linitis plastica

survivor2009 said:

Linitis Plastica Survivor
I was diagnosed on 8/7/2008 with linitis plastica gastric cancer at the age of 39. My tumor was taking up the majority of my stomach. Later that month I underwent a major surgery to remove my stomach and any other areas where it may have spread. I have a fantastic surgeon at the Allegheny General Hospital in Pittsburgh PA named Dr. Donald Atkinson. He was able to remove my stomach in one large mass. The cancer had spread to my spleen and one lymph node. He removed the spleen and several lymph nodes.
They conducted some genetic tests to see if I had the gene "CDH1" which has been directly linked to linitis plastica. This gene occurs randomly between a mother and father. They call it a 'misfire' of sorts. At any rate, my cancer was determined not to be genetic. They did tell me that this type has been linked to smoked foods. But you would have to consume massive quantities of smoked food. I love my bacon, but....that is not it. They also tell me there is no well defined known cause.
I underwent clinical trials where I had chemo and radiation. I just found out this past Tuesday that I am officially in remission. I must tell you that I truly believe you MUST have mind over matter in these situations. BELIEVE you will beat it....no matter how difficult it may seem.
My life will never be the same as I am still battling to gain weight and maintain my nutrients using a feeding tube but it is all worth it.....

Good lucki

info

hello survivor2009,

will you please talk to me so you can share more info on this disease with me? please feel free to text me: my cell phone is 585 200 0832

thank you

marina 

 

There is hope

I am a 49 year old male who has taken good care of my body and taken no medicine. What a surprise that in April 2017 I was diagnosed with Linitis Plastica. As you have already seen through your research, this is a grim diagnosis. My wife and I were terrified because all of the research and most postings indicated that there was only a small chance of survival. Though that may be true, it looks like I may have beaten the odds. Diagnosis was stage 2 with no spread outside the stomach and esophagus.

There is no doubt in my mind, that your medical team will greatly determine your chance of survival. Upon diagnosis, I immediately flew to Houston to meet with the doctors at MD Anderson. My wife and I then got multiple opinions from doctors, including the head of oncology in Taiwan where stomach cancer is much more common than here. Every doctor confirmed that the treatment recommended was correct so we went forward.

Treatment started with five rounds of a chemo regimen called T-Fox every other week. Next was five weeks of radiation. Finally, a total gastrectomy. When my stomach was removed, the cancer was 99% dead with no spread. The chemo and radiation did their job. Though I didn't like the idea, the surgeon was clear that total gastrectomy with a cancer this aggressive was the only appropriate surgery. All of the other doctors agreed.

Surgery was on October 3rd. Life is finally returning to normal after the surgery. The bad news is that the recovery has been much harder than I had thought. The good news is that it does get better and life is returning to normal.

Good luck to you.