Mike's Story About Testicular Cancer & Chemotherapy
Written by his Wife
Hi! This is the story of Mike, who was diagnosed at age 39 and wound up being chemo-resistant, which was when the worry really started…
So…it's July 2002 and one of Mike's testicles was suddenly harder. Not enlarged. No lumps or bumps. Just harder than it had been and certainly harder than the other testicle. Of course, I wanted him to get checked right away, but Mike had gotten "bumped" at work and he figured/hoped that had caused some temporary issue, so he waited. Well, in another week or so the damn thing started to swell. And swell. And SWELL.
First moral: If there's even a remote possibility of cancer, DON'T WAIT!
Then the wife said, "Call or I'm calling for you." Mike looked up a urologist in his insurance book and called. Unfortunately, that dr's office gave him an appointment for 3 weeks hence, even though he explained what was wrong and said he thought it might be cancer. Again the wife opines, "No good." Mike called another urologist on the list who, luckily, had trained his staff that if any guy called with symptoms like those, they should get the guy right in. They gave Mike an appointment for few days later. Whew.
Second moral: If there's even a remote possibility of cancer, DON'T LET SOMEONE ELSE, EVEN A DOCTOR'S RECEPTIONIST, MAKE YOU WAIT. Get a quick appointment even if you have to change doctors to do it. And partners, if your guy is hesitant about having doctors check him out "down there", push the issue - playing roulette with your life is too high a price for shyness. Tell him to get over it and get to the doctor.
Third moral: I've learned throughout this experience that IT PAYS TO GO TO EXPERTS. If there's even a remote possibility of testicular cancer, go to a urologic oncologist for the initial examination if you can. That's what the second doctor, who got Mike right in, was. I hate to generalize, but it has crossed my mind that perhaps that's why his office took this more seriously than the other, regular, urologist's office.
When Mike got to the office, the doctor took Mike's story, did a physical exam, did an ultrasound right there in the office, and took blood. He said, "I'm pretty sure your have TC and I am scheduling you for emergency surgery the day after tomorrow, but I will send you to another doctor tomorrow to confirm what I see." He was right. Two days later, Mike had the Orchiectomy and a few hours after that surgery, I drove him home (trying not to hit bumps).
We saw the doctor again soon afterwards (a week later, I believe) for the post-surgical talk. He had the results of the pathology and some ideas for treatment and names to consult with. Mike had a mixed non-seminoma (cell types: mostly embryonal, with yolk-sac, choriocarcinoma, and some immature teratoma). There had been some vascular invasion (that means that the tumor had accessed a blood supply in order to grow, and isn't the happiest indicator because the tumor could have already sent some of it's bad cells out to circulate through Mike's body via the blood system). The doctor also told us that TC is the best kind of cancer a guy can get, because it's pretty curable. He told us that, given Mike's type of TC, there were three basic treatment arms possible (surveillance, rplnd, and chemo), and sent us out with a couple of names of doctors to consult with while he continued to monitor Mike's blood markers and order x-rays and CT scans. He said, though, and he was right, that the two big centers in the U.S. for testicular cancer are Memorial Sloan Kettering in NYC and the Department of Urology at Indiana University's Medical School. He gave us the name of the surgeon at MSKCC who is one of the world experts in rplnd, and the name of another general oncologist in NY with whom he often worked to do chemotherapy.
We went home and also asked all our friends and relatives in the medical field if they could ask around to see who had strong reputations for working successfully with TC. They came back with another name. We wound up consulting with the general oncologist Mike's urologist recommended, the one our friends recommended who worked at a large respected hospital more locally, and MSKCC. For multiple reasons, we decided to go with MSKCC. One of the biggest - they had lots of experts on hand and they took a team approach to Mike's care.
The MSKCC surgeon also discussed with us the three options. Mike had some indicators that this tumor might be aggressive, but he also had a complicating hereditary blood problem that made him a riskier candidate for surgery and chemo. There was a possibility that the cancer had not yet spread, so given mike's particular complications, we all agreed that surveillance now was the best option, with the other treatments in reserve in case the cancer came back.
Fourth moral: BE INFORMED, so that you can ask good questions and feel good about the decisions the doctor is making for/with you. Use reputable websites like this one to gather some information and help you think about questions at each stage, and be sure to INFORM YOUR DOCTOR about anything that might be important information. We had told many doctors about Mike's blood issue in the past, and all of them pooh-poohed it. When we told the doctors at MSKCC about it, their eyes bugged out and they sent us right to one of their hematologists to run tests and come up with a plan.
So, we were surveill-ing. Unfortunately, within 2 months, Mike's markers started to come back up. The cancer was back. Since the original tumor had accessed a blood vessel and the cancer may have gone anywhere, the next step was chemo. The surgeon sent us to one of the TC chemo specialists in-house at MSKCC with whom he had been consulting about Mike (little did we know then, that this guy is also one of the biggest in the field - we feel so lucky to have gotten these two doctors), and he recommended one of the two standard TC chemo treatments, 4 rounds of EP. This was especially important to us since Mike is an athlete, and the other big standard treatment, 3 rounds of BEP, can cause some lung damage as a consequence (that's also why Lance avoided it). We decided to do the EP as an outpatient at one of the MSKCC outpatient facilities closer to home.
