Went to Albuquerque for surgeon consutation in prep for laparoscopy in belly to get biospy of tumors. Surprised to hear surgeon say that they didn't do belly laparoscopies there! I had thought that it was a done deal. The surgeon suggested that he could find a lymph node somewhere else that would be easier to remove. He also stated that there was a surgeon in Gu who might "give it a try" or I could opt for major surgery that would put me down for 6-8 weeks from my construction business. "What do you think Mr Strickland?" I suggested that maybe a surgeon from the university might be called. The surgeon then acknowledged that there was one of the best lymphoma surgeons in the country there! However, he recommeded that he go ahead and find a lymph node somewhere accessible and proceed with a biopsy in the morning. He found a slightly enlarged node in my groin area. OK..fine.........I got ahold of my oncologist late in the day and told her what was going on. She was surprised and called the surgeon to say that it was unlikely that it was a cancerous node because it had not shown up on the March PET scan. The next morning I had the biopsy.....very quick procedure. The surgeon found Roberta in the waiting room and told here that the 50/50 chance of it being a cancerous tumor was reduced to 1%.............. it looked pretty normal. I now have an appointment to return May 26th and maybe we'll get the ball rolling to get the university surgeon on to do the laparoscopic biopsy!

You da one in the middle

I'm learing more and more about the medical system. The VA has a lot of compartmentalized specialists................ the oncologist, the radiologist, the general surgeons, the GU group. There is a common data base that they all put reports and instructions into. I have found the actual coordination between the specialists to be a little less than perfect. My role has been to follow through from one department to the next to make sure I get scheduled by department B who was requested to do something by department A. There isn't really anyone who keeps the whole ball rolling. My general practicioner in the Durango clinic has taken a strictly hands off approach to helping to keep things rolling in Albuquerque. I accept this role.....I worked in the government for 10 years, industry for 12 years and as a general contractor for 12 years. My bible has been "The Patient from Hell" by Stephen Schneider.

THIRD biopsy

I got a call from the oncologist on April 28th. The second biopsy apparently got a lot of material from the wrong place. The pathology report indicated that diagnosis was not possible and recommended surgically removing a node, which is now scheduled for May 15th. I'll go down on the 14th to meet the surgeon and anesthetist. My biggest impatience is that apparent Stage II will turn into Stage II or IV by the time I get the diagnosis! It really helps to make it real to read other people's blogs.

Second Biopsy

Roberta and I spent the week of April 10th in Albuquerque. She had GammaKnife treatment on her tumor. The staff at Lovelace Medical Center was excellent. We went in at 6:00 AM on Wednesday and were out by noon. I'll let her describe the process. I spent Wednesday evening through Friday morning cleaning out my colon (no food). I went in to the VA center at 7:00. This time I was on my back with the Radiologist inserting the biopsy needle through my stomach. No real pain thanks to local anestetic. I was able to see the CT scan monitor and watched the succession of scans as the radiologist pushed the needle in, guided by successive CT scans.

I was back in recovery by 10:00 AM, but had to lie still till 2:00 PM, before leaving. The Radiologist said that it was most likely a very good biopsy. The pathology department will now analyze for at least a week. I think that the medical team has accepted that I probably really do have a cancer. The biopsy will divulge if some flavor of non-Hodgkins Lymphoma. If NOT non-Hodgkins, then I will probably have to have a surgical biopsy to confirm Hodgkins.

I will spend the next week finally looking at my CT scans and PET scan and developing a list of qusestions for the oncologist when she calls. It is a little frustrating to not have sat down face-to-face with an oncologist through all of this first month of the preocess.

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.