I post this under "general board" because it does not seem to fit any place else. I just finished treatment for my second cancer discovered this year. I finished treatment for oral cancer in Feb, 2011, having started that one in Sept, 2010. Sept 28, 2011 I underwent stomach surgery (removing 1/5 of my lower stomach, resected to duodenum) for a GIST (gastrointestinal stromal tumor). It is totally unrelated to oral cancer or oral cancer treatment. It has been quite a year for me, and my family too. GIST is diagnosed in 3000-5000 people in the US, so is considered quite rare. It is a sarcoma, rather than a carcinoma. I had never heard of it before. It originated from the muscles in my stomach wall, growing outwards from my stomach. Most often it is gastric, though it can occur anywhere along the GI tract. Colonoscopy cannot show GIST. It is hard to diagnose, especially early. The good thing is GIST can be more easily treated than many cancers. Mine was larger, 8 cm X 7 cm, tennis ball size, located at the bottom of my stomach, causing havoc in my intestines from pressure. It also pressed against my stomach wall, creating an ulcer into the stomach, and a bulge, which partially obstructed my stomach exit. I have had many digestive issues this year, but doctors were unable to find out what it was until a CT scan for a possible kidney stone discovered a large mass in my stomach.

To cut to the chase, after an upper GI, an ultrasound (EUS), and an abdominal CT with contrast, doctors were able to conclude this was a likely GIST tumor. I found out yesterday (at MDA) that the mitotic field was "fewer than 1", which indicates an unaggressive tumor, and removal can result in a cure, actually with only 3 percent or less chances of reoccurrence. GIST tumors cannot be successfully treated with radiation or chemo, but there is a drug, Gleevec, that can be given, sort of an oral chemo, taken at home, that does not disrupt normal cells, just the GIST ones. My doctor, a GIST expert, does not think I will need it, there being side effects with the drug.

I know many on this forum have had second cancers, but this one is kinda "whacky". They think I have had it for years, possibly double digits. These tumors are considered malignant when they reach 5 cm, but because of my mitotic rate, it makes mine considered a better risk. I cannot tell you how much better I feel even just a week after its removal. I was on a nearly completely liquid diet through most of August and September, taking laxatives constantly, and with continually shooting pains in various places, probably related to tumor pressure on nerves. Before this past year, I had very mild symptoms, which I did not recognize as symptoms, but do now.

I worried so much about how this would affect my oral cancer remission, but I had my October check up and all was well. In fact I had been involved in lymphedema massage, and everyone (doctor, PA, lymphedema specialist) all thought my neck looked great. The specialist said she had it rated a 1B and now it is a 0. Moving two stages like that infrequently happens, she said.

Included in my ordeal was: the threat of classic stomach cancer, nodules which showed up on a chest xray taken in advance of my GIST surgery, checked out by a CT scan, which showed clear, an enlarged aorta shown on the same CT scan, checked out on Echocardiogram, which showed lesser issues, but good function, severe dehydration in the hospital following GIST surgery, along with more minor issues that more or less just aggravated me. I had little energy left to email people, talk to people, or post here.

I felt like a freak "getting" another cancer so soon after my tongue cancer, and it was easier to keep quiet about it than tell about it. I also felt considerable worry that I must have some bad genes, though I have been made to feel better that way because I have likely co-existed with this GIST tumor for so long. I do know many of you have had worse things happen to them, multiple cancers, and recurrences. I post this here not because I think I have outdone anyone that way, but that it might help others who are struggling with similar concerns, or who may struggle with them in the future.

I now feel grateful that I may "only" have oral cancer treatment side effects once again occupying my mind. Never thought I would feel that way. GIST can be far easier to cure than oral cancer, but it was such a drain on me during this year (looking back I think GIST was even part of my problems relating to chemo for oral cancer tx) that my burden seems a lot lighter. I hope and believe that this will continue.

Best to all who may read this.
Anne

Hey Anne - so glad everything is better now - two dances with the same devil is scary even though the second time around he seemed to have lost some of his bluster. It's time for you to heal! And relax - hugs to you! You're amazingly strong!

Oh my gosh Anne- you have been through the wringer! WOW.
Well I am so happy that all this is out of your body!

Wishing you only good health from this day forward.

XOXXOOXOXO Kate

Cheryl and Kate,
Thanks for the good thoughts, you two. Cheryl's unstoppable, and Kate, after your post about your life being so much better than you thought several years after your treatment, well I thought that was inspiring!
Anne

Anne, you're an incredible person. I wish you years and years of good health.

[quote=AnneO]I felt like a freak "getting" another cancer so soon after my tongue cancer, and it was easier to keep quiet about it than tell about it. I also felt considerable worry that I must have some bad genes, though I have been made to feel better that way because I have likely co-existed with this GIST tumor for so long. I do know many of you have had worse things happen to them, multiple cancers, and recurrences. I post this here not because I think I have outdone anyone that way, but that it might help others who are struggling with similar concerns, or who may struggle with them in the future.

I now feel grateful that I may "only" have oral cancer treatment side effects once again occupying my mind. [/quote]

First of all, thank you for an extremely well written and clear summary of what you have been going through this past few months- I am sure it will help others - even when not directly related to OC

Secondly let me congratulate you for getting through it with obvious grace. It reminds us all to count our blessings even though we have all been to some scary places already.

Thirdly, I would like to respond to your "freak" and "bad genes" comments. Your freak feeling resonated with me and I will print out and give to my mother who had a really bad couple of years with a diagnosis of breast cancer, a second UNRELATED breast cancer and THEN renal cancer - all 6 months apart. She will appreciate reading the experiences of someone who has also fought off unrelated cancers. So when Alex got sick immediately after her recovery, she spent a lot of time wondering what she had done to deserve such bad luck. She also worries she has passed her "bad genes" on to me and my sister (and guess my brother too). I think she has done us a favour. We will remain vigilant with our own health and can look to her as an example of triumph over nasty diseases. And ... I think her genes must be brilliant to have produced an immune system so good she was able to deal with multiple rounds of surgery, chemo and radiation as well as manage quite nicely with one kidney? That says good genes to me

David,
Thanks for thinking I'm incredible, I think I've fooled you--I just put one foot ahead of the other & it works. No more incredible than any of us who have been through these sometimes hellish situations. But it is a compliment, and I appreciate it--I certainly want those years of health!
Best to you to, may you be blessed with health,
Anne

Karen,
Thanks for a different take on the freak, bad genes thoughts . . . I'm sure others have thought similar thoughts when passing through scenarios as what your mother and I have. You are absolutely correct, there's just bad luck as well, and there is the strength of body to overcome it. Time will tell, of course. I might have thought of it myself could I have distanced myself from my illnesses. That's why we have a forum like this to help us see what needs to be seen. You did that for me. What a gift for this beautiful Saturday!
Best to you and your family,
Anne