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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

Julesjhl

Complete response and surgery going ahead

Dear all

I completed 25 sessions of chemoradiation and today the surgeon told me the repeat scans have indicated a very good response and maybe even a "complete response" and I was delighted, but advised still need to go through with the abdominal perineal resection and a permanent stoma which is scheduled for 2 weeks.

Has anyone been on a wait and see after a clear response. The surgeon said I still need to go through with the operation but my husband keeps asking why if the tumour has melted with the treatment.

Has anyone had the same experience as I need some knowledge on why on this as I know the doctor would never recommend this course of action unless they had to as he told me it is the most major op he does. I have the pre op this week so I will talk to them as well.

Thanks
Jx

lizzie1963

The same thing happened to my husband.
He was diagnosed last August, and after 5 weeks of chemoradiotherapy he had a good response with nearly a complete response. Apparently, the chemoradiotherapy can carry on working for longer so rather than jump in to do the APR he was left a few more months. The rectal cancer showed to be very small and it was uncertain whether it was scar tissue. Dave was then on the wait and see protocol. Scans in august 2017 showed an increased activity. He is now recovery from an APR which he had 4 weeks ago. We were so hoping that this was avoidable . However, during the wait and see time always concerned me as it made me think, what are we waiting for? I was worried the cancer would come back somewhere that would be inoperable. Now that the surgery is over, I wish that it had been done sooner.
Good luck
:x::x:

Julesjhl

Thank you for sharing. it is good to hear that your husband is recovering.

Stillme

A friend of mine had exactly the same two years ago and then a few months ago it had come back and she had the surgery three weeks ago. I am slightly different in that they removed the tumour before realising it was cancerous but still wanted to do Apr surgery which I am having next week. It took me a long time to accept it as I too will have a permanent colostomy but I kept reading about how high the risk of recurrence is, other people's stories, my histology report and also diagrams of where my spread may have been so decided I would rather take the most precautions possible. Good luck in your deliberations.

Julesjhl

Thank you for sharing. Hope all goes really well next week. I am completely with you about accepting the bag. The nurse said I should try irrigation. My hospital does give me any other option, it is the Apr. Jx

Lady GT

Good morning @Julesjhl .
It's great to hear about your response to treatment but it's difficult to be left in that no-man's land of wondering if you should have major surgery.
It's my understanding that scans can only tell us so much about what is going on in there. You only get a complete picture after surgery, when the surgeon can go in and actually see what's happening. He'll remove the affected part of the bowel, plus a bit more, which will then be sent off for analysis. Those tests will tell you definitively whether there are any stray cancer cells remaining or whether the cancer is also in the lymph nodes (from where it can easily spread around the body).
Then you'll know FOR SURE what the situation is.

Or you can cross your fingers and hope.

You are doing exactly the right thing in gathering information, both here on the forum and from your team later this week. It's an important decision and you need to have all the facts so you can decide what is right for you.
Do let us know what you decide?
:x:

SariDaffs

Hi @Julesjhl firstly it is great to hear about your response to the chemoradiotherapy ... I was really interested to read your post and then the comments from @lizzie1963 , @Stillme and @Lady GT. I am in the same situation and posted about this last year in November. This 'limbo life' has now taken over everything, I seem to be thinking about it almost all the time even though I feel physically well. I decided late last year to give it a rest over Xmas and wait for the first follow up scans and scopes (next week) and also requested a second opinion (23 Feb at UCH). My surgeon has been helpful and given me time to think and has been supportive in discussions - he leans towards watch and wait to avoid the long-term effects of surgery, but even he said that nothing may show on histology when they remove the bowel but that does not necessarily mean that there is nothing there. I have been reading up on this protocol and also comments in the forum and now am more disposed towards surgery ... just to get it over with. My situation is compounded a bit because my partner left me 3 weeks after diagnosis (lots of tears over that), and so I am thinking about new relationships and dating etc with the added complications of stomas, scars, difficult diets and irregular bowel function etc... I will be interested to hear how you get on. Sarah :x::x:

Clancy

@Julesjhl, I had 3 months of FOLFOX and Panitumumab. This got rid of my 3cm bowel tumour and three of my six liver mets.
2 months after my liver resection the bowel tumour came back and so did the three other liver mets.
My bowel resection was done two months later and chemo two months later to shrink liver mets.
My second liver resection is scheduled for next Tuesday 9th Jan.
Good luck.:x::x:

Sasa

Hi @Julesjhl ,

This may be a silly thing to say, but have you asked your surgeon to explain why you still need to go through with the op? Marks surgeon was very patient and very happy to reply to questions that were basic to say the least. Could you email his secretary? That’s what we did.

Good luck with whatever you decide to do.

Sarah :x:

Baxter2

What an amazing response @Julesjhl You must be so delighted with this news.

I can understand your questions regarding the need for surgery but as always, the surgeon would be the best person to discuss this with. Go armed with lots of written questions and another pair of ears if you can?

Will you let us know how you get on?

Sending all my very best wishes,

K ????❤️

Julesjhl

Thank you for your replies. I spoke to the colorectal nurse today who has said she will get me an appointment with the surgeon if I wanted it and explained this is the gold standard treatment for rectal cancer. She said the MRI report stated that the mass had reduced significantly but there is indication of something which could be a small portion of the tumour or adhesion but they don't know unless they remove it and it is analysised by pathology. If it still has cancer cells it might grow again so their treatment is to remove it and they were just letting me know that the pathology report may state a clear response. So off to pre assessment tomorrow.

Thanks for the support.

Jx

palace1960

Hi @Julesjhl - I had the same response as you in that the tumour was obliterated by the radiotherapy and barely visible on the MRI and CT scans - my surgeon discussed watch and wait with me but wanted to be certain that the tumour site was free of cancer cells so he did a flexible sigdcosopy and took some biopsies. The results came back showing that there was still some abnormal cells and he said it was very likely cancer was still present or if not it would return so we should go to surgery as originally planned. I was a bit deflated but as there was only a couple of days of waiting between discussing watch and wait, then having the flex-sig and getting the results I got my head around having to have APR surgery again pretty quickly. As has been said surgery is the gold standard for rectal cancer as I believe it is for most other cancers. If you look at my posts under my profile it will give you an idea of my journey so far. Good luck with your pre-op assessment tomorrow and please feel free to send me a PM if you want - cheers Ron :x:

Julesjhl

Thanks Ron for sharing. I will look at your posts and thank you for the offer to Pm. I think you hit it on the head it is getting your head around having the Apr again. I had accepted it until complete response was mentioned but feel better since talking to the nurse.

Jx

Julesjhl

@palace1960 just read your posts Ron. It looks like our symptoms and treatment plan are so similar. Christ I didn't think about things like bowel prep with a stoma. Jx