Our first experience with testicular cancer was in January 1989. My boyfriend, Steve, was 22 years old and I was 19. We had been going steady for about a year and were talking about getting married and starting a family. As a matter of fact, we had just gotten engaged on Christmas Eve 1988.
He had found a pea-sized lump in his left testicle that he said was very painful, especially if the seam of his jeans rubbed the wrong way. I talked him into having it checked. I made the appointment with a general practitioner and went along for the appointment. By the look on his face when he came out of that office, I knew it couldn't be good news. The doctor checked him out and told him, "I'm no expert, but I think you may have a tumor there. You probably should be checked out by a urologist." We went back home to his parents house that evening-it was a very emotional time for the two of us. A stranger had nonchalantly told him that he may have "the Big C."
Two days later, he had an appointment with the urologist who, after a battery of tests, confirmed that it was a tumor. He explained to us that the diseased testicle would have to be removed. The appointment for the orchiectomy was made after much discussion with the doctor.
The morning of the surgery, he and I rode to the hospital together hardly talking at all, which was unusual. We always talked about whatever was on our minds. After he checked in that morning, we sat in the room and he made me promise not to let them do anything that wasn't necessary. He wanted me to make the decisions for him, not his mom or dad, but me!!
Finally, they took him to surgery. After was seemed like an eternity, the doctor came out to talk to us. It was indeed cancer and that he had "the fast-growing kind." We had some pretty hefty decisions to make. I just left our families and found a nice quiet corner in which to lose control of myself. WHY??!!
He came home two days later and the "fun" began. He had consultations and other appointments to keep. He found out that he would have to start chemo for a 3-month period, then depending on the tests, possibly another surgery to remove the abdominal lymph nodes. He had wonderful doctors and nurses. As a matter of fact, his oncologist was married to his urologist, which made us more comfortable knowing that the right hand knew what the left hand was doing. The oncologist explained that this was 90% curable. She was willing to set up appointments with fertility doctors, so we could freeze sperm and such. When she told us about the very real possibility of the second surgery to remove the lymph nodes, she said we needed to make a decision for another hospital because they just didn't do that there. We talked to another surgeon and he told us that if he performed the surgery that Steve would be 100% sterile because he would go in a "clean everything out." Another blow!!
Five days after we found that out, we were married in a nice little ceremony with most of our family present. Our wedding day was not like most as you can imagine. I took a half of a day off work that day (a Friday) and we spent the morning at the doctor's office making arrangements for him to start his chemo on Monday morning. Our wedding was scheduled for 7 PM--We got home from the doctor's at 5:35 PM. The wedding went real well. There wasn't a dry eye in the house. We often wondered if it was because people felt sorry for us because he was "sick." So, we left on a short honeymoon on Friday night after the ceremony and returned on Sunday afternoon.
Monday morning, the newlyweds left for our first chemo treatment. By 6 PM that night, he was hugging the toilet, violently ill. I got him to bed and cried myself to sleep. I hated to see such a strong man down!! Two weeks into the treatments he started losing his hair. A woman from a local beauty shop knew us, and she offered to help with a man's wig. She ordered it for us, then when it came in she cut and styled it for him. The rest of the time went by as smooth as could be expected.
Then the dreaded abdominal CT that showed a mass. The doctor informed us that the second surgery would be needed. We had done some research and decided to go to Indiana University for this one because the doctors were considered to be at the forefront of this type of surgery.
Once the details were all taken care of, we went for the surgery. His physician, Dr. Richard Foster, talked to us in depth about personal issues. He told us that if it was possible, he would try to give us a least a 50% chance of maybe being able to have children. Finally, a little good news.
The day of the surgery...after 4 long hours, the doctor came out and gave me some more good news. He was able to save the right side of nerves and the mass that they removed was not cancerous. I could see Steve in about an hour, but I needed to prepare myself for that fact that he was going to look scary. Boy, did he ever!! Jugular IV line, along with 3 others. The next night he was a little more coherent. He did wake up and tell me that I was THE only reason he had went through all he had in the last 6 months. He never would have had the courage to do all that by himself. After 9 days there, the doctor released him saying that was the quickest that anyone recovered. That was in June 1989. [Editor's note: People commonly recover quicker than this these days.]
