Deciding On A Course Of Treatment
Jeff’s diagnosis of Stage 1 testicular cancer came in early June of 2013. We spent the next few weeks frantically researching and speaking to doctors.
Thankfully, we lived very close to Memorial Sloan Kettering Cancer Center, number two at the time in the entire nation for testicular cancer treatment and world-renowned. We had the best oncologists and surgeons at hand. After sharing the news with some friends, I learned that a colleague of mine also had testicular cancer and had been treated successfully at Sloan.
Even though we had all the reviews and data on the best cancer centers, having the personal connection really made me feel better. Logically, it didn’t make sense. However, the thought I had was, “If they could save him, then they can save Jeff.”
They did further pathology testing at Sloan and we learned that Jeff’s condition was Stage 1b non-seminona. Stage 1b meant that there was cancer in the blood vessel. (The blood vessel was removed along with the testicle back in June during the orchiectomy.) In short, the tumor was even more aggressive than we had thought and we were hoping it hadn’t spread farther. We would have to act soon.
We did do some research on our own but mostly we relied on Jeff’s oncologist at Sloane to guide us on our decision. Dr. Feldman was thorough, patient, and very helpful. He walked us through all the options. He didn’t rush us but he did stress the time factor.
I was ready to take charge and declare an all out war on cancer. I was over my qualms about my career — that ended once we got the complete diagnosis. I was ready put aside life as I knew it and do whatever it took to keep Jeff alive. I needed to step back and slow down.
It wasn’t my body. It wasn’t my disease. It wasn’t my outcome.
It was Jeff’s body and his decision.
I did tell him my opinion, but I stopped there. I let him take the time he needed to figure out the right decision for him. We did discuss it together as a couple. But it had to be his decision. And it was not an easy decision.
Working through the options was complex and nerve wracking. Our choice were observation, surgery to remove the abdominal lymph nodes or chemotherapy. What was the right one to pick?
Everyone has to make the right decision for himself, and it is different for everyone. I am not promoting one course of treatment over another. I simply want to share how flummoxed we were as we made our decision. This is what the situation was for Jeff in 2013.
The chances of recurrence with observation was 50–50. And, if the cancer did come back or show up elsewhere, it would require 3–4 rounds of chemotherapy. We were not comfortable with that. So, it was a decision between surgery and chemo.
Jeff’s chemotherapy option involved one or two cycles of a three-drug combo: bleomycin, etoposide and Platinol® (BEP). The recurrence rate of cancer with getting the cycle of BEP as treatment was 3–4%. Much better odds, but chemo came with many risks, especially for testicular cancer. If Jeff wound up needing three or more rounds in the long run, the risk for secondary cancer and heart disease is high. This was not something either one of us saw as a good first option.
I’d like to make a side note: We are SCUBA divers. Because BEP scars lung tissue, SCUBA would be out of the question if Jeff had picked that option. He factored that into his decision making. I was furious that he was even thinking about diving. I couldn’t understand how he could factor that in.
Again, it was his body and his choice. I told him that I didn’t care if we never went diving again as long as he was still with me. I left it at that. Thankfully, we didn’t need to have that argument as there was another option.
Retroperitoneal lymph node dissection (RPLND) was the third option. The procedure is an intense and invasive one. In the long run it had the least side effects. But, the odds of recurrence with this option were complicated:
- If they did not find any cancer then the rate of recurrence would be 5%
- If they found a little bit of cancer, then it would 15% , which was still good odds and Jeff could go to observation only at that point.
- If they found a moderate amount of cancer, then the chance of recurrence is 20% and the next thing do to is 2 rounds of chemo, but not BEP.
Does your head hurt yet? Mine sure did, as did Jeff’s. It was so hard to do the math and figure out the best approach. The worst part was the realization that so much of medicine is really about playing the odds.
As we went through our decision making process, we had a number of people play doctor via Google, offering unsolicited “advice.” I don’t know how to convey how upsetting that was. I know people want to do something, anything at all, but feel helpless. I know that people need to be able to do something to help them cope with the news. Still, it was terrible to have to field the suggestions.
What I wanted to do was tell these people (not a single one a medical professional) that what they were doing was disrespectful and disconcerting. Did they think we didn’t or couldn’t do our homework? Were they suggesting that they knew better than the team we chose? How could these people second guess our choices? How on earth did they think their Google search results were going to give us something more useful than top medical advice?
At least it was only a few people. I did not share my true feelings with any of them. Instead, I politely replied to each person, letting each know that we were going to trust Jeff’s doctors, especially since they were world class medical professionals. That nipped things in the bud.
I didn’t tell Jeff about any of that until after he made his decision. He was grateful for that. He didn’t want that additional stress while making his decision. (Little did I know that would be my first foray into playing Gate Keeper.)
In the end, Jeff decided, with my full support of course, to go with RPLND. We had been leaning toward this option and Jeff made the final decision to go for it because was the best course of action for him. In the vast majority of cases, his type of cancer (embryonal carcinoma) often spreads via the lymph nodes. The goal was to try get it all out before it could spread.
It was a big, important, difficult decision. It was going to be an even bigger, more important, and more difficult surgery. It would take a lot of preparation, both physically and emotionally. We started to prep.