GIST Support Wiki

 
My Doctor, My Hero

We all need to have a hero. We all need to feel comfortable with the doctors that we choose. Please read these stories and add yours!! WIKI Team



Contents

My Doctor My Hero

by Lon Garber 10/10, posted with his permission

When I hear stories of insensitive and unresponsive doctors,it makes my blood boil, as I'm sure it does for most of us. Still, it is important that we share our doctor experiences so we all gain knowledge and wisdom in how to deal with doctors that don't give our cases the priority we feel they deserve. The interesting thing to me is that for some patients their doctor is a hero, and for other patients with the same doctor, he or she's a goat.

That reality underscores for me that a doctor-patient relationship is a personal thing and it just has to click. Medical competency isn't the only consideration in choosing a doctor. Personal compatibility is also an important criterion. The same doctor can be a cold fish to one patient and warm and caring to another. I fired my first oncologist because she was nasty to my grandchild. For me that was a valid reason. I didn't care about her medical credentials. Any doctor that doesn't at least pretend to like my grandson fails my compatibility test. Likewise, I rejected a surgeon after a ten minute consultation, because I didn't like his attitude and I didn't want that attitude touching my body with a knife.

That being said, I think it's equally important that we share our "My Doctor is my Hero" stories. They provide encouragement to all of us. For most of us, we can honestly say that our doctors saved our lives.

For me, Dr. Warren Kortz (Denver) is the finest, most competent and caring surgeon in the Universe. He did for me what several other doctors and surgeons swore was impossible. He's my hero for life. He not only saved my life, he cared enough to go the extra mile and save the quality of my life. For that I'm eternally grateful to him.

Lon (Grateful for every Day) Garber



The Ideal PCP

by Marina Symcox

The number one thing you need from a PCP is a guy who is highly accessible on quick notice.

You need a PCP who is high energy, very pragmatic to get the problem solved in the most common sense way, extroverted, and who can use a well placed phone call to charm the socks off of academic doctors or nurses at far away big cancer centers in order to deal with a bureaucracy problem that you might have encountered.

You want a PCP who can quickly learn the "Cliff Notes" version of your GIST. He may never learn more than that, but the Cliff Notes version is good enough for his role. You need a guy who will make house calls too, including house calls just to negotiate your emotional attitude should things be going very wrong with your cancer situation.

Dr. Chip Cooper, DO Bristow Oklahoma. My PCP is a DO, who is a family-sports doctor. He treats all of his seriously ill patients in the manner I described above. If he leaves town for the weekend, he calls his list of seriously ill patients to ask if they need anything or medications before he goes. Over the years, he has talked to various GIST expert doctors on my behalf, and I have heard feedback from these experts how impressed they were with the PCP. He is not a laid back person.

At this point, all of my major tests and CT scans are ordered through my PCP and not my oncologist, because that arrangement is easier for me since the PCP office is so immediately responsive including giving me the results over the phone right way.

You need a dynamo kind of guy who acts like the quarterback, and who ultimately is more in charge of the bigger picture than the oncologist, surgeon, or anyone else but you. You are the head coach.



Our 3 Hero Doctors

By Donna Capps

Ron started his GIST journey in July 2005, with a massive GI bleed that just about killed him. We live in small town Western Montana, far from a Major hospital. HOwever, there are 3 local hero docs in his story.

First there is Dr. Kelleher at Marcus Daly Hospital, that saved his life in the ER that awful afternoon when I did not know if they could get the bleeding to stop as Ron was literally "circling the drain".

Next, there is Dr. Luke Channer, our young general surgeon, who knew what GIST was (even though I did not) and exuded confidence that he was the right surgeon to handle the ruptured GIST tumor. He did a GREAT job!!!