By October, life was pretty much normal. He was going back to work. The only thing was those doctor's appointments. He would have his blood drawn, then a week later he would see the doctor. In that week's time, we secretly worried about the results. That eased over time.
The first part of November 1990, I had been having some back problems. Steve took me to the emergency room. The examining physician wanted to put me on muscle relaxers and asked about my menstrual cycle. I told him that I was 6 days late. He wanted to do a pregnancy test anyway, even though I had told him about Steve. Low and behold---the test came back positive. It was a serum quantitative BHCG. I was only about 3 weeks pregnant, but nonetheless, I WAS PREGNANT!! Steve didn't want to tell anyone because he just didn't believe it. I saw my gynecologist 3 days later and it was confirmed that I was.
The last part of November he was scheduled to see Dr. Foster at IU. He was a little surprised that he had done his job THAT well. He said that we didn't need to return that he would just keep in touch with our local doctor. The next 9 months went well.
On July 18, 1991 at 7:22 PM, I gave birth to a healthy, beautiful baby girl that weighed 9 lbs. 2 oz. and was 22 inches long. Things couldn't get any better!
For the next 6 years, things went well. Steve's doctor's appointments were always good. Then, one day he told me about this lump in his one remaining testicle. It didn't hurt and it seemed to move around. I later found out that it had been there for awhile. I urged him to tell the doctor about it. She wasn't really concerned, but decided to run some tests.
In September 1997, we got the news! All tests for cancer were negative, except the ultrasound. It showed a mass contained in a sac. Talk about the world crashing in on a person. I retreated into my own world! I became angry and hostile toward everyone, especially my husband.
I was going through a tough time. At the age of 48, my mother was diagnosed with CHF (congestive heart failure) and was told basically that if she didn't have a heart transplant, she was going to die. First, my mom was given this news and now my husband. I was so afraid that everyone I loved was going to leave me all alone.
Our 6 year old daughter knew something was going on. She asked me the night before he was to go to the hospital, "Where is my daddy going?" I explained as best as I could about the surgery. She looked at me and said, "I don't want him to go." Then, she got up and went to the kitchen and crawled under the table and cried. I went out there and pulled out the chair and crawled under there to cry with her.
Steve stayed over night because the anesthesia made him sick. Stephanie was so glad her daddy was home. The only good thing this time was the tumor was enclosed in a sac, therefore, no chemo would be needed this time. We came home with a small drug store--dressing materials for the incision, antibiotics, and testosterone tablets. (The patches came later.)
He was really unprepared for the menopausal symptoms he was experiencing. The hot flashes and mood swings. We called the doctor, who wanted to do a testosterone level and possibly switch to the patches. The low level was the problem, so he went to the Androderm patches and things were better for him. [Editor's note: Testosterone tablets are a really bad idea since almost all of them can damage the liver.]
My emotional state, on the other hand, was a whole different story. I volunteered to start working 6 days a week. I work midnights as a med tech, so it wasn't really like I had a day off. This was my escape from everything. I was so angry! This wasn't fair. I told my friend that I went through this once, and I didn't think that I could do it again. I was older and had a little more sense about myself. I worked through my anger by talking to Steve, which is something we had forgotten how to do because things were going so good until this point.
I am stronger than I thought. It's been 18 months since the second TC diagnosis and I am still here. My advice to any significant other would be to stick it out, get counseling together, if you need to. No things aren't going to be easy, but it will make you a better person.
Steve and I don't mind talking to people about the disease if it helps someone. I found this website and think it is a wonderful gift, and I want to commend you. In today's society, it seems acceptable for people to freely say the word breast, but there is a stigma attached to the word TESTICLE.
This disease affects women, as well as the men. To the men, don't be afraid to talk to your partners. No, we won't think you are weak if you admit you are scared. Vulnerability is OK (we won't tell, toughguys).
The "C" word is enough to scare anyone at any age. Just keep your follow-up appointments, never take anything for granted, and talk about what you are feeling. Thank you for the opportunity to share my experience.