My 38yo husband had a LAR surgery on the 2nd Feb with no stoma (something he said he could not mentally handle) , unfortunately the after care was atrocious resulting in them letting him out a week later and back in after 9 hours in an ambulance with 2 1/2 litres of urine retention.
On the 13th March we found he had sepsis and he made the life changing decision to have a permanent colostomy which he is doing amazing with. He’s doing more than before infact.
Pathology showed a moderate/ well differentiated cancer. Clear margin and 0/15 lymph nodes involved but EMVI + … no indication of how far in these cells where.
Oncologist said chemo would give 2-3% reduction in chance of recurrence and the long list of side effects so my husband said no. Surgeon also agreed and said ‘it’s of no statistical benefit’. My major issue is my husbands never had an abnormal CEA maker at all so bloods aren’t great to an indication (although I will be asking our GP to do full bloods) but he now doesn’t get a scan for a year?!
when I have looked into EMVI it’s awful! So why doesn’t that reflect with the professionals views? Also I’m yet to hear of anyone with EMVI who’s had no chemo and no spread or recurrence so this worries me even more!
Hi Cw1987 I’m not medically trained but from posts on here it generally seems that people who are EMVI positive are offered chemo in the form of capecitabine tablets that are a lot better tolerated than the chemos with oxaliplatin. Did the oncologist say which chemo he would be offered? All chemos have a lot of side effects but it would be unlucky for your husband to get every single one?
When I had my treatment my friend who was recovering from breast cancer told me to take everything I was offered. If hubby didn’t have the chemo and then had a recurrence would you always wonder ‘what if’ or would you accept the outcome? Chemo isn’t pleasant but it is the belt and braces to kill off any cancer cells floating around the body. He could give it a try and if the side effects are unmanageable then he could stop but there are lots of antisickness options etc. and also the option of a dosage reduction if he’s struggling.
Could you maybe ask for a second opinion from another oncologist re the benefits of chemo?
It is a tough decision especially when he’s only just getting back on his feet after the op but I hope you’re able to come to a decision that you’re both happy with
Take care
Karen x
Thanks for the response Karen. It’s too late now for chemo, I’m pretty annoyed tbh. I found CT DNA trials at a local hospital and emailed our oncologist to see if my husband was eligible. Anyway after his first surgery when he then took bad, I rang his secretary and said please can I come and see him without my husband as he wants me to still ask questions on his behalf and was told no he thinks it’s best we wait. Well by the time all these other issues had been resolved we went to see him and I said so the trial? ‘Oh yes well they said he was eligible and then came back again after sorting an app out for him and said he isn’t’ … I asked why and he said they didn’t say but I’m guessing it’s because too long has passed since his surgery. I was so angry.
He said at that app if he wanted chemo he needed to start it the week after to which my husband said no so he will definitely be too late to have it now x
Hi Cw1987
I'd like to share a different view.
Extramural invasions can be in blood (V), nerves (PN) and lymphatic (L) system, so EMVI alone is relatively positive. This enhanced with no node involvement is also positive.
I had chemo with all the above involved and with a double figure hoped % improvement in prognosis.
Chemo can have lots of side effects, some long lasting. I would hope that the professional guidance takes into account prognosis gain versus risk to quality of life.
The CEA marker is interesting as NICE bases alot of advice around it, so my hospital tests it very regularly. However, I too have never had an adnormal CEA marker so it would be interesting to learn what other monitoring people like us should be having.
The shock you and your husband had in the time immediately post operation sounds hard going. I hope you both can find some space now to see the positives in the biopsy results.
I was EMVI+ as cancer was found in lymph nodes. I was offered chemo but given the choice whether to have it. I had 7 treatments then had to stop due to poor recovery of neutrophils and have just been told I am clear of disease 5 years later. I'm pretty sure he could still have chemo (they just prefer to do it soon after the surgery to give the best possible chance of clearing any stray cells) but the oncologist is right, it's only a slight reduction of recurrence. If he is scanned next year it will catch anything whilst it's small.
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