Remaining Positive in the Midst of Prostate Cancer
Last updated: March 2023
Having a cancer diagnosis, not to mention the effects of some of the cancer treatments, can cause all kinds of emotions including disbelief, fear, and worry. My initial reaction was disbelief. For my wife it was fear and worry. Sometimes the treatments involved can be difficult to live with and can even affect relationships. Different treatments have different effects on different people.
Worse than anything I had ever experienced
My first treatment was robotic surgery in 2018. For some people this surgery is a bump in the road. One side effect I experienced from that surgery was worse than anything I had ever experienced in my 63 years of life. I wasn’t sure I wanted to be alive. I lost significant penile length, to the point I only had about an inch remaining while standing. Sitting down retracted my penis to the point of pain.
It was extremely hard to remain positive. The original surgeon made it sound like I was cured and said I should be happy. All I had to do was continue having my PSA tested.
What was done to me in that surgery made me spend thousands of hours researching and talking to doctors, cancer survivors, implant surgeons, land mine survivors, transgender people, and transgender surgeons. I had another urologist examine me, and the look on his face told me all I needed to know. I searched out every online forum I could find that I thought might contain an answer. I even retired early. I made a lot of new friends.
Trying to reduce my misery
After about a year of research I found a possible way to reduce or eliminate my misery, but I didn’t tell my wife for 6 months because I thought it could cost me my marriage. I continued to search for another way, as well as trying to figure out what I had to do to get the surgery that seemed to be my only option. I even met and spent four days with a retired Mayo Clinic research doctor.
In less than 2 years, and before I could do anything, the cancer came roaring back with a doubling time of three months. I had researched radiation, since that appeared to be the next logical step. After an Axumin PET scan indicated my cancer hadn’t spread, I started ADT with a Lupron injection. One month later I received 8 weeks of radiation. I am still undetectable 3 years post-radiation.
Testing my marriage and relationships
I had surgery in 2021 to fix my botched RARP and make life worth living again. The surgery was Zero Depth Vaginoplasty. It makes you female externally without the possibility for penetration, but works with a short urethra.1,2
My preoccupation with my research and the subsequent surgery tested my marriage and changed some of my relationships even to this day. The enormous amount of time I spent researching what was necessary to alleviate the pain caused by RARP was difficult for my wife. I had been married for over 40 years, but LOVE is the only reason I am still marred.
When something shakes up your life in a major way, you have to lean on those around you. Just don’t forget that they may be suffering as well. My wife is the only reason I fought to stay alive, but to her it felt like I was pulling away and becoming someone she didn’t know.
Dealing with loss of strength
Some people do well with their cancer treatments, but others struggle with side effects. Even now I still suffer some PTSD symptoms from RARP, but what I am currently dealing with most is the effects of radiation. The 2021 surgery shut down my testosterone factories permanently.
There is no way to know if the cancer will return, but I don’t waste my time worrying about it. I know some who struggle with hot flashes, but in my case, the hardest part of being testosterone-free is the loss of strength. I now have to get someone else to do some things that require muscle. I inject a relatively low dose of Estradiol to help reduce osteoporosis as well as for other effects it has on my body.
Through all of this I learned why my wife enjoys back rubs. We each have our own back scratcher to relieve itching skin, but she still gets an occasional back rub. As a plus, I did get back some of the hair on my head I thought was gone forever.
Finding so much to live for
I think it's good to try to focus on a path forward and enjoy whatever time we have left. It can be hard to stay positive, but there are success stories of people who have had cancer. There isn’t a cure for everybody, but I talk to some who have been survivors for over 25 years. Focus on your family, friends, and/or some type of hobby that you enjoy.
Prior to cancer, I was focused mostly on getting through each day and paying my bills. I have since found fulfillment in talking to and helping others I have met on this journey. I now receive email daily and sometimes phone calls from people all over the world, and I talk with many prostate cancer survivors. My wife and I are involved with helping homeless people and feeding them at a local homeless shelter. I am involved in church-related events as well as Bible studies with hundreds of people, some of whom many church people won’t even talk to or welcome into their churches.
I have found purpose in my life and have much to live for!
Has prostate cancer changed your life? (Select all that apply)
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