to visit a doctor. (In Taiwan, Reputable doctor has clinic hour in the hospital where you can register and get to visit him)
Dr. Huang at Renai Hospital (3 min walking distance from my apartment) diagnosed my condition as cellulitis. My lower legs were red and blotchy and slightly swollen. I got a dose of antibiotics and diuretics. About a week later, the swelling was very significant (calves, ankles and feet) – enough to scare me. So on February 27, 2010 I went to the Emergency room at National Taiwan University Hospital (NTUH) and had the cellulitis diagnosis confirmed. I was present in the hospital for more than 24 hours and had IV antibiotics and then sent home with more antibiotics. They also scheduled me for a follow up with NTUH Dermatologist Dr. Wu the next week. They believed my Cellulitis was caused by athlete's foot. The overnight IV antibiotics in the hospital resulted in a significant reduction of the swelling. It stayed down for a few weeks but then it came back. The cellulitis (red blotchy skin) also went away but the itching was returning.
I met with Dr Wu about three days after being released from the ER. Dr. Wu prescribed topical care for my feet and put me on a 3 month regimen of Lamisil combined with a monthly check of my liver function to determine that it was OK to proceed with the Lamisil. While my athlete's foot got treated, my swelling and itchiness never went away.
Since I have high blood pressure and diabetes and took medications for both, I was concerned that the medication may be causing the selling in my legs. So I decided to find a new doctor, Jason Chang, skilled in treating diabetics. That started the diagnostic process in earnest on March 24, 2010. I liked Dr. Chang (an internist) because he was friendly, kind, and thorough and very scientific in his approach explaining carefully the possible diagnoses and what he hoped each test would prove or disprove. From my mathematics education, I recall this as "The Scientific Method".
(Ignoring the many blood, urine and stool tests) the first test was for Deep Vein Thrombosis (DVT) administered by Dr. Wang on April 12, 2010. This was fairly scary since the treatment for DVT is very limited to my knowledge. The test was an ultrasound test plus pressure measurements on the legs. It proved I did not have DVT but found an enlarged lymph node in the groin. This changed the working diagnosis from Cellulitis to “Lymph Edema”. So now we knew ‘what’ but we didn’t know ‘why’.
To continue the search, we did an abdominal ultrasound on April 29, 2010. This was mostly a gross check on organs to make sure everything was OK. Everything was good but there was a lesion of some sort (not identifiable from the ultrasound) on the spleen. So on to the next test a CT Scan of the abdomen. The CT scan on May 7, 2010 with and without contrast did not identify anything important on the spleen but found a mass of about 3.5cm above the right kidney and showed an enlarged nearby lymph node. Dr. Chang explained the report to me, and told me that he would refered me to an oncologist in NTUH for further consultation.
On May 13, 2010 I met with Dr. Lin, an oncologist. He suspected that the mass was renal cell carcinoma. He recommended a biopsy to confirm the problem he also suspected that surgery to remove the kidney was inevitable. At this point, we were convinced that it was kidney cancer and we needed to find the best surgeon if surgery was unavoidable. We went back to see Dr. Chang and asked him to recommend a trusted surgeon for me. Dr. Chang immediately made a call to Professor Dr. Ming-Kuen Lai, Chief of Oncology at NTUH. We went to see him at his clinic in 2 hours. Dr. Lai, look at the scans and he called the oncologist, Dr. Lin, and they have a brief discussion. I hear Dr. Lai said, “we can’t rule out Lymphoma”. Dr. Lai explained to me that there are two major possibilities, Kiney cancer or Lympoma, but a needle biopsy was needed to confirm.
When we came home we did a lot of research on thee internet. I had no indications of kidney problems and several indication that were consistent with lymphoma (including itching and swelling of the legs and low grade nightly fever). So we wanted an alternate opinion.
We took the CT Scan and visited Dr. Yu, who is the Superintendant of Veteran's Hospital in Taipei. Hospital in Taipei and a very respected urologist like Dr. Lai. We had been introduced by a family friend and former colleague of General Yu, Dr. Chen. Gen. Yu meet us at his office conference room and using a wall size screen to review the images of the CT scan. He pointed to the scan and told us he the problem was lymphoma, he had seen many cases like this. The kidney mass could be an infiltration from the lymph node. He was very busy that day, and for him to spare 30 minutes for us was deepley appreciated.
We could have chosen Dr. Yu to be my care doctor. But Dr. Lai in NTUH is also one of the best urologists in Taiwan and NTUH is only 10 minute Taxi ride from our apartment. General Hospital is 30 minutes away. Because I had already been treated since Feburay and it was convenient and the staff was well qualified, I decided to continue treatments at NTUH. I guess to making changes is always difficult for some people. I am one of them.
