The Gleason 9 Crew - Welcome and how ya doin'?

I received my post op pathology in the mail yesterday as I had requested. I will have a phone interview later today; here are the highlights as I translate them:

Pt3a
GS: 4+5
Wt: 28g
SM: neg
SV: neg
LN: (16): neg
Vascular invasion: not present
PNI: yes
EPE: yes

I would think its a pretty optimistic report for a GS 9. First PSA post op in 9 weeks. Time will tell!

Cheers, Doug

I would agree. I am not a medical professional but this report seems very good given the G9.

Congrats.

LupronJim

Wingman63, thanks for checking in. I added you to the roster too. Glad to hear you're doing so well after surgery. That pathology report sure wasn't what you were hoping for!

Here's a question for you fellow G9 guys:
I've had quite a year. Tried to work through most of it but fatigue from chemo, no Testosterone, and low blood's have kept me on a part time schedule. Just as I am gaining strength from my RP in January, we are planning 7 weeks of radiation.

Given that I'm not 100% going into this, what are chances that I'll have energy for full time work during radiation? I'll need to drive 45 minutes to an hour each way for the radiation treatments.
How about a round or two of golf (gotta keep my priorities in order)? I am trying to plan a golf get away but have no idea how I'll feel after 7 weeks of radiation.


I admire you guys. You give me strength & hope. I hope my story can do the same for some of you.

Also, based on pathology report, I should be moved up to the 5+4 group. It's hard to call that an upgrade but I'm proud to carry the torch.

Gunner, thanks for the update. You're now on the 5+4 list (the darkest corner of the least favorite chapter of the least favorite crew anyone could be on). We link arms in support, welcoming all and especially those facing this diagnosis. BTom, you're on the roster too. Sorry, but welcome.

about radiation, I definitely felt a pretty noticeable light-headedness and instant fatigue after each of my radiation treatments. My wife drove me back to work, about 45 minutes, and I usually napped for 30 minutes on the way. Compounding radiation with HT fatigue, I'm not sure I'd have been ok to drive back by myself, so be a little careful when you start. With that little nap though, I was good to go for the afternoon.

Oh, and to Peter's question on BTom's entry, the stupid-looking hats have been on back order since I can remember. We'll just have to make do, I guess!

Although I've been reading the posts on the gleason 9 crew this is my first post and not certain if i'm doing it right. Not exactly computer savvy. I was dx in October, 2010 with GS 9 (5+4), psa 10.9, stage t3c. Primary care is the VA. I received 9 weeks IMRT followed by 2 years HRT. First year Lupron and second year Eligard (which blew out the tri-cuspid valve in my heart leaving me with congestive heart failure}. The urologist never did blood work {required with Eligard} which would have indicated problems. The HRT did lower my psa numbers thereby having my urologist state that I was "CURED". I was dumbstruck!!! I asked to speak with a VA Medical Oncologist and was denied. I asked for Biomarker blood work to be performed and was denied with the added insult of my urologist asking me "What----Are you a doctor?". I've been coming off of HRT for the last 4-5 months and the VA urologist has expressed no interest in doing any blood work to ascertain my psa levels. I've been drowning in a state of deep depression for sometime and this is the first spark of life I've had to reach out and put my experience into words. Yesterday I found the strength to call the American Cancer Society and they put me in touch with an oncologist here in Gainesville, Florida. He expressed an interest in seeing me - thank God. Now I'm depending on medicaid and medicare. No experience with either of these. I've learned about my disease from the internet and have advocated for myself at the VA. I was met with what I describe as a "White Coat of silence". I've had the VA police called on me because I was characterized as combative because of my request for bio-marker blood work. The VA for guys like me is palliative, not curative. Sort of like an assembly line of death. I've got two sons in Afganistan right now getting shot at everyday and my biggest hope is to stay on the planet long enough to see them when they come home. BTW, I'm still fighting for my agent orange pension as I believe this aggressive cancer is a result of my contact with this chemical. The government didn't mind putting us guys in harms way but the government sure footdrags when it comes to our care. I know this all may seem rambling. Thanks for letting me express myself. CHAG

