The Age Old Question, what do you mean when you say ...cured!?

My RO said that the word "cured" is basically a misnomer. You are cured for that day.

It has been 2+ years for me but I find that every 3 months, I get a little stressed out waiting for my PSA results but other than that, Prostate cancer is not on my mind. I will do a 30 second elevator pitch, at times, to people I meet on the golf course, about the importance of testing. I also consider myself in a far better position medically, than many others including others on Mayo connect and of some family and friends.

Hi Kevin, I am intrigued by your comment where you write “have lived a lot in these 11+ years, a far cry from that infamous day”.
Personally, I was diagnosed in March and my mental health is not good. How long did it take you to be in a better mental state after being diagnosed? I realize there will probably not be a day that goes by for the rest of my life when I dont think about prostate cancer, but there has to be room for improvement. Thanks!! 🙂

Hi Kevin, I am intrigued by your comment where you write “have lived a lot in these 11+ years, a far cry from that infamous day”.
Personally, I was diagnosed in March and my mental health is not good. How long did it take you to be in a better mental state after being diagnosed? I realize there will probably not be a day that goes by for the rest of my life when I dont think about prostate cancer, but there has to be room for improvement. Thanks!! 🙂

That's a good question...

At the time, the call from my urologist floored me, literally. I was 57, both daughters in high school. When we met for a consult about treatment, he didn't help when as we walked to the scheduling desk for surgery, he said "Kevin, that's a pretty aggressive cancer,,!" To the nurse, he said "this is Kevin, he's NDC..." I learned that was "newly diagnosed cancer!"

I began to settle down, albeit still unsettled after the PET/CT came back negative for any activity outside the prostate, I met with the surgeon who explained he would endeavor to spare the nerves. I said if you have to take them because you find cancer there, just do it, life was my priority.

After the surgery, when reviewing the pathology report and his notes, my surgeon said in not so many words, I was cured, though he did not use the word. I'm thinking T2CNoMX, looking at the Mx and thinking "they don't know if it's spread outside the prostate...!

Now comes the labs and consults every three months and the "prostate specific anxiety test! For the first five, no issues, < .1. The 6th, he looks at his screen, hesitates, then turns and leads with "this doesn't mean your PCa is back, it's .2. So now, we're back to 23 Jan 2014 and the phone call, floors me!

Now I begin to inform myself, reading literature (aka, research). I learn about SRT, discover the nomograms at MSKCC, discover that data from Mayo and clinical trials indicate with my clinical data, often BCR has spread to the PLNs and a treatment decision should consider including the PLNs and short-term systemic therapy.

I am beginning to feel that I am in charge, I am attacking my PCa, going for the gold ring (from my childhood, the merry go round where a gold ring meant a free ride), the cure. My medical team dashes that, dismissing the idea, saying there is not long-term data to support it. I acquiesce. I do the SRT to the prostate bed, 90 days after, my radiologist hesitates, I know that hesitation , then turns and says "Kevin, the SRT did not work, your PSA has more than doubled, it's .7!"

That is my "aha" moment. Never again, I will decide my treatment in concert with my medical team, the shared decision making model, their expertise, training, education, experience count in my decision making but I make the best decision and they support it.

Still, it was not easy going in and getting the Lupron shot, it was not easy going into the infusion center, for whatever reason, going in for radiation treatments never bothered me. I hesitated when taking the loading dose of Orgovyx...

Not sure I'm answering your question so let me see if I can wrap this up...

I have given one reason, the transition to shared decision making where I make the decision.
Another may be attitude, I have always been a glass half full person, looking on the bright side.
Another may be my experience over 22 years in the Army where the focus is on accomplishing the mission,., gathering facts, determining course of actions, choosing the "best" one and having alternative plans in case that doesn't work.
I have "mitigated" the side effects through diet, exercise and managing stress.
There are statistics about 5 and 10 year survival.
The older I get the more I understand there are less days in front of me than behind me, so get on with life.

