No Stomach Removal And Need Advise

Hi,

My name is Samantha and I am 27 years old and my husband, Dan, 35, was just diagnosed with stage IV stomach cancer three weeks ago. I am at a loss for words. My husband was scheduled to have a subtotal removal of his stomach, but when the surgeons went in to remove it, they had found that the cancer had spread to his abdominal cavity. So they decided not to remove any of his stomach. SO I clearly don't understand why. They told us that normally if they had known it had spread that they would not have even considered surgery. So it's like he had surgery for no reason. I am so mad about this. So instead of surgery they said his cancer was incurable and said chemo was the best thing for him. Yet, before the surgery, he had a CT scan and it did not show any spread of the cancer, They said it was contained to the stomach only. How can this be? Would they just lie about his cancer for the insurance sake? Maybe I am being a little paranoid, but this seems a little werid and unususal to me. Now it has been a few weeks since his surgery and he is about to start chemo and I am so scared of its side effects. He will taking Taxotere and oxyioplatin. Have any of these drugs been successful for any one out there? Or is it best not to take these chemo drugs and look for alternative treatments instead?  I just need some advise on this situation. Thank you!!!

hello samantha. sorry that you and your hubby are on this journey. it's a tough one. many people have had experiences like yours..they will open up a patient to do surgery and see that it has spread or other issues have appeared that weren't picked up on scans...so they close up and so chemo or radiation.

read as much as you can. there is so much info on the internet. get 2nd opinions and 3rd too if you need to. be sure to ask as many questions as you can when meeting with the dr's. if you don't understand something, have them explain it til you do. see if the hospital has a cancer navigator. it is someone who can help you, give you lots of info and help make appt's for 2nd opinions etc.

my father was diagnosed w/ stage IV last july. his has spread to his lymph system, colon and mainly his liver. but he is still doing well. he was on oxalipilatin and xeloda for about 3 months. he has taken a big break and will be starting back up soon. we have seen some really great results. we just hope it continues.

my thoughts are with you guys. stay strong and never give up. do whatever you feel is best. be it alternative or conventional medicine. many people have had great experiences with both! take care, kris

Hi Samantha~

Lippy Girl gives very good advice.  You and your husband need to understand as much as you can in order to make good informed decisions.  If you feel your docs are not making things clear, either keep on them to explain to your satisfaction or find one who will. 

Being diagnosed with cancer is a scary thing, especially when you are so young.  I was diagnosed with stage II colon cancer in January of this year at 44 years old.  I'm lucky that my docs have answered every question I've ever asked to my satisfaction.  I feel 'in the drivers seat.'  Maintaining a positive attitude is also key.  But doing that is impossible if you have millions of unanswered questions.

It's been my experience that here on this board is an amazing place to get good and real information from ones who've lived it either as a patient or caregiver.  The advice is invaluable.  Know that we are all here to help you and your hubby in this journey.

Please keep us updated and know you'll be in the thoughts and prayers of many here, myself included.

Stacey

So sorry for you and your husband.  This is such a tough pill to swallow but you need to stay strong and as the others have already mentioned, you need to have all your questions ready when you meet with the doctor and don't leave until they explain/answer all of your questions/concerns.  My dad has stage IV and he was deemed inoperable when he was first diagnosed in Dec last year but since then he has had 6 treatments of oxaliplatin and epirubicin and also taking daily oral xeloda and they recently went down with a scope and told us that the tumor in his stomach has shrunk considerably and he is scheduled to have a CT scan on Apr 1st to see if he can have surgery.  Now even though my dad has mets to the liver and lymph nodes, they are still not ruling out surgery.  PLease keep in touch and let us know how your journey continues and in the meantime please be good to yourselves and just take one day at a time. God bless you and you are in my prayers.  Lila.

Samantha and Dan,

You are both in our thoughts and prayers. Your post took me right back to a year ago March 19,2007, when my life partner Rick was opened up for total gastrectomy and closed back up with a G-Tube hanging out of his abdomen. We had so convinced ourselves that he would wake up with no stomach and no cancer, it was devastating when the surgeon came out so early. We have had THE SAME EXPERIENCE as you. I understand your anger, it is normal, thinking about insurance fraud etc.  The reality is that cancer cells are very small, and tumors or lesions smaller than about 2 cm. will not show up on scans. So they must do a laproscopic procedure prior to surgery to see if there are "floating cottons" running around in the abdominal cavity.

If there is any good news, I know you can't see it now, we went on chemotherapy drugs Oxaliplatin, Epirubicin, and Xeloda. IT HAS BEEN A GODSEND. We are a year down the road with minimal side effects, we have gone on holiday just about every three weeks in betweeen chemo treatments, and Rick is still feeling GREAT. That awful G-tube fell out of his abdomen in May of 2007 at my aunt's in California while we were sleeping. I remember waking up terrified when I saw it laying on the mattress, while his response was "Thank God that fell out". What a riot. It was a pain in the arse to clean, and while he always wanted an 8 inch hose, that wasn't it. (Humor gets us through a lot, sorry) We have now done 16 chemo treatments over the last year and still going strong.

You are both so young, my heart is breaking for you both. It will take some time, but you will be able to get your heads around this. Read everything in the "Stomach Cancer" section of this board as there are a lot of people who have traveled down this road ahead of you. While most of the news is devastating, there are some good news stories as well. Make sure you are comfortable with your oncologist, honest and caring, or get another one. You didn't say where you guys live, there could be some great referrals here on the boards. Remember you need to be a advocate for Dan and don't stop until you understand everything.

Holler out if you need advice or an ear, there is a lot of great advice here at Cancer Compass. Hang in there, the shock will pass with some time and you can move on to treatment and living your lives to their fullest. Every day is a blessing and you will find your attitudes toward life changing a bit.

Peace and Love to you both,

Scott

Samantha, I can relate to your situation. My husband 50 has the same thing. He was diagnosed in October so I'm a little ahead of the game it is a ride but you will be okay. E-mail me if you want to share information.