Thank you so much for the reply's,[ there notes falling from heaven] . I will do my best to give more information as requested. It is very difficult for me not knowing the numbers and acronyms. I live in the Denver Co area and have Kaiser Permanente insurance . This all started 7 weeks ago with urgent care visit, I could not pee. I was told that this is normal with men my age. Catheter placed given a prescription of Flomax, returned a few days later to take out Catheter to see if things returned to normal. No Luck, made appointment with Urologists'.
Urologist thought prostate felt suspicious, ordered biopsy , PSA Blood test , Bladder Scan , and then they hand me ,[ a real dumb ass ] my Pathology Report . Everything went black.
PSA 16.15 NG/ML
1. right needle core biopsy
4+5 grade group 5
5 of 6 cores 80%
suspicious for exrtaprostatic extension present, tumor length 15mm
perineural invasion identified.
2. Left Core
4+5
4 of 6 cores 30%
length 7mm
neg for high grade pin and perineural invasion
To add more info do I edit this post? I am single, divorced, two grown daughters, not to much support. I am really struggling mentality Its hard talking to my daughter and friends, No one knows what to say.
CT scan and Bone full body scan came back negative for any metastatic cancer spread,.

Post Edited (Avalanche@21) : 4/24/2021 7:51:21 PM (GMT-6)

Avalanche - You are not going to die in the near future unless you get in a car accident. Prostate cancer is not a death sentence even if that is how you feel right now. Those weeks after a unfavorable biopsy diagnosis are the bleakest period and I think most of us went through it. It is a lot like the five stages of grief where it starts with denial and anger and ends with acceptance.

Usually family is not much help at first unless they have had prostate cancer. You get comments that you have the “good” cancer or can’t you just get it fixed? You might look for a support group in Denver where you could talk with other prostate afflicted men if you need some local help. Most meet monthly.

I ended up Gleason 4+5 as well and am doing fine after a couple of years. Treatment decisions suck but that is what you have to deal with down the road. Very few people with cancer get painless laser surgery and are cured so there will be some more time spent getting to the end of this journey. Don’t let the dark side takeover, try to share with your daughters as best as you can and ask questions here as they pop into your mind. No one could help me in the weeks after diagnosis either so it was something I just had to struggle through then things settled down a bit and I could focus on treatment evaluation and decisions. Hang in there.

Will Kaiser allow you to use the Ancshutz Cancer Center? You are very high risk and likely locally advanced and need the very best in oncology care.

I am diffidently going to need a second opinion and hopeful a new doctor . Does anyone know how to do that? So looking over his notes from Friday discussing treatment. MSKCC pre % looks bad, why even bother with all the things that could go wrong. He ordered a prescription for Casodex and then Lupron for the month leading up to the surgery. I feel horrible about this and anticipate a poor outcome. Why bother.

I dont really know what all the numbers mean, makes things very frustrating. What I see all looks very bad to me.

Avalanche: Do not move to surgery without looking at the radiation options. Seriously. The Lupron/Casodex combo will knock it down and give you time to get the second opinions done. And I'm a "surgery guy"....with G9, surgery may not be the best treatment for you.

Avalanche...Your diagnosis is a serious one; but, you’ll find many men here with far worse and doing very well. All of us our overwhelmed to some degree when we get the call that cancer, illness, or a condition may change our lives. It’s important to slow down, gather the facts and realize that knowledge is power over the situation we find ourselves in. It’s important to get your head in the game.

“Much of the damage that prostate cancer does in men’s lives is caused by side effects from too hurriedly chosen treatments.”

Urologists are surgeons; and surgery is what they do. Most urologists are poorly informed on radiation techniques. For men in the ‘high risk’ group like yourself, surgery as a monotherapy will not provide cure rates that a combination treatment is likely to do. It’s important to understand all the options. The Lupron/Casodex (ADT) first step should stop the cancer progression immediately and buy you time to better understand the radiation options to go along with it. For high risk guys a multi treatment approach of ADT along with radiation is a standard of care that most insurance will cover and offers the best chance for a complete cure. The side effects of surgery can be avoided.

Monday morning call your benefits specialist at your HR department. Start the process. Read your benefits package. One step at a time. As I earlier referenced, Ansucshultz is excellent. Call them directly and ask if they are in the KP network or what it takes to use them. It is no more difficult than shopping for a car or a home ir planning a vacation. It is a process that takes some work, but if you can manage those functions you can do this.

