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GIST Support International - Medicine and the Web
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Medicine and the Web

by Beverly Shirts

This was written quite a while ago, but hopefully it contains some good ideas for new patients, and maybe even a few tips for the old pros. Not all of my advice will work in all cases, but perhaps it will help in some. It also contains a bit of my cancer story and some of my favorite tips for dealing with scans, doctors, etc.

In August of 2000 I didn't feel well. I waited a week or two, but the exhaustion, nausea and a sudden bout of reflux while sleeping prompted my call to Karen, my fabulous PCP, Internal Medicine MD. As she, (and her nurse) knew me well, and knew I didn't call if it wasn't serious--they had me come straight in. As the nurse said, "We are booked solid Bev, but since it's you, you better get in here--we'll just fit you in somehow."

MY FIRST TIP: Make friends with ALL nurses, and support staff! Learn the names, and use them. These people know more, control more, and are more critical to your health than you know.

Back to my story. Karen sent me in for an ultrasound suspecting a gall bladder problem. The tech got all quiet. I arrived home after the 1/2 hour drive from the hospital and the phone rang. It was Karen. She was upset, staying in professional control, and told me they had found a mass on my left adrenal gland, on top of my kidney. I remember my words exactly. "So, let me get this straight, my gall bladder is fine--but I have kidney cancer?

Back to the hospital to pick up the (GAG!) barium for the CT the next morning. While chugging the barium I got on the web.

MORE TIPS: Wear no metal to your CT scan and you won't have to change into the gown. Put the barium in a sport-bottle with straw and chill well. Drink loads of water after the scan. Find a GE LS CT if you can--they are FAST.

That night I found out what an adrenal gland was. Studied how to read CT's. Started wishing for renal cancer over the adrenal cancer as the odds were slightly better. Learned all about Pheo's (long word--a rare type of adrenal tumor that mets when you touch it.) This side-trip may be saving my life today....as I found a surgeon who had dealt with several types of adrenal tumors and treated my (later to be discovered GIST) tumor as a pheo. No mets so far, and I can't help but wonder if this is part of the reason.

I got out an anatomy diagram from an encyclopedia and compared it to the CT slides on the web until I could place every organ

The next morning I had my CT. A stat report. My GP asked for the report only as she said she couldn't read CT's. The radiologist said "adrenal tumor." A second opinion said "kidney tumor." I said, "I want to see the scans for myself."

Had to go to the GP to see the report, so back to the hospital to see the scans.
ANOTHER TIP: Always go see your scans. Always get the report for yourself and read it. ANOTHER TIP: They must give you a copy of the report if you request it and sign for it and are there in person. No need to wait for your oncologist or MD to get to it and call you!

There are a couple of reasons for looking at your scans. The main one is I think it helps to picture what you are fighting. Another is it gives you a chance to see the radiologist as they usually want to be present when you look at the films. They SAY they can't discuss them with you--but the truth is, they WILL. IF you are respectful of the time, don't ask stupid questions, and LET THEM TALK! They see patients so rarely, that when you get to know them--they are FULL of useful information.

It's amazing what you can understand if your life depends on it. Another hint is that the questionable areas are usually circled--so it's fairly easy to look intelligent as you listen and learn. Find the circled areas!

In my opinion the radiologist is crucial. I found the best one through trial and error and meeting them while looking at each scan. If you find a good one, schedule on days they are working and request that THEY read your scans.

ANOTHER TIP:

GET COPIES OF EVERYTHING, and read them for yourself. Doctor's dont' always tell you everything, and you never know what you will learn, or when you might need that information. Have a dictionary handy. Don't forget surgical reports, hospital stay reports, labs, etc.

Some more things I have learned...

Surgeons recommend surgery.

Radiation Oncologists recommend radiation. Medical Oncologists recommend chemos. (MD's tend to recommend what they KNOW, and what they get paid for.)

GP's look what they can up, and then turn you over to whatever "expert" they think might help you.

That may or may NOT be the right "expert" for you.

HMO's figure out your "odds" and the cost effectiveness of treatment--BUT they will back down for an educated, determined patient. Same with many other types of insurance companies--the more you know, the more they will do for you.

Doctors are just people. They have fights with their spouses, they are paying off huge medical bills, and mal-practice insurance, their kids want Harvard, or their well just went dry. They are often over-worked, frequently distracted, and, at times WILL NOT admit that they don't know something.

Most MD's are decent people, but some are NOT. Some really ARE after money, some really do use drugs, and some really are completely incompetent--and yes, they usually can just change states and start over.

