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Beating Bowel Cancer Community

General Discussion

kitti

Emvi please explain??

I posted earlier but think i may of put it in the wrong place so here goes. I was told today at my post op follow up that i have emvi, i know its not good but wondered if anyone could explain? Or if anyone is the same? I was T3N1M0. My onc actually asked if i wanted chemo or not as said it only works for 1 in 25. He agreed to give me 3 months capecitabine and tbh im not happy with that as my original plan was 6 mths, i also thought id get capox or folfox, so im confused but dont know what to do. Hugs :x::x::x:

xSazx

Hi Kitty. My husband was emvi positive after surgery. In a nutshell his onc at the Royal Marsden told us that it means that some cancer cells were found in the blood vessels surrounding the tumour. What then happens to these cancer cells is anyone's guess. The body's own immune system could kill them, they could die off whilst travelling through the vessels or in some cases they will continue on to distant parts of the body, find a new host and grow into a new tumour. Chemotherapy is very good at helping the body to attack and kill these rougue cells. He was told that about 30% of patients will experience a recurrence (after chemo). That number is alarming but that also means that 70% will not. We were very worried about a recurrence but having been on this forum for a while now I see that even if he does have a recurrence, there is so much the medics can do now and there are so many positive outcomes as you can read on this forum. Love and best wishes to you! :x:

kitti

Hi @xSazx I hope you dont mind me asking but what chemo did he receive? My onc wasnt sure if chemo would make any difference as said it only works for 1 in 25 people, i said i wanted some and he said he would let me have 3 months capecitabine, it hasnt started yet and tbh im not happy as think i should be on capox or folfox. Hugs :x::x::x:

charleyb

Really great explanation above from @xSazx . My hubby too is emvi positive, and yes he did have a lung met on diagnosis, but as he had 3 lymphs positive too who know how it got up there. I have every faith that chemo zapped whatever was systemic, fingers crossed it was enough. We were also given the 70% prognosis from The marsden :)
Bigs hugs and good luck with chemo @kitti :x::x::x:

kitti

Hi @charleyb , again please can i be nosey and ask what chemo your husband was given? Hugs :x::x::x:

charleyb

Hey @kitti right so bare in mind Charlie was stage 4, so he had chemo prior to surgery which was folfox, 5fu and cetuximab (targetted therapy), and as mop up just folfox and 5fu, so he 12 cycles in total. Personally i would be pushing for chemo, as even a small percentage benefit is better than none? Chemo is nasty stuff yes, and is never taken lightly so obviously discuss with your team. Did you have any positive lymphs? :x::x::x:

kitti

I was T3N1MO, I did have chemo radio but had minimal response however only had 1 lymph after and remained emvi positive. Tbh i hadnt been told anything about emvi until yesterday, i was still in hospital when the histology came back yet was only told it had gone. To be told this by my oncologist yesterday was a shock, ive googled and put myself back in that awful place i found myself in upon diagnosis. Hugs :x::x::x:

charleyb

Don`t google for a start, no good ever comes of that. Honestly please do not panic, but if you are concerned either speak to your team, or request a second opinion. You have already had chemo, so that will have attacked those cells zipping about, and rem that your body is very good at killing off rogue cells by itself too. My advice would be to have another conversation about it all with your team, they are the best people to answer your questions. I found that whenever i had new info about Charlie it took me days to process, and like you went right back to the place when he was diagnosed. We had always been told Charlie was N0, for ten months i had believed this, and bam when they gave us the histology after the bowel op he had 3 nodes. I was distraught, and didn`t focus on anything other than all of a sudden there was lymph node involvement. But after a few days and a few more chats with his team my fears eased. Massive massive hugs, cancer sucks!! :x::x::x::x:

kitti

Thanks @charleyb you are so right,and its so hard with young children, im not saying its any easier without but all I want is to give my children a stable and secure upbringing, and the uncertainty of all this is so hard. Hugs :x::x::x:

