Alan & Niki's Testicular Cancer Story...
Written by Niki
In mid-June, 2002, Alan noticed a small pea-sized lump in his right testicle. He immediately showed me the lump, and we both decided that it was "probably nothing" but that we should make an appointment with the doctor just to be safe. That Friday, he met with his primary physician, who gave him an extremely quick testicular exam, and confirmed that there was definitely a small mass present, something that he said could be a variocele, and probably nothing to even worry about, but to be on the safe side he should have an ultrasound done. On Sunday we went to the hospital to have the ultrasound done, and were told that results would take a few days. At this point we had both managed to work ourselves up to realizing that in fact, this could be something very serious, and were wondering when we would hear what the test results indicated. During this time, we did massive amounts of research on the Internet and armed ourselves with as much knowledge as we could find. From this research we found many factors (undescended right testicle, age, etc.) that pointed to the fact that he could very well have Testicular Cancer.
That Monday afternoon at 3:00, Alan received a phone call at work from the urology department. They wanted to see him right away, but were unable to give any additional information over the phone. By this time, we were so scared and nervous about what that call could mean. We both immediately left our jobs and made it to the hospital in record time.
During this visit we met with Dr. Tebyani, his urologist. Dr. Tebyani explained to us that according to the ultrasound results, the mass in his right testicle was solid and not liquefied, meaning that cancer was a definite possibility and his testicle would need to be removed immediately. At first we both couldn't understand why there wasn't a way to tell 100% if the mass was cancerous - removing the testicle seemed so drastic to us, however in hindsight, of course we now understand why that couldn't be done. Blood work and a CT scan were done and the results showed no elevated tumor markers, and no indication that anything had spread into his abdomen. This was the first time throughout this entire process that we actually felt some sort of relief. His orchiectomy was then scheduled for that Friday. Needless to say, the last week had come and gone like a whirlwind. Just a week ago he had been seeing the dr. for what we thought was something minor, and a week later he was having his testicle removed.
The operation day came and everything went really well. He spent a few hours in the recovery room and then got to go home that day.(For any caregivers out there - I just want to say that it's totally normal to be freaked out too at this point - I almost passed out in the recovery room. He was lying in bed coming out of his anesthesia, and I almost passed out and I wasn't the one who had surgery! What can I say other than I was overwhelmed and I hate hospitals!) He was in pain the first few days, but dealt with it like a trooper. By Monday I can't say he was feeling 100%, but he was definitely on the mend. Approximately 1 week after the orchiectomy we had our follow-up appointment. During this appointment Dr. Tebyani explained that the mass in his testicle was indeed cancerous - 100% non-seminoma. He explained that the non-seminoma was one of the more aggressive cancers and gave us three treatment options: 1. Surveillance - to be tested every few months and watch to make sure the cancer did not appear. 2. Chemotherapy - a few rounds of chemo might help kill any microscopic cancer cells that weren't visible to the scans 3. RPLND - to have his abdominal lymph nodes removed to really ensure the cancer would not spread/travel. It was his opinion that with his specific type of cancer there was a 30% chance of recurrence. To us, this 30% was too high of a chance, so we opted for the RPLND operation. Dr. Tebyani offered two different versions of this surgery: The original one with the large incision and longer recovery time, or the laproscopic version. After weighing the pro's and con's we decided on the laproscopic version. We knew going into the operation that 100% removal was not an option with the laproscopic procedure, but with the known circumstances (his clear scan and normal tumor markers), we felt this was the best decision.
In mid-August Alan had his RPLND done. The surgery, which was supposed to last only about six hours actually lasted about nine hours. About 7 hours through the surgery the three doctors performing the surgery came down to talk to his mom and me in the waiting area and informed us that they had found and removed two tumors from his abdomen, the largest one being just over 3 cm. At this point they asked us what we felt Alan would want to do - have them finish removing what nodes they could easily get to laproscopically, or revert to the full-blown RPLND and cut him open to remove all of the nodes. With the one node being over 3 cm, chemo was going to be necessary, so we decided to have them finish what they could laproscopically, and then we'd move onto the next step in the treatment process - chemotherapy. And just to reiterate, during this entire time period, Alan never once had raised tumor markers. While this is a good thing it can also be frustrating as without tumor markers it's hard to find any indication as to whether or not the cancer is still active.
