Hi All,
After 18 months on a watch and wait program I just want to think out loud a bit and put down what I feel is the biggest question when deciding whether watch and wait is the best way forward after a radiologically complete response.
If someone has a radiologically complete response, goes on watch and wait and is long term cancer free, then everyone would agree that would be a terrific result as you have got rid of the cancer long term without surgery.
If someone has a radiologically complete response and then the cancer comes back locally in the rectum and is removed by surgery and then afterwards the cancer doesn't spread then the patient wasn't harmed by the wait.
However its a bit more tricky if someone is put on watch and wait, the cancer comes back locally in the rectum and then goes on to spread to distant organs.
Has this happened because the metastasis has been seeded from the regrowth of the tumour locally in the rectum and that this would not have happened if surgery had been done immediately after radiotherapy. In this case watch and wait has harmed the patient.
Alternatively, it may be that the metastasis would have happened anyway regardless of whether there was surgery straight after radiotherapy or after a regrowth with watch and wait. In this case watch and wait has not harmed the patient.
I think that to answer this question properly they would need to take a cohort of patients who have had a radiologically complete response and randomly assign some to have surgery and others to watch and wait and compare outcomes especially as regards metastasis.
But they can't ethically do this because most patients don't want to be randomly assigned to surgery which is why we don't really know. See the video below.
I was told by my NHS surgeon that surgery would not improve my survival chances compared with watch and wait so I opted for watch and wait. However please see this video by Dr Philip Paty https://www.youtube.com/watch?v=8WqV-kqSQ5E where he presents a somewhat more uncertain picture about whether it is possible that the wait might possibly harm a patient or not.
It's a difficult decision about whether to choose watch and wait after a radiologically complete response. I think this question is at the heart of it.
Hi Veggie lady,
Great to hear that you have had the CCR.
Watch and wait so far has been a terrific option for me personally and I just hope that it works out the same for you!
Take care,
Jogey
Hi Veggie Lady
its good to hear from another person put on Watch and Wait. My tumour is slightly higher than yours but my surgeon didn’t really tell me about the op - I’d certainly be asking if I needed surgery! I didn’t really get a choice whether or not to have surgery - as you said we have to trust our doctors to do their best for us but I’d have chosen to W&W anyway if given the choice and I’m happy to take part in a data collecting clinical trial. I’ve only just started the programme - I only saw the surgeon at the beginning of September so I’m very much a newbie but it’s brilliant to know I’ve got a reprieve from surgery for 4 months!! I hope to do as well as Jogey in the long term and I really hope you continue to do well too!
Best Wishes
Judy
Hi Veggie lady,
Thanks for your kind comments and I hope that watch and wait is working well for you too.
Hi Jeri,
Thanks so much for your kind comments and really hope everything goes well for smooth and effective treatment.
If you would like an up to date snapshot of my watch and wait journey so far, please have a look at my profile where
I have recorded it just to give other people an idea of what one person's watch and wait experience has been like.
Take care,
Jogey
Hi all I would like to share my husband’s journey and I followed Jogey’s journey carefully. My hubby was diagnosed with T3cN0m0 CRM involved rectal cancer 5cm from anal verge so permanent stoma on the cards. However after chemo radiation for 6 weeks followed by Capox for 3 months he had a complete response in Sept 22. First sigmoidoscopy showed abnormal growth which was high grade dysplasia. Surgeon reluctantly agreed to perform a Tamis to see if could cure but histology from Tamis show cancer cells in and at T3. Therefore there was very high risk of microscopic cancer cells remaining in deeper layers so John was urged to have Elape surgery which was performed on 18th April. Just had results- no cancer cells found. Could John have gotten away with just the Tamis surgery? Probably - but we and the MDT team had no way of knowing. There is partial regret of “what if’ and we have been told it wasn’t necessarily the wrong choice but it is a difficult road whatever route you take. I hope sharing this information is beneficial to someone out there facing a similar choice. Just for information John is making a good recovery and coping with Stoma with no problems.
Wow!
Thanks so much for sharing your journey with all the details on your treatment and medication. I'm sure it will be helpful going forward and save a lot of time scrolling the internet for relevant studies.
So pleased you have included both the vallies and mountain top experiences.
It's great to hear more about your experience.
Hope you are enjoying the bank holiday weekend.
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