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Stage IV Signet Ring Cell Colon Cancer

tmhrch
Posts: 1
Joined: Jul 2018

I was diagnosed with Stage IV signet ring cell colon cancer (in the sigmoid colon) in Oct 2017.  Tumor was quite large and had exploded which is what caused it to be found but the surgeon was confident she got all of it plus the other 2 tumors that were on the peritoneal (sp) wall.  My official staging is T4aN2aM1c with extensive peritoneal invasion.  I just completed 10 rounds of FOLFOX (the oxy was reduced after the 4th treatment and completely removed after the 7th treatment due to really low plateletts and nuetrophil counts and poor liver function).  Had a scan in July that was clean and next one scheduled in October. I still have absolutely no appetitie and feel a little yucky after I eat but I am enjoying staying awake past 5:30 and not sleeping the days away!

I keep trying, but cannot shake this horrid feeling that I don't have long left.  Nothing seems to let me forget.  There is not a lot of "nice" things to read about this type of cancer.  Does anyone else out there have much experience or knowledge about signet ring cell? 

Although the surgeon/oncologist says each patient is different, they haven't treated a lot patients with this type of cancer....the 2 she current has, 1 is doing chemo for life and the other is going on hospice.  I just turned 48 and the thought of doing chemo for life doesn't sound like a life.  I think I'm just a little down right now.  I have to keep a positive front for my family and work....at times I don't want to but everyone worries more if I'm down. 

Any advice is appreciated.

Tina

plsletitrain
Posts: 271
Joined: Jul 2017

I hope you take comfort in knowing that there's a lot of us facing the same fear/feeling.  Mine is not signet, but the thought of not having much time left also consistently haunts me.  I try to forget it at times if I can, its like the elephant in the room.  I try pushing it down the farthest pits of my brain but it keeps coming back.  What I do is well, I just accept that its happening now, stay vigilant, and pray that I still have more time left as I still have young kids.  I know we sometimes hope this is all just a nightmare, and if it was, please wake me up already.  

Its good that you are coordinating with your doctors well.  Try to avoid the internet because it might just scare you.  Its good to be proactive but if you think it does you more harm than good, avoid it. 

We're here for you.  Take it one day at a time.  Believe that you still have a long life ahead of you, the body will follow.

plsletitrain
Posts: 271
Joined: Jul 2017

I know they say signet is a bit aggressive, but I've read (I think its from this forum) a signet cell ring survivor who lived on for so many years after his docs gave him his expiration date.  I think it was John.

Mikenh's picture
Mikenh
Posts: 798
Joined: Oct 2017

I have a CEA test later today and the last two tests bothered me (and my oncologist) so I worry about recurrence as I'm sure everyone does to some degree.

Signet Cell is associated with less favorable outcomes and isn't common but I've seen threads on another forum with people that have survived it.

 

mountainhiker
Posts: 68
Joined: Aug 2018

Although I don't know much about signet ring cell cancer, I do want to encourage you to keep searching for an answer.  One thing about your post that struck me was the statement regarding the number of patients with signet ring cell cancer that your oncologist is treating.  If there's one thing I've learned over the past year and a half, it's that a large cancer center sees many patients with many different types of cancer and therefore they have expertise in areas others may not.  

mountainhiker

Trubrit's picture
Trubrit
Posts: 4520
Joined: Jan 2013

If this is how you feel, no amount of pushing it down will work, so you accept it and decide what to do with it. 

Say, 'I don't think I've got long left on this earth, so what am I going to do with that time?'  Then decide. Are you going to withdraw from the world or are you going to run with it? 

So little time and so much to do, so do as much as you can, and then, when you realize you're still around in, say five, ten years, look how much you have done. 

Deciding on Chemo for life must be very hard. Several here have done just that, and I hope they are along soon, to help guide you, or share their expereince. 

Being on this forum will be a great help. Jump right in with both feet. 

I wish you well. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 561
Joined: Apr 2017

Trubrit says things so nicely, poetic even.  One thing that helps me is to meditate on mortality.  I know it sounds a bit counterintuitive, but confronting mortality head on and thinking about it for a dedicated time every day takes away some of its power over you.  None of this is easy, but at least you are among people who understand and deal with similar issues.

Jeff's mom
Posts: 18
Joined: Dec 2016

Tina, I have SRCC of the colon with mets to the bone (specifically, the right hemi-sacrum).  I have had several courses of chemo, radiation to alleviate pain, and am now on Keytruda.  I was diagnosed in January of 2016, and am going strong now.  I do have a whole lot of low back pain, but my CT Scans and PET Scans don't show any increase in the size of the mets.  As long as I can control the pain, I'm happy.  You are right....the prognosis is grim.  Keep your chin up and keep praying.    Best of luck and God Bless You.  Also, happy to see Trubit is still kicking.  

Sondra

Trubrit's picture
Trubrit
Posts: 4520
Joined: Jan 2013

Yep, I'm still around and kicking (butt). 

Its great to see you here, and especially to hear that you are going great.  

May you continue to do great, for a very, very long time. 

Tru

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