Four Months with Cancer

Jan 14^th 2003

I was in Austin Texas for some training when I felt some discomfort in my groin. At first I thought at first it was because of weight gain during the holidays that my jeans were a little tight. That night as I was getting ready for bed, I noticed that one testicle looked bigger than the other. I felt around and found that the right testicle was about three times larger than the left and hard to the touch. Since I was going back home the next day, I thought I would make an appointment to see my doctor as soon as possible.

Jan 15^th 2003

Home again in Durham, NC; I called Duke for an appointment to see my doctor. After explaining my concern, I was able to get in the next day.

Jan 16^th 2003

I saw my doctor for an examination and she confirmed that something was not normal. She brought in a urologist for a second opinion and thought it may be epidimitis or some other infection. To be on the safe side, they set an appointment for an ultrasound the next day and prescribed some Cipro for the possible infection and Ibuprofin to reduce the swelling.

Jan 17^th 2003

I went in for the ultrasound at 3:00pm and the exam took about fifteen minutes. The technician could not give me any ideas as to what the ultrasound showed, but said to contact my doctor in an hour and a half and they could tell me results. I called my doctor and she said the ultrasound showed a solid mass in the testicle and it was most likely cancer. Since I had suspected that would be the case, I felt oddly calm about the prospect of cancer. She told me she would get me an appointment with a urologist for further diagnosis and consultation. I did a Google search on testicular cancer and found the Testicular Cancer Resource Center (tcrc.acor.org). I made myself a martini and started reading. My wife came home from work and I informed her of the prognosis. She was much more concerned than I, having lost her father to prostrate cancer a few years earlier.

The weekend was spent talking with family and friends and reading Lance Armstrong’s book “It’s Not About the Bike” while waiting for the next step. Since this was a holiday weekend in the US, I would not find out when my next appointments would be until Tuesday the 21^st.

Jan 21^st 2003

I received a call back from the scheduling service and was told I could get an appointment in two weeks on Jan 30^th. I thought I should get in much sooner but was told that was the first available opening. I started to panic and searched for other options. I called Indiana University and was able to talk with the head oncology nurse. She said it was urgent to get in to see a doctor as soon as possible.

Jan 22^nd 2003

I was able to talk to the urologist’s nurse and explain my situation. She was able to get me an appointment for the next day. My wife and I were both very relieved.

Jan 23^rd 2003

I met with my urologist and he confirmed the diagnosis of testicular cancer and explained the next steps, the first of which would be an orchiectomy (removal of the testicle), which should happen immediately. He explained the options of sperm banking prior to the operation which I opted not to do. He explained that I would need to have blood and urine tests to get the markers and I should have a chest x-ray also to see if the cancer has spread to the chest. They drew seven vials of blood and two samples of urine. Everything was just as the TCRC web site said it would be. The surgery was scheduled for the next day. Later that afternoon I called to see if they had the results of the blood tests. AFP was normal, beta-HCG was at 2.8 iu/l (>0.7 iu/l is normal), HDL level was at 1250 compared to a normal of 200. All other tests showed normal.

Jan 24^th 2003

I was admitted into surgery at 11:00 am. The surgery was scheduled for 1:00pm, but was delayed until 2:30pm. I was wheeled into the operating room, given the general anesthetic and was awaken at 4:30pm. They said the surgery went very well. I stayed in the recovery for two hours, was given a prescription for Percocet for pain and Docusate to compensate to the possible constipation caused by the pain killers. I was told I would need CT scans the next week and sent home.

Jan 25^th and 26^th 2003

The weekend was spent lying around, talking on the phone to family and friends, sleeping and moving very slowly. By Sunday evening, I was feeling pretty good and in only a little pain from the surgery.

Jan 28^th 2003

I went in for the CT scans. I was given two glasses of a not-pleasant-tasting beverage to drink. This was the contrast agent for the scans. During the wait for the drink to get through my system, I was fitted with an IV where an iodine contrast would be injected for part of the scans. I was given two sets of scans on my chest, abdomen and pelvis. The entire scanning process took about twenty minutes.

Jan 30^th 2003

The results of the pathology and CT scans are in. The CT scans are clean. No additional tumors noticed anywhere. The pathology says it is a 100% embryonal carcinoma germ cell tumor. It shows lymphatic/vascular invasion. My doctor is saying the chance of recurrence could be 50% or higher. Although the CT scans do not show cancer in the lymph nodes, the next step may be additional surgery, because the cancer may not be large enough to show up yet. He is recommending I see experts in Indiana, Boston or Los Angeles and setting up a consultation with a local oncologist. I am following up with Indiana University since they are the pioneers in the field.

Feb 4^th 2003

I met with the local oncologist. After answering questions about past medical history and getting a physical examination, he addressed the cancer and told me the options. The type of cancer I have is aggressive and there is an average 20% to 25% recurrence (different numbers than my urologist). The known pattern is the cancer first spreads to the lymph nodes and then to other organs, normally lungs are next.

Option1 would be a RPLND surgery. This is a very invasive surgery where they take out a group of lymph nodes closest to the removed testicle to see if cancer exists. If so, that could be the elimination of the cancer, however it will require follow-ups for the next five years. The surgery could take from 3 to 8 hours with 1 week of hospital recovery time and 6 weeks of in-home recovery. Even then, it could still require future chemo treatments.

