Newly diagnosed

[Roswel1]

I was just diagnosed with stage 4 colon cancer which has spread to the mesentary and the omentum. Not a surgical candidate because of a “tangled” mass blocking access. Likely the omentum, but not sure. Getting ready for Chemo after having a port placed and a Pet Scan done next week. So very scared. Don’t sleep much anymore.

[Wexford1968]

So sorry to hear this, I just recovered from stage 1 colon cancer I was very lucky it was diagnosed early. I will pray for you

[Roswel1 in reply to Wexford1968]

Thank you.

[WthrMtsfan712 in reply to Roswel1]

I'll be praying for you, too. If you don't mind me asking, what types of symptoms were you experiencing before you got diagnosed? Because I suspect very strongly that I have this terrible disease as well and haven't been able to get down to the bottom of things for over a year now. If I have a tumor obstructing my bowel, do you think I'd be a more likely candidate for surgery, even if that means I might have to wear a bag permanently?

[Roswel1 in reply to WthrMtsfan712]

I had a colonoscopy in December 2018 which came back clean. Since August of 2019 until now I lost 47 pounds. I would eat a little and be full, not much of an appetite. Lots of pain in different parts of the abdomen. Hot water bottle would help. Belly would feel bloated and hard. Doc said that it was likely constipation. Had abdominal Ct in August 2019 which came back clear. Never had any blood in stool or big change in bowel habits. Nagging pain continued. Finally had another Ct 1 month ago and the cancer showed up in several abdominal areas. One of my friends had a bowel blockage successfully removed without needing a bag . It is not an option for me though because the cancer is obstructing access from the abdomen. Everybody is different. A Surgeon would be the right person to evaluate your situation. Best of luck and keep on pushing for answers,

[WthrMtsfan712 in reply to Roswel1]

Thanks for letting me know what your symptoms were. I really haven't experienced any abdominal pain since my symptoms began in August of 2019. However, I had a change in bowel habits and was dealing with blood in my stool for about 6 months. The bleeding stopped in January. But, since around June of this year I've been dealing with a lot of gas and a very noisy stomach at times. And as of late, I've been experiencing more constipation again, which happened last year, too. And while I still have an appetite, I, too, can't really eat as much as I used to, given the constipation that I'm suffering from and that I can't empty my bowels as well as I used to be able to. I have lost about 55 pounds since my ordeal started. Although, I have made a lot of dietary changes and exercise almost everyday. What did your blood work look like before you were diagnosed? Because my most recent blood work results were pretty good. I still continue to believe everyday that I, unfortunately, have some type of colorectal cancer. However, I also have endometriosis and sometimes wonder if that is what is causing my problems and not cancer. Worse yet, I'm no closer to getting down to the bottom of things than I was last October. I just feel so strongly that I have some type of bowel obstruction, though, unfortunately and wonder if I'll be able to get surgery for it without having to wear a bag for the rest of my life.

[Roswel1 in reply to WthrMtsfan712]

My labwork was always very good until just recently. Now my liver values are getting bad and my glucose is going up. I had Endometriosis also until Menopause.

Are you going to have a colonoscopy done? It will answer so many of your questions. I know that the Prep is a pain but it is so worth it getting answers. Looks like many members here had colon surgery without needing a bag and for others it is only temporary.

[WthrMtsfan712 in reply to Roswel1]

Thanks for letting me know what your blood work looked like prior to being diagnosed. I really do appreciate it. I hope to be able to eventually have a colonoscopy. But, I am worried that I may not be able to completely empty my bowels for the procedure, even with the prep, given how constipated I've been lately. It is a real concern of mine right now.

[Wexford1968 in reply to WthrMtsfan712]

You probably will need surgery but I had it done and I’m completely cured now, you might require chemo, but that depends at what stage your at, good luck and god bless

[Roswel1 in reply to Wexford1968]

So glad for you. Thanks for the encouragement.

[Nicole_GCCA Partner]

Dear Roswel1 ,

Thank you for sharing and I'm so sorry for what you are going through. We hope you'll be able to find support and friendship in our online community.

Do you know if you have had biomarker testing performed? Biomarker testing is critical because it gives your healthcare team important information that helps determine which treatments are most likely to be successful for you. We have more information about biomarker testing on our website: knowyourbiomarker.org . Biomarker testing allows for precision (sometimes called personalized or targeted) treatment. Many of these treatments are FDA approved, and others are currently available to patients with certain biomarker types, via clinical trials.

