Sunday, October 11, 2009

2 Problems - 5 Doctors - What do I do?

I had Cushing's Syndrome AND Lung Cancer. The Cushing's Syndrome was caused by the Lung Cancer Tumor. This is as simple as my situation gets.

I was initially diagnosed with Cushing's by my primary care physician, Dr. Farrukh. She then referred me to an endocrinologist, Dr. Robert Jones. He wanted me to have this IPSS (Inferior Petrosal Sinus Sampling) test done by a Neuroradiologist. I chose to go to UCLA for this test and to meet with a neurosurgeon and neuroendocrinologist about having the tumor in my pituitary (that is where it was thought the tumor was) removed and for treatment post surgery.

I have a neuroendocrinologist who has been following me from UCLA, Dr. Anthony Heaney. After the IPSS, he sent me to have a CT scan of my chest, abdomen, and pelvic areas. I did this back home in SLC at the University of Utah. They found the tumor in my chest. I decided to see my pulmonary doctor, Wayne Samuelson (I have asthma, so we already had an established relationship there - plus I was his secretary about five years ago). Dr. Samuelson then referred me to see Dr. David Bull, a cardiothoracic surgeon.

Not counting the other doctors I had seen at UCLA (the neuroradiologist, a team of pulmonary doctors after I had my left lung collapse prior to the first attempt at an IPSS, and the neurosurgeon I met with), these are five doctors I have dealt with for my two problems. These doctors haven't really communicated with each other and I felt for a long time like a patient without a doctor, even though I had five of them. I didn't know who to go to for what!

Now I have the same kind of problem, but with the search for support instead. It has been a very difficult task to try and find someone out there who has had both Cushing's Syndrome AND Lung Cancer where the cancerous tumor is what caused the Cushing's. It was frustrating, and still is a little bit now too.

I have decided to treat each problem like its own, individual problem, rather than one that is all encompassing. Like the last post explains, I love the Internet. I was able to find support for the post surgery (post lobectomy) pains I have been experiencing. I started an awareness group on facebook recently also. The creation of this group has encouraged me to find others with Cushing's disease and syndrome who have blogs, or organizations and hospitals who support people and their friends and families with Cushing's.

I have to look at my illnesses from a "divide and conquer" approach. I recognize that what I need for support can come from two different types of people: those who have had lung surgery and those who suffer from Cushing's. Mine is a combination of those two things, but the symptoms are different for each. I haven't stopped the search for someone else out there who has had both like me, but I have decided to let it go in a way so that I can move forward and find the help, support and confidence I need to continue on with my life!

No comments:

Post a Comment