We had been planning a vacation for our second wedding anniversary for months. Seven weeks before, Mike started to experience some soreness and swelling in his left testicle. Immediate consultation with the family doctor produced an initial diagnosis of epididymitis and a prescription for antibiotics.
Mike has always been careful with his health and he was quite concerned that things had not improved two weeks later. So, a trip to the urologist was arranged. Once again, the urologist thought it was just an infection and prescribed more antibiotics. Three weeks later, Mike's left testicle was even more swollen and sensitive to touch. Quite clearly, something else was wrong and although cancer was a possibility, neither Mike nor I felt it was probable.
A blood test was taken and a sonogram scheduled for the next week. Neither test produced encouraging results. Tumor markers were way too high and his sonogram did not show a normal testicle. Testicular cancer was very suddenly the likely culprit. And so, one day before we were scheduled to leave for our vacation, our lives took a left turn.
Mike had gone to see the doctor that day with his father. I truly regret that I wasn't there for him when the urologist broke the news. I didn't quite know how to react when he called and tearfully relayed the diagnosis. Through our garbled conversation, the only things I learned were that TC was suspected, that he had to have an orchiectomy (testicle removed) and that we had quite a lot more questions than answers. Thankfully, my father-in-law spoke to me frankly and factually and, consequently, broke through the emotionality of it all.
Mike had an inguinal orchiectomy four days before our wedding anniversary and his twenty-eighth birthday. Instead of enjoying the sea and sun, he was basking in the afterglow of nauseous anesthesia, a four-inch incision and losing a testicle. My mother's recipe for chicken rice porridge and the doctor's prescription for percocet and ibuprofen were his salvation.
We spent our anniversary weekend hoping for the best but expecting the worst. Mike was not deluding himself about his condition and its ramifications--the beast had reared its ugly head and both Mike and I knew he was very vulnerable. I had to comfort him, keep my tears and fears at bay and hold everything else together. I was in a state of shock and operated on autopilot. Reality was washing over us in tidal waves.
Five days later, we received the bad news -- not quite the worst but bad enough. It was nonseminomatous embryonal cell carcinoma, one of the more aggressive germ cell tumors. Though the tumor was believed to have been limited to the testicle, embryonal cell carcinomas have been known to be highly aggressive compared to other tumor types and are associated with a 50% chance of metastasis in the retroperitoneal lymph nodes. The good news was that Mike was classified to have clinical stage I disease associated with a 98%+ survival rate. Our urologist likened our situation to a hellish roller coaster ride that we would ultimately survive. It had certainly started to feel like it.
The next three weeks were spent seeing one doctor after another, phoning one medical facility after another and reading articles about testicular cancer and its protocols left and right. I spent a lot of time putting together a record of Mike's illness, including test results, personal logs of every medical consultation even the ones by phone, surgery and medication records, and a quite comprehensive listing of phone numbers and business cards of medical personnel. In between doctor visits, Mike and I spent hours reading medical and cancer texts about everything related to TC from the chemistry of alpha-fetoprotein (AFP - tumor marker) to the need for living wills. Luckily, none of the bookstores and libraries we went to ever threw us out for overstaying.
About living wills and medical proxies: Mike was more than willing to have them. However, he was not at all comfortable about actually formulating these documents. Dealing with cancer, surgery and dying at this stage hit too close to home. We decided that I would prepare identical documents for both of us. Mike would only need to look at a final draft for any changes he wanted to make. Even though I was not the one with the disease, writing out a living will and medical proxy felt very strange and morbid to me. It was almost like I was inviting death, a feeling that a lot of people no doubt experience in the same situation.
In our research on TC, we learned that TC is less likely to occur on the left side. [Editor's note: This really is not true] Furthermore, RPLND on the left side is a bit more involved than on the right. We also learned that there were some fairly recent advances in RPLND techniques. We wanted Mike to undergo the nerve-sparing version of RPLND.
We decided for Mike to have the surgery at Indiana University Medical Center (IUMC) in Indianapolis, one of the leading facilities for TC. I pushed to have the best surgeon we could get - Dr. John Donohue, in this case. Mike and I decided we would go to IUMC even if we had to shoulder all the expenses. Fortunately, US Healthcare, our insurance company, came through for us with flying colors. Under a special program, not only would they cover Mike's medical and surgical bills, they would also cover both of our living and transportation expenses for the trip.
On a nice summery Tuesday morning, almost six weeks after Mike's orchiectomy, he underwent nerve-sparing RPLND while my father-in-law (who had accompanied us) and I sat and mechanically worked through magazines, crossword puzzles and a Nintendo GameBoy. The surgery went off without a hitch and no visible metastases (spreadings) were found. Mike was pale and woozy from the surgery and epidural when he finally woke up later that day.
