Could I Have Linitis Plastica

I was wondering if anyone who has had or know anyone who had linitis plastica had any of these symptoms. I have acid taste, fullness after eating small meal, moderate hair loss, two swollen lymph nodes in posterior triangle region of neck rightside since July, bounding heart beat feels like it's coming out of my chest. No significant weight loss, vomiting, pain.

I have had egd, ct, barium swallow, blood testing, but they say linitis doesn't show up on tests well. I have even requested to be opened up for the search to see if something is going on they can't find. The doctor feels this is risky. He has offered a PET scan or the Edoscopic ultrasound. I feel like I am crazy sometimes but what if they just are not finding something in there?

One doctor at Cleveland Clinic that wrote he would be looking for linitis said there is no way no how after my EGD, CT, Barium Swallow, Blood tests that I could have this.  That is not what I have read so what do I do.  If you could please I advise.

Thanks  

Boy, you sound allot like I did almost 3 years ago. After 15 months of tests all with negative results, no weight loss but allot of pain with eating, they finally did an endoscopic ultrasound with deep tissue biopsy and found that I had linitis plastica. An upper GI, which had not been done until then, also showed the shrunken stomach (leather pouch). Linitis plastica does not show up on a PET scan. I describe it as peanut butter between two pieces of bread. I had months of chemo and I responded well to that. I was able to have my stomach and right adrenal gland (where it had spread) removed in March of 2007. Then I had 5 weeks of radation June-July 2007. I have lost 70 pounds total, but today I feel pretty darn good. There is a spot on my liver that they are watching, I have CT scans every 3 months. I have an endoscopy every 3 months also, as I have developed Barrett Esophagus, but I need to tell you to listen to your body. I wish I had pushed the doctors more. I knew I was really sick but they couldn't find anything significant at the time...now they know that the deep tissue biopsy and the upper GI could have given us the answers we needed if done earlier. 

 Never stop listening to your inner self. Always have hope and always believe that you are stronger than the cancer. I take it one day at a time, but I never stop believing in me!

 Take good care,

Marlene 

Thank you  so much for your reply, I had read your past postings on the board and was wondering if you were still fighting your battle head on and I am so glad to hear that you are. You are an inspiration to me. 

I did do the upper GI I think that is the first test they ever did on me which was about a year ago now.  It didn't show anything except a slight reflux. the stomach looked normal at the time. I don't have pain but have the acid taste and a lot of saliva all the time which I had read about people having a lot of saliva or liquid in their mouth and finding out they had linitis.  Did you have that?

I would like to have the EUS and deep tissue biopsy to be sure I guess.  Sounds like that is what helped you find your answer. I have no pain when eating or anytime at this point.  I will contact my doctor to get things scheduled.

 Thanks so much for your reply,

Summer 

Hi Summer

I'm so glad to hear that you have no pain when you eat. It sounds like you may just have acid reflux. If you've had the upper GI and it looked normal then you probably don't have linitis plastica. The upper GI with linitis does not expand and looks shriveled up. So I'm betting you don't have it, which is the wonderful news.

 I hope you stay on top of it though. You know your body...Just hold good thoughts and take good care.

 Tomorrow I have another endoscopy. I pray it is negative. i have Barrett Esophagus now, which is a pre-cancer and if there are changes it's not good. There won't be anything they can do at that point, but I won't go there just yet...

 I truly believe I'm going to beat this!

 Marlene  

On 2/28/2008 summertymz wrote:

Thank you  so much for your reply, I had read your past postings on the board and was wondering if you were still fighting your battle head on and I am so glad to hear that you are. You are an inspiration to me. 

I did do the upper GI I think that is the first test they ever did on me which was about a year ago now.  It didn't show anything except a slight reflux. the stomach looked normal at the time. I don't have pain but have the acid taste and a lot of saliva all the time which I had read about people having a lot of saliva or liquid in their mouth and finding out they had linitis.  Did you have that?

I would like to have the EUS and deep tissue biopsy to be sure I guess.  Sounds like that is what helped you find your answer. I have no pain when eating or anytime at this point.  I will contact my doctor to get things scheduled.

 Thanks so much for your reply,

Summer 

My mom too has linitis plastica.  She had a long time history ( 4yrs to be exact) of gastritis/esophagits) confirmed by multiple endoscopies.  Then in 5/07 she suddenly had diarrhea with a 15lb weight loss (down to 96 lbs).  She then had a CT scan that showed thickening of her stomach wall, and an endoscopic ultrasound, that showed thickening of her stomach with a negative biospy, and a PET scan that was negative.  Options were given to proceed with a laporoscopy or rpt the CT scan in 2-3 months.  Unfortunately we chose the later, and we rpted the scan, which did not show any change, and now my mom was maintaining her weight.

Then her gastroenterologist, did another endoscopy in August/07, this time he biopsied the stomach wall by taking a bite ontop of another bite.  And there is was STOMACH CA!  She then had a Laporoscopy, showing the cancer outside her stomach wall, in the nodes/peritoneum/omentum, thus she is not a candidate for surgery.  We had a total of 3 different opinions.

She has now completed her chemo and feels much better.  However it is so horrible to just wait and see.

In reply to your question, I do agree that a deep tissue biopsy or a laporoscopy with a biopsy of the stomach wall, will give you an answer.

My question to others who read this message.  Does anybody know an excellent agressive oncologist in Southern Calif?  That has some experience in this particular cancer.  I have made an appt with a surgeon at USC for the end of March.  But even more opinions would be great.