The Colon Club

Yesterday, a PET scan results showed a spot on my liver that my surgeon confidently told us was a hemangioma lit up- along with some spots next to it.

They say they would need to do a biopsy to determine if it's cancer, but the tone is that they believe it is. This means Stage 4, which has struck me down hard and left my husband and I in varying degrees of despair and panic since.

It's never going to be okay to say goodbye to my kids, or to leave my husband alone to raise them- EVER. Anyone with Stage 4 have some good news to share? Did you ever get to NED?

I need to hear good news. I need hope.

I have been on this board for over 5 years now and I have seen a lot of people come and go. I have seen a number who's situation looked dire go on to be NED from stage IV.
There is no telling what may, or may not happen. It is obviously extremely hard to face a stage IV diagnosis, and there is the natural reaction that you are undergoing now in the "why me, am I going to die" stage.
People said to me, that "we are all going go die" but I didn't buy into that. Yes, we are, but not so in your face as a Stage IV colorectal cancer diagnosis.
What I bought into was getting through my colon resection, and then having my lung resection (you need to see if you are a candidate for a liver resection) as this is your gold standard at having a chance for NED. If you can get that then move on to some form of Chemo and see what happens from there.
Whilst that is going on live each and every day like it is your last, as you never know, it may not be. What I mean is make your life as happy as you can with your husband and your kids, and then you have enjoyed it. If you make NED then you have had a better time.
Sorry if this seems flippant, as I certainly don't mean it that way
Kiwi

Spazzyjanet wrote:Anyone with Stage 4 have some good news to share? Did you ever get to NED?
I need to hear good news. I need hope.

When you have a spare month or so
you are welcome to read my >9600 posts here since Feb 2008.
and please check out my signature

Stage IVa ? ... yup
NED ? ... AFAIK
still kickin' ass and takin' names 11 + years later

Cheers and best wishes
CRguy on the Journey

A couple of hours ago today I left my appt going over my first PET MRI since finishing treatment and was told it was clear. I started with 17 liver Mets back in Nov of 2017. The same Doctor that broke that news to me then told me today with a smile I'm giving you the best possible news you can expect. So absolutely there is very much hope. Stay strong you can can get through this.

Dan

See my replies yesterday to your "New diagnosis and scared" post. This is where you assemble the team that will get you to NED. Start going to different places and getting opinions until you are presented with the plan to rid your body of cancer. In my humble opinion, you can forget about local cancer centers - my experience showed they were less than worthless. A major cancer center that offers HAI pump treatment is your best option to not only get the cancer out, but to also limit the chance of recurrence.

Beating this awful disease can be done. There are plenty of folks on this board years out from a stage IV diagnosis. And I have to believe for every one person on here there must be dozens that aren't - they're living their lives.

hiker

I have been at this for over seven year. I was a BAD stage IV (my CEA was over 2,600 when diagnosed in 2011) and my liver was FULL of cancer in every lobe and there were suspicious nodules in my lungs. My children were 4 and 8...and I was the only working parent...who also supported my Mom. I got lots and lots of opinions...and saw many doctors. Dr. Kemeny at MSKCC saved my life with an HAI pump to my liver. I had lots and lots of chemo during the whole process and 11 RFA's to lung mets as well as a liver resection and resection of one lobe of my left lung. I have most recently been treated by another doctor (you have to find the right treatments and doctors for yourself...be your own advocate) and I am receiving Keytruda (immunotherapy off-label.) As of today, my CEA is 1.0 and I am NED. There is hope. There is hope!
Cynthia

There are lots of survivor stories and there is always hope. I was diagnosed as St. IV almost 4 years ago and 2 surgeries, 30 chemos, 1 SIRT, 1 biliary stent placement, several immunotherapy sessions later I am NED. Wasn’t easy but most things that are worth it aren’t. Hang in there.

Another long term (6+ years) stage IV survivor here. It sounds like the disease in the liver is limited in your case, so hopefully resectable. If it's not resectable, I would try to find a center that offers HAI to hopefully get it to that state.

Still here, still NED after rectum, colon, liver, and lung resections. It can be done, and, there are some survivor stories that you won't hear about because we tend to take a break from the ColonTalk and live life to the fullest. We chime in and offer support when we can.

Dig in your heels and keep fightin'. Hopefully you qualify for a liver resection.

best to you,
Rob

Everything I went through is in my signature. Please ask if you have any questions.

See my signature also.

There is hope for Stage 4 folks.

My husband's story is in my signature. So far, so good!

and here's a one! Just past the 5yr mark, despite bleak prognoses back in 2012.

Initial years were tough, but normal life has returned, mostly. Still visiting ColonClub occasionally, though less frequently then earlier in the battle. Anxieties have gone too. Fully aware how lucky I've been.

I hope you'll find the strength to take things by the day too and that you may celebrate each success and every milestone.

Best wishes, L

martd wrote:A couple of hours ago today I left my appt going over my first PET MRI since finishing treatment and was told it was clear. I started with 17 liver Mets back in Nov of 2017. The same Doctor that broke that news to me then told me today with a smile I'm giving you the best possible news you can expect. So absolutely there is very much hope. Stay strong you can can get through this.

Dan

Thank you, Dan. I needed that.

mpbser wrote:My husband's story is in my signature. So far, so good!

Stage 4 to NED in a year! Congratulations. I hope very much to be where you are a year from now.