The second option is to undergo surveillance. I would get chest x-rays and blood counts every month and CT scans every four months to see if there is a recurrence (not the standard protocol according to the TCRC web site). If no recurrence, great, if there is recurrence, I would be put on chemo. The treatment would consist of 4 cycles of BEP. Each cycle would be five days of chemo for three weeks and one week off. 12 weeks of chemo followed by a few weeks of recovery.

Feb 7^th 2003

I met with a doctor at Indiana University. He told me that all the pathology and CT scan readings performed at Duke were correct which made me feel good about the work the doctors at Duke perform. He confirmed the statistics given by my urologist. There is a 45%-50% chance of recurrence with the first place of spread normally being the lymph nodes closet to the original tumor. I would have two options. The first, being an RPLND. He explained the procedure and told of great advances made in the surgery recently. The surgery now takes between 2 and 3 hours with 2 to 4 days in-hospital recovery and then 4 weeks of in-home recovery with limited lifting and travel. After the surgery, the odds of recurrence drop to 5% and I would need two years of surveillance involving blood tests and chest x-rays. The second option would be 5 years of surveillance consisting of monthly blood and chest x-rays with 4 CT scans the first year, bi-monthly blood and x-rays with 3 CT scans the second year, quarterly blood and x-rays with 2 CT scans the 3^rd year, two blood tests and x-rays with one CT scan the 4^th year and one blood test, x-ray the fifth year. If cancer recurs, I would need three cycles of BEP or four cycles of EP (in case I wanted to avoid the Bleomycin to protect my lungs from damage.) Either option gives a 99 % chance of cure. The main difference is that with the surgery, there is no need for the additional CT scans and associated radiation and a two year surveillance instead of five years.

Feb 8^th 2003

I have decided to go with the RPLND. I will call this upcoming week to make an appointment.

Feb 10^th 2003

I made the appointment for RPLND surgery at Indiana University for Monday Feb 17^th

I need to schedule local lab tests to be done prior to surgery.

Feb 12^th 2003

I went in for blood and urine tests. Results will be sent to IUPUI.

Feb 15^th 2003

Due to inclement weather, we started driving to Indiana today. Ran into ice storm in Kentucky and spent the night.

Feb 16^th 2003

Slowly made our way into Indiana

Feb 17^th 2003

RPLND surgery scheduled for 2:30pm. Everything went as expected. The surgery lasted approximately 3 hours. I woke up in post-op recovery room and was wheeled into my room. My wife, sister and mother were all waiting for me when I got out of surgery. I was setup with a morphine drip in my IV and awoken every few hours for tests of blood pressure, oxygen levels and other things.

Feb 18^th 2003

This was a remarkable day. I went from liquids through IV only to liquids on my own to solid food. I was able to get out of bed and sit in a chair and eventually walk around the hospital floor.

Feb 19^th 2003

Things are progressing very well. I am out of bed for more hours, eating and walking. I am off all my IVs getting pain relief from pills. I was asked if I felt up to being released, which I agreed to. I met with the surgeon. He told me the initial pathology shows microscopic invasion of the cancer into the lymph nodes. I am now at the 75% cure level. I have the option of either two years of surveillance or 2 cycles of BEP chemo. Either choice will result in 99.3% chance of cure. I spent the night in the hotel with my wife.

Feb 20^th 2003

My wife and sister drove me back home to North Carolina. The 10 hour trip went surprisingly smooth. I felt very little discomfort until the last 2 hours. It felt good to be home. I spent much time thinking about chemo and getting the whole ordeal behind me as quickly as possible.

Mar 15^th 2003

I have decided to pursue the chemo route at UNC-Chapel Hill and have scheduled treatment to start the first week of April 2003. Appointment made for initial blood tests and sperm banking 3/24/2003.

Mar 24^th 2003

Received blood tests and had an initial examination of the sperm sample. The count was very low, but the doctor said they have had good results with lower counts. Low count is most likely due to the surgeries.

Mar 31^st 2003

Start chemo treatment of etoposide-cisplatin. Day starts with blood test which is followed by a slow drip of the drugs. The entire process takes 7 hours.

Apr 1^st – Apr 4^th 2003

Daily routine continues. Starting to feel weaker and experiencing much more nausea as the week progresses. The cocktail of drugs really do help. I am able to keep food down, but eating very little. I get two weeks off before next treatment.

Apr 21^st 2003

Blood tests show white blood cell count and hemotocrit counts too low for treatment. I am told to come back in one week. Hair is starting to fall out.

Apr 28^th – May 2^nd 2003

I am back to the daily chemo routine. The nurses at UNC-CH are fantastic as are the doctors treating me. It is difficult for me to walk the two blocks from the parking lot to the treatment center, but I am able to do it. Look forward to not having to do it any more. By the end of the week, my veins have been burned by the treatment and it is very difficult to find one that can take the IV, but they are successful. I am happy it is over with.

With the surgeries and chemo out of the way, I am following the recommended surveillance. This will consist of CT scans, x-rays and blood tests on a routine basis for the next few years. I think I have beat this thing and am in great spirits.

Nov 18^th 2005.

I am now seeing a new doctor after moving to Charleston, SC and still keeping up with my surveillance routine of blood tests, x-rays and CT scans. Latest results are all normal with no sign of any recurrence.