Anyone else with organ confined gleason 9?

I am 1 month post RALP gleason 4+5=9 , PSA 6 at 41 yo but with negative margins, nodes, vesicles ...etc. Maybe Im extremely lucky, but I can only seem to find other cases of gleason 9 with at least some form of extra prostatic extension...be it nodes, higher PSA, or obvious mets?? I have a follow up 5 week PSA soon so we will see, but with even clean path reports now I find it difficult to believe Im cancer free with a gleason so high.
Thx for any feedback.

Also I was thinking today that its funny I know exactly how many times I have sneezed in the past 4 weeks. Two. They were easily the most singularly painful seconds of my life!

Well,

I had negative margins and an EPE, and. Gleason 9, I believe mainly due to my surgeons skill.

I have a .03 PSA at 30 months. Feeling pretty lucky so far.

Welcome to HW and good on your recovery.

Rollydog,

When you meet with the doctor, I would ask for a hard copy of your pathology report. Sometimes doctors or doctor's assistants can gloss over words, hitting the high points. It will be good to keep a file of all your PSA reports as well.

Good luck and welcome to HW as well.

Goodlife

Your EPE, angiolymphatic invasion (despite N0 pathology, which simply means that none of the lymph nodes which were sampled were found to have cancer) and high gleason scores put you at high risk for recurrence... LINK .  You had no visible margins, but I wouldn't call your pathology report "clean," but the absence of SVI indicates for a more favorable outcome, based on studies. Adjuvant radiation to the prostate bed might be something that you would want to read-up on in advance of your next visit.  ("Adjuvant" simply means that it is delivered after your primary treatment, but before a measured recurrence.)  Here's an article for starters, titled "Adjuvant Radiation Shows Promise for High-Risk Radical Prostatectomy Patients"... LINK . Best wishes...   Added later as an edit… Here’s another recent article for you to read ( LINK )…actually, what I’m providing here is a summary of an medical study published at the “New” Prostate Cancer InfoLink site, with a link to the study’s abstract…I suggest reading both .   The study’s title is:   “ Adjuvant radiotherapy for pathological T3N0M0 prostate cancer significantly reduces risk of metastases and improves survival: long-term followup of a randomized clinical trial. ” Post Edited (Casey59) : 11/29/2011 8:27:06 AM (GMT-7)

prop70, you are welcome, and I hope that my input is helpful/supportive. See if this additional description helps to decipher the chart...

Your primary grade was Gleason 4. This represents the majority of the tumor pattern, and must be more than 50%. Your secondary grade was 5, which has to be less than 50% but more than 5%. BUT, if your primary was only just over 50%, then your secondary was probably something closer to the complementary value of just under 50% because any possible tertiary values are typically small. 

You may not know (from your pathology report) what % the primary & secondary patterns ended up being...they don't often include that level of detail. However, if you get the math I just described, you'll follow along that your combined % G4/5 pattern tumor is going to be high.  (It has to be somewhere between the bare minimum of 55% and 100%...in the absence of better information, you may want to consider it to be around the average of these values.)

The chart's x-axis groups represent the combined % of G4/5 pattern tumor.

Here is the LINK to the medical study where this chart appeared (full pdf article, published in the Journal of Medical Oncology).

Hope this helps...

Casey links to the highly significant SWOG 8794 trial for Radiation post surgery. This trial should change practice in those men who are like those in the trial, or even just similar to them. Ian Thompson, lead on the trial is one of the chief researchers in our disease in the world. The results of this trial were published in the JAMA (American Medical Association). There has been updates. The radiation available now is highly superior in effectiveness and reduced side effects compared to that for the men in the trial at their time of treatment. The decision time will be soon for prop70.
Thanks to Casey for awareness of this important trial and the relevance to prop70.
Also, great work by the doctor for prop70 who identified his issues at an age many doctors would have sent him home. Well done for the doc, whoever he/she was, and wishes that he/she would educate more doctors to act like a doctor should. Look at the patient and not just the numbers.

Post Edited (tarhoosier) : 11/29/2011 12:14:06 PM (GMT-7)

Yes I will be getting a copy of the Path report cause as a Nurse I need to know the ins and outs. Radiation has been mentioned to us as a followup treatment to make sure and if thats the case then OH will be having the treatments. We still have 7 days before catheter comes out and we see Urologist. Fingers crossed but we are expecting to do more teatment but that is a small price to pay.

Casey, Yes...I understand now. I hadn't thought of the 4/5 percentages in that way. I will investigate my report further to see where mine lies. I expect radiation recommendation, but I really feel like waiting for a PSA bump to decide for me. I see some real poor quality of life patients in my line of work....so that is a big consideration of mine. On the other hand, I have a 3 yo son that I would really like to be around to raise.

good luck to you, prop. there are several men here with gleason 9's that look bad on paper, but have been holding on very well for themselves. you will always have to keep a close eye on your situation, and we can only hope that you stay on the good side of the percentages with your numbers.

david in sc

Hubby has Gleason 9 all contained. MRI clear for other organs. Only one biopsy out of 12 was cancer. But what he has is agressive and having it removed via Robotic surg. in Boston,Beth Israel.

Prop, there is also something else to consider. Even a highly aggressive cancer, such as a Gleason 9, has to start somewhere. While such an aggressive cancer is known to eventually spread, the key word here is "eventually."

Even a G9 has an early stage where it is confined to the organ and, if caught later, will be beyond the prostate. But, until it reaches that state of spreading, it is still all within the prostate.

It sounds like there is a VERY good chance that your case was diagnosed in that early state before it had a chance to go elsewhere. I would say that just about EVERY aggressive prostate cancer is very, very curable if it happens to be caught in those initial stages.

You are probably one of those very lucky ones who's PC was found shortly after it began growing.

Good luck!!
Chuck :)

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.