My cancer, my journey, my learnings at one month!

A month ago, I sat in a urologist’s office, whom I had only one brief meeting with prior, and he said, “we have mixed news… you have cancer.” Not sure I heard too much after that. Unfortunately, my wife was out of town, as we expected it to be nothing. I did hear the Urologist quickly review the options and clearly thought surgery was my best bet and he could do it before we left for Florida in October. I then went to schedule follow up meeting with him and could not get an appointment for 5 weeks. I left the office bewildered, alone and full of questions. He spent 15 minutes with me.
Shock was the feeling I experienced the next few days. I had to call my wife and tell her and her first husband died of cancer. That was the hardest call I have ever made. What made it hard was I was lost, adrift in the sea of cancer.
So, I embarked on learning about the disease and options. A good friend had just been through a scary bout with cancer and she recommends Yale-Smilow, which I considered and choose them. My data was in the low-risk category, I was to learn. Low PSA, low volume of cancer in the biopsy. I had a fusion biopsy after a multiparametric MRI, which showed a lesion. The biopsy focused on that and took 12 other samples. All came back Gleason 6, 3 or 4 positive cores out of 13, two <30% and 2 < 5%.
Yale redid the pathology and believe one had a very small amount of G7 <5%. My Yale urologist spent nearly 1.5 hours with us and balanced the science with empathy. My wife and I came away feeling we were in good hands. He advocated for AS and wanted Decipher test to inform the decision.
I am now waiting for that and continuing my study. I can say that the emotional roller-coaster is still twisting and turning. One day I feel good about AS, the next I think I should have an intervention. Based on what I have learned to date, I do believe AS is appropriate, even though John Hopkins protocol would probably not take me but other leading institutions world. I also believe there is a 50-50 chance I will have an intervention at some point. And there in lies the risk/reward bet!
Metastasis is the real enemy, in my opinion. Side effects re the price of admission to prevent metastasis. The docs are very unsure when intervention is needed. Many have thoughts and philosophies about when and they always say, “it is up to you!”
What I know: I have cancer, it is low risk, it is growing slowly. I am healthy and relatively young. My family history has no long-life males, I am the oldest surviving male at 65. I know interventions do not mean cure, it can come back. I know the medical community is working hard at new research and there will be better and better treatments as time goes by.
What I feel: I have real confidence in my Yale Urologist, I feel he is balanced and clearly has my best interests in mind. I feel he will be clear about treatment when needed. I feel there is a low risk of metastasis getting away from us. And I worry about this! I am most worried about incontinence.
So, lost in the sea of cancer is not totally accurate anymore. I now am in a lifeboat with a crude navigation chart. In Navy terminology, I am on a shakedown cruise trying to get comfortable with all the realities of PC and treatment options. I know I cannot sail alone and that my docs and support groups make up my crew. I know there will be rough water ahead and I know I will be ready! I hope I can see the beauty in the world while I am on this cruise. I have a wonderful life and I have cancer. It is not I have a wonderful life BUT I have cancer. Life is meant to be lived!
Thanks for helping me along this journey! Denis

Denis,

You are a great example of how patients should conduct themselves. Yes, you were in shock at the initial diagnosis, but you then began the learning process to determine how serious your situation is, and having learned that you are in one of the lower-risk groups, you have chosen the right path for yourself. I commend you on this, as so many men are shocked into knee-jerk treatment choices when they have many options.

It sounds like you are in good hands all around - with your doctors and at home. May your journey be a long, smooth and safe one.

Denis,
Great post, great attitude, great job getting educated and getting perspective on your situation.

Here is a link to a just published study that is pertinent to G(3+4) guys who go on AS, and subsequently choose treatment. It is newly published. I only read the abstract, but it was enough to know it would be of interest to you....


www.practiceupdate.com/C/56955/56?elsca1=emc_enews_topic-alert

Denis,

Sounds like you're pushing all of the right buttons so far and performing your due diligence. I agree that you're definitely a candidate for AS at age 65. Curious, why do you say that JH would not accept you into their AS program? You may also want to consider sending your biopsy cores to Dr Epstein's organization for a second pathology opinion. It's only a couple hundred dollars to do so.

<<I understand Epsteins criteria to be <3 positive cores.>>

That is not a hard and fast requirement, and it's not Epstein, but Dr. Bal Carter who is the head of the JH AS Program.

I am planning to do AS at Yale, not sure what I said that inferred I would. The only issue is if Decipher results come back high risk we may revisit the decision. Be well Denis

Thanks Michael we are all in this together! Denis

I am still thinking active survellance, my Uro still says low risk. Thanks for your thoughts. Denis