Be kind to yourself and allow time to process. Medicine is continuing to advance, particularly in colorectal cancer treatment. While it may feel this way today, hope is not lost. We are here for you.

If you let me know which country you are in, I can also look to connect you with one of our member organizations that provide a variety of services to patients and caregivers.

Please keep us posted, we're here for you.

~Nicole @ GCCA

[Roswel1 in reply to Nicole_GCCA]

Thank you so much for your encouragement and information. My Oncologist mentioned to us that my cancer cells from the biopsy would be tested against certain immunotherapy medications to see what they are susceptible too. They are also doing DNA testing. I always felt that knowledge is power and I really want to read up on the information you suggested.

I live in the USA.

[Nicole_GCCA Partner in reply to Roswel1]

Roswel1 ,

Did you have the Pet Scan yet? And if so, did you get the results?

Also, have your biomarker/genetic tests come back yet? These results can really help determine which treatment may be most effective (and just as importantly, which treatments are not likely to be effective.) Also, there are many clinical trials available based on results of your biomarker testing.

Please keep us updated when you can.

We're thinking of you and here for you,

Nicole @ GCCA

[Dalph87]

I'm so sorry to hear that. How old are you?

Although If chemo works well to shrink it then surgery could still be attempted and have a curative approach if everything goes well. Stage 4 sometimes can be treated as stage 3 with chemo before surgery or after.

Keep us informed and don't lose hope.

[Roswel1]

I am 68 years old. Thank you for your words of encouragement.

[Dalph87 in reply to Roswel1]

If you respond well to treatment you can still have many years ahead, usually for stage 4 is 2-3 years (with treatment) but you are not a number, many people survive for much longer.

There's chemo, radiation and immunotherapy, all will buy you more time and hopefully keep it at bay for years.

Every person is different and responds differently to treatments, although I think surgery should still be attempted if possible, especially if chemo works and shrinks the tumors, debulking the mothership is never a bad thing and can buy you more time.

Discuss with your oncologist and get a second opinion too.

Also try to take care of yourself in the best way you can and minimize your other health problems (if you have them) so your body can focus mainly on fighting that.

Best wishes and again keep us informed.

[Martinmartin]

Hi Roswel1, sorry to hear about your diagnosis, but I hope you will have truly successful treatment. Your case is quite unusual though. Was the caecum and ileum inspected properly during the colonoscopy? Have the doctors repeat colonoscopy after your CT scan that found spread to peritoneum? Where is the original tumour located? Was it a flat one in the proximal colon? Or carcinoid tumour penetrating the outer wall? Because it is quite rare for combination of colonoscopy+CT to fail in such manner. Thank you! Stay strong!

[Roswel1]

They actually found the cancer in the Omentum first together with ascites in the abdomen. I had a laparoscopy next were the found it in the mesentary between the small bowel and the addominal wall. They also found an obstructing mass which did not allow them to visualize the pelvic area. Next they did a colonoscopy where they found a partially obstructing tumor in the distal sigmoid colon wall. Colonoscopy was stopped at this time. No path on the colon tumor as of yet. The path from the other areas showed undetermined cancer of gastrointestinal origin. Pet Scan on Friday. Not a surgical candidate at this time.

Thank you for your encouragement.

[Jackie020]

Can I ask which liver enzymes of yours were elevated? My alt and ast have been slightly raised (mild as my dr said) and an ultra showed no issue only slight enlargement. I have had stomach issues forever with loose stool but after an abdominal surgery it got worse and has been bad for 2 months now. I'm only 33 but my gi is doing a colonoscopy in Dec is rule out inflammatory disease. He said he doesn't believe its cancer but im convinced it is.

[Jeetpro]

I’m very sorry to hear that , many people are going through the same thing I will pray for u, u will get through this have faith and hope, Remember many people go through this and u just have to fight it, u got this !

[Roswel1 in reply to Jeetpro]

Thank you for your prayers and encouragement.

[Jeetpro in reply to Roswel1]

How are you doing ?

[Mell88]

I’m so sorry to hear yr news. It’s must be so scary for you 😢😞❤️

[GBP4L]

How are you doing? I hope well!

[Haptonvalley]

Im sending my prayers. God bless you x