charleyb

@kitti I know, our little boys were 1 and 3 when Charlie was diagnosed and literally it came out of no where, life was so good at the time too, i was so content. Slowly and steadily tho we are building ourselves back up and most of the time now we are normal (well a new normal!). We have a scan in 3 weeks and already my stress levels are rising arghhh.
Anyway please chat to your team about all this, they should be able to answer all your questions, and give some reassurance. And rem that chemo keeps working even after you have stopped taking it. :x::x::x::x:

xSazx

My husband had 6 months of Capectabine and Oxyliplatin (8 rounds). Many patients now have 4 rounds of Capox as it is almost as effective. It was our personal choice to go with the 8 rounds. I'm not sure what your onc meant about chemo only working for 1 in 25. Chemo is very good which is why so many people are successfully treated. This along with great surgery. Our onc said that clear margins after surgery was a huge factor too. :x:

1234annie

Hi @kitti ,
I had EMVI too, can you request 12 sessions of folfox? I would not be happy with less than that with EMVI or not. You can not have EMVI and still have recurrance, you just can't call it.
I initally asked if I could get away with 3 months chemo and she said NO!
I'd go back and ask for a second opnion, you want to know in your heart and mind that you've thrown everything at this and have a good chance of getting past the recurrance window.
Annie :x: :x: :x:

DianeS

Hi @kitti please try to remember that ever single persons cancer is unique to them. I was the same diagnosis as yourself but wasn’t told I was EMVI. I had 6 months of Folfox, and had a recurrence in the liver, 5 months after chemo finished. There have also been trials to suggest that it is not necessary to have the full 6 months of chemo. It is all very confusing, and I think because cancer is so complex that’s probably the reason a cure hasn’t been found. You need to be happy with everything at the start of your treatment, therefore I would also be tempted to get a second opinion, just to make sure you feel you are doing what you feel is right for you. Very best of luck Diane :x::x::x::x::x::x:

kitti

Hi @xSazx , @charleyb , @1234annie and @DianeS I have just been told by my colorectal nurse that i actually had no lymph involvement at surgery or in histology just emvi, still a worry and thats why i was told it is up to me if i want chemo, i have booked another appointment with my onc next thurs, hopefully i will feel happier once ive asked if i can have folfox and why he doesnt feel its needed. My surgery report said very good margins were achieved so its mainly the emvi that worries me. :x::x::x:

xSazx

Personally knowing what I do know I would definitely recommend you have chemotherapy. At least then you have done everything possible to zap any rogue cancer cells. Chemotherapy can be very tolerable and anti sickness tablets worked very well for my husband. The Capecitabine tablets were no problem. It was the Oxyliplatin that caused a few side effects but he worked 6 days a week right through his treatment except for one day off after each of the 8 Oxy treatments. Emvi is a concern and I would seek a second opinion if your current oncologist is not appearing to do everything possible for you. :x:

1234annie

That's good news @kitti, the chemo radio could have killed off cells in lymphs first. It's difficult for them to give you an exact histology if they take it out after you've had some treatment. I'm really suppried they are giving you an option given your age. I was categorically told I was having it and if I didn't it would come back!! I know they can't give you a definitive, there are no guarantees with any option and some people who don't have chemo go on to be cancer free. Some oncologist as you'll have seen on this forum are negative and don't go balls out with treatment when they should. Take someone with you and give him/her a good grilling and defo ask for a second opnion. You could be getting completely different advice from someone with more experience. :x: :x: :x:

DianeS

Hi again @kitti I was originally no node involvement and at that stage I could have made a decision regarding chemo, but things didn’t look quite right so they dug a bit deeper into my histology and found 1 lymph node out of 33, that were tested, so had chemo in the end. It’s good to see your onc again and if you still don’t feel confident get a second opinion. Good luck next week Diane :x:

charleyb

@kitti great news that you have an appointment next week, hopefully you’ll get the reassurance you need. Good luck and keep us posted :x::x::x:

kitti

Hi @1234annie Im going to, thing is my oncologist is clinical lead at the hospital and also does private work so very experienced, I need him to explain as I need to feel confident in what chemo I get, I know even my colorectal nurses said before my op that at 39 she expected theyd throw the kitchen sink at it! Hopefully next week will give me some answers. Hugs :x::x::x:

1234annie

I'll keep it all crossed for you. :x: :x: