Survivor Spotlight: Aaron Louison
Watch Aaron Louison through his 9 weeks of chemotherapy and then read his reaction about his first post chemotherapy scans.
My doctors were pessimistic about my first follow-up scan after 9 weeks of chemo. Because my testicular tumor was not pure carcinoma and teratoma was present, it was quite clear to them that chemotherapy would not be the only solution to my cancer.
The last thing I wanted to do after going through chemo was to have an RPLND (Retroperitoneal lymph node dissection), short for a maximally invasive surgery, which would suck. At least on my worst days of chemo I could walk and I wasn’t in pain. From what I heard post-RPLND, the pain would be so severe that I wouldn’t be able to walk for a few days, I’d be in the hospital for at least a week, I’d be on an drip of pain medication, and I’d have a nasty scar down my stomach. Not that I ever had six pack abs before, but a scar wouldn’t help.
A lot of people would rather have a surgery than chemo. I was the complete opposite. I did not want a surgery. At all. At least the chemo will wear off. After a surgery, I’d have a scar in a not-so-hidden place. All that I had been left with after chemo was a bald head (which will grow back) and two collapsed veins in my arms (which will get better).
I did not want anything permanent to result from this experience. It was going to be a chapter in my life that was kind of crappy, but that would be it. Once it was over, I’d go back to my life like nothing ever changed, just that funny memory of when I was in the hospital for 9 weeks because my balls hated me.
But, if I needed the RPLND, I wouldn’t fight it. I’d ask all the questions I’d need to ask, fully understand what the problem was, why exactly this was the right solution, and get as clear of a picture as to what I would expect before, during, and after the surgery. After all, I’d already gone through so much, what was one more little surgery?
Before I could find out if my abdominal lymph nodes were clear or not, I had to find out if my other testicle would hang around for the long-term. The first ultrasound that detected cancer in my right testicle also found an unknown mass in my left testicle. While they couldn’t clearly say it was cancer, the doctors said that given my circumstances it was enough to be wary. While it is rare to get testicular cancer in the first place, it is even rarer to get it in both testicles. However, they told me that for someone who has had testicular cancer once they have a greater chance of getting it a second time than someone who has never had it at all.
Since they weren’t sure what was going on in my left testicle, the plan was to scan it again after chemo to see if anything had changed.
On the day of the ultrasound, I was met by ultrasound tech Stacey, who didn’t know that the scrotal ultrasound she was performing was being done on my scrotum. No, she wasn’t trying to scan my testicle from my ankle, she just thought the noun for scrotum was “scrotal.” “Please put your scrotal on the towel,” she said. At least she inadvertently got a chuckle out of me before I’d find out if I’d be without balls for the rest of my life.
After she finished her scans, in walked the boss-lady. “The pictures look very good,” she mentioned quietly. Confused, I asked, “Wait, do the pictures look good? Or, what the pictures show looks good? Because there’s a very big difference. You can paint a beautifully accurate picture of a tragedy, and it’s still a terrible image.” Boss-lady responded after thinking for a moment about my question, “Both. Both the picture and what’s in the picture look good.” PHEW.
Boss-lady went on to show me images of the ultrasound which clearly showed no significant markings, masses, or questionable curiosities. “Clean bill of health, at least from me,” she said as I was ushered out of the room.
After an uneventful CT scan I then had to wait two days before meeting with Dr. Pomerantz at Dana Farber for the long-awaited answer to whether my lymph nodes were clear or not.
Depending on the cellular makeup of my lymph nodes, either the chemotherapy would be tremendously successful or it wouldn’t. If too much teratoma were present in my abdomen, the chemo would not be able to clean them out completely. Meaning, RPLND, or “suck” for short.
Months prior, I learned that Dana Farber as an institution airs on the side of caution when it comes to surgery. Their medical theory is that it is only a good idea to operate if it’s abundantly clear that it is necessary. Dr. Pomerantz touted their data to say that if lymph nodes are less than 1 cm in diameter post-chemotherapy, than the likelihood for cancer’s return is very, very low.
