KJ's TC Story

I lost my right testicle as a young child, due to it being undescended and cancerous. [Editor's note: Very young children can get testicular cancer, but in this case I somehow doubt that that was the case.] The doctors told my parents that the removal of the testicle at that time was all that would be needed.  However, they said that I could have problems in the future due to this condition, and the fact that I was a premature baby.  They said the cancer could come back, and that I could have a sperm count problem, but all looked normal at the time.

Well, things did get worse in February 1997.  I felt a painful lump in my left testicle, I mean it was really sore!  I was immediately concerned, as I realized that I only had one testicle and didn't want to lose it.  I had been fairly religious in checking myself monthly, but was quite alarmed at this sudden development.  I went to my general physician that next Monday, but he wasn't available.   So I saw the physician on call, who said that he wasn't too concerned, but would rather I see a urologist to be sure. 

I went to see a urologist, Dr. M., at Physicians Plus, in Madison, Wisconsin.  Dr. M. told me that I had epididymitis, which means that the epididymis was infected.  This was a relief, as it wasn't cancer!  I was given medication to help this, yet was scheduled to have an ultrasound done a few days later.  Dr. M. wanted to do this as a precaution.  This precaution actually saved my life.  The ultrasound showed that there were numerous "hypoechoic" areas that were suspicious of cancer.   Dr. M. requested that I see another urologist, Dr. U., at nearby UW-Hospital. 

This appointment would be a few days later.  Now this is where the tension really started. We were now being shuffled around in a short period of time, which made us realize that something serious was lurking about.  My wife and I were quite distressed at the fact that I may have cancer, but also that we may not have children.  Dr. M. told us that we may want to pursue banking my sperm, as I would no doubt lose the testicle.  (I had also had a semen-analysis done too, to check the effect of the epididymitis and possible cancer on my sperm count.  This was at 1 million!)

Upon getting the second opinion from Dr. U., (he believed these areas were suspicious of being cancer) we realized that this was definitely a life-threatening situation.   The doctors didn't believe that we needed to rush into the orchiectomy, as my markers were still low, but surgery would be needed in the future.  Thoughts really began to rush through our minds.  "Was I going to die?" "Would we ever have children?"  "How are we going to get through this?"  We were told that we would have time to pursue the banking option, and to try and have a child if we wished.  This was something that really shocked my wife and I, as we kept putting this off until we both had full-time teaching jobs.  Well, now we have reflected that maybe we shouldn't have waited.

Since my sperm count was so low (but they were good swimmers!) the doctors said that our only realistic option in using my sperm would be a process called "ICSI" (Intracytoplasmic Sperm Injection).  This process uses only one sperm and that is injected into one retrieved egg.  It is very costly, and was not covered by insurance -- even though all doctors involved stated that this should be viewed as a medical necessity, and that it should be covered by insurance. Well, we fought that battle to no avail, yet now that I'm feeling better I want to pursue it further. 

We did, at the time, find this rejection by our insurance company (WEA Insurance -- Wisconsin Education Association Insurance Co.) to be quite hypocritical.  They will pay for an abortion, yet deny two teachers --whom work to benefit children--the opportunity to have children.  We realize that there are other ways of having a family, but we felt/feel that we have a valid case.  Their policy states that they will pay for the diagnosis and repair of the malfunctioning body part that is causing the infertility. What about our case??  They cannot repair the part (testicles) if they are gone -- in this case lost due to the cancer!!

According to them this is purely a case of infertility.  (If you have any suggestions or input on this matter, please let me know.)  If this the most common form of cancer for men ages 18-35, then why aren't the insurance companies doing anything to help out with the aftereffects of the surgeries and chemotherapy?  Yes, they are paying for saving our lives, but there is something to be said about their treatment of a very emotional matter -- such as raising a family!  Anyway, the process didn't work (Yes, I still have strong feelings toward this issue, can't you tell??), even though they used a fresh sample of semen instead of a frozen sample.  This was very difficult for my wife and I to handle, as it was really our only chance to try this before my surgery. 

I had the orchiectomy on May 30, 1997.  The results of the surgery revealed that the tumors were cancerous!  We were informed that the type was Non-seminoma carcinoma, with a yolk sac tumor.  I made it through this surgery fairly well, and was pretty doped up afterwards, as all I could say when the doctor told me it was cancer was "Oh that's good".  Yet I began to really worry when reality set in a number of hours later.  I would have to have an abdominal CT scan done to check if the cancer had spread anywhere.

