The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

I tried a new topic, But it put it in PCa section not here....
My question is should I get a MO....

That would be my suggestion - if you haven't had SRT, then it might not be worth the effort as the RO be enough at that point.

If it goes beyond that, then yes, get a MO who specializes in PC.

Hello MG...If you are not going to do surgery, then your Urologist job is pretty much done. I would at least consult with an MO and get his perspective and advise about a treatment plan..MO's and RO's usually work together without conflict..

Back at you, MG!

Redwing57 said...
I just received this link in an email from Us TOO. This will take you to the full text version of the article. It is certainly pertinent to those reading this thread. I don't recall if this was already discussed on the forum, as it was published in March 2018. Presented for information; read and do with it what you will.

Radical Prostatectomy, External Beam Radiotherapy, or External Beam Radiotherapy With Brachytherapy Boost and Disease Progression and Mortality in Patients With Gleason Score 9-10 Prostate Cancer

[Edit: Note that this is a retrospective study, so has some inherent risk of selection bias and so on. Just something to keep in mind.
More edit: the EBRT doses are low by today's standards, and the follow up period is short. I'm not very convinced by the results presented. Of course BT is a great way to boost the local radiation dose if the externally applied radiation is low, and that would give misleading preference to EBRT+BT in this particular retrospective study. This is a marginally useful analysis, but it is unusual in the amount of G9-10 cases involved. I don't know... upon reflection this may be more misleading than helpful. Again, as always, caveat emptor....]

(A related item, reference my comments above from page 6 of this thread.)
This link just came in my urotoday email. It's an interesting interview regarding this study with a U of Michigan doctor. Nothing too new, but he does clearly state some things we occasionally discuss on the forum.

The Optimal Treatment for Gleason Score 9-10 Prostate Cancer - Daniel Spratt

A couple of comments I found interesting (time stamp for beginning of comments):

5:00 - Multi-modality outcome statistics can be skewed by patient selection, since it requires a healthier patient to be eligible for the required anesthesia. Similar to surgery pre-selecting for healthier patients (discussed around 8:00).

11:00 A brachy boost improves biochemical recurrence-free survival, while also increasing the risk 2-3 fold of severe bowel or genital-urinary side effects.

12:00 - if extraprostatic extension exists, prefers dose-escalated EBRT+ADT. (Multi-modality's brachy boost only is effective within the treatment field, basically within the prostate). The combo's lower EBRT field wouldn't be as effective away from the very localized brachy boost field.

Not much activity in here lately. I posted to the main board but I’m putting the same post here.

As a GS9, and having gone through brachytherapy, SBRT and ADT, I’ve been anxiously awaiting my ADT release day. I’m now 3 months past my last injection. Started my 18 month ADT treatment with my first injection, degarelix, in March of 2017, followed one month later by my first Lupron shot. I originally thought I was scheduled for another one in October but miscalculated. I thought I needed to get my last injection on the 18th month, but it’s being on Lupron for 18 months. A welcome surprise. My MO said she would give me another shot if I wanted it, but I kindly refused. So 3 months out, my blood draw results from my visit the other day were PSA <.05 and my T is 6. Now its a waiting game. PSA staying undetectable and T making a comeback. Hoping all the ADT side effects start to dissipate, but it may take some time.

Had 5 years of <.06, June 2018 - .02 and October, 2018 another .02. Going to retest in 6 months. I guess this is good news. You can add me to the G9 group, yippee!

Well good catch Redwing! It is and has been the Mrs. I apologize for the confusion. I didn’t realize I had been added to the G9 group. Thank you so much for all you do

Hey randyd - you can post wherever you like, whatever works for you!

This thread has been helpful for some, and it's our own little corner of the universe. People here definitely understand your rather rare situation. The main forum will let you have threads specifically focused on your interests, your situation, personally. There's more overall activity on the main forum, of course. Whatever works for you, good sir!

