I guess that rule no. 1 of the experienced cancer patient is what has almost become a cliche for us: " Be your own advocate ". I, like most of us, was a little awed at first by the fact that I was at MD Anderson, rated the number one or two, depending on whose poll you read, best cancer hospital in the U.S. ( and, I guess the world ). I chose not to go to go to another facility for a second opinion, and, as I watch people from all over the U.S. and the world travel to Houston to be treated at MD Anderson, I still believe that I am being treated at the right place.

Having said that, I have learned that I must be my own advocate. Having an interdisciplinary team is a wonderful way to be treated for the cancer, but at times I have felt lost between the surgeon, radiation onc. and oncologist. Seven months late, I finally met my patient advocate, but as far as I can tell, she is worthless.

At present, I am trying to figure out why I am feeling less energetic, making less progress eating, and for the first time since getting better after treatment, feeling worse. My chest Xray showed " aspiration pneumonia " and after a swallow study showed no aspiration, the swallow tech assumed that it is reflux and prescribed Nexium for me. I am not satisfied with this, so I have been emailing my doctors, and even paged a couple of them to further discuss the matter.

I am scheduled to see the swallow people again on Tuesday, 4/29 and now, after paging him, will see the surgeon again as well. I have never had the need for surgery, but for better or worse, this fellow is my main care giver. But he doesn't have a care giver's personality...he has the arrogant personality of the renowned surgeon that he has been reputed to be for over 25 years.

My point: Don't be intimidated. Ask questions. Take a loved one with you to remember and write down what was said and to ask their own questions. Get business cards from every doctor and assistant..most have email addresses and pager numbers. And, as Brian said, if you don't feel right or you feel that something is wrong...pursue it. I am very fortunate to have physicians for close friends who constantly answer questions for me and attempt to steer me in the right direction...but all of us can demand a little time and ask questions...the doctors are obligated to answer them.

Don't be shy...it's your life. ( and my kids want me around a while longer)

Danny G.

Hi Danny,
Absolutely dead on. Should be require reading for all cancer patients. My HMO (Kaiser Permanente) has a feature that allows you to look up ALL of their doctors on-line, where they went to school, residency, etc. And they use a team approach which was a real plus. They also have advice nurses which bailed me out many times and were an excellent interface with the doctor. Kaiser has provided me with copies of all my medical records and tests. They give cancer patients first priority also. I have been extremely satisfied with the standard of care. They also paid 100% of the bill to send me to UCSF (rated #7) for IMRT radiation (which came to a little over $200,000.00 I might add). I put together a binder (4" thick) with medication information sheets, business cards, Dx information, treatment options and notes, that my wife transcribed at all of my visits. I spent a solid month on line researching everything I could find and made my decisions based on the highest standards of care available. It was the most important "project" in my life - possibly saving my life. I also have 2 close friends, one a research oncologist and the other a pharmacist and that has been very useful also. However ALL of the information I acquired anyone could get with some focused surfing on the internet. I did parallel research on benefits and financial aid. Great advice Danny. If more people "got into" their treatment, it might even improve the odds.

Gary,
It sounds like you were much more of an activist and more thorough than I from the very beginning. My wisdom comes in hindsight from experience. In the beginning, like most of us, I , who knew absolutely zip about cancer, received my information from the doctors and did whatever they told me. I never heard of IMRT until I came to OCF and it was never discussed by any of my doctors.

Recently I emailed my radiation oncologist, who is very taciturn, and asked, " which kind of radiation did I have, IMRT,or regular?". He emailed me his one word reply: " regular ". Later my oncologist, who is very affable, explained to me why regular was probably better in my case, but the man who radiated me saw no need to explain anything.

When we are first diagnosed and every thing is spinning and time is of the essence, most of us don't stand back and do research...I didn't. MD Anderson's reputation is so stellar...who was I to question the experts. And, I do feel like I got excellent treatment...but that does not change the importance of being informed or the need to be your own advocate.

Danny G.