The waiting seemed to be almost unbearable, at least until the results of my abdominal ct scan were processed.  I had a pretty good idea that something was up, as my markers were still at an elevated level.  The scan showed that I had a lymph node that was abnormal.  It was to be removed during an RPLND (Retroperitoneal Lymph Node Dissection).

Although this was "bad" news, we were somewhat relieved to find out that the cancer hadn't spread anywhere else.  (I had done some research prior to this, and asked right away what stage I was in--Stage 2--which was considered to be good.)  I was still pretty shook up, but now focused on trying to save my life.  All other issues were put on a back burner (children), for now. 

I went in for the RPLND on June 24, 1997.  I was pretty stressed prior to this surgery, as my wife and I had just celebrated our 4th wedding anniversary on June 19.  This surgery was a lot more drastic than the first, but proved to be successful, so to speak.  The abnormal lymph node, along with a number of other surrounding nodes, was removed.  The doctors couldn't be sure whether the 5cm by 2cm mass was one big node, or a number of nodes that had "massed" together.  Regardless, this growth would be removed.  We were later told that the node was cancerous, which meant that chemotherapy was the next step in treatment.

The thought of taking chemotherapy scared the heck out of me.  I did as much research on the Net that I could, in addition to reading every book that I could.  It helped quite a bit, as I wasn't as apprehensive anymore. Everyone had suggestions, too.  Not that I am ungrateful, but they didn't realize that there are different types of chemotherapy and side effects that go along with them.  Yet, it was nice to know that people were trying to help.  Any support is better than none at all.

Bruce, an aquaintance of my wife and mine had gone through the same chemotherapy 8 years ago and was a great resource and help to me.  He told me that he was sick everyday during the chemotherapy, but it wasn't that bad.  He kept thinking that it was going to save his life.  I never have enjoyed the thought of getting sick, but if I could attack it like Bruce did, things would be fine.  Plus, a friend our family was sick every day for 2 years, while taking a different type of chemotherapy.  He told me "Every time you get sick, just remember that it's making you better!" 

My doctor, Dr. Tom, was pretty blunt with me all along, but it made things a lot easier.  There was no "gray" area for me to think about.  I was to go through 4 cycles of BEP, with the first starting in August 1997.   I would be in the hospital for one week, and then go back on Tuesdays only for the two weeks after.  This is because they cannot give you the Bleo. more than once a week.  I went into the hospital expecting the worst, but felt more comforted than I had when I first found out.  I took some books, tapes, and even a Super Nintendo with me for the first cycle.  I was determined to try anything to keep my mind off things. 

When I got there, I had blood drawn, and had to get a CT scan of my abdomen.  This wasn't too bad, but I did not, do not, like the "lemonade" that you have to drink prior to the scan.  I had/have a very severe reaction to the stuff.  They say that "It can give you diarrhea."  I'd like to know what they mean by "It will give you diarrhea."  After the scan, they had me take a lung capacity test.  I had to blow into this machine as hard as I could and hold it.  Now, how in the heck is someone supposed to do this when they have the shits!!???  I'd like to know who the brain surgeon is that thought the order of events for that day.

The scan showed two areas where the cancer had metastasized.  I was kind of worried about this, but Tom told me that everything should be gone after 2 cycles.  The last 2 cycles were merely for "flushing" my system out.  Well, the first cycle wasn't too bad.  My wife stayed with me the whole time, since she didn't have to teach school yet.  I was glad she was there.  I was pretty scared.  I did play Nintendo and watched TV quite a bit, but never got into reading too much.  The hospital also gave me a relaxation tape, but I didn't use it too much after the first time.  By Wednesday, the 3rd day of my cycle, I was pretty doped up. 

I was sleeping most of the time, except when I had to get up and take a leak.  This seemed like about 50 times/day, since I was being hydrated around the clock! Plus, I had to record the amount that was urinated, as they have to keep track.  By Friday, I was worn out to the max, but didn't feel too bad since I hadn't gotten sick.  The drug Zofran is a miracle drug. 

I didn't have any of the bad side effects besides heartburn and loose stools.  I even kept appetite during and after the cycle.  I was glad for this, as I love to eat.  I had lost about 15 pounds after the RPLND, but had gained it back before the chemotherapy.  My hair started to fall out, but I didn't have that much to fall out, as I had shaved my head prior to going into the hospital.  I didn't want to deal with the depression of the hair coming out in chunks.  It did fall out in other places though. Bruce told me that it would fall out all over -- and it did!  Even my eyelashes and nose hair fell out!  Oh well, things could've been worse!  I was a little queasy on and off, but I kept taking the Zofran.  I didn't get sick once during any of the cycles.  The only time that I came close was after one of my Tuesday appointments for Bleo.  I went out for Chinese at lunch, and then had two burritos the next day.  Everything tasted good at the time, but the combination was too much.   I didn't puke, but I thought I was going to.  My sister and Dr. Tom told me that it served me right, and that I should stick to the bland foods until at least a week after the cycle.