I started the first one of these threads when I realized how uncommon these G9/10 cases are, and I looked at signatures to find them. Since then, I've been gathering folks as they come in. A while back, it also occurred to me that the introductory posts and follow up discussions could be of significant interest, so began adding those links.

Your G10 case is rare, to be sure. The primary Type 5 cells are themselves a risk factor, putting the G9 5+4 and G10 on very similar footing. I've looked for years now, and have found only a couple of studies that discuss it. There are just so few cases like this that very few studies can do anything with the tiny sample sizes. It doesn't matter a whole lot, really. We pretty much throw everything at it anyway!

Everyone, try Miralax or at Costco Laxaclear.

Dogdays, this is a rough time, waiting to see if your treatment produced a cure or whether you will have to go back on ADT forever..Best of luck to you..

started to reply this to a post started by P34 titled "Don't be me". Thank you P34 for your reflections of your journey .I didn't want to hijack your thread so I started a new one.
I would say that pretty much anyone that reads this will automatically recall in their minds their own journeys and could probably tell of wanting to spread the word to as many as they could on how important it is to have regular check ups and have PSA checks.
After my Dx I recall the comments. "your lucky it's only PC" and "oh my Dr doesn't believe in PSA testing" Even from my brother and my best friend! I felt shocked, and thought.... well.... OK? Don't they realize how serious my Dx is? Don't they realize this could effect them?
The fact is they don't for many reasons.
For starters..."overtreatment" of low risk PC after the discovery of the PSA test has swung the pendulum way over to the other side, and that's not good
Another is ….it's cancer we are talking about. I think that people don't want to think about or are in denial that cancer can happen to them. There are many in my life that never want to acknowledge the fact that I have been Dx'd with cancer. They couldn't/can't talk about it. It's uncomfortable.They don't know what to say. They will say "how you doing?" or "How you feeling?" I know what they mean and I'll reply something like …"I'm feeling good" and that will pretty much be it and that's OK. A few of my acquaintances who I thought were good friends have just disappeared. Haven't heard from them at all since Dx.
People don't want to talk about "CANCER".... I understand...I was one of those people. What do you say? It's scary.
Back ten years ago my wife convinced me to get a colonoscopy. Didn't want it ...Didn't need it....Don't want that done to me period!!! I ended up also getting an endoscopy..... They found a very large tumor in my small intestine. Had it resected.Spent 10 days in the hospital. Thank God it wasn't cancer! Could have been, would have been had it not been found! I'm telling this story because after I healed I told my oldest brother "you know ...you should have an endoscopy. This type of thing runs in families." His response to me was ....If it gets me,it gets me.........It got him.... and he died from cancer of the mouth and throat. I didn't understand. Couldn't figure it out. Now I am beginning to understand. It isn't always pride....It isn't always the money....
it's mostly "FEAR"

My best friend, finally had his PSA checked. It has been rising steady for 2 years now and it is up 16.5 . He has had 2 negetive biopsies . MRI showed pi-rad 5. He is now facing a saturation biopsy. He told me the other evening he isn't sure he is going continue going through these biopsies especially a saturation Bx. It's a tough situation. He said he will wait and if it gets worse he will deal with it then.......I argue with him to find another URO. Stop going to the guy I just fired... the guy that didn't even know what treatment I had ...... I didn't have surgery!!! I tell him to find a PC specialist and give him the name of the guy I found in Seattle. My friend says..." It's up to God".....I'm a man of faith... but COME ON!
I get frustrated at how PC gets minimized. Most guys I talk to really don't want to hear it. They will tell me of a friend who had it and had surgery and has never looked back and that's correct. Not many high risk guys. I guess I might feel different if I wasn't a high risk G9. I guess it's not up to me how guys will take my suggestions. Maybe I just need to tell them my story and hope that they will "get it ".That it is important to be checked.
I'm frustrated that my friend is starting to minimize his situation. I don't want to be that guy that tells him what he needs to do and sound like I know it all, because I know I don't.........I just don't want him to end up like my brother.
Battle On Brothers!

The Artistic One - Mark