Prostate Cancer Awareness - 010

“To men, prostate cancer awareness is recognizing that every man deserves the right to forge his own path, even if data and years of medical training tell us what is “right”.  As clinicians and loved ones, we must understand that it is our duty to guide, but not our right to dictate the way things should go.  Although personal values, preferences, and beliefs may challenge our understanding and be flatly wrong if our goal is solely to extend life, we must recognize that the goals of our patients come first.  Quality of life and maintaining a sense of self truly is the most important thing to many men,…this must be respected.”

Alicia Morgans, MD, PhD

A month after meeting with the urologist, I followed up with “the smartest doctor” at “Baptist MD Anderson Cancer Center” in Jacksonville. This time I told Mike not to come because I thought he needed a break from the drama of cancer care appointments. Instead, I asked one of my best friends, Heather Alice Shea, M.S., to come with me. Heather is highly intuitive with a master’s degree in psychology and her energy is striking. She is gorgeous, both inside and out, and radiates vibrant energy of unconditional love and confidence. She has her own business where she teaches other business owners how to tap into their intuition to maximize their ability to serve others. I love her dearly and am so blessed to have her in my life.

The Oncologist walked in with his nurse and we all shook hands. I introduced Heather. I briefly mentioned that the urologist had said my case would be presented at their tumor board and asked if that had been done. The oncologist said, “Yes,” but despite a long meeting with him, I never did hear the recommendations of the tumor board.

I began to fill him in on my medical history and as I was speaking to him, I could sense that he was intently listening to me. That was my first sense that I was resonating with this doctor. He let me speak for as long as I wanted without interruption. Then the first words out of his mouth were, “You’re doing the right thing.” I almost fell on the floor.

He then clarified that quality of life and informed decision making by a patient is the most important factor in cancer care. And since I had tried the standard of care, ADT, and it had made me miserable, then me deciding to find another way to treat my cancer was perfectly fine.

Apparently, this oncologist, besides being the smartest doctor at MD Anderson in Jacksonville, is also one of their most considerate and kind physicians. We discussed other options, including genomic profiling of my tumor to see if I might be a candidate for the clinical trial I had discussed with their urologist. That study involves using an immunotherapy drug, rucaparib, in castrate-sensitive prostate cancer patients who have certain DNA repair mutations.

It was about this point in the conversation, I told him I had already scheduled an appointment with an oncologist at the “University of Texas MD Anderson (MDA) Cancer Center” in Houston. He seemed pleased with that as I’m sure that took a lot of pressure off of him.

He suggested I have MDA Houston arrange the genomic profiling of the tumor tissue from my prostatectomy as they tended to have better luck getting insurance companies to cover that cost. He also acknowledged that by me going to MDA Houston, I’d have much better access to a variety of clinical trial options.

He also said that he'd be happy to stay in touch with me, would be happy to help coordinate my care and that I was free to run any clinical trials by him if I had any questions. He wrote down his email address and handed it to me.

I think Heather and I were so pleasantly surprised with his kind and caring manner, that she asked him, “Can I give you a hug?” That’s my sweet Heather. He said, “Of course,” and they stood up and hugged. I could have given him a hug myself, but I didn’t want to overwhelm him. We shook hands and I profusely thanked him for being so kind, so open-minded and so willing to support me in the decisions I was making.

Before we left, the oncologist mentioned one of his patients that declined androgen deprivation and was having a stable PSA while taking an herb called “BIRM.” He also said there were some studies using the herb in “BIRM” involving prostate cancer. He said that I should consider checking into that and so I wrote down the name. At this point, I was feeling very happy that I had found a super-smart oncologist in my area that thinks out of the box, actually listens to his patient’s concerns, and is very kind and caring.

Heather and I stood up, we all shook hands and left the room. When she and I entered the elevator, we both turned to each other with our mouths wide open, and I said, “Can you believe that just happened?” That experience was truly one of the best highs I’ve had on this roller coaster ride with doctors who treat prostate cancer.

I can’t explain in words how important it is to truly resonate with your doctor and to feel that your doctor sincerely cares and understands you. That doctor’s appointment stands in stark contrast to the appointments I’d had with the two radiation oncologists that I decided not to go with. This oncologist listened to my concerns and supported me while the other two knocked me down and degraded me.

Studies show how important it is to have a good relationship with your physician. Patients tend to have much better outcomes with physicians they trust and who they feel understand and support them without judgment. That is another reason why it is a good idea to get second, third, and even fourth opinions if something just doesn’t feel right to you with a specific physician.

In the next newsletter, I describe my experience at “The University of Texas MD Anderson Cancer Center in Houston,” which is a prostate cancer center of excellence. Despite “Baptist MD Anderson Cancer Center” borrowing the name of the center in Houston, the center in Jacksonville doesn’t even come close to the real thing.