I only had one bad reaction to the Bleo. during the 4 cycles.  I had an allergic reaction to it and broke out in a rash.  They gave me some Benedryl and something through an IV that took care of it.  I was lucky, as my friend Bruce went into anaphylactic shock. 

I did have to get a "PICC" line put into my left biceps, as my veins started giving out, and I developed phlebitis.  I should have had a "mid" line catheter put in when they wanted to before my first cycle.  I was too nervous at the time though, because I had heard about people getting a lung punctured when it was being put in.   Although now I would suggest getting one of these to anyone who has to go through this treatment.  It would have saved a lot of time and getting "stuck" with needles, as they can do everything through this setup.

During the 2-4th cycles, things pretty much went the same.  I was alert during Monday-Wednesday, but out of it on Thursday and Friday. My mom stayed with me during the last cycles, as my wife, Pam, was in school.  She came down for the first days, but then went back to the small town where we had bought a home.  She got a job teaching there, which is where my school is, so we decided to settle down.  It gave us something to be happy about and focus upon during this ordeal. 

I made it through everything quite well, and am now proud to say that I am cancer-free.  I am back at school, and my students are happy that I am better.  I went to see them periodically during the 4 months of chemotherapy (when my counts were high enough).  They were concerned about my hair falling out, and what color it would come back as (One student thought it would come back purple.).  Oh well, for 3rd graders, they have adjusted to it quite well.  I wore a baseball cap to school until about 2 weeks ago, since my hair is back now.  It is a little lighter shaded than it was before, and some hairs are even gray!  I really don't care though, since I am healthy and have hair again! 

I have to really commend my family for giving the support to me that they have.  I would never have made it through as well as I did.   I also want to thank the men at the TCRC for the support and information that they provide to everyone out there.  Congrats!!!! 

** I am attaching a Thank You that I sent out to my home town paper.  I thought you might find it interesting.

Thank all of you very much....

In 1997, I went through and experienced a very difficult time battling cancer.  Now that the "New Year" has begun, I would like to take the time to finally get a Thank You out to some very special people. First, I would like to thank my parents. They were by my side as a child, ready to hug me and "make it better", but this was a different situation. I know they were worried and frustrated, as this wasn't something they had any control over. If it hadn't have been for their understanding and support, and especially mom staying with me in the hospital, I would have gone bonkers!

Second, I would like to thank my brother Tedd, and sister Pam (and their families) for calling, keeping in touch, and driving to Madison for the surgeries.  It really showed me that no matter how old we get, or how far apart we live, my brother and sister will always be there.  I love you both very much! 

Third, I would like to thank my loving wife PamRose.  She stayed by my side through many things -- that not too many women could have handled.  She is a very special lady. I was mad at the world quite a bit, yet she wouldn't let me forget that things would get better.  It was with her help, that I could have faith and realize that things could have been worse.  Like the vows that we took five years ago, to have and to hold, through sickness and health--she was there by my side.  (You were right honey -- "Forever and a Day!!")

Fourth, I need to thank my best friend Brad.  You have been there for me through a lot of scrapes and battles in the past.  But nothing compared to last year bud.  We both did a tremendous amount of crying, laughing, and ultimately "growing up".  Yes, we are getting older, but we'll do it together!!  You are a special friend to both Pam and I.

And finally, I would like to thank all of our other family and friends, for all of their help with the move, cards, visits, and phone calls just to see how things were going.  It really meant a great deal to me, to know people were there for us.

I really love, respect, and thank all of you for the caring support and guidance that helped me (us) through this whole ordeal.  Now I feel that the future is much brighter,  not only because I am finally healthy, but that I have wonderful family and friends to share my life with.  I cannot ever thank you enough for the gifts you have given.

Love, KJ :-)

***UPDATE!!!!
I recently went in for my first 3 month check-up.  Everything is great. The cancer is still gone.  YES!!  I still had the "terrible" reaction to the contrast, but hey it was necessary.  My doctor said that I won't need another CT scan unless my markers go back up---And I am not planning on that happening!  Also, I have a tip for you, if you go through the CT scan. The generic "immodium" works just as well (better) than the name brand stuff --- even the advanced formula!


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