Preliimary Diagnosis

After a week of requests for info, my oncologist finally called last night and chatted with me for quite some time. She was reading some the pathology report to me. Flow cytometry testing of the biopsy did not find any B cells that were consistent with Indolent Non-Hodgkins Lymphoma. Since my blood tests indicated that there is no apparent involvement with major organs and I'm showing Lymphoma symptoms, she suggested waiting 4 months to see what happens. I believe that it was a major act of luck that my swollen lymph nodes where discovered as a byproduct of being tested for something totally unrelated. I don't think that there is much data on early, stage I or II Lymphoma. I'd guess that most people who are diagnosed have come in with raging symptoms and are already in stage II or IV. I reminded the oncologist that the radiologist who performed the biopsy had indicated that it might have been an invaled sample and had suggested doing a second biopsy. I also told the oncologist that I had a dvd of all of my PET scans and would take a look at the images. As she started to reread the PET scan results and the biopsy summary from the radiologist, she kind of did a 180 and agreed to schedule the second biopsy for next week, when we'll be in Albuquerque for Roberta's GammaKnife procedure.
If the first biopsy was not valid, then the Flow Cytometry results could be invalid. If I do have a cancer then one option for early treatment might be targeted radiation treatement like CyberKnife. However, those treatments have a tumor size restriction. The largest tumors (swollen lymph nodes) in my clusters are already 3 cm. So, in one phone call we went from do nothing for 4 months to come in for the second biopsy next week! I have been reading "The Patient from Hell", by Schneider. I am trying to be very informed and proactive in my treatment. I respect the medical industry and all that they are doing, but I feel that everyone needs to be pro-active if they want the best care.

It will be interesting to see where this blog goes. I would like to provide info for people who would like to be proactive in their treatment for serious medical treatment. Roberta has insurance. I am in the VA system. We live in a small town in Colorado and both count on Albuquerque resources for major medical treatment. We are currently timing our Abq appointments so that we can combine a trip.....250 miles. Roberta has a lot of family support in Abq. When Roberta was diagnosed, the local GP assumed that it would be removed with surgery and set us up with a neurosurgeon at University of New Mexico in Abq. We proceeded to do days and days of internet research and discovered the less invasive CyberKnife and GammaKnife radiosurgery treatments. By the time we met with the neurosurgeon Roberta felt very empowered to request to be considered for GammaKnife treatment. We will never know if the neurosurgeon would have presented all of the options if we had just showed up for treatment. I'm beginning to believe that if your MD sends you to a "specialist" who does surgery, then you will indeed get surgery!

I have heard nothing from Albuquerque VA since biopsy on 3/19.
I have done extensive internet research on Lymphoma. www.Lymphoma.org is one of many great web sites. I have ordered the book " The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too" I assume that I have Non-Hodgkins Lymphoma, either Indolent NHL (which is non-curable) or Aggressive NHL (which is curable). I have not heard a peep from the VA. I have faxed requests to the GU AP and the Oncologist for status. I contacted VA radiology records and they overnighted me a DVD with ALL of my scans. I can view all of my scans on my own PC. Ain't gonna do that until I talk to GU PA or Oncologist.

I contacted CyberKnife center in Phoenix and have learned that they do treat VA patients with approval from VA. CyberKnife has limits on tumor size.

I will bug VA Oncology to get status of biopsy analysis process. I want to know who is doing what, not just what the result is.

Wednesday, March 18th, Albuquerque VA

4:00 PM ..... no record of scheduled biopsy! The wheels get turning!

Thursday, March 19th, Albuquerque VA

7:00 AM.... I report for Biopsy, performed my Radiology MD. I am lying on CT Scan table. Radiologist pushes needle in and checks progress with CT Scan. Took about an hour. Local anestetic and "joy juice" IV. After recovery Radiologist debriefs me and says that he was conservative, and wasn't sure whether second biopsy might be needed. Home to Colorado!

I am 61 years old, in the VA "system." My wife Roberta and I live in Pagosa Springs, Colorado. My VA local clinic is in Durango, CO. I go to Albuquerque VA for "specialist" treatment. I have been seeing a GU Clinic Physician's Assistant (PA) Albuquerque for a year or so for non-cancer issues.

Monday, March 9th, Albuquerque VA:
8:00 AM ................. Routine CT Scan for non-cancer issues, set by GU clinic Physician's
assistant (GU PA)
1:30 PM .................. Routine appointment with dermatologist, who informs that GU PA needs
to talk to me.
2:30 PM ................. Phone call from GU PA says more blood work and PET scan needs to be
set up asap
Tuesday,March 10th, Albuquerque VA:
6:00 AM ................ Blood draw

Wednesday, March 11th, Albuquerque VA:
7:30 AM ................. Chance meeting in hall with GU PA who has been
trearting me. Says to see him around noon.
8:00 AM ................ Report to nuclear radiology for PET scan. They give me IV with sugar laced
with isotope. PET scan is over around 10:30 AM
11:30 AM............... Report to GU Clinic and am able to see GU PA with my wife. GU PA
informs me that my PET scan results are consistant with
Lymphoma.... two clusters of lymph node tumors in my lower tract,
none larrger than 3 cm. GU PA will call me at home with "thin needle biopsy"
schedule. He has conferred with Oncologist.

12:00 PM................ more bloodwork

We drove home to Colorado, with a flood of emotions and questions ???

Friday, March 13th, Home in Colorado
.... I reach GU PA from home .... he has scheduled biopsy for 19 March