HealingWell
Search Close Search
☰

gleason score of 9

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/2/2014 5:55 PM (GMT -5)
My psa is 5.6. My prostate in normal with no nodules or enlargement. But the Gleason is 9 as of todays biopsy (5 out of 12 samples) result. I go in for a bone and CT scan in a week. I have colitis, but it is in remission. My doctor recommends robotic surgery. He studied at the Mayo clinic. He says radiation will weaken my colon. What is the next course? Can my prostate be saved?

Thanks.
Posted 9/2/2014 6:23 PM (GMT -5)
Hi MGC. So sorry to hear about your diagnosis.

My husband was diagnosed a couple months ago with a Gleason 7. We did consult a radiation oncologist but, because my husband has a history of ulcerative colitis, the radiation oncologist said that DH (dear husband) would not be a good candidate for radiation therapy as the first line of treatment. (DH's colitis is controlled by medication but the RO said that didn't matter.)

I did a little additional research and found that one bracchy therapist in the Seattle area, Peter Grimm, injects hydrogel into the rectal wall to minimize damage. Maybe other ROs also use that and with other forms of RT?

You'll have more info about your options and best course of treatment once you get the results of the bone scan and MRI. Have you discussed what type of MRI it will be? Many here believe that the 3 Tesla multi-parametric MRI is the current state of the art--but you need to make sure that the radiologist reading the images is experienced, too.

Good luck,
Melaine
Posted 9/2/2014 8:08 PM (GMT -5)
I think you'll have a hard time finding an RO willing to give radiation when there's a history of colitis. If your Gleason score were ≤7, it might be doable with HDR brachy, SBRT or pencil-beam proton, perhaps with a hydrogel spacer. But with your GS9, I think they would have to use external beam RT as well over a wider area, and that could set off a relapse. It couldn't hurt to get a second opinion from Alan Katz, Jeff Demanes, Peter Grimm or from UF Jacksonville.

- Allen
Posted 9/2/2014 8:35 PM (GMT -5)

mgc555 said...
Can my prostate be saved?

It kinda doesn't sound that way to me. By all means consult with any of the doctors that Tall Allen recommended, they are all brilliant, but while you are at it you might shop around for a rock star surgeon. And, because even the best surgeons aren't quite as good as they think the are, be sure to have a good medical oncologist on your team too.
Posted 9/3/2014 6:48 PM (GMT -5)
Thank you all. So my options are very limited. How about going to the cancer treatment center of America in Tulsa, would they be one of the better treatment centers. The representative there indicated there might be a chance with the cyberknife radiation therapy. Then there's the proton therapy from ProCure in Oklahoma City. Or how about KU med center? Any thoughts?

Thanks.
Posted 9/3/2014 7:54 PM (GMT -5)
If you do a search, I'm pretty sure there's a post that lists some highly-recommended surgeons, if you go that route. I don't know anything about the places you mentioned. While the reputation or caliber of the medical center is important, it's probably more important to find a doctor who is really expert at what he or she does. The more experienced the better. So if you decide to have surgery, you will want to find someone who has done several hundred, if not thousand, prostatectomies.

Melaine
Posted 9/13/2014 1:20 PM (GMT -5)
The MRI came back clean. The Bone scan came back clean. Indications are that the cancer is encapsulated. The oncology urologists (Dr Hettinger) recommends robotic assisted surgery. He has performed over 600 and did his residency at Mayo. He works (at KC Urology Care) with 2 micro-specialists in prostate radiology oncology who have a RapidArc IG-IMRT dedicated to prostate cancer treatment. They advise the surgery due to my "young" age (59). Spoke with another specialist at the Advanced Radiation Center (KC). He recommends hormone therapy and 42 radiation doses with IG-IMRT. My GI specialist (Stanley Brand) said radiation treatment is an allowed option if I so choose. Many pros & cons. The surgery will remove the lymph nodes, prostate, and seminal vesicles, and possibly nerve tissue. I am open to any insight. I'm leaning on the surgery and will try to negotiate tissue pathology test before closure.

Also, what should I expect post-op and future? Thanks.

Diagnosed 09/03/14 (day before birthday), PSA 5.6, 5 of 12 cores +, GS: 4+5=9;TNM stage: T1c (pre-mri).

Melaine,

Can you explain your DH status, don't fully understand it: DRE+
1.7 PSA (up from 1.2 three months earlier)
Bx: 3 of 12 positive cores 3+4=7 (50%)
Pre-op imaging: bone scan clean; MRI clean but shows lesion as 1.1 cm in left base
Robotic RP on Aug 20, 2014: still 3+4=7
Moderately involved, bilaterally, 25%
-EPE; -SVI; +PNI; (intraprostatic); -Lymph node
Pseudocapsule penetrated but not capsule itself
Posted 9/13/2014 4:17 PM (GMT -5)
MGC - my case similar to yours, except with Gleason of 7 (4+3). My PSa was 5.6, I am 61, and also deal with UC, although currently in remission. As others mentioned, I was also told that Radiation was not a good option for me due to UC. I had Da'Vinci robot surgery on Aug 14 and have my post op appt on 9/15. My path. report post surgery was clean )lymph nodes and Seminal vesticles, and my cancer was encapsulated with nothing in the margins.

