How to Treat Patients - 007

My husband and I entered this beautiful new office, which looked like Architectural Digest meets zen. The entire staff was very warm and caring, and I first met with his nurse, followed by his social worker.

This would be the third radiation oncologist I’d meet with, and his office and staff were already making a good impression. After we chatted a bit, the doctor walked into the room and introduced himself, and I knew this was my doctor.

He was smart, kind, caring, funny, and, above all, listened to my concerns. We thoroughly discussed the potential side effects of androgen deprivation and radiation therapy, and he explained things so my husband could also understand.

When I told him that the other radiation oncologist said I never should have had surgery, he said, “Let me show you something.” He pulled up a website called the National Comprehensive Cancer Network, www.nccn.org, which is an evidence-based cancer guidelines site developed by the nation's best cancer specialists.

He walked me through the decision algorithm on the website using my preoperative findings. The algorithm showed that everything thus far had been done correctly, including my surgery. I was relieved.

Was the other radiation oncologist aware of these guidelines? She is aware of this but chose to interpret the guidelines based on my postoperative findings, not what we knew preoperatively. In other words, she used my postoperative findings of positive surgical margins and positive lymph nodes to interpret the algorithm in hindsight. That’s not how it works!

After my appointment with this radiation oncologist, he offered my husband dinner in their dining room while I went to redo the planning scan, with and without the endorectal balloon. It just so happened we were there on a Wednesday night, when they offer a healthy dinner to all patients and staff. The staff drew my blood for a complete blood cell count, comprehensive metabolic panel, PSA, and testosterone level. Wow! This was truly a convenient one-stop shop with incredibly compassionate care. 

I was reluctant to use the endorectal balloon, but he asked me to do one scan with it and one without it to help him decide if it would be beneficial during my radiation treatment. He presented this as a way for me to make a better-informed decision and I agreed.

The staff was very nice, careful, and attentive when inserting and removing the balloon. I have to admit that the endorectal balloon was as uncomfortable as I had anticipated, but after his kind and caring discussion with me, I felt better about doing it.

I left the office after having been there three hours, and shortly after I got home, I received a text from the doctor saying, “I just reviewed your CT planning images. Your treatment will be best without the balloon. Have a good night.” I was impressed.

This is how I imagined attentive and efficient cancer care should be. His office scheduled the start of my radiation therapy early the next week. What a dramatic difference from my experience with the other radiation oncologist. I was starting to feel very relieved and knew I had made the right decision to switch doctors.

As I was telling Mike about the text I’d just received, my cellphone started ringing. It was the radiation oncologist who owned the other clinic. I thought, “This should be interesting.” I answered, and she said, “Hi, this is Dr. (2nd Radiation Oncologist).  I got a message from your urologist that you’re going with Dr. (3rd Radiation Oncologist). I think that is a big mistake. You are not a candidate for proton therapy and the SpaceOAR.”

The SpaceOAR is an absorbable gel injected into the space between the prostate and the rectum that, like an endorectal balloon, helps to protect the rectal tissue from radiation. I don’t have a prostate, so that option was never discussed with me. She rambled on about what a huge mistake I was making and that Dr. (3rd Radiation Oncologist) doesn’t treat many prostate patients. She kept saying I was making a big mistake.

I had to cut her off, saying that Dr. (3rd Radiation Oncologist) never suggested proton therapy or a SpaceOAR and that I was going to undergo Intensity-Modulated Radiation Therapy (IMRT), the same type of radiation that she suggested. She then implied that Dr. (3rd Radiation Oncologist) wasn’t as good as she is and again said that he doesn’t treat many prostate cancer patients.

I’m thinking, “How does she know how many prostate cancer patients he treats?” She also told me there is no such thing as doing a planning scan with and without an endorectal balloon to decide if it’s best or not. I had just done that, so obviously, there is such a thing.  

Then I realized she was doing her typical schtick - planting seeds of fear and doubt while implying another doctor didn’t know what they were doing. She rambled on some more about not wanting me to make a mistake, and I finally just ended the conversation by saying, “I’m going with Dr. (3rd Radiation Oncologist.)”

She politely ended the conversation by saying I was welcome to return to her if I changed my mind. I thought, “If I changed my mind, I’d go to someone out of state rather than come back to you.” Thankfully, I was done with her and happily severed that tie permanently by hanging up my phone.

The following week, I showed up for my radiation simulation. Your first day in the radiation room is a run-through, a simulation of the radiation treatment without the radiation, to ensure everything aligns correctly with your body.

The room itself was beautiful, with dim lighting, chill music, and a very large contemporary mural of elegant flowers on the ceiling. Based on how everything lined up, specific points on my body were marked with a permanent marker, and a piece of clear tape was placed over them to protect them.

The next day, before starting the first radiation treatment, all of the tape covering the radiation markers was removed from my body, and small dots were tattooed on it. I had requested to be tattooed, so I wouldn’t have to worry about keeping the tape on for eight weeks.

I wanted to be able to take long baths and swim in the ocean without worrying about the tape coming off. The tape protected the radiation planning marks placed on my body with a black marker, which wouldn’t be needed with the tattoos. These small tattoos of black dots are so tiny that I don’t see them unless I look really hard.

On the first day of radiation therapy, I laid on the table with a full bladder, which helps delineate treatment areas, and watched as this huge machine moved back and forth over my pelvis, making strange noises. The plan was to focus the radiation on my prostate bed, where my prostate used to be and also to radiate the pelvic lymph nodes.

I didn’t feel a thing, but I knew the healthy tissues in my pelvis were getting collateral damage while attempting to zero in on the more rapidly dividing tumor cells. Things would go well with the radiation therapy until about week six, and then I’d develop terrible bladder symptoms, causing me to stop radiation temporarily.

We all thought the bladder spasms and urinary urgency were due to the radiation, but it turned out to be something else. An old friend had returned.