The next day was better for him though the huge bandage on his torso was quite daunting. He had two or three IV lines going for his nourishment, antibiotics and painkillers. He also had a catheter as well as "stockings" and pumps for his legs to prevent blood clots from forming. He had to painfully exercise his lungs and was poked and prodded intermittently. Later in the afternoon of the day after surgery, Dr. Donohue dropped by to tell us that the initial pathology report on the lymph nodes was indicating microscopic mets in a couple of nodes. Though the full extent of the mets was not known at this point, all of us realized that Mike was, in all likelihood, to be upgraded to a pathological stage IIA. It was not a major setback as survival rates were not that different from stage I but it did change the options that were now open to us. Whereas with stage I disease, Mike would have been facing a 7% relapse rate after RPLND, he now faced a 30% relapse rate with the presence of the microscopic mets.
Mike recovered quite rapidly from the surgery and after four nights in the hospital, he was ready to go. He had his 52 staples removed 6 days after surgery and exactly a week after RPLND, we were on our way home. Because Mike is now officially stage IIA, chemo looms over us. His choices were clear: adjuvant chemo a month after surgery or surveillance alone, reserving chemo for relapse. None of our doctors could help us make a decision since both options lead to the same survival rates. Mike made his mind up pretty quickly to take the 70% chance that he had beaten the beast and would not need chemo. His decision immediately felt right for both of us even though our families needed more convincing.
These days, we see our oncologist for Mike's follow-up every 4 weeks or so. His blood is checked, chest X-rays are taken and, occasionally, CT scans are also taken. Five months after the TC diagnosis, we know he's not quite out of the woods yet even though most relapses, when they occur, happen within the first 6 months. However, our lives have calmed down somewhat and the cancer center staff have started to recognize us by sight. Mike's chest hair has grown over the scars that still look like angry red welts. And with all that, I do still find the scar's belly-button detour amusing.
TELLING FAMILY AND FRIENDS
Before his orchiectomy, only Mike's parents, his boss and a couple of close friends knew of his condition. We frankly could not handle explaining everything over and over again. Nor could we handle the endless questions that the rest of our family and friends were bound to have. A careless remark here and there were enough to break us. It was still too fresh and we were still quite sensitive.
Hence, we waited at least a week when we were sure it was TC before telling several immediate family members on both our sides. My mother, who is extremely close to Mike, was quite affected, and the sister I'm closest to felt our pain like it was her own. Everyone was pretty much devastated especially since Mike is so young and neither of our families had any history of cancer or a similarly serious illness that we ever had to deal with it up close.
Today, although a few more friends know, we still have not made Mike's cancer common knowledge. We both like our privacy and Mike detests having others feel sorry for him. I still dislike having to give out explanations and having to deal with the endless questions, some of which neither Mike nor I would ever have the answers to. In fact, most of the people who know about Mike's condition were told by his father or my sister. We simply delegated the task and our families came through for us. It's enough for Mike and I to know that our closest friends and immediate family support and pray for us.
It feels strange writing about our experience. But, somehow, the anonymity of strangers allow us to retain our privacy while we share our story. Reading about other people's experiences especially on cancer-l (where I usually just lurk) has been helpful and therapeutic. It makes me realize how lucky and blessed Mike and I are. I am humbled and awed by the courage of other cancer patients and their families.
FERTILITY ISSUES
Mike and I had been putting off having children. We do want to have kids, just not right now. After the orchiectomy, fertility was an important consideration in our decision-making.
First of all, around 25% (others estimate as much as 50-60%) of men who get TC are already subfertile or infertile at presentation. There is no consensus on what kind of relationship exists between TC and infertility at this point. In Mike's case, he had a sperm count that ranged from normal to low.
Second, until the early 90's, the accepted RPLND procedures almost automatically meant a loss of the ejaculatory function. Men who underwent RPLND could still have an erection and orgasm but usually had "dry" ejaculations. The nerve-sparing RPLND technique introduced a few years ago, practically ensures no loss of the ejaculatory function. At facilities such as IU, 99%+ of TC patients retain this ability. Because TC is relatively rare with only about 7,000 new cases a year, urological surgeons who are highly skilled at the newest RPLND techniques are difficult to find. One locally well-known urological surgeon could only guarantee a 50% chance that nerves would be spared.
Third, chemotherapy includes subfertility as one of the possible side effects. With the two or three courses of chemo stage I and IIA TC patients usually receive, almost all of the fertile patients will experience oligospermia or sperm abnormalities. Twenty to twenty-five percent of the time, this subfertility becomes a permanent condition whereas others usually regain their regular sperm count levels after several months.
