The Colon Club

I found out last week i have stage 4 inoperable colon cancer which spread to liver. 10 liver spots total.y baby has no father and is only 1 and a half. I am looking for positive outcomes and inspiation from others who have come through. I am terrified.

Welcome to the club though I’m really sorry that you’re here. I too was “inoperable “ when I was first diagnosed stage IV in 8/16. I had mets to my liver, lungs, and adrenals. I responded well to chemo. I became operable when I had a partial obstruction and had been off of chemo for a while to travel. I had surgery in November and resumed chemo. My first CT scan after surgery showed that my lung and adrenal tumors have resolved so I only have tumors in my liver now. Fewer and smaller and the two largest are actually necrotic. I had a PVE 11 days ago and I’ll have a liver resection 6/12.
I remember the fear in the beginning. I felt so unprepared for what was happening and alone in a way that was different. And I was so sick...I didn’t know if I could survive long enough for my port to heal enough to start chemo. I found this site soon after. I read everyone’s story and all the information. It helped me navigate my physical and emotional experience. I won’t lie...it’s been really hard at times. You can do this. Read as much as you can here. Ask every question that you can’t find an answer for. I wish I had started a journal to keep track of everything. We’are all in this together.

I am so sorry for your situation but hope my mum’s news encourages you on . She has just been scanned and has no evidence of disease nine years later .
Take care,
Stu

Trying wrote:I found out last week i have stage 4 inoperable colon cancer which spread to liver. 10 liver spots total.y baby has no father and is only 1 and a half. I am looking for positive outcomes and inspiation from others who have come through. I am terrified.

Trying, I am a Stage 4 survivor. Like you I was told I was inoperable and would be on chemo for life or until it quit working. They gave me 6 months without chemo and 18 months if I did well on chemo. I had tumors in all lobes of my liver (7 in total) and also one in each lung. But, after having a strong initial response to chemo, I sought a second opinion at MSKCC. They said I was a good candidate for surgery and a few weeks later I had my primary tumor removed along with a liver resection. They also implanted an HAI pump, which sends chemo directly to the liver instead of the whole body. Three months later I had double lung surgery and they removed both tumors at the same time. I am currently NED (no evidence of disease)!

I am telling you this so you know that a Stage 4 diagnosis is not a death sentence. There are many advances being made to treat Stage 4's - HAI pump, immunotherapy, etc. The most important thing you can do is to find a good cancer center, preferably an NCI-Designated cancer center. I'll put a link below so you can find the nearest one to your location. Even if it's too far away for you to get treatment, at least try to get a second opinion there. It could make all the difference in the treatment you receive.

https://www.cancer.gov/research/nci-role/cancer-centers/find

Also, ask for genetic testing if you haven't had it done yet. Tests for MLH1, MSH2, APC, MSH6, PMS2, and MUTYH mutations helps doctors determine which kind of treatments work best for you. There is an ever-increasing number of new agents aimed at a variety of these genetic targets so you need to know the biology of your tumor to get the best results.

You have a baby so I don't have to tell you that you have a lot to live for! Concentrate on that: your baby needs you. Then do what you have to do to get the best treatment possible. I know it seems overwhelming right now. The diagnosis alone is enough to knock you on your butt! The feelings you're having? Loss, sorrow, anger, numbness, confusion, shock, emptiness? We have felt all those things too.

But dig down deep inside you and find the strength you need to get through this. Don't be afraid to ask friends and family for help. And remember that we are always here for you. Ask questions, rant, vent your frustrations or anger about the situation, whatever -- we're listening.

Hope is the only thing that's stronger than fear.

Juliej

Thank you all. Your positive words are inspiring

Hi,
I git diagnosed in June 2015 with 10+mets to the liver. AS JulieJ I seeked help in MSKCC and received HAI pump treatment. I am 2 years NED and off chemo.
I agree Julie's post. The genetic testing was the first thing I did even before coming to MSKCC.
Good luck!

Keep your spirits up.
What has to happen, has to happen.
We can only work /fight to the best of our ability.
Pray well , eat well and get the best oncologist in a large institution that you have access to. I can't overemphasise the last point.

Hello. I'm so sorry you are in this situation. I was diagnosed in Feb. 2012 and was told I had less than 2 years. I too found myself at MSKCC and now 6 years later I am NED again. There is hope!!

When I was first diagnosed I couldn't even stand to be awake. It was too much to deal with. Slowly I pulled myself out of the depression by finding inspiring stories on this board. Juliej said it all in her post. She is an inspiration and has been so helpful on this board.

I wish you all the best.

juliej wrote:Hope is the only thing that's stronger than fear.
Juliej

and all I can add to that is :

LOVE is the only thing stronger than Hope

here, you will be embraced with Love
by those who know what you are going through

In Harmony on the Journey with you Trying
CRguy

Welcome to the group and sorry for your diagnosis!*hugs* I hope that your chemo goes well!*hugs*

I'm so sorry you're going through this. My youngest was only 10 months when my tumor was found, so I know how incredibly scary it can be to face a cancer diagnosis with young children. You've gotten some great advice. To echo what others have said, I would strongly recommend that you find a way to get yourself to Memorial Sloan Kettering as soon as possible. Again and again I've seen posters with inoperable liver tumors who made it to NED with the HAI pump. Dr. Nancy Kemeny is a world expert in this approach.

Wishing you the best of luck! I hope you'll stick around and keep us all posted. This board is a wealth of great information and advice.