Diagnosed Yesterday 04/14/26 - Gleason 9 treatment

@wheel1
Thank you I will take a look today

Make sure you ask for second opinions.

@byelliq6, if you're interested in asking about a remote (virtual) second opinion at Mayo Clinic, you can inquire here: https://mayocl.in/1mtmR63

I'm bringing @jimcinak into this discussion. He too lives in the interior of Alaska and was treated for prostate cancer in the lower 48 (Mayo Clinic Rochester). https://connect.mayoclinic.org/comment/655549/

He may be able to share more about traveling for treatment from Alaska.

@byelliq6
Yes, unfortunately, wait periods for appointments at UCSF are extra long even if you are patient there. We were waiting for 6 to 12 weeks for the "first opinion" last year. I still wonder if that contributed to my husband's PC progressing from 4+3 to 4+5 with unifocal EPE , but I guess we will never know...

Try calling Stanford and say that you are considering treatment there ! That will put you in different category. They also have "second opinion" program with some generic board so do not even mention that.

Wishing great success in finding good provider 🍀🍀🍀

Welcome and sorry you have joined the club. I am a retired Radiologist who knew a reasonable amount about prostate cancer learned during my career but have gained most of my knowledge since diagnosed with G9 in 2021 at the age of 67. Otherwise, healthy.

After my diagnosis in 08/21 I extensively read and used my professional contacts to obtain multiple opinions for treatment- RP vs radiation. My cancer appeared confined to my prostate by MRI and pre op tests. I choose surgery because: 1) I wanted the cancer out ASAP; the longer it was there the greater the chance of metastasis, 2) I wanted direct visualization of the cancer at surgery to stage extent of disease, 3) I wanted to hold in abeyance the radiation option for local recurrence. Surgery after radiation is very difficult because of the extensive scarring and complication rate increases.

My RP in 10/21 went fine. Minimal capsular extension with involvement of seminal vesicles (not good). My PSA 6 weeks post op was 0.016. Unfortunately, 3 months later it increased to 0.37. PSMA PET revealed a solitary T8 (spine) met. I received SBRT (radiation) to that vertebral body with good result. Still on no meds.

Three months later my PSA had doubled/doubled/doubled to 4.6. Repeat PET revealed a new node in my pelvis but no activity at T8. Presumed micromets given the PSA rise. Again, I did extensive research and had a Zoom consult with Dr. Ken Pienta (medical oncologist) and Diane Reyes NP at Johns Hopkins. I emailed Diane ( after I read a journal article by them called Total Eradication Therapy -who wouldn't want that!!) and got a response within one day. She offered a Zoom consult 3 days later on Monday morning. They spent an hour with me (couldn't charge because out of state Zoom-they did it anyway). Dr. Pienta actually recommended Dr. Sartor and Moffitt Cancer Center in Florida because they individualize treatment. I asked if he would treat me and Diane in the background is nodding her head yes. I liked what he said and asked if he would treat me. His response was "Charge!". He immediately put me on Lupron and Darolutamide and scheduled my chemo with Taxotere (triple therapy). I have never experienced such rapid response and professionalism from Dr. Pienta, Diane and Hopkins in general. I was getting a flurry of emails from Diane about getting my path for second review, medical records, scheduling my treatments etc.

My triple therapy was complete in 3 months. I had whole pelvic radiation 3 months after completion of my chemo). My PSA went undetectable after 2nd chemo treatment. No significant side effects. He discontinued my Lupron after a year. PSA remained undetectable for 3 years. He put me on testosterone replacement therapy (TRT) after 2 years because my testosterone didn't recover. He doesn't believe in extended/lifelong testosterone suppression. (As an aside, I know TRT is controversial. But I fully trust his opinion. He is the research Director of the Brady Urologic Institute at JH. He only treats prostate cancer. He is full professor in 3 departments at JH.He understands I want to live as long as possible weighing the side effects of treatment.)

I gained complete continence 6 months after my surgery. Unfortunately, I have become partially incontinent following the radiation. I have complete ED (but treatable).

My cancer was upgraded from a G8 to a 9 on review at JH. My MO said it really didn't matter as far as prognosis goes; G 8,9 and 10 are all treated the same.