My first Post-Op PSA is .03, and I have experienced virtually no urinary issues after surgery although the jury is still out on the ED. I had that before and I think that might be a long-term problem. Nonetheless, I consider myself to be very lucky, and I am very glad I made the choice I did.

Success is possible - Best of Luck to you!
Posted 9/13/2014 4:28 PM (GMT -5)
mgc
As another new member to this site, and a G9, I want to add my welcome to those of the other members. There are a number of members with tremendous knowledge and/or experience and they will provide you excellent advice. While that advice cannot be used in substitution for medical advice, it is super useful in assessing different options you may receive from you medical team. The only thing I can advise is that you focus on getting the best doctors available, including a Medical Oncologist, Urologist and Radiation Oncologist. I ultimately chose doctors at MD Anderson in Houston and though MDA is a 7 hour flight for me, I am very happy with my choice.

I hope you will keep us advised of your progress. Good Luck and God speed.
Posted 9/14/2014 9:05 AM (GMT -5)

mgc555 said...
Thank you all. So my options are very limited. How about going to the cancer treatment center of America in Tulsa, would they be one of the better treatment centers. The representative there indicated there might be a chance with the cyberknife radiation therapy. Then there's the proton therapy from ProCure in Oklahoma City. Or how about KU med center? Any thoughts?

Thanks.

It would help if you complete your forum profile, so we can respond via email

www.healingwell.com/community/cp.aspx

You mentioned Tulsa and OKC. While local is preferred, as a G9 you go to wherever the experts listed by Tall Allen are located - Alan Katz is in NY, Jeff Demanes is at UCLA, Peter Grimm is in Seattle or from UF Jacksonville (Dr Paul Okunieff). I am a member of Univ of Florida & Shands Metastatic Disease program but I go to the Gainesville location that is closer to where I live in FL than Jacksonville is.

I have been to Dr Chris King at UCLA an associate of Dr Demanes recommended by Tall Allen, Dr Brian Moran at Chicago prostate Center, Dr Mack Roach at UCSF and Dr Robert Zlotecki at UF & Shands Gainesville all radiation oncologists plus two medical oncologists Dr Bruce Stechmiller also in Gainesville and Dr Jeffrey Turner in Marina del Rey CA an associate of Dr Mark Scholz and Dr Richard Lam.

For advanced imaging I went to Phoenix, Dr Fabio Almeida for the F18 sodium test available in quite a few other places and for the C-11 Acetate that is only available in a few because the Acetate half life is something like 20 minutes and the special equipment involved.

Another option would be to go to Mayo clinic and Dr Kwon for the C-11 Choline that is sometimes covered by insurance. Dr Kwon has a threshold of PSA =2 (or maybe 1.5 depending on circumstances) before he will do C-11 Choline imaging.

A third advanced imaging option is Feraheme MRI at Sand Lake Imaging in Orlando Florida.

The standard bone scan scintigram is very subjective and chances are your medical oncologist of choice will want the more advanced scans that are more objective to know exactly what you may be dealing with at the micro level.

See also the new G9 thread that refers back to a 10 page prior G9 thread

www.healingwell.com/community/default.aspx?f=35&m=3182035

Good luck and keep us posted

LupronJim
Posted 9/14/2014 10:09 PM (GMT -5)
GPat, where did you have your surgery?

Lupronjim, Tall Allen, is that Dr Allen Tall at Columbia U.?

Thanks.
Posted 9/14/2014 10:47 PM (GMT -5)
No Tall Allen is the poster above. He is a layman with respect to medical degrees but is extremely knowledgeable on all topics PCa related. He lives in Los angeles area and is very familair with Dr King and Dr Demanes at UCLA plus also very knoweldgeable about the other doctors he listed above.

Tall Allen who on some other boards like advanced PC talk is known only as Allen and on cyberknife.com is known as AllenE.

advancedpcatalk.freeforums.net/board/1/pcafs-main-discussion-board

www.cyberknife.com/Forum.aspx?g=topics&f=2586

I honestly don't know how my mentor Tall Allen finds all the time to thoroughly rsearch everythign PCa related. I deal in quantity more than quality whereas Allen does both, and I ahve a hard time keeping up on just HealingWell.com and Inspire.com.

Besides Tony Crispino's advanced PC talk site that I want to spend more time on, there is also Joel Nowak's (all three are laymen Allen, Tony and Joel who all also spent a great deal of their time on PCa advocacy)

advancedprostatecancer.net/

Since most of the men diagnosed with PCa are Gleason 6 or Gleason 7, having these sites dedicated to G8, G9 and G10 is more pertinent to my situation. As would be expected, many of the threads on HealingWell.com and Inspire.com are dealing with Active Surveillance an with newly diagnosed G6 and G7 issues but I still find plenty that pertains to me too.

LupronJim
✚ New Topic ✚ Reply