A few weeks after the RPLND operation, it was finally time to start chemo. We waited a few weeks for him to have the chance to recover from his operation and then jumped into the chemo process full speed ahead. We had only had the chance to bank sperm once at this point; however after we found out that chemo was necessary we made several more visits to the fertility clinic to bank some additional sperm "just in case" before we started chemo. We had our first initial consultation with his oncologist where we discussed Alan's case and he gave us two options for chemo, which we now know are the standard treatments for TC. Option A was to have 3 rounds of BEP, while Option B was to have 4 rounds of EP. He was scheduled to begin his treatment the following week, so we went home and tossed around our two options for a few days before deciding. After much research and discussion we both felt that 3 rounds of BEP was the best decision for Alan's treatment.
We started his first treatment the following Monday. This was sometime in September 2002, however I don't recall the exact date. The cycle of BEP basically goes like this: 1 week on Monday - Friday, 2 weeks off, with the exception of a weekly bleomycin shot that's given. The first week was probably the most difficult as it was such a new situation to both of us. Alan was feeling horrible and I was busy freaking out because I knew he felt horrible and had no control whatsoever over it. (I was also scared I'd almost pass out again!) We made it through the first week and Alan did really well. He was able to control his nausea with the meds they had given him and although he wasn't very hungry, he managed to eat very small meals and lots of snacks. I don't recall who gave me this advice, but it turned out to be wonderful! They told me to have lots of snacks on hand during his treatments and this really worked out. I would pack him a little cooler before he headed off to the "chemo cave" (as he affectionately called the chemo infusion center which was located in the basement of the hospital). He brought books, magazines and music to help him pass the time.
By the time the second week rolled around, Alan was experiencing major problems with his ears. Lots and lots of ringing and what turned out to be definite hearing loss. Also, he had major numbness in his fingers and toes. Needless to say, his oncologist was very concerned about these side effects and the fact that they were happening so early in his treatment. After evaluating his case, they decided to substitute the cisplatin with carboplatin when he began his second round of chemo. While his hearing loss, tinnitus (ear ringing) and digit numbness didn't get any worse, it didn't get any better either, but we all knew this was a very small price to pay to be healthy. Also, during the second week (day 14 to be exact), we knew his hair wouldn't be around much longer. He was now bald and beautiful! As a side note, every time we went out in public while he was in his bald stage people would stare. When we'd walk by those who were staring, he'd say really loud "Hon, I think I'm due for a haircut!"… He kept his sense of humor throughout this whole thing!
Early in round two, he experienced a very bad reaction to the bleomycin treatment. His throat all but closed up. Fortunately all it took were some steroids and he was back to being functional. Also in round two, he developed a really bad case of heartburn. Some Maalox and a few doses of protonix and he was back in action. Also in round two, his oncologist introduced neupogen into his treatment. Because it's been awhile now, I don't remember specifically when he took the shots, but I know he gave himself shots at home of the neupogen several days in a row. The neupogen is supposed to help keep your white blood count up, or help it replenish itself after the chemo kills it. The shots themselves weren't painful, but the after effects of them were. He would experience fairly bad bone pain from these shots, but just a few Tylenol would take the edge off of the pain and make it more bearable.
Round three of chemo happened pretty uneventfully, or as uneventfully as chemo can be. We were thankful that we didn't have to deal with any strange side effects like we had previously. The only thing that went wrong during round three was that his platelets were extremely low - so low that he could hardly drag himself out of bed. This is when his oncologist knew it was time for a blood transfusion. We were both kind of freaked out by the thought of the transfusion, but it was almost immediate after the blood hit his system that he started perking up. He felt better in a matter of hours - I have never seen anything like it before!
With our chemo days behind us, we quickly moved into surveillance mode. Immediately following the completion of his chemo, he had a PET scan done. This scan came back clean. Because his original CT scan came back clean falsely, his oncologist has put him on a rotation of CT and PET scans every 3 months. Along with those scans he also does bloodwork to check for tumor markers.
The cancer is something that is always with us, every single day, however some days it's there less than others. Not to sound too mushy or anything, but TC has changed so much of who we are… in a good way. You learn a lot about yourself and each other when faced with a situation like this. At the beginning we were both so frightened and didn't know if we had what it took to get through this, but we proved ourselves wrong, and we're even stronger in the end. Every 3 months there is that 1 ½ week period of in between time when you're waiting anxiously for your scan results and those nervous unsure feelings rush back. As much as we both wonder if those feelings will ever go away - I don't think they will. We now understand it's totally normal, and part of the process. We now have 3 clean scans under our belts and are so thankful for all that we have.
This story is not nearly as detailed and specific as it could be. Please feel free to email me personally at firstname.lastname@example.org if you have any questions, need a friend or just want to chat.
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