There is much more I could say but I will leave it there. I reached out to about a dozen friends and referred strangers to talk about their experience with prostate cancer. It was helpful and comforting to me. I have paid it forward the last 5 years. If you want to talk with me directly don't hesitate to private message me and I'll give you my number.

Good luck. Fortunately there are many treatments for prostate cancer and more are coming. Hang in there.

@colleenyoung
Hello Colleen,
I appreciate your information I really do.
I just got of the phone with Mayo Clinic Rochester (and AZ, FL) and after 30 minutes of questions I was notified that unfortunately they do no offer any remote (virtual) second opinions for patients from Alaska for Urology related issues. The explanation given was that they only offer remote telemedicine in a different state IF they have an MD in that field licensed in the State of the patient even though it is virtual. Which I understand from a legal standpoint but please Tell me that makes sense ie "Virtual" and in this day and age..

@surftohealth88

Hello and thank you for the reply. UCSF is out for me. Sorry to hear about the EPE, that is my greatest fear.

As my lesion is quite large relative to the prostate size (28cc) (Pirad 5) and 1MM from the edge at the right base I cannot wait 2-4 months, would not be prudent. From what I’ve read and experienced, those of us that are diagnosed with prostate cancer are often told "don't worry" it is the slowest growing cancer or you have plenty of time... etc. Although this may be very factual for Gleason 6/7 situations, frankly, I am growing a little tired of hearing that phrase.

As many of the experts on this amazing discussion board know, every case of prostate cancer is disparate, every prostate is different, grade types, location of lesions, reaction to treatment widely varies, genetic makeup of the cancer cells and the host, severity of diagnosis or stage, and on and on and on.

Most likely I have microscopic spread and extension into the nerve bundle given the grade and volume seen in the Biopsy results above so I want to move quickly and its not that easy navigating all the gatekeepers of care and getting on schedules for treatment.

@byelliq6
You got this dear @byelliq6 ! You know much, much more than most patients that are just starting this voyage. That is huge advantage in itself. 👍

Did you contact this center in Washington : "Fred Hutch Cancer Center" ?

They even have proton RT therapy for PC ! I heard a lot of nice things about that center in general.

I wish I can be of more help but I was really not very successful with finding and arranging expeditious help for my husband so I am useless in that regard, especially since I bought into that "no rush" theory pushed onto me by both RO and a surgeon. 😟

Wishing you the best of luck 🍀 ! I am sure that you will find provider soon since you are not swayed by those "lullabies". 👍 Tell always that you are looking for treatment center and doctor that will treat your PC and want to make introductory zoom call with a doctor and that it should be ASAP since you have high grade cancer.

Yes. I have a definite opinion as I'm in a similar situation. My background is in Biotech and I start every analysis very skeptically. Cutting to the chase: with your numbers and choosing Radical Prostectomy as the primary treatment, your recurrence rate should be estimated at greater than 65%+ at which point you will have radiation and probably ADT. I can't imagine that your surgeon didn't tell you that. The case for HDR Brachytherapy boost with SBRT is to reduce that recurrence rate with the fewest side effects, and all the research I can find supports that. I interviewed the top surgeons in Miami, and they strongly recommended their state-of-the-art radical protectomy procedure. I waited until the end of the appointment and asked: " With all this what do you estimate my recurrence rate?" They looked a bit sheepish, ran my profile through the prostate cancer Memorial Sloan Kettering nomogram, and said: "Up to 70% + .
After reviewing all the options, I'm going forward with HDR Boost at UCLA with Dr. Albert Chang's team. There seems to be a fairly recent debate within the radiology community as to whether SBRT has advanced sufficiently to obviate the need for HDR Brachytherapy. I'm reviewing that now.
As stated in a previous comment, Mira Keyes' videos provide some good compilations of HDR boost results compared to surgery. " The Royal Flush video is particularly enlightening. The other issue I'm reviewing is the current "standard" for ADT treatment. So far, my research reveals that every center has its own ADT protocol.
The prostate cancer research videos with Dr. Scholz help immensely to clarify some of the variability.

@byelliq6, dang! I should've mentioned that. The provider has to be licensed in both states for telemedicine. We have many providers who maintain licenses to practice in multiple states. I'm sorry that Alaska is not one of them.