Fourth, sperm banking is always an important alternative and hedge against possible infertility. Unfortunately, some studies have shown that sperm banked by men with TC have poor recovery rates. That is, the sperm quality of TC patients degenerates more than that of other men during the banking process. However, some newer IVF methods available today offset this problem.
Fifth, dealing with the possibility of developing cancer in the other testicle may also involve fertility. In Europe, doctors recommend taking a testicular biopsy to determine the presence of carcinoma in situ (CIS). Albeit CIS is not quite cancer, its presence indicates a high chance of developing cancer. When CIS is present, the [European] recommended course of action is to irradiate the testicle. This preserves the testicle and its hormonal production, minimizing the need for artificial hormone supplements. However, irradiating the testicle also kills sperm cells, rendering the patient infertile. US doctors downplay the biopsy option for various reasons, one of which is the rarity of cancer developing in the second testicle (about 2.5% based on the latest figures or a cumulative lifetime risk of 5%).
WHAT MIKE'S CANCER MEANS TO HIM
Mike's take on his illness is that it wasn't as bad as it first seemed. Certainly, the operations made him feel terrible for a period of time (his incisions still feel sensitive at times) and just the idea of cancer was scary. However, for Mike, the worst part of the process was the research and the search for the best doctors to help him. Looking for and going through TC information was difficult because of its scarcity, "medically-impaired" language and implications.
Furthermore, because we weren't too familiar with hospital and medical procedures, we also needed to look into our rights as medical consumers. We weren't quite willing to leave all the decisions up to the doctors -- too many cases and malpractice suits have been reported for us to take the risk of being uninformed consumers. When we went looking for doctors, we had to look for skilled professionals who are well-versed in TC treatment -- quite a tall order as it turned out given that there are very few TC patients.
The fact that we weren't quite comfortable with medical-speak was detrimental in our search especially when we had interviews with the stereotypical arrogant surgeons. For instance, we spent two precious weeks thinking that there was no difference between nerve-sparing and modified RPLND (Duh!). When we talked to the staff at IU, that was when we were convinced we had found the right surgeon - extremely skilled, compassionate and patient with our questions.
Basically, once Mike came to terms with losing a testicle and overcoming the fears that go along with it, the medical and surgical procedures were tolerable. We were confident that he would be fine ultimately. It was all the other petty details that he found worrisome.
WHAT MIKE'S CANCER MEANS TO ME
Mike's TC has been quite an eye-opener. It has highlighted the most important things in life. Oftentimes, we get bogged down by the petty details of day-to-day. Mike and I had looked at ourselves as having a lot of time to travel, have careers, and have a family. We seldom felt the immediacy and the preciousness of life until TC shoved it in our faces.
Mike's TC means having to reflect on why God deemed us worthy to face such hardship. A member of the religious had told us that God gives difficult trials to those who are strong enough to survive them. I have to believe then, that beneath Mike's and my easygoing lifestyle, we have a core of faith and strength that will see us through. Though I cannot pretend to be so devoutly religious as to do the rosary and pray everyday, I don't go through a single day without thinking of Mike's TC and God's plan for the two of us.
Throughout the most critical times of Mike's TC, I went back to what I usually do - research. It was one of my outlets and my refuge. I felt comforted by my knowledge of TC and, in turn, was able to reassure other family members. I don't think I would have been able to hold myself together so well if I had not been sure of the available answers and options. Knowledge is power - and, in my case, knowledge gave me strength. Having our own personal medical record of Mike's illness has certainly paid off -- we sometimes had a more complete medical chart than the doctors we were consulting!
Six months ago, if someone had asked me about having children, I'd have wrinkled my nose and said, "It's not for us yet. We love our godchildren and nieces and nephews but we're not ready for our own." Today, though my response would not be too different, my attitude has already changed. If I got pregnant today, I'd welcome our baby wholeheartedly even if it makes our lives more difficult and curtails our freedom to do the things we want to do. If circumstances were to prevent us from having our own biological children, adoption is an option Mike and I found ourselves open to. Even if we do have our own biological children, I'd like to believe that, somewhere down the line, we could give a parentless child a home.
Nowadays, I feel an urgency when I'm with Mike. An urgency to love and live because life is too precious, too fragile and too short to waste. When I was a teenager, I loved feeling the rush of adrenaline when I rode roller coasters. In the following years, I started to lose my nerve and couldn't bear to ride even the tamest ones. In several weeks, Mike and I will be at amusement parks in Florida. I do believe I will be right there next to Mike on as many roller coaster rides as we can handle. We'll be enjoying every minute of it. Carpe diem!
Disclaimer: All facts and figures cited here are from published articles and personal logs of our consultations with physicians. Some statistics are only ballpark estimates (pun not intended!!).