The big question with watch and wait

Good evening, LB54, thanks for sharing your experience. It's so difficult to know what to do for the best when faced with life changing decisions.

I'm so pleased your hubby John is doing well after his operation and coping with the stoma. It's a challenging time for you both.

Hope things continue to improve, take it steady. I suggest you use all the expertise there is available. I know how invaluable I' ve found hearing from others in the same boat on this forum and in person.

One step at a time, be kind to yourselves and each other.

Jeri

Hi LB54,

Thanks so much for sharing and I really understand how challenging it is to make these choices. 

It honestly sounds to me like you acted very wisely given the information and medical advice you had at the time.

I too am really pleased that John is now making a good recovery and hope that things go really well for you both from now on.

Best wishes,

Jogey

I don't know if I have had a complete response from the 5 weeks of Chemo/Radio therapies for a small rectal tumour but the Oncology doctor has told me that the size has reduced significantly on the mri and ct scans I had a few weeks ago.

A meeting 4 days ago with an Oncology surgeon did not want to give me the option of watch and wait. He said the therapies were always to shrink my tumour to make surgery easier and less chance of spreading the cancer cells than if they had operated straight away. I explained that I had no symptoms and felt fit and well so was finding it a mental challenge to put myself through the surgery. They were very patient with me and explained that there was a relatively high chance of the cancer returning and that I would be better going through the LAR op now than in 3-5 years when I would be in my 70s. Also the chance of it spreading elsewhere if it came back.

The w & w program was never raised in any appointments I had in this hospital, I had only seen it talked about on these threads. I'm guessing different hospitals have differing opinions on w & w??

Hi Richard21,

so pleased you got in contact.  I too had chemo-radiotherapy and then chemotherapy.  The tumour I had, did decrease in size significantly.  However, when I had a physical examination as well as MRI and CT scan, they still wanted me to have an APR.  I asked if there were any alternatives. 

Have you heard of  Papillion treatment?  It's only offered at 4 centres but it may be worth researching.  

The cancer does need to be a certain size, position and shape but it could be another option.  When I was referrred the staff were very understanding and supportive.  May be you could ask your oncologist if you could be a suitable candidate. I too, was having difficulty getting my head round the operation as it would be life-changing.

The Papillion Treatment only lasts 2 minutes, although the appointment will last up to 2 hours as there is some discussion and preparation beforehand.  You go in and out on the same day and usually there are between 3 and treatments.  It contacts the cancer directly rather that through other organs as in radiotherapy.  I didn't have to take any tablets with this for a change.

It's only when you have a complete clinical response that watch and wait is offered as far as I understand.  If the tumour is smaller, the Papillion treatment is more likely to be used as it goes through a few millimetres at a time, kind of like layers of a onion.  There's no guarantee that there will be a complete response but it can happen.  If it doesn't then the operation is still another way of dealing with the tumour.

Hope this helps,  may be worth a discussion.

So difficult as nobody knows if the cancer will return whatever road they decide to take.

You need to do what you think is best for you.

Hi Richard 21,

Why not ask your colorectal nurse if you have had a clinically complete response i.e the radiotherapy has completely got rid of the cancer. If they say yes you have had a clinically complete response then you could ask them why they aren't offering you watch and wait given that others have been offered this option when they have had a clinically complete response at hospitals that offer watch and wait in these circumstances such as Queen's hospital in Romford, Essex where I was treated. 

As regards brachytherapy, this certainly might be worth looking into as Jeri29 says. 

I actually got my NHS consultant to refer me to Professor Myint of Clatterbridge Cancer Hospital in Liverpool to be assessed for a brachytherapy boost (using brachytherapy to reduce the chance of recurrence of cancer whilst on watch and wait). Professor Myint decided not to give me the brachytherapy boost as he decided it was not needed in my case, but I can personally recommend him as obviously expert in this field and a really caring doctor for his patients. I personally know someone who was diagnosed with a low stage 2 rectal cancer and managed to avoid surgery by having brachytherapy instead. One of Professor Myint's patients has written a book about preserving the rectum by the use of brachytherapy.

See https://www.amazon.co.uk/Saving-My-Arse-Cancer-Survivors/dp/0955903629/ref=sr_1_1?crid=2VBDO98WG1M2G&keywords=saving+my+arse&qid=1685378569&sprefix=saving+my+arse%2Caps%2C91&sr=8-1 

I hope this helps and best of luck whatever you decide.

Thankyou jeri29 this is very interesting. I will speak to colorectal nurses tomorrow and ask about it.

Thanks Richard21, I'm not an expert but hopefully you'll get some more information and possible another option to consider.

Ask lots of questions, some times it takes awhile to get other possibilities as Papillon treatment is not the usual route suggested.

Hope you have a helpful discussion with your colorectal nurses tomorrow.

Try and sleep well tonight.

Hi Jogey I just wanted to give you and other watch and wait patients an update as I haven’t posted for a while. I was one of the unlucky ones unfortunately. I’d just got to 2 years on watch and wait when a biopsy confirmed my tumour had started to regrow. I was offered local excision surgery, LAR or APR surgery which was the gold standard in my situation. I chose APR because my surgeon said it was my best chance of a healthy future. I had that surgery on 30th May this year and although I now have a permanent colostomy and a barbie butt I was told today that they had got all the tumour and I had 29 lymph nodes removed and all were clear of cancer so no chemo is needed. Ct scans confirmed no spread to date. My anxiety was through the roof on watch and wait and it got harder as time went on. I will now be on annual surveillance rather than 4 monthly which will be much easier to deal with. Because of the regular surveillance my regrowth was caught early and I don’t think I’ve disadvantaged myself in any way by being on watch and wait and I’m pleased that the tumour has now gone rather than being dormant ready to spring back into life at any time. I hope you have been luckier than me and have stayed well. Best wishes. Judy

Hi Judy I’m very sorry that you had to face a reoccurrence so long after your complete response but it sounds as if you made a good choice. Although my hubby chose local excision initially after a reoccurrence he suffered enormously with pain post op for weeks (much worse than APR) -  it was hard to watch and John went on to have full APR because of the histology from the LE so it was an added procedure that he needn’t had endured. I hope your recovery is going well. John is 2 days ahead of you surgery wise and apart from issues in sitting is making a good recovery. He still sometimes thinks what  if (as no cancer found after LE) but it’s beginning to dawn on me that the APR may be the best option long term. Take care. X

Hello LB54 Thank you so much for your reply and I’m sorry John has had to go through so much. I must admit I think I was very lucky to have a very experienced professor looking after me and he made the pros and cons of each option very clear. I have had very bad anxiety while on watch and wait that proved to be the decider for me because I was really worried that exactly what happened to John would happen to me and I’d end up having 2 ops when I could have just had 1. I am very happy with the choice I made for 2 reasons - firstly my APR was supposed to be 4-5hrs and actually took 7 because of all the scar tissue from radiotherapy which made me think that the biopsy wouldn’t have been successful anyway and secondly because I got my pathology results today and all the tumour was removed with clear margins and I had 29 lymph nodes removed and all were clear so I’m happy in my mind that they got it all when I know I wouldn’t have been with the biopsy option. I didn’t need the plastic surgery that some APR patients have so my bottom is uncomfortable but not really that bad and I can walk around with no problems. I am managing my colostomy fine so far. I am happy with the choice I made for me but I fully appreciate my choice may not be right for someone else. Wishing John a speedy recovery xx