We started the chemo during Thanksgiving week, 2002. One week of chemo, M-F, then two weeks off was our cycle, and Mike was also on another med to try and avoid complications from his hereditary disorder. There was an initial bloom of the markers right after chemo started, which was normal, then they started heading down. Things looked good as we progressed through cycle 1 and 2 and 3 and…just before we were to start cycle 4, the markers started going back up! We did cycle 4, but knew we were headed back to the big TC chemo doctor at the main campus, and that Mike had now joined the ranks of the small percentage of guys whose cancer is able to resist the chemo. NOW we were scared.
But we talked with the big TC chemo doctor at the main campus. He had a plan and also recommended that we talk with other big folks if we wanted to do so (including Indiana) and gave us some names. He ran more tests, including a whole body scan. I also did a lot of reading out of medical journals.
Caveat: I am a researcher with a science background, so reading the medical journals and textbooks was not hard for me and it was very helpful in keeping me informed and emotionally centered. It is not, however, something that everyone is ready to do or comfortable doing. Mike, for example, didn't really want to know more than he absolutely had to know, and I honored that. Me? I whack out when I can't get a handle on something. I understood enough of the lingo to get information and not panic; and I always felt better the more I knew because I felt more prepared to deal with whatever was coming. (Is it a false sense of security? Perhaps. But it has been useful for calming my psyche down by de-mystifying events, for helping me know what questions to ask, and for finding practical information - especially in nursing journals and websites - that would help me keep Mike comfortable during treatment.)
So, there are chemo protocols that can kill off the cancer even if you are resistant to TC, but they don't work for everyone. One of the big reasons we chose to stay with MSKCC at that point was that the medical research I was reading showed that this chemo doctor is one of the leading guys in the world, and that his protocol was resulting in a better response rate with somewhat less nasty side effects than the other standard protocol for chemo-resisters.
So, then we began the new protocol. It meant 5 more rounds of chemo (the last three of which would be at high doseages), mike would need to have stem cells collected so he could get some back after each high-dose treatment, and he would have to be inpatient at the main MSKCC hospital for the weeks when the drugs were being administered (though he could go home in between). But, it had the potential to save Mike's life, and to do that with less nasty side effects than some of the other high-dose protocols. Luckily, the stem cells were able to be harvested from his regular old peripheral blood and not from bone marrow. We went to MSKCC's Blood Donor Room, they hooked Mike up through his port, and the harvesting began! No pain, no problem. (OK, it took a few days to get the millions they needed, but hey, we brought books and laptops and met nice people - and no-one had to stab him in the marrow.)
I have to say at this point that Mike has been pretty lucky also with how well he tolerated both chemo protocols. It was certainly no picnic, and he has some residual side-effects, but he really did not have too many issues during treatment. There were some days when certain side effects bothered him more than others (to be honest, the leg pain from the taxol was searing, but it was also short-lived, and we did have painkillers), but really, thank heaven, he tolerated it all very well. I also have to say that the care we received from the hospital was pretty terrific, and that makes a big difference, too. And we met some cool people while we were there - other guys in for rplnd or chemo, and it helped all of them to talk with each other, I think.
Right now, in June 2003, we have just finished the high-dose protocol. Mike's markers have been normal for a couple of weeks and look like they are staying there! We are about to redo the CT scans and then head for surgery, then we'll go back on a surveillance protocol.
Some last pieces of advice for you all:
GET SUPPORT. It's so important to have people you care about to either help out with your needs, help keep you smiling, help you get information, or listen when you need to vent. It also helped me to have reputable resources to read, both about the medical stuff and also about the emotional side of cancer. Mike's cancer was kind of a double whammy for us, since I had just had surgery for thyroid cancer (also a "good" kind, thank heaven) about 4 months before Mike's diagnosis. I am convinced that that experience (learning firsthand that people can live life after cancer) made me much more able to handle Mike's diagnosis. But all of this, on top of life's usual challenges, was hard to digest at times, and reading and professional counseling helped. Last, but not least - having sites like this one available, both for information and for support, was invaluable. When I needed to vent but not burden Mike with it, or when I needed some support for myself outside the meeting time of my cancer support group, this site's forum was a prime resource for me. I'll never forget the people who helped me here. Mike and I hope that, in return, we have helped others, too.
STAY POSITIVE. In the overwhelming majority of TC cases, and I mean overwhelming majority, you can be cured and go back to a pretty normal life. We've met too many people now with other types of cancer who don't have a good prognosis, or who have had really painful side effects - and we've seen both of those things in children. Children! Talk about life not being fair. But for you chemo guys - you have a great shot at returning to normal. There were difficult times when we cried or got angry for a little bit, but then we got past it and tried to be as normal and happy as possible. We did not and do not want to be cancer victims. We brought books and laptops and music and games to treatment sessions with us. Hey, we even tried to see how often we could make our doctors laugh - now that was fun! And Mike focused on his goal of piTChing next year and planning how he'd get back in shape to win his leagues and tournaments, rather than focusing on what he was going through day-to-day, and that helped, too. The more positive you can be, the more your mindset will help you through this.
Things are looking good, but we still have to do the rplnd and see what that pathology shows, so we may be back to add more to this story. At best, we have a feeling that we'll be looking over our shoulders for quite a while to come. But that's still better than most folks who get other cancers. That's our story so far. Good luck with yours!
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