When Ron was in the hospital, our PCP that we had been seeing for 5 years, "dropped in" daily to see him. He spent about 30 seconds, did nothing as the surgeon was the attending doc. After Ron was discharged, we went to make an appointment to discuss what we needed to do next and were told that this doc did not want to treat him anymore (??) and promptly released him with no explanation. Then we got a bill for a ridiculous amount for his "hospital care". Maybe he was afraid of the GIST diagnosis, we never found out. We were shocked, but if this doc wanted to be a jerk, so be it. I made a call to another practice and enter another local PCP, Dr. Dave Croteau. Although we had never met before, he said fine, no problem, happy to do anything I can to help. He readily admits that he knows very little about GIST. He is happy that Ron sees a GIST specialist as he says he does NOT want to be the General in this army. He communicates with the specialist is here to order tests, write prescriptions, deal with the side effects, is here to talk anytime and happily and willingly does anything that he can do to help. (There are other docs in the practice, that also are there is an emergency arises when he is not available.) This is the kind of doc that everyone should be so lucky to have. I heartily agree with Marina, having a GREAT local PCP should be a high priority.

These are our 3 Hero docs.

Donna Capps



My 2 Doctor Heroes

By Bev Shirts

I should write up my favorite doctors things. I kind of did, in "Bev's Tips, Medicine and the Web" on the New Patients and Essay pages of GSI, but I could dedicate a page to my two favorites.

Dr Fahey, my Internist PCP who immediately sent me for an ultrasound just because I knew something was up. My only real symptoms? Constantly tired and the night before I had awakened to projectile vomiting, something that had never happened to me before. Another doctor would have probably prescribed OTC stomach remedies. Not her. Bless her! We found my large tumor while it was still behaving, and 10 years after surgery I am still cancer free.

Dr. Blanke, who busted his a.. saving one of the last places in the Phase II Gleevec clinical trial for me (the same trial Marina was in at OHSU) because a radiologist read my scan backwards and thought I had new tumors on the other side, and on my only remaining adrenal gland. Then for years, though he rarely ever saw me, filled in as PCP after Dr. Fahey moved away, and since I had a run of really bad luck with PCPs not understanding my lack of spleen and the serious complications I was having. He also, for years, quietly and without fanfare or recompense, helped people and doctors, via me, and the web with their little-understood cancer, GIST. At all hours of the day and night. He was also one of the first doctors to support GSI and write an "Ask the Physician" blurb for us. Actually, he was the second one, after my friend Dr. Jim Turner wrote the first one about Clinical Trials for GSI.

He will always be one of my heroes, as will Dr. Demetri, a man I have never met, but who has saved several of my friends, or given them extra years with their loved ones, and also helped people via the web. We've had quite a relationship via emails over the years, less now, when so many people can finally find information about GIST themselves.

When we started GSI, the doctors who understood GIST were few and far between. They did the heavy lifting for many around the globe, and saved countless lives of people they never met, let alone were paid for helping.



Our Hero Doctor at Dana Farber

By Anne Coffey

It's so difficult to explain how my husband and I feel about his oncologist, Dr. George, at Dana Farber. We feel as if she is our friend, our partner in this journey. A busy, busy woman — she never makes us feel rushed. She outlines all our options, discusses the pros and cons, is not afraid to say "I don't know." She laughs with us, remembers where our children live, knows when to be serious, when to be jovial. One of her great characteristics is that she is enabling us to "live" with cancer. For example, we like to travel to visit our kids on the other side of the country and she makes sure those things happen by working with us to tweak our appointments with her, even calling us long-distance to check on how we're doing. We notice how she interacts with her staff and interns and we benefit by the positive atmosphere that is created among them. It's hard to imagine looking forward to a doctor's appointment, but we do! Thank you, Dr. George and everyone at DFCI.



My First Doctor Hero

By Vicky Zuber


The first hero I ran into with all of this GIST stuff was Dr. Nikolay Mindadze at Wilmington Hospital in Delaware and Christiana Hospital. The first night, when my tumor exploded, he suspected that it was GIST. He had to convince the oncologist and embarked upon that task like a real pro! He is a doctor working in the USA from the Republic of Georgia on the Black Sea. I have had other doctors say, "GIST, what's that?" But, this doctor knew what he was encountering. Don't know where he is now. Can't seem to find him anywhere.

Hugs and Prayers, Vicki ZZZZ