To give just three examples from my personal experience, one coked-up surgeon told me I should just go die, and one radiologist couldn't find my right kidney but did tell me I had a new tumor there, and one GP refused to prescribe antibiotics which landed me in ER overnight. (He didn't understand the dangers of not having a spleen and having a temp and sore throat, even when I explained it to him!)

In short--most MD's are good people, but not all. You biggest danger are the ones who don't look stuff up, or are too proud to admit they don't understand something.

I guess it takes fairly large egos to deal with people's lives and deaths--and whilst these egos are VITAL for a good MD, they can also sometimes get in the way of proper treatment for an individual patient. THEY MAKE MISTAKES. They are human. They DON'T know everything, and it is impossible for them to.

ANOTHER TIP: No one will care more about recent developments, side effects of treatments, and the minutiae of your cancer than YOU will.

When dealing with rare cancers that means the patients only real hope of proper treatment is education, and self-advocacy. We must take on e burden (frightening though it is) of dealing with our OWN care, and making our OWN decisions.

Setting broken bones is relatively straight forward.

Sarcoma care is not.

I went thru dozens of MD's before I found good ones.

I fired any with giant egos and an inability to accept MY ability to make my own decisions. I don't want a "daddy" type to make decisions for me. I want to LIVE and do it with quality of life. I could care less about offending an MD by asking pointed questions, or questioning their opinions. I also fired the ones not willing to do their homework.

I found a great surgeon...who consulted WITH me about my surgical options and vetted him with every single person I could find. He was a meticulous pro who took forever in surgeries as he was so careful.

I found that some surgical nurses didn't like to work with him because a surgery might take 9 hours with him, but only 4 with another MD. BUT, they all told me that if THEY were on the table they would want HIM. (this relates to one of my tips---make friends with EVERYONE--and learn their names! You will be amazed what you can learn about MD's!)

I nearly bled out. He saved my life. He treated my tumor so gingerly I wonder to this day if that is why I have no recurrances. He was happy to have an informed patient. He said it made his job easier. I had not only learned about renal cancer, but adrenal cancer and surgical options as well. He was relieved when I told him "Do the chevron." when he began to explain surgical options. I knew he needed the room to work--I could live with the giant scar.

ANOTHER TIP: You can read about most surgeries from start to finish on the web. Complications, options, etc. The more informed you are, the better.

My oncologist is Charles Blanke. Smart, informed, and able to listen to and respect a knowledgable patient, AND answer all questions, and sometimes even debate with me. We don't always agree--but we always respect each other. I found him after a long search.

He was another doctor PLEASED that the patient was informed.

ANOTHER TIP: IF IT BUGS YOUR DOC THAT YOU KNOW THINGS AND ASK QUESTIONS AND DON'T BLINDLY TRUST THEM--GET ANOTHER DOCTOR.

So far I have mentioned many ways the Web can aid you in your fight with cancer.

The most important thing I have found is a "Support Group".

The bluntness and honesty and information and experience you find here may save your life faster than an individual physician. Or even a half dozen of them. It may be shocking at first, to hear that not all doctors know what they are doing, or that what they have told you is not the whole story. Other patients experiences may be disturbing as well. Knowledge is Power. You need all the power you can summon to beat cancer.

Shared information is just one more tool for you to use. In the end though--you must decide for YOURSELF what you best course of action should be. No MD, no group-member, no spouse can do it for you.

This Group is another resource to SAVE YOUR LIFE--not just a "support" group. People will disagree, and argue, and offer many opinions and histories and all sorts of useful things. You read, you research, or ask more questions, or you learn important things to nail your MD down about. You go to PubMed, etc. and read the real stats--not just ones conveniently quoted from one study...and you fight for your life.

In my opinion a group such as this should always support the PERSON, but if I ever think a decision is a bad one, or an MD is full of it, I will say so--and I pray that you will all do the same for me.

That is what real support is about.

The "hang in there's" and the freedom to share tender or horrifying experiences with others who know what you are going thru is wonderful, necessary, and very helpful.

BUT, the real value of a group such as this is that you have hundreds of people who CARE about the same things you care about! Most of them researching recent treatments, or sharing problems with old treatments, or telling you what to expect, or citing new published studies...or personal hints for coping with side-effects.

I wish the best to each and every one of you as we all make the tough choices that we must make. It's as hard as it gets--and what we are betting is our lives. How brave and wonderful that is.

Much RESPECT and SUPPORT to ALL of you. Keep telling the truth as you see it--the more opinions the better the decisions we will all make. Besides, it keeps the doctors on their tippytoes! LOL! Medicine and the Web--a whole new world. A better one I think for ALL of our survival stats.



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