I think you do get to a point the longer you are on this journey where you just deal with it. I can tell you that by and large, I don't think about my PCa in a fretting sort of way. I ski every year with friends, my wife and I have taken vacations, Ring Road in Iceland, Big 5 in Utah, New England coast, Oregon Coast, Colorado in the Fall, Sedona...today I am playing pickleball with a group of dads from our kids days, this weekend I rode the Garmin Unbound 50, a gravel bike ride in the Flint Hills of Kansas near Emporia with my sister and daughter's boyfriend. I've attended concerts to watch Chicago, Billy Joel, the Eagles, enjoyed the recent successes of some of my favorite sports teams, the Royals, Chiefs and Jayhawks, watched my daughters graduate from high school, college and become grown adults...

Ok, you get the idea, you too likely have a lot of living to do, as the Nike slogan says, "just do it!"

Kevin

That's a good question...

At the time, the call from my urologist floored me, literally. I was 57, both daughters in high school. When we met for a consult about treatment, he didn't help when as we walked to the scheduling desk for surgery, he said "Kevin, that's a pretty aggressive cancer,,!" To the nurse, he said "this is Kevin, he's NDC..." I learned that was "newly diagnosed cancer!"

I began to settle down, albeit still unsettled after the PET/CT came back negative for any activity outside the prostate, I met with the surgeon who explained he would endeavor to spare the nerves. I said if you have to take them because you find cancer there, just do it, life was my priority.

After the surgery, when reviewing the pathology report and his notes, my surgeon said in not so many words, I was cured, though he did not use the word. I'm thinking T2CNoMX, looking at the Mx and thinking "they don't know if it's spread outside the prostate...!

Now comes the labs and consults every three months and the "prostate specific anxiety test! For the first five, no issues, < .1. The 6th, he looks at his screen, hesitates, then turns and leads with "this doesn't mean your PCa is back, it's .2. So now, we're back to 23 Jan 2014 and the phone call, floors me!

Now I begin to inform myself, reading literature (aka, research). I learn about SRT, discover the nomograms at MSKCC, discover that data from Mayo and clinical trials indicate with my clinical data, often BCR has spread to the PLNs and a treatment decision should consider including the PLNs and short-term systemic therapy.

I am beginning to feel that I am in charge, I am attacking my PCa, going for the gold ring (from my childhood, the merry go round where a gold ring meant a free ride), the cure. My medical team dashes that, dismissing the idea, saying there is not long-term data to support it. I acquiesce. I do the SRT to the prostate bed, 90 days after, my radiologist hesitates, I know that hesitation , then turns and says "Kevin, the SRT did not work, your PSA has more than doubled, it's .7!"

That is my "aha" moment. Never again, I will decide my treatment in concert with my medical team, the shared decision making model, their expertise, training, education, experience count in my decision making but I make the best decision and they support it.

Still, it was not easy going in and getting the Lupron shot, it was not easy going into the infusion center, for whatever reason, going in for radiation treatments never bothered me. I hesitated when taking the loading dose of Orgovyx...

Not sure I'm answering your question so let me see if I can wrap this up...

I have given one reason, the transition to shared decision making where I make the decision.
Another may be attitude, I have always been a glass half full person, looking on the bright side.
Another may be my experience over 22 years in the Army where the focus is on accomplishing the mission,., gathering facts, determining course of actions, choosing the "best" one and having alternative plans in case that doesn't work.
I have "mitigated" the side effects through diet, exercise and managing stress.
There are statistics about 5 and 10 year survival.
The older I get the more I understand there are less days in front of me than behind me, so get on with life.

I think you do get to a point the longer you are on this journey where you just deal with it. I can tell you that by and large, I don't think about my PCa in a fretting sort of way. I ski every year with friends, my wife and I have taken vacations, Ring Road in Iceland, Big 5 in Utah, New England coast, Oregon Coast, Colorado in the Fall, Sedona...today I am playing pickleball with a group of dads from our kids days, this weekend I rode the Garmin Unbound 50, a gravel bike ride in the Flint Hills of Kansas near Emporia with my sister and daughter's boyfriend. I've attended concerts to watch Chicago, Billy Joel, the Eagles, enjoyed the recent successes of some of my favorite sports teams, the Royals, Chiefs and Jayhawks, watched my daughters graduate from high school, college and become grown adults...

Ok, you get the idea, you too likely have a lot of living to do, as the Nike slogan says, "just do it!"

Kevin