Mayo Clinic Connect
Hi there! Anyone been diagnosed with GIST Tumor in the stomach! Would love to hear from you!!
Welcome to Mayo Connect. I appreciate your post regarding a GIST Tumor. I was not familiar with this type of tumor and I found some information on Mayo's website. Here is the link to that information:
In searching Mayo Connect, I only found one person who had posted about this, her username is @mariafeeney. If you click on her username you can view her post from 2012. Perhaps she, or someone else, will respond to your post.
In the meantime, as you are comfortable doing so, can you give me some background on this diagnosis?
For example, what type of symptoms led your doctor to discover this tumor?
How long ago were you diagnosed?
What type of test or scan was used to diagnose it (from the Mayo article it appears that a CT scan or endoscopy is most often used to diagnosis this)?
What type of treatment has been suggested for you, i.e. surgery or medication?
I look forward to getting to know you better.
I'm inviting @wendyah into this discussion. Her husband was diagnosed with a malignant GIST (stomach tumor) nearly three years ago. I hope she'll join the conversation to share some insights.
Liked by Teresa, Volunteer Mentor
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I am a healthy specimen. Other than giving birth to 5 children, I had no reason to be admitted to any hospital.
2 weeks prior to Sept 6, 2018, I had an episode where I had a horrible black, tarry stool. I felt faint and weak but I ignored it, not really knowing the severity of what just happened to me.
On Sept 6, I had another episode, no bowel movement, but feeling faint and weak. I went to my PCP who did a blood work sample, where my hemoglobin was at 6 and my blood pressure was 90/60.
She immediately stated that I needed to be in an emergency room. I went and was admitted to the hospital, where I received 2 units of blood, a CT scan and an endoscopy. At first what I was hearing was I had a “bleeding ulcer” which was biopsied and results were benign for cancer.
When I was dismissed on Sept 10, 2018 from the hospital the term now was that I have a “GIST tumor”. Surgery is recommended. I have talked to a surgeon who have advised me that a second biopsy is necessary and depending on that biopsy, would determine if my surgery will be minor or major!! I could go to sleep with my stomach intact and wake up with my stomach removed. I am right now seeking a Gastroenterologist for a second opinion. Needless to say, this journey is challenging being a 75 year old woman on a Medicare advantage plan!
Sorry, I know this is wordy but I want input on this issue!!
Thank-you!! I am looking for insight on this condition….
I can certainly understand your concern, @anxious4nothing. You are facing a very big decision, that certainly could be life-altering and I understand that you are looking for some input and help. Being age 70 myself, I can understand your position a bit better. I can only share what I would do in your position.
You do not mention where you live, but I would certainly encourage you to seek your second opinion from a university medical center or a facility like Mayo (in Minnesota, Florida and Arizona). These types of facilities would have a good team of specialists who are best skilled in order to help you. Multidisciplinary systems, like I mentioned, would have the best knowledge, skills and research behind them.
How are you feeling now that you have had blood transfusions? Do you know the exact location of the GiST?
I feel fine on a daily basis. I have not experienced any adverse physical reaction other than the 2 episodes I mentioned. After the blood transfusions, I regained my energy and strength and live each day as I would normally. I am doing a minimal working job. No pain, no weight lost, nothing!!!! The tumor is located in the upper part of my stomach, right where the esophagus meet the stomach. I don't know how to go about getting a second opinion from places like a university medical center or places like the Mayo clinic. I am on a Medicare Advantage Plan, no other insurance and my funds are limited. I am allowed to go outside of my chosen medical group but I am at a lost on the protocol of doing this. I am looking to hear from others how this is done. I live in California…It is good to be sharing this and getting feedback from others. Thank-you so much…
I am glad to hear that you are feeling fine now, @anxious4nothing. That is a good thing!
You were wondering how to find out about getting a second opinion from outside of your chosen medical group. The best way to get that information is to call your Medicare Advantage insurance company.
You mention living in California. There are many university medical centers in California, however, I'm not sure how close they are to you.
Perhaps a friend or family member can assist you in making these calls and helping you to find the best place for a second opinion.
I wish you well. Will you keep in touch and let me know how you are doing?
I definitely will keep in touch. Thank-you for your input! This is really challenging me but I will survive through it….:-)
I understand how challenging it can be, @anxious4nothing. I have had 3 surgeries of the upper digestive tract (duodenal bulb) for a rare form of malignancy, neuroendocrine tumors. Each time I've faced surgery I've felt that the experience was way beyond my abilities to cope, but I've learned to ask and receive help in much of my decision making and the support has given me confidence to push on.
I hope that you find that same support experience!
Many blessings to you, @anxious4nothing
I was diagnosed with gist 3 years ago. It isnt always in the stomach. Mine happens to be in my pelvic cavity. There is a very good support group on facebook called gist international i would reccomend you follow as well. I have gone through gleevec and sutent and am currently on a clinical trial. Its important to know your mutations and type of gist. I am exon 9 ckit. Its important for you to know your miotic rate as well. I am inoperable but some patients are able to have a resection leaving them with a partial stomach. Dr jonathan trent is a gist specislist in miami fl. Does mayo have a gist specialist?
Liked by Colleen Young, Connect Director
Please make sure your surgeon has performed gist surgeries. Its different than normal surgeon. Always ask your surgein how many gist surgeries has he performed.
Jason sicklick is a ca gist specialist
That is important, @tara58, thanks for pointing that out. The experience of a surgeon (especially in treating a rare disorder) is very important.
I was told I have a 3 cm gist (biopsied by endoscopic surgery) and waiting am waiting for an appointment with a gastroenterologist. Are their gist specialist at the Mayo Clinic in Rochester, MN – cause my appointments time locally is to over 6 weeks for a surgeon and I don't even know if he's a gist specialist. Thx for your help.
Liked by Kanaaz Pereira, Connect Moderator
Hello @kakb and welcome to Mayo Connect. I checked on Mayo's website and they do have information about GIST. Here is the link, https://www.mayoclinic.org/diseases-conditions/gastrointestinal-stromal-tumors/cdc-20387715. There you will find a place to call about an appointment. If you call, they will undoubtedly give you information about specialists in GIST.
I have personally had three surgeries of the upper digestive tract to remove NETs in the duodenal bulb. I know how important it is to get a good surgeon.
If you care to share more about this diagnosis: How long ago was this diagnosed? What type of symptoms led to the EGD? What information has your doctor given you about this type of surgery?
I look forward to hearing from you. I hope you are able to feel good about your choice of surgeons. Having confidence in your surgeon is important.
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