My dear husband newly diagnosed

[cheryl9850]

Hi! I am writing to introduce myself. Our story starts 1-1/2 years ago with my husband, Al, having abdominal discomfort, bloating, and a feeling of fullness. These symptoms took him through multiple tests, including an EGD/colonoscopy (which showed narrowing thought to be diverticulitis, etc.), CT scans, ultrasound, barium enema, barium swallow. He is now 57 years old. At 51, he also had the routine, normal colonoscopy. Fast forward to 10 days ago when he was in for laparoscopic removal of his gallbladder wherein they just closed him up without taking the gallbladder after finding extensive peritoneal metastases (carcinomatosis) and ascites and telling us he had "very bad" Stage IV cancer. Biopsy taken of peritoneal metastasis came back colon cancer. My heart is broken. He is so brave and keeps telling me that these are the cards we were dealt and we will have to play them out. All I do is cry, I can't help myself. I know I will lose him and we will not have the time to grow old together. We just bought our little "retirement" home in the country to start fixing up in order to downsize. It is right on a river and he loves it out there. It just makes me sad now. I know I have to be strong but the future looks so bleak for us that it is hard. He is my world and my life. I am scared. We live in SE Ohio, 3 hours from Columbus/Cleveland/Pittsburgh. The surgeon painted the most dismal picture. We talk to the oncologist at the local cancer center here tomorrow (who is wonderful and was my oncologist for my Stage I breast cancer 8 years ago).

After much research on this site, I am hoping he can do chemo here to knock back the peritoneal metastases/ascites in order to do HIPEC so that we can have some time together. This would be about our only hope right now I think. He is very healthy otherwise with no other disease. I sit here crying my eyes out. He is out golfing (which I am glad of). We will need to tell our two adult boys (ages 26 and 28) this week when the oldest comes home from school in Houston. I grew up next door to my husband and we have been married 30 years. He is the only love I have ever known. He is my man and I can't imagine life without him. Please help me with this heartache.

[Lee]

Hi Cherly,

So sorry for the reason you are here, but you will find a lot of informative people here, and lots of support.

Yes, do get a second opinion at a major cancer treatment center. And if possible, you might want to get an opinion from Sloan Ketttering in New York City.

Don't give up the hope.

Lee

[Don.in.Dallas]

Cheryl,

Just a note of support.

My cancer clinic utilizes volunteers as ambassadors to other patients. One volunteer, Ray, was diagnosed Stage IV colon cancer 14 years ago at the age of 64. Last Wednesday, now 78, Ray brought me orange juice and crackers during infusion - and hung around to tell a few stories. Ray gives me hope. We won't all enjoy Ray's excellent outcome, but Ray wouldn't be enjoying that outcome if he hadn't put up a fight. That is where we find ourselves.

You found Colon Club and showed courage in your post above. A great start!

Don

[JDinNC]

Hi Cherly,

So sorry you are going through this...but there is hope. As for stage 4, let's face it..it's the last stage but don't let the " "very bad" scare you. There are many here that are stage four, like me, that are doing fine. Just remember, everybody's situation is different no matter what stage you are at. So hang onto the hope that he'll do just fine. Also, don't start googling for information...because it's so far out of date. Get a second opinion, many here were told there was no hope, but you just have to find a oncologist who is willing to try...and there are ones out there.
Other will post soon with their stories along with advise.
As for you....breathe....

Best of luck

Jan

[orcasres]

Hi, Cheryl,

I am so sorry you need to be here, but you have come to a good place. With a situation as difficult as peritoneal mets you should get a second opinion from a major cancer center. It is a difficult condition to treat, but there are folks on this board who have had HIPEC and are doing well. You do have to deal with the hand you are dealt, but you can deal with it as aggressively as possible. Good luck with your onc visit tomorrow. Lois

[NedPlease]

So sorry this is where you've found yourself but this forum will be a tremendous source of information and support.

Assertively seek the best opinions from the best cancer centers.

I'm particularly pissed that your husband was compliant regarding the colonoscopy at age 50 and still ends up a stage four. The anger must be overwhelming.

I'm sorry any of us has to be here but there is hope.

N

[peanut_8]

Cheryl, is it possible for you to see someone at Sloan Kettering in NYC, or MD Anderson in Houston? Those are the top 2 cancer centers in the US, and most likely to be able to help.

[lauragb]

Hi Cheryl,

I'm really sorry to read about your husband. I also live in SE Ohio so I wonder if we live near each other. I do see a local oncologist but for surgeries have gone to Cleveland Clinic. I understand they do HIPEC there. I agree with the others about getting second opinions. My local oncologist is willing to work with other centers. Maybe yours is too or maybe it's even the same person......if you are interested I can send you a private message so we can see if we are in the same area.

Sending hugs to you.

Laura

[orcasres]

Cheryl,

I was going to mention Cleveland Clinic, but I was not sure about their expertise with HIPEC. (I lived in Cleveland in the 70's and am really impressed with how Cleveland Clinic just continues to expand its excellent services and to give live back to the neighborhood where I used to teach high school). That would probably be a much easier distance for you to manage with your husband. Lois

[bitchslapped]

Yes, it is a very bitter pill to swallow after having had a clean colonoscopy. That was also the case w/my DH. I remember the sunken feeling, the grieving began that day knowing we would not grow old together, our dreams of retiring & traveling together in the RV shattered. I couldn't let him see that so I sucked it up, swallowed it & from that day forward it was not about me. But that was a long time ago. Now my DSS DX Stage IV @ first colonoscopy. Just know, though all of our situations are unique, that we understand & hope that you will find strength or some degree of comfort here. We all are or have been scared. And now you have to tell your sons. My heart goes out to you. You are not alone here. In addition to the medical information you have discovered here, there is an ongoing thread: Wives Of Husbands With Stage IV Colon Freaking Cancer which you may find helpful with managing day to day from the caregiver/emotional end of things. Sounds like you are getting on top of things medically speaking. The emotions, try not to give into them, rather channel them into the drive to help your husband, as they're yours to carry right now, not his. Seek help here or anywhere for yourself, of course, we're here. Your feelings, fears are real.

Never give up hope, let us know how you & your husband are coming along.

bs

[raym]

Go got http://www.hipectreatment.com to locate surgeons that do HIPEC. I recall one or more people on this board having surgery in Pittsburgh. I had mine local to me in Baltimore (numerous hospitals there do it). I would check out this option as soon as you can, as doing chemo first may not address the peritoneal mets that well. Typically you would send in disks of your scans and reports, history to the doctor(s) and then they may want to do their own scans once you get there.

[Maia]

I would check out this option as soon as you can, as doing chemo first may not address the peritoneal mets that well..

Yes, agreed.. HIPEC at Cleveland: http://my.clevelandclinic.org/services/ ... gery/hipec