Hi Danny,
It was either do the research or run through the neighborhood screaming and holding pity parties. LOL! I work as a consultant in the radiological devices field and worked for the very same company that built the LINAC that I was treated on. I just discovered IMRT days before I was scheduled to have XRT. My Head and Neck surgeon who was ordering the treatment protocol hadn't heard of IMRT either -I had to bring it to his attention. He is a great doctor, by the way, and I have complete confidence in him.
I have heard that XRT is preferable for certain types of cancer.
I had plenty of time to ponder things while my face was bolted to that table every day (but it would have been too late by then). It was overwhelming -Pull my teeth or not? 12+ hour surgery or not? Chemo or not? Radiation wasn't an option -OK -what type of radiation?. All of them being tough choices and possibly a one shot choice at that with, at very least, major quality of life issues attached to it, not even getting into the morbidity aspects. Whew! And I hate doctors - I don't go to them unless I'm dying -haven't had a physical since the 60's and don't like taking medications of any type -not even aspirin. And now I'm stuck in the middle of the system (at least that what it feels like). Doctors appts every 2 months, CT's, MRI's, PET's, bloodtests (did I forget to mention that I hate needles). Well my only explanation is the the strength to get through all of this did not come from me. The good news is I'm still breathing. I try to stay focused on what I need to do today and that helps a lot also.

Hi folks,

I have another thought: Do you suppose by some quirk of fate (Murphys law etc.) the people with a talent for endless studying, 8 years or more of schooling, born into sufficient wealth to afford medical school, are geneticaly predisposed to having bad people skills, lack common sense, and worse, attract and surround themselves with other people with the same personality flaws....Makes you wonder. :p

It is easy to be cynical , but I find that doctors, just like lawyers, school teachers and bus drivers come in many shapes and sizes. I think that most of the doctors that I have met, especially in cancer care are very dedicated physicians and I respect them for their knowledge. Of course, some are outgoing and have good people skills, some don't and some are arrogant, just like all the other people that you encounter in life.
I am thankful for the doctors, especially their knowlege and dedication.

Danny G.

The difference is that with a very few exceptions the others on your list aren't dealing with people whose survival is at stake.

People win large claims for emotional stress or some other such damages all the time in todays courts. What about the days and weeks of stress waiting for a test or report to find its way to the patient? Or the years of anxiety wondering if the treatments were done correctly, (or in my case when the radiation machine broke down for a week extending my pain and suffering.) Or the day your in the waiting area and you over hear the Doctor yelling at someone on the telephone (a personal call) and you wonder if that will distract him enough to miss something during your 3 month checkup. (yes this happened to me) And even when you end up waiting for 1 and 1/2 hours past your appointment time because some idiot didn't hit the return key on their computer so you were never registered. (even though your sitting in plain view in the waiting area and there is no one else)

Yes we are all human and subject to a variety of limitations. BUT they are the ones to have chosen to go into medicine. Therefore because lives are at stake and because the system doesn't do a very good job of weeding out the worst, we should be able to demand some kind of quality assurance. (Just for the record lawyers and teachers should be subject to penalties when they don't do higest quality work as well) The big problem is you don't get a chance to review the quality of their work before you start. I don't like buying anything I can't see first.

I see I have begun to rant...curiously I didn't really know how much this was lurking in my mind...Damn now I have to find a therapist.

I think that I will seek penalites from my dry cleaner for not putting a straight crease in my trousers. He chose to be a dry cleaner and he must take responsibility.

Rant away baby!!!! We all understand....we've been there! LOL

Mandi

I've got my beefs with doctors as well, both on the dental and medical side of things. But for every negative I have found with one of them, I have found another doctor who exemplifies the exact opposite. I would guess that if you ran doctors through a survey, you would find, that like those of any other profession, they follow a normal bell curve. There are some that should have the licenses revoked, and others at the top end of the scale which boarder on sainthood. Most in the middle. You would find some who have no people skills and some who will spend the caring time it takes to help you through a difficult diagnosis or outcome with compassion and understanding. I find Mark