The Power of Patient Empowerment
Carolyn's story

I was diagnosed with a 1.5 AN in March 1994. It was discovered "accidently" during an MRI investigating a sinus problem on the opposite side. I was advised to have surgery immediately, but my gut told me to slow down, since I had no symptoms. The doctor I saw was great... when my instincts were telling me not to rush into anything, he agreed to repeat the MRI in 6 months and see how it looked. After 6 months, there was no change. After a year, no change.  Four years later, there has been no change so far, so I have not needed any treatment to date.

Though I do not have the experience of treatment, I do have the experience of the diagnosis; the anxiety over having a tumor, wanting to dismiss it as nothing because it isn't malignant, and then when all the facts are in, the struggle to accept and make decisions as to how to proceed.

After the diagnosis, I sat down and made a list with the columns "mental, physical, emotional, spiritual". I wrote down everything I could think of in each category that I could do to better support my body, and my "being". Things such as learning as much as I could about the diagnosed condition, taking part in deciding on treatments, improving my diet and fitness level, any forgiveness work I needed to do, asking for support from those close to me - and requesting that only positive thoughts be held, and increasing my prayer and meditation time.

At the same time, I did not stop working with MD's!  I did consult with several doctors, and was given various degrees of what seems to be the "truth" about AN's. When I finally ended up in Dr. Charles Leutje's office, I finally felt like I was in the presence of someone who really knew what he was talking about. Now, if I had gone with some of the other doctors, I believe I would have been getting less than expert care - not to fault any of the others doctors, but they were approaching my predicament from a very limited knowledge - and experience...

After looking at my situation, my surgeon and I agreed to "wait and see", and I was very honest with him about the other things I was planning to try. We've been monitoring it since with annual MRI's,  and there has been no change so far. Maybe it wouldn't have grown regardless of what I did, but there is a peace in knowing I am taking part in the process, and I am better off as a "whole" for the things I have done for my overall health...

For now, I am very comfortable, in fact very thankful, that I have had the past (nearly) five years without the effects of treatment. I also have accessed some alternative healing modalities. Maybe they have had a positive effect on the (non) growth, maybe there would have been non-growth without them. I have chosen to monitor the situation, but not make it a major focus of my life. I have decided to focus instead on increasing healthy and healing aspects of my life. Gratitude, diet, spiritual practice, forgiveness, and bodywork all have been a part of my
healing journey. If indeed the AN needs to be treated some day, I will already be a healthier (and stronger) person for the experience.

Of course I don't know how long it will remain unchanged. I do know I feel very fortunate, and am watching for treatment developments. If symptoms or growth occur, I will begin to consider treatment options. Medical knowledge is constantly evolving. Patient-doctor relationships are also changing, and I see that change producing a healthier balance of power. We are finally realizing how important it is to take back our right to make choices and play a part in our own health care. We are learning to ask questions, to do research on our own, and get several medical opinions before choosing treatment.

We must begin to realize that we as a society have given too much power to doctors. Until recent years, the lay person had no recourse but to put total faith in what the doctor advised. There seemed to be an unspoken rule that no one question the doctor. I believe that most, if not all, persons who enter medical school have a true desire to be helpful to human health. But the truth of the matter is, the doctors are products of their medical schools, and function from the knowledge base that they gain in those schools. If they are taught that radiosurgery is "bad", many will believe that and advise accordingly - until some medical "authority" proclaims otherwise... I remember hearing a story that not that many years ago, a nurse was chastised harshly by a group of doctors for suggesting that they wash their hands between surgeries - to prevent the spread of infections that was running rampant!

Making doctors into gods is as unfair to them as to ourselves. True patient empowerment is being able to make personal choices when the doctor presents options - and his/her best recommendation. And that empowerment includes the freedom to choose alternative treatments instead of or in conjunction with traditional methods.

I enthusiastically recommend that any AN patient explore all options; options that aren't necessarily presented by the doctors consulted after diagnosis.  In particular, I would encourage anyone with minimal or no symptoms to explore the possibility of monitoring growth before deciding on any type of treatment. I would advocate the wait and watch method for anyone who feels they can safely do so after gaining all the information about their situation that they can.  Of course, this isn't the right track for everyone - but at the least it buys time for advances in treatment in those fortunate to be able to wait.

We who are monitoring responsibly, and choosing to wait and see have been down our own path of facing the fear, and the consequences - and this is the choice we have made... I am fully aware that not all who are diagnosed with AN have the luxury of waiting that I have. I am thankful every day for my situation.

Carolyn Freeman <Spiritwlk@aol.com>
July 1998


Update

(10/99) Now, 5 1/2 years later after the diagnosis,  I am still symptom free, and have had no change in the tumor.

Back to Carolyn's entry in the Patient Directory

Last Edited: Wednesday, October 30, 2002