Todd1963
Posts : 3624
Posted 4/9/2024 6:53 AM (GMT -8)
The following is a direct reply to an email. I omitted anything that might be identifying. After I reread it before I sent it it occurred to me that perhaps others might benefit from it.
I apologize for taking so long to reply.. April is turning out to be a very busy month and we are only nine days in. I’m sorry about your cousins diagnosis. It’s difficult to get that kind of news. I was diagnosed at 42 and I just celebrated my 60th birthday a few months back. I understand that the initial phase of diagnosis and treatment can be a difficult time. It was for me. Seemed like every bit of news was worse than the previous bit of news. It’s hard to believe I’ve been playing this game for almost 18 years now.. The good news is Science has gotten pretty good at fighting this disease. There are so many new treatments, and even more in various phases of clinical trial.. Your cousin was diagnosed with prostate cancer at a very good moment in time.. There’s not much I can say regarding my treatment, and how it correlates to your cousin. When someone says they have Prostate cancer it’s like looking at one piece of a puzzle and trying to figure out what the completed puzzle is supposed to look like. You have to have more pieces before you can begin to understand.. Is the cancer a super aggressive cancer or is it more of the middle of the road type. What is the genetic makeup of the cancer. How far did it spread. Etc.
For example, my PSA was over 3200 my Gleason score was seven. The cancer had spread to my lungs, bones and lymph nodes, and maybe even my brain, and there was no genetic test back in 2006.. Each new piece of the puzzle correlates to a different form of treatment.. Depending if the cancer has genetic markers, there will be targeted therapies that do a better job against a particular type of cancer..
There is a standard of care. It is in a state of constant evolution, so none of the pieces are set in place. That is why it is extremely important that your cousins medical team is the best he can find and specializes in the treatment of PCa.. Where he calls home makes a difference. In my locations I would be looking at Fred Hutch or OHSU. The point is these places adhere to the most recent science and are constantly on the cutting edge of science. They are all affiliated with a huge research network.. Search SWOG and see what you can find in your area. They are an enormous research group. Oncology understands that this medicine plus this medicine plus this medicine used in conjunction with other therapies will prolong time to progression and time to death by such and such amount of months and years, but honestly, it’s still kind of a crapshoot. Every person and every case is different. The “Humane spirit” really tends to mess up medical prognosis.. Just remember, currently at stage four, there is no cure. Every treatment your cousin receives will be considered palliative in nature. Palliative simply means that it will provide the best standard of living possible. Palliative care is very effective. I know men who are well advanced with aggressive cancer that have done extremely well for seven or eight years now. Your cousin could very well live a long time. Of course, I suppose he could die tomorrow which truthfully makes your cousin no different than anybody else in the world. Although he may or may not have a better understanding of how his life ends he could be hit by a bus tomorrow and all of that speculation goes out the window. Live for today, Carpe diem, are no longer words on a inspirational poster. I guess you could say what’s most important is to “find
out what’s most important”. I know cancer is scary but everybody dies of something , and there is not one person on the planet who knows how long they’re going to live. Your cousin will go through current standard of care protocols. He should follow the course of treatment and he should really try to quit worrying aboutcancer because it’s a waste of spirit. He should ask his provider to look into clinical trials that fit his profile. He is new to treatment so there may not be many. His biopsy slides should be genetically tested. They probably have been already if he is seeing anyone who knows what they are doing.
This is something that is easy for me to say . I have done very well against this disease for a very long time. In someways, I have grown complacent when it comes to dealing with cancer but that is because I spend most of my time choking the life out of every single day. Sometimes I think the reason I’ve done so well against this disease is because , I was having so much fun living my life that cancer just became one of the details I was forced to deal with. The rest of the time I tried not to think about it. It wasn’t always easy and it still creeps through a crack in my armor to haunt my conscious thoughts , but I really do my best to brush it aside and let it go. Faith in God plays a huge role in my life. I have come to believe that if you seek out the little miracles, you will find them. Sometimes you even find a big one. It really is a miracle that I’m still here because the life I was living was incredibly toxic. Cancer changed that. I live better, eat better, laugh out loud often, enjoy the often overlooked moments with friends and family but most importantly with myself. Those moments of solitude where I am alone with God as I understand him to be . This disease has been one of the best things that ever happened to me and even with all of the trial and sometimes tribulation of a stage four prostate cancer diagnosis I am thankful for my diagnosis. It changed my life. Todd
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