Thank you, Redwing57, for your kind words and for even taking the time to read my post. I've seen many "old soldiers" walking the halls of the VA carrying themselves with dignity and pride for having served but suffering from the conveyer belt medicine "provided" by the VA. BTW, I'm not completely sure how to navigate this website. Where do I find the thread you created? I'm open to any suggestions from the community established here. I need help and information and I'd love to share some of the Information I've gathered, Again, thank you. Much Respect. CHAG

Peter and Redwing,
As always I appreciate your experience and reply.
I'ts good to know that I may be able to work and play during the radiation treatments. I'll be talking with my doctors too, but it's great to have your feedback going into this.
All the best gentlemen,

I have been posting in some of the other threads from time to time but never formally 'joined' the G9 crowd. After the initial Dx and the subsequent required research which resulted in a radical prostatectomy, I just needed a break from all things PCa.

It is now nearly 9 weeks, post op for my husband, and he is doing very well. We are in kind of a honeymoon period, between the initial PSA test following the surgery and the one to follow in June. In the meantime, it is life as normal (for now) and we are following through with our plans to travel to France in a couple of weeks (plans were made before Dx).

I have read much about how high grade aggressive PCa may not give off much PSA. How then is one to know if the disease is progressing or not? Does one have to wait until it is bad enough that something shows up on a CT scan?

Whatever information that this well-informed gang can provide would be greatly appreciated.

Bonjour, Voyageuse Français! You're up in lights on our illustrious roster (sorry to see anyone there, of course). I wish I had a good answer for you. Working through my diagnosis data, my G9 only put out about 1/4 of what would be expected based on its size. I wonder the same thing going forward; my PSA is undetectable, but what will that mean as time goes on? There are some on this board with really low PSA yet advanced disease. Maybe some of them will chime in.

The higher the volume of type 5 cells, apparently the less PSA is produced. Do you know from the pathology report how much tumor burden your husband's prostate had, and what the score was built from (5+4, 4+5?)?

[edit: my crummy French. Female "voyager" is voyageuse, not voyageur!]

Ah, merci! That stuff always trips me in French. And the whole male/female noun thing. Le, les, Yikes! :)

Yes, the 30% is what I was wondering. If you know the size of the prostate, you can then compute how many cc the tumor was. There are studies that predict the PSA produced per cc of tissue by various Gleason cell types. So you could make an estimate of what the PSA should have been, vs. what you saw, and that can give you an idea how much it was under producing. I'm not sure if it would be valid to multiply the measured PSA now by that ratio to sort of predict the "real" PSA and thus how much is really going on in his system. For instance, if the cancer was mostly 4+5, what would the mets be? Mostly 4? Mostly 5? I have no idea.

(Yes, I'm an engineer and stuff like that fascinates me. However, there is so much not known in medicine that such computations are just mostly to satisfy my own curiosity. It's not clear how predictive it might be.)

I'm placing a comment on this thread too, for the record. I'm taking a break from all of this as of May 30, 2014.

My mind needs a holiday from all of this, and I'm physically in a pretty good place right now.

I care about everyone on this crew, and hope all of you will help other G9 folks as they come to the forum. That mutual support is so important, and critical in those first few days and weeks after diagnosis.

All the best to everyone here, and may you get a chance for a mental escape from it for a while too.

This from Prostrate Cancer Org:

" High Gleason score cancers often have reverted to an embryonic state in which PSA secretion into the blood is markedly reduced.
Checking the serum for abnormal elevations in markers such as CGA (Chromogranin A), NSE (Neuron Specific Enolase), CEA (Carcino- Embryonic Antigen) and PAP (Prostatic Acid Phosphatase) is important to discern PC activity secondary to these de-differentiated tumor cell populations. Therefore, in cases such as this, the normal guidelines for PSA velocity and doubling time may not be applicable. HOWEVER, the concept of slope or trend in a biomarker of disease activity remains valid, and any biomarker elevation should be tracked at regular intervals to determine the presence of abnormal growth of primitive (embryonic) tumor cell clones. "

My first post op PSA was 1.15, not good.

Now using the above I am theorising that I have metastasis producing roughly 1/3rd pre op PSA. I can't see it being micro in the prostrate bed producing that much as nothing was picked up during surgery or MRI.

I'm having a difficult time in going for radiation as a "Hail Mary" with having a relatively clean pathology. I'm not convinced it's all in/if any the prostrate bed.

Comments/opinions?

Other than that I'm doing OK and wish you guys the same!

Cheers, Doug