Having a Healthy Mindset - 019

I knew when I was first diagnosed with prostate cancer that it probably wasn’t going to be an easy journey. This is because I knew I was dealing with what’s called high-risk prostate cancer. The majority of prostate cancers are diagnosed before they have spread beyond the prostate, are considered low-risk, and most can be cured with treatment. If you’re diagnosed with high-risk prostate cancer, it’s more likely to progress despite treatment and result in death.

Several factors made my cancer high risk. I had a high preoperative prostate-specific antigen (PSA) tumor marker of 47 and my Gleason score of 7 was a less favorable (4 + 3) type. Tumor cells had already spread into my pelvic lymph nodes at the time of surgery and the tissue removed during surgery had positive surgical margins, meaning some cancer cells were left behind.

Most concerning was that my PSA tumor marker level never became undetectable despite definitive therapy. In my case, definitive therapy was a radical prostatectomy with lymph node dissection followed by short-term androgen deprivation therapy (ADT) and eight weeks of radiation therapy to my pelvis.

What made my situation even higher risk was my inability to tolerate more than two injections of ADT. The goal of ADT is to lower testosterone to a level less than twenty in an attempt to induce apoptosis - prostate cancer cell death.

The ADT injections I received were long-acting and despite it taking about four months for the medication to leave my system once it was stopped, it was a very short-term treatment. For men like me with advanced high-risk prostate cancer, four to six months of ADT is not considered effective therapy, even when combined with surgery and radiation.

Based on my risk factors, even if I had been able to tolerate long-term ADT, science says the odds of a cure were low. For the majority of men with advanced prostate cancer, ADT loses its effectiveness within 18-24 months of beginning therapy. This loss of effectiveness, in most cases, is due to the drugs creating pressures at the cellular level, which results in the mutation of tumor cells.

The initially hormone-sensitive tumor cells mutate into hormone-resistant tumor cells that are now resistant to drugs that lower testosterone levels. These hormone-resistant tumor cells are much more aggressive, more difficult to treat, and more likely to metastasize.  

Could long-term ADT have resulted in a cure if I had been able to tolerate longer treatment? The answer is yes, but only if I had been an outlier. An outlier is someone who responds to therapy in a way that defies the odds. We’ll never know because I experienced numerous intolerable side effects causing me to stop ADT. These side effects included depression, which made me lose my will to live.

Common sense tells you that when you’re battling high-risk cancer, if you lose your will to live, you’re probably not going to do well. Thankfully, after stopping ADT, my testosterone level returned to normal, the drug-induced depression and other side effects of ADT resolved, and I regained my will to live.

Some say that because the cancer is progressing, I should try hormone therapy again. Recent studies show triplet therapy that combines ADT with newer generation androgen signaling inhibitor drugs and chemotherapy would likely prolong my life. But prolonging my life at the cost of a miserable quality of life is not worth it for me. Taking a single ADT drug between surgery and radiation was one of the most horrible experiences I’ve ever had. I can’t imagine how rotten I would feel combining ADT with another ADT-like drug and chemotherapy.

Some might say, “Just imagine how horrible you are going to feel when you have metastases all over your body.” Unless I’m also an outlier with triplet therapy, the end result would be the same. It would be just delaying the inevitable while I experienced a terrible quality of life until I got to that point.

That’s the conundrum I face in this experience, but it’s better for me to stay away from those types of thoughts and instead be mindful of how good my life is right now. In doing so, I maximize my current quality of life, which is quite good. This positive mindset also helps keep my immune system strong.

Considering all that I’ve been through, and despite the cancer progressing as reflected by PSA levels and positron emission tomography (PET) scans, I feel blessed. I’m blessed to have a wonderful nurturing husband, loving friends and family, and the ability to work, exercise, and travel. I’m blessed that the cancer’s progression has been relatively slow considering I haven’t undergone any traditional treatment for it since my radiation therapy ended on November 1, 2018.

Through lots of self-care, I’ve been able to slow the cancer’s tumor marker (PSA) doubling time from six months to eleven months. PSA doubling time reflects how fast the cancer is growing, and the shorter the doubling time, the more likely you are to develop metastases and associated complications.