So that was the goal. Less than 1 cm in diameter. Before beginning chemotherapy, my lymph nodes measured around 2.5 cm. After a chemo regimen like mine, a pure carcinoma would be wiped out. But since I got to enjoy a mixed germ cell tumor, there was a cellular party going on in my body, and everyone was invited; the fat idiot called “teratoma” and even the boring “yolk sac tumor” got to show up for a bit of fun.
I sat in the doctor’s office waiting with my dad to hear the news from my doctor, good or bad. Before we had too long to think about it, Pomerantz’s oncological fellow came in to deliver the news: “We are pleasantly surprised with where you are, and did not expect this kind of result. You responded much better to the chemotherapy than we thought you would and your lymph nodes have shrunk almost completely. Of the three enlarged lymph nodes that were each around 2.5 cm in diameter, two have vanished completely, and one is around 0.9 cm.”
I had built myself up for the worst, expecting to hear that I needed the suck, and the only response I could muster up was, “so this is good news?” The fellow, with a laugh, answered, “Yes, very good news.” But he went on, “However, since your remaining lymph node is 0.9 cm, it sort of puts us in a medical gray-area. Normally, we operate on any patient whose lymph nodes measure at 1 cm or greater. You’re on the cusp of needing surgery, and in times like this, we leave the option open to you; either we can go ahead with surgery or not, it’s up to you, and either choice is a good one.”
This was not expected. The entire process up until now I hadn’t been given any choices. It was clear cut to every doctor I saw: I had cancer, I needed a testicle removed, and I needed to begin chemotherapy immediately. There were no choices, because it was very clear how to cure me. But now, there was uncertainty. Given this uncertainty, it was my opportunity to take things into my own hands and make my own decision, “No, I don’t want surgery.”
“Okay,” the fellow replied, “However, this doesn’t mean you’re in the clear just yet. Because you are in this medical gray-area, we have to be much more wary than we would on another patient. We’ll have to perform our next CT scan sooner than we normally would. We have to watch very closely, and if anything changes, even a little bit, we’ll have to move ahead with a surgery. If that lymph node grows before the next scan that means there is cancer left and we have to remove it.”
In walked the boss-man, Dr. Pomerantz to offer his concurring opinion and to explain some of the statistics going into this decision. “Based on your situation,” he said, “if we were to open you up in an RPLND there’s a 75% chance that we’d find nothing. That your lymph nodes are enlarged but they are empty. There’s a 25% chance that we’d find something, but only a 5% chance of what we’d find, it being cancer. So really, you’re looking at a 5% chance out of a 25% chance that something is going on in there. Given these odds, we’d rather not go ahead with a surgery. There are some patients, however, who say ‘no matter what I don’t want there to be any chance for cancer so open me up and get it out!’ That’s why we give you the option.”
Knowing this background, I made sure it was even clearer than before that I didn’t want to go ahead with surgery. Since I’m being scanned again in a few months to see if anything had changed, that scan might make it even clearer that I do need surgery, and if that’s the case, why speed that up? Might as well buy myself a few months of recovery post-chemo before actually needing surgery in the future.
Before we left the meeting with boss-man and his fellow I asked, “Why do you think my cancer responded so well to the chemo?”
Boss-man replied, “Beyond the simple answer of the cellular make-up in your body, I think it had a lot to do with your strength. It’s not often we get someone who is as optimistic and positive throughout this process. That has a huge impact.”
A few weeks later I made a donation to Dana Farber in honor of my nurses and doctors. The development staff allowed me to send a personalized card to each doctor with a note. After doing this, I received a call from the medical fellow and he thanked me for the gesture. After we spoke for a few minutes he left me with this, “In medical school, they teach you that one day you’ll have a patient who you’ll never forget. That’s you, Aaron.”
Now it’s early February, two months after getting the good news in December, and a month until my next follow-up scan in March. Mostly everything is back to normal. The hair on my head is growing like a chia pet, and it’s almost as if I never had cancer in the first place. Except for a few reminders. I can still feel the two collapsed veins in my arms, although they are not nearly as hard as they once were. And of course, a prosthetic testicle DOES NOT feel like a real testicle.