1cm from anal verge) has quite a high risk of complications, including incontinence, sexual disfunction,  nerve damage and pain, which have a great effect on quality of life. In his view, because W&W shows no recurrence for 70% of patients, it is worth a try. Regarding metastasis, he was of the opinion that if it comes back and has spread, then it most probably had already spread, so having the op earlier would make no difference. Who knows? I feel I have to trust him! The only way they can test it is to compare the outcome of people who decide to have the op anyway and don't W&W. The more data they get the better, and it is great to see that there are so many trials going on to improve the treatment and outcome for everyone. I wish you both the very best.