Do not decide on a treatment path without meeting with board certified specialists. You have many options as you are hearing but you get to only make one decision. Make sure you understand the pros and cons of that decision and will be very happy with all the consequences. There are no do overs.

If you need specific assistance there are patient advocates that specialize and can assist you. Rely on Mr Google and you can get a lot done. After all you found this forum. Don’t let yourself get overwhelmed.

Thank You, I hope I have a chance to pay this forward someday to someone needing help. Your insight and encouraging words have really been helpful in regaining my balance of emotion and strength. After reading all the word s that provided a moment of clarity. I have decided to contact KP to see if I could get out of network authorization for a second opinion at Anschutz Cancer Center. It sounds like a reasonable request. So far I have not been sure if this train is still wreaking or has stopped so I can get up and clearly survey the damage. So far I have been just hanging on bracing for impact. I will fill out my profile and keep you posted.

Avalanche, great start. You sound much better. This is an important and urgent situation and you have apparently learned more in the past 48 hours from your new friends and the nomograms about the serious nature of an extensive G9/high PSA diagnosis than from the urologist. Of course this is overwhelming and scary, but your understanding, organization and move to action mode will help you greatly.

We have all been through what you are experiencing. And yes, most of us initially freaked out.......I certainly did.

Now you are able to develop a checklist and plan of action that you can perform well. Please also consider taking some time off your job to do these things. Either work half-days, take a week off, call in sick.......just don’t take vacation. You have received a serious cancer diagnosis and, though not physically disabled, need the time to seek treatment assessments. Most all employment situations will accommodate the time required to seek and perform the assessments in a comfortable clear-minded method.

I recommend you talk to HR soon. They will provide you the information and guide you as to the benefits you have and the methods to pursue. They will keep it confidential, but at some point it is advisable to speak with your supervisor so he/she can make appropriate refinements in the way work under their responsibility gets done.

You are your own advocate. That means you must now become your own subject matter expert to the extent you can. You need to be able to objectively assess the expertise and advice of the physicians you will meet. There are many ways to do this and hopefully members of this board can assist you. Unfortunately we can also confuse you.

Remember that studies and papers and trials can be directive, but are not specific to your situation. And when comparing treatment methods there are most always a myriad of variables that in one study will favor method A and then in an equally compelling study will favor method B. If there was only one best method for PCa , then that is what every patient, every doctor, and every clinic/hospital/university center would perform. With PCa that simply isn’t the case and you will be required to assess different methods for their expected cancer control and treatment side effects given the specifics of your situation and tolerance for possible conditions to make your decision.

Best wishes,

Avalanche, your frame of mind is understandable, and its great to see you fighting it.
Soon after my diagnosis, just around the time i made a decision, my surgeon told me to walk 4 miles each day, until after my surgery (then as soon as able continue to walk at least 3 miles a day. I recall on day on my 4 mile walk, a cloudy, cold day in NYC, i was walking down a pretty quiet street, and was very despondent thinking about what was ahead of me. One of my friends drove by, saw me, and stopped to chat. I had a hard time even talking to him, about my situation, or anything for that matter.

But in the days leading up to my treatment date, while i was pretty nervous about the surgery itself (this would go for any treatment, surgery or otherwise), as the date came closer i inexpicably started to find peace in my brain, about the future, and about how i was going to be ok, and enjoy life again very soon.

You will get through this. We've all been where you are, we know its tough. But it will get better, and sooner than you think. You're gonna be ok. Focus on that.

Avalanche - I'm sorry to hear that your doctor is not being more supportive. Are they frustrated that you're asking for second opinions out of network? I don't have Kaiser, but one strategy for you might be to contact Anschutz directly and ask them if they have treated Kaiser patients out of network...they might have some advice for you as to how to go about getting that approved. Meanwhile, have you started hormone therapy?

Hello All
I have started hormone therapy By mouth for 28 days BICALUTAMIDE, starting one week before Lupron Injection, 6 month
I have KAISER PERMANENTE Insurance and have been dealing with the Urology Dept. at The Franklin Medical Center in Denver Co
Dr, Kenneth Yun would be the treating physician
We have scheduled RALP Surgery on July 22.
The second opinion was offered by another Dr in the same office, out of network is not permitted