I’m blessed that as of the last PET scan two months ago, the cancer appears to be confined to very small deposits in six lymph nodes lining both sides of my aorta from the top of my pelvis to the bottom of my diaphragm. There is no evidence of any tumor in my bones, which is highly unusual for metastatic prostate cancer. And most important, the cancer is not causing any pain or compressing any structures in my body. For all of that, I’m incredibly thankful.

At some point, we all think about our mortality. The fact is we are all going to die, or as I believe, transition into the spirit realm. I believe we are spiritual beings living a temporary physical existence on earth. When my body dies, my spirit will transition back to the spirit world that many call heaven. Because I believe that, I’m not afraid to die.

My husband faced his mortality about eleven years ago when he was diagnosed with testicular cancer. He had surgery followed by chemotherapy and thankfully is cured. Because of his experience, he understands what I’m going through and is fully on board with the decisions I make regarding my cancer diagnosis. His acceptance comes from a place of unconditional love for me.

The most difficult part in thinking about a possible early death is how it could affect my friends, family, and loved ones. It’s especially difficult for me to think about leaving Mike who I’ve been with for over twenty years. I don’t want him to suffer though I know that’s not something I can control. His mother died a few weeks ago, which reminded us both how painful the grieving process is.

I sometimes worry about how much I might suffer in the days leading up to my death. Thankfully, I don’t dwell on those thoughts. I’m mindful to come back to the present moment and remember how good I currently feel and how good my life is.

Ever since I was diagnosed, I go through periods where I do really well from an emotional standpoint. Then typically about every three months, I’ll have a day of grief where I cry my eyes out for about half a day. The following day, I feel normal again. It’s as if every three months my body-mind opens up the floodgates to prevent me from drowning in sorrow and developing depression. The last time this happened was a few weeks ago, just after Mike’s mother died. I hadn’t had one of those days of grief in about five months and knew I was overdue.

I think because of Mike’s mom passing and the fact I was a few months overdue for a grief day, I had the most intense one I’ve ever had. Thankfully this was a day I wasn’t working and I bawled my eyes out for an entire day. In addition, I still felt sadness the next day, which is something I hadn’t experienced before. I was still intermittently tearful the next day and by the end of that day, the sadness was gone. On the third day, I felt terrific. I am very thankful for those grief days, as I intuitively feel they keep me from developing depression.  

Shortly after that, Mike and I left for a ten-day vacation. Because of that recent emotional catharsis, I was able to intensely enjoy that trip and stayed in a place of incredible gratitude for the entire vacation. I forgot I had cancer. It was a wonderful experience and resulted in one of the best vacations we’ve ever had.

When you are dealing with a potentially terminal diagnosis, the two most important things are to stay mindful of the present moment with an attitude of gratitude and to maintain hope for the future. Despite what I know from my scientific training and despite what doctors have told me, I have to trust that every decision I’ve made up until this point has been the best for me.

Second-guessing myself when something feels right ruins the present moment, creates an incredible amount of stress and negates my intuition. The intuitive decisions I make are made up of my gut instinct, an extensive knowledge base due to my medical background, and the willingness to scour the research for innovative approaches to treating prostate cancer.

You shouldn’t downplay your ability to combine your intuiting skills with informed decision-making about your health. Intuition combines gut instinct with wisdom and knowledge from your past and current experiences.

It’s your life and you’re ultimately the one who gets to make decisions about the next steps. In regards to advanced prostate cancer, I recommend you consult with qualified physicians in prostate cancer centers of excellence so that treatment decisions based on your gut instinct are well-informed.

Having a healthy mindset involves viewing my situation through a lens of gratitude, considering all my options, getting second, third, and even fourth opinions, working with innovative doctors, making informed decisions, and trusting my gut instinct. This experience has been a powerful teacher about the power of following my intuition and maintaining a positive mindset.

In the next newsletter, I’m excited to tell you about a recent miracle I’ve experienced. We’ll also discuss a condition called “oligometastases,” which opens up a window of opportunity for me and my physician to exploit.