So I had a needle biopsy done on May 25, 2010. This biopsy was a relatively simple procedure except for keeping still for so long. The biopsy was guided by the CT Scan so you would get scanned, they would move needle a little, and rescan to be sure they had placed the needle correctly. Only topical anesthetic was used and in one week the results would be available.
There were a few possible outcomes. Renal carcinoma is statistically highly probable. But it turns out my symptoms do not show any renal malfunction but do point to Lymphoma as an outcome. Hopefully the biopsy would differentiate between these two possibilities very clearly. There were also lower probability outcomes from benign to other forms of carcinoma. Right then we were thinking lymphoma would be the best outcome since we would lose no body parts and the treatment was not surgical.
Through all this I felt fine (except for the itching). I no longer used diabetic or hypertension medications. My blood sugar and blood pressure were under control.
On June2, 2010 we met with Dr. Lai to get the diagnosis from the needle biopsy. Unfortunately, there was no diagnosis from the biopsy. The materials removed were not sufficient for a positive diagnosis. Both lymphoma and renal cell carcinoma were still possible. The report did say that an "atypical lymphoid infiltration is considered." So now the possibility of lymphoma was on the table but the specimens from the needly biopsy were insufficient to confirm.
On June 3, 2010 we met with Professor Dr. Tian, a hematologist who specializes in the treatment of lymphoma. Prof. Tian is Chief of Hematology at NTUH. She is very easy to talk to, very bright and is very thorough. She explained that the sample size from the biopsy was too small to act on and the correct next move was a laparascopic biopsy. In a subsequent discussion with Dr. Lai, a laparascopic biopsy was scheduled for June 17, 2010.
We checked in to NTUH on June 16, 2010 for the biopsy which is considered major surgery. The plan was for Dr. Lai's team to open three holes in the abdomen for light (to see), for air to pump up the abdomen and create working space, and a hole for instuments. he would then get several chunks from the mass on the kidney and do an immediate test of the specimens to determine whether they were carcinoma of the kidney, lymphoma, or benign. During this 30 minute delay, I would stay on the operating table while a hematologist and pathologist diagnosed the specimens. After the diagnosis, the doctor would recommend to Rosalind how to proceed and she would give permission according to her opinion (I would still be under general anesthetic). This biopsy also was not conclusive. But the mass on the right kidney was real and we had decided ahead of time that we did not want any more major operations, so the decision was made to remove the right kidney, its associated adrenal gland and the nearby enlarged lymph node. So on to one more week of waiting for the diagnosis.
On June 30, 2010 a final diagnosis was received. This diagnosis was reached on pathological examination of the right kidney and lymph node and it was Hodgkin's lymphoma. While this disease is not necessarily inherited, in this case it was exactly the same disease my father had. He was diagnosed almost 50 years ago when the only treatment was radiation. Even then he was successfully treated and the disease was arrested. At this point, I could be assigned to Dr. Tian for treatment.
On July 1,2010 I met with Dr. Tian. She pointed out that the next thing to do was to determine the stage of the disease (i.e. how far had it spread). To do this she needed a new CT scan from head to abdomen (all the prior scans had been abdomen only) and a Bone Marrow aspiration. We also discussed a possible short visit to the USA. She said postponing things for 30 days would not be a problem.I figured I might take that 30 day break after we had determined the stage of the disease so we scheduled the CT Scan and Bone Marrow aspiration in the next 2 weeks.
Up until this time I had felt fairly good but still recovering from the kidney removal. There were no side effects that were apparent to me at that time. That is until July 5, 2010. On that day I had a high fever over xxx and off I went to the NTUH Emergency room. They checked me out and gave me some medication and sent me home with the diagnosis that the fever was likely related to the Hodgkin's Lymphoma. That is quite possible but Hodgkin;s typically has a low grade nightly fever attached not this fever. On July 6, I had a repeat performance with a very high fever so we were off to the emergency room again.
We were very fortunate to find my original internist, Dr. Jason Chang, in the emergency room. We told him what was happening and he believed it was significant and required admittance. He spoke with his colleague, Dr. Hsu, who happened to be in the ER that night. Dr. Hsu also worked for Prof. Tian and knew I was under her primary care. He agreed with Dr. Chang and scheduled my admittance to NTUH.
I was immediately happier to know that I would get the attention that appeared to be needed to control my fever. The ER treatment treated the symptoms (in terms of knocking down the fever) but would not try to find any cause beyond .
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