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:

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:

Clairelou

Hi @kitti, I’m just up the road from you and my consultant is also at James cook ... I was also evmi and had 6 month chemo which was oxaliplatin and capcitabine .... how did your appointment go? :x::x:

kitti

He wouldnt give me oxy, said as mine was rectal it was mainly capecitabine for that and as i have a temporary stoma he was concerned about my output. My onc is Dr Wadd, my surgeon Mr Jha. :x::x:

kitti

I was disapointed but tbh have had tummy cramps all afternoon today, @Clairelou what is your follow up, Ive been told its 1 ct a year. The staff are all lovely at the hospital but Im such a worrier. :x::x::x:

Clairelou

@kitti morning, my oncologist is dr van de voet and surgeon is dr jha. My tumour was right hemicolectomy. Bloods every 3 month and 2 Ct scans a year for the first 2 year. My staging was T4N3M1 ..... I totally get why your a worrier and you’ve got every right. I’ve got my first colonoscopy on Thursday since diagnosis and I’m totally stressing :x::x:

Gypsy

@kitti Mine was rectal but I had oxaliplatin as well as cap tablets. I wonder would it be best to ask for a second opinion on it all now?
:x::x:

charleyb

I have to agree with @Gypsy now @kitti , i think maybe you should get a second opinion, as you need to feel confident you are doing everything you can to get rid of this swine!!!Plus if they are saying you are high risk and your CEA does not register for you, i`d be hoping they would increase your scans. P.s my husbands cancer was rectal also and he had folfox, i`ve never heard that they only give cap for rectal. And yes he did have slightly higher output on chemo days, but nothing that could not be managed. :x::x::x:

kitti

How would i go about that, thing is i dont want to upset my current onc or the rest of the team and I think he really believes it wouldnt make a difference. He did say it will only make a difference to 1 in 25, however with everyone been either on capox or folfox it does worry me. :x::x::x:

Gypsy

@kitti, you are the one who is currently upset and who has the history of cancer. Their feelings should not come into it and anyway, they are professionals and must rise above it! You are entitled to a second opinion and I believe you can ask the onc direct or go through GP? @charleyb can better advise as they did this successfully. You are not going to settle otherwise, I think.
:x::x::x:

charleyb

But it is your life? Who are you upsetting? My husband felt like you when i asked for a second opinion, he didn`t want to go, now he thanks me for it. By the way we still have our original Onc involved, she was the one that organised the chemo and radio, but the decisions about what and for how long were down to The Marsden. So you see she was never upset with us, and actually encouraged us and wrote the letter herself. I know others that have spoken to their GP. I would be concerned about someone saying it wont make a difference, how does he know that? and what if you are that 1 in 25? I`m sorry but there are too many warning signs for me. If you are high risk, and have emvi then you would definitely benefit in my opinion from mop up. Yes chemo is harsh and nasty stuff, and should only be given if necessary, but cancer is a swine and you need to throw everything you can at it. Obviously in the end it is your decision, a second opinion does not mean you have to take it, its just someone else saying what they think. :x::x::x::x: