Larry's TC story

In 1992 I was 30 years old, married with two kids. My lifestyle was extremely active and I was in good physical condition. I had a busy summer lined up, something every weekend. One day while I was in the shower I noticed a difference between my two testicles, but no pain or any other sign of trouble. I figured I hurt myself lifting weights since I was really into the weight lifting for power, but I decided to get it checked out.

The General Physician examined me and then referred me to a Urologist, who proceeded to send me for X-rays, blood work, and an ultrasound. All the while I'm thinking I need to get back to work, then a basketball game at 12:00 noon sharp. When I returned from all the tests and he got the results we met before lunch. He walked in and said, "You appear to have testicular cancer, and I have scheduled you for surgery on Monday (one week later)." Now that was a shocker! Now how do I approach the wife a kids with this one...

Well the best I could do was tell them everything and let us all be in shock. Now we need information real fast, since you know how the unknowing is worse then the knowing. I kept asking, "Am I early enough?" all week long. I called my brothers and told them what I had and that they should all do self exams. A day later my brother in Texas, whose 4 years older then I am, called up and said he had a lump. He went to the doctor and sure enough he had TC too! In fact, he had it on the same side and after our surgeries we discovered he had the same type. We both had Seminoma of the right testicle.

After surgery, the treatment consisted of CT scans and a lymphangiogram (a test invented to torture you). All tests came back clean, but just to be safe we did 12 days of radiation to the stomach area to kill anything in the lymph nodes. The radiation treatment was 3 weeks of hell. Get up at 7:00 am, get a 30 second X-ray, go home, curl up in bed and prepare to be sick by 9:00am, feel a little better at 12:00 noon and complete the day. The 3 weeks went by pretty fast. After all that we figured we had escaped pretty easy considering what others had gone through.

Time went on and after four years (Sept 1996) of going for regular checkups a spot showed up on my X-rays. At first it looked like fluid from a bad chest cold I had, then after several months we took another X-ray and the spot seemed to have gotten bigger. I went in and they inserted a scope down the throat, into the lungs, got a biopsy, and sure enough it was my old buddy back, the Seminoma. It appeared to be an escapee who was missed or just traveled in the blood. The tumor was located well out of the range of the radiation and it was the only detectable tumor. Back to the Oncologist and this time I was in for Chemo. Boy the tension in my house was high! Not all this stuff again, I was going into my fifth year. Oh well, we have no choice but to deal with it.

I hit the Net and began researching all I could find on Seminoma and TC. There is a lot of information out there. After being educated, I was ready for chemo. My treatment consists of 3 drugs (Cisplatin, VP-16, and bleomycin) for 12 weeks. The drugs are given via IV and take about 1-2 hours each to administer. I get the Cisplatin and VP-16 each day for 5 days, then I get 16 days off to recover. The bleomycin I get every Tuesday. I started the treatments at the end of Sept 1996. They put a catheter into my arm that went up my arm to my chest inside a vein. This thing was going to stay in for all 12 weeks. After the first week I wanted it out. The sight of a blue tube sticking out of me was too much to take. So out it came and I was now going to get a needle for each treatment.

I'm on my second round with the third five day shot a week away. The recovery weeks are nice because they give you a chance to catch up to life. I have a CT scan on Thursday which is the big day for me. If the tumor is gone like we expect, then I'm smooth sailing for the end of the treatment. If not, then the treatment changes and a whole new set of worries and concerns will have to be dealt with. I was lucky in that I have none detectable in my lymph nodes or other organs.

An update

I got my Cat Scan results back and my tumor is gone. It went from a walnut size tumor to undetectable in about 1 and a half treatments. That's mighty fast. Now all I have to do is finish the treatments. I have the same routine as you except I have to go four cycles. I think I have four because I'm classified as a stage 3 reoccurance, even though the tumor was in a untreated area. My cycles and side effects were as follows (I take 3 drugs, Cisplatin, VP-16, and Bleomycin).

Cycle 1 - Day 1-5 is Cisplatin, VP-16, and Bleo on Day 2 only. Side effects were minimal, I was running strong...

Day 9 Bleo only Side effects was a low grade fever at the end of the day

Day 16 Bleo only No real side effects - cut hair short to minimize loss.

Day 18 - blood count drops and hair falls out. I mean just that, one day it was there keeping my head warm and the next I'm freezing. Nobody told me it would come out that quick. Still no real nausea or other ill-effects. I now had to get neupogen shots to bolster my white cell counts. That stuff will make all your bones ache like you have the flu. Neupogen is a hormone that tells the bones to crank up the white cell production, hence the aching feeling. They want your cell count to be at least 3.0 before starting another 5 day series. After 3 shots of neupogen my count was at 14.8 ready for the next series.

Cycle 2 - Same as cycle 1 days 1-5. Starting around day 3 is began to get a real bad case of heartburn. This starting to cause me some grief by not allowing me to drink very much fluid. So I asked for more saline during the treatment. This extended the time to 6 hours each day. The heartburn would go away around day 7 and by day 9 I'm running pretty well.

Day 9 Bleo only and no real side effects. Day 16 Bleo only and no real side effects. By this time I'm feeling good about blasting through this stuff. Again I had to have neupogen shots for the white cell count. Of course all the hair is gone so only the body hair can start to fall out. By this time I'm mighty aerodynamic and too cold to do anything about it. I figure I will be doing a whole lot of itching when all the hair comes back. Cat Scan shows tumor is undetectable.

Cycle 3, Five day cycle again - this time I started feeling bad on day 3 and really got hit by day 4. I was tired and sick until day 7. Even on day eight I was under the weather. It came down to a psychological battle. All the questions on why am I doing this, my tumor is gone and all I want to do is get back to living. I made a decision to not do the last two Bleo's of my fourth cycle. Two things came to mind to make this decision. First was the battle to get through the last cycle is so great that all I want to think about is Day 5 and that being the end. The added days of Bleo only prolonged the end. Secondly the Bleo is a small, very small, portion of the treatment. In-fact if I was allergic to it, I wouldn't of had it anyways. Missing the last Bleo's seemed the best way to get through the last cycle.

Day 9 Bleo only no real side effects

Day 14 - two days before Bleo - I start to get the chills and a fever. It seems they show up in the morning and evenings. Temperature of 101 degrees. This means they will load me up with antibiotics and delay my final treatment, at least the Bleo and maybe the 5 day cycles as well. I won't know until tomorrow what the next step is. All I know is this Chemo is really beginning to tear me up.

I will keep in touch as we finish this saga. I did have some comments for Steve. I went through the Radiation stuff 4 years ago with the exact same type of cancer and treatments. There are a few suggestion I have for him.

1. Ask if the 20 days can be made 16 or so. I had 3000 over 12 days and went through the sickness each day. The best thing is to get it over with. All he has to do is ask the radiologist.

2. When you treatment is over find out who will be doing the long term care. In my case the Urologist was dong it. This was a mistake because he didn't know too much about the cancer and when it would spread to or what the symptoms would be if it did. Make sure he asks the long term care doctor for what signs to look for if it reoccurs.

3. Seminoma will usually spread to the lungs and then go from there. The signs to look for are:

*** The above health changes will be slow and subtle taking years to develop. But if you pay attention its easy to catch anything that may reappear.

4. The Cancer markers are rarely present in Seminoma. I didn't have any either. Be sure to ask your doctor about them.

5. Finally, when you go for your checkups always ask to see the x-rays they took. keep them in mind so you can tell exactly what's going on. You will probably have doctor visit every 3 months for the first year then every 6 months for the next two years and finally each year.

I finished the third cycle and headed into Thanksgiving knowing the fourth and last cycle was just ahead. The week before my fourth cycle I started getting the chills. At first I thought it was because my natural warm hat, my hair, was gone. I called the nurses and they said to take my temperature when ever the chills hit. So I did and I had a 102 degree fever. This prompted a quick visit to the Dr. and a 1800 mg per day treat of antibiotics. The chills went away but it delayed the fourth cycle.

During this time I was really getting some side effects. I had blisters on some of my fingers along with numbing at the tips. Then I got a few mild sores on the corners of my mouth. And finally the worst, in my view, was I started to retain water and feel all bloated. I have never had this happen where one day I can wear a pair of jeans and a week later I can't even button them up. In fact the button and hole was a good two inches apart. Talk about your weight gain, I knew it was rising due to lack of activity, but damn at least let me wear a pair of pants before they don't fit any more.

After Thanksgiving I saw the Dr. and told him all my stuff. To my surprise he said lets just stop the treatment now and go into a surveillence mode. Yea!!!!!!Hooray!!!!!!! I was not in the mood for that fourth treatment and dealing with any side effects during the Christmas holidays. Now the swelling went down and I have a new pair of pants that are too large. Now that's cool. The blisters on the finger are going away and I even have the first signs of a new crop of hair. I figure I may even be able to shave regularly again by Christmas. My energy is increasing each day and with the treatments out of my mind I can concentrate on life. It feels good to be back.

I get a full CT Scan in January and check ups every three months. This time I got my Oncologist to do the long term monitoring. That's the way it ought'a be, and should have been the first time. I will continue to write updates to this page. A final note to all those entering these uncharted waters. You may not be the first, but your journey will be uniquely yours and only share parts of many of the stories from this page.

To be continued...


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