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Advice Needed from Fellow G9'ers

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Posted 10/13/2015 9:15 AM (GMT 0)
Hi All,
First, this forum has really helped me so I thank all of you and wish you all well. I am not sure if my profile lists my "PC stats" but I am a G9, 5 of 12 cores tested positive, PSA = 18.7 and I am 51 years old.

RP about three weeks ago. As always, at least from my experience with PC, there is some good news and some not so good news. The good: It doesn't appear the cancer has spread to my lymph nodes. The bad: The tumor was graded "T2C, at least" (honest, that is what is says on my pathology report) and "Lymph-Vascular Invasion" is indeterminate but likely. Also, three positive margins exist.

So, my doctor, whom I really like from the Norris Cotton Cancer Institute at Dartmouth, is recommending adjuvant radiation starting once I heal from the surgery (probably sometime in January.) There has been little talk of HT as a supplement treatment. For some reason, HT doesn't set well with me and I am not sure I want to go through with that.

G9'ers, is there any other therapies or things I should be thinking about to talk with my uro./onc. team about at my next appointment? Any advice, as always, will be appreciated.

Good Luck to all of you,
Johnny 99
Posted 10/13/2015 11:46 AM (GMT 0)
Hi Johnny,
Welcome to the site. Looks like your G9 was caught relatively early and great to hear that the cancer has not spread to the lymph nodes. Your Doctor is likely recommendiNg ART due the the possibility of LVI. From my understanding, this does not mean the cancer has spread, but the pathway has been opened and your Doctor wants to be agressive in your treatment. I may be completely off base and there will be others that will chime in to promplty let me know that I dont know what I am talking about.

You will probably wNt to wait for about three months to allow your body to heal sufficiently from the radiation. Next find the best possible radiatin oncologist possible. Radiation can be taxing on the nearby tissue and you will want someone tt can provide you with the best possible outcome with the least side effects.

Last g9 is a funny disease. The celss have a tendancy to break off and travel more easily than the lower grades so yinwill want to make sure that your Pca is monitored closely from here going forward.

Below you will find my signature. You may want to consider creating a signature so the rest of the guys have an idea of what your stats are.

Best wishes to you on your new journey.

Post Edited (Almost a 10) : 10/13/2015 7:22:02 AM (GMT-6)

Posted 10/13/2015 12:01 PM (GMT 0)
Johnny,

Welcome.

I'm told that radiation is more effective with HT. I would throw everything at it for a chance of a cure.

Regardless which way you go, stay on top of this.

Take time to heal.

Jerry
Posted 10/13/2015 12:12 PM (GMT 0)
I agree with Jerry, I would throw all I can at it to stop it in its tracks. I had IMRT last fall and the radiologist liked the fact that I was already on HT so that it had a chance to weaken and shrink the tumors prior to radiation. He also said that the two form a symbiotic relationship with one helping the other.

Ed
Posted 10/13/2015 12:30 PM (GMT 0)

Johnny99 said...
Hi All,
First, this forum has really helped me so I thank all of you and wish you all well. I am not sure if my profile lists my "PC stats" but I am a G9, 5 of 12 cores tested positive, PSA = 18.7 and I am 51 years old.

RP about three weeks ago. As always, at least from my experience with PC, there is some good news and some not so good news. The good: It doesn't appear the cancer has spread to my lymph nodes. The bad: The tumor was graded "T2C, at least" (honest, that is what is says on my pathology report) and "Lymph-Vascular Invasion" is indeterminate but likely. Also, three positive margins exist.

So, my doctor, whom I really like from the Norris Cotton Cancer Institute at Dartmouth, is recommending adjuvant radiation starting once I heal from the surgery (probably sometime in January.) There has been little talk of HT as a supplement treatment. For some reason, HT doesn't set well with me and I am not sure I want to go through with that.

G9'ers, is there any other therapies or things I should be thinking about to talk with my uro./onc. team about at my next appointment? Any advice, as always, will be appreciated.

Good Luck to all of you,
Johnny 99

Surgery was the only option offered?
Posted 10/13/2015 2:49 PM (GMT 0)
To "Almost a 10", my signature is in my profile but I am not sure why it doesn't appear. Thanks for your advice.

To "Fox Run," I was given two choices: surgery or ebrt. I chose the surgery because I wanted this disease out of my body. Thanks for your reply.

Johnny99
Posted 10/13/2015 5:04 PM (GMT 0)
I'm a G9, but I didn't have surgery so I don't think I'm fully qualified to answer this. But I would say that I took the kitchen sink approach and threw everything at it. My aim was "cure" as opposed to "control."

Do you know what the Gleason score was at the positive margin? If it was high, then I'd be inclined to take a very aggressive approach, including HT. It's not fun, but could make loads of sense. Good luck to you and keep us posted!
Posted 10/13/2015 5:07 PM (GMT 0)

Johnny99 said...
To "Almost a 10", my signature is in my profile but I am not sure why it doesn't appear. Thanks for your advice.

To "Fox Run," I was given two choices: surgery or ebrt. I chose the surgery because I wanted this disease out of my body. Thanks for your reply.

Johnny99

Hmmmm.....they don't offer Brachy Seed Implants?
Posted 10/13/2015 5:13 PM (GMT 0)
Johnny,
HT is no cake walk, but from our experience and from what I've read, it can really keep the cancer under control. If there are any micro mets running around and with your pathology of lymph met invasion likely, I am surprised HT has not been discussed. But you are not talking to an oncologist...which you may want to consider doing.
Beth
Posted 10/13/2015 8:43 PM (GMT 0)
Johnny,

My post-op pathology report looked a lot like yours and my doctors also recommended adjuvant radiation and concurrent HT. I can't say I was happy about the prospect. I refer to the combination of surgery, radiation and hormones as a three-scoop sh:t sandwich and I am sincerely sorry that you find it on your menu. My only advice is to hold your nose and chomp it down. The hormones are the most flavorful ingredient but they do seem to make the radiation work better for high-risk guys like you and me. And a temporary period of hormones to go along with the radiation has something of the advantages of banging your head against the wall. Not only does it feel good when you stop but the (slightly horrible) side effects are less annoying because you can look forward to being allowed to stop.
Posted 10/13/2015 9:21 PM (GMT 0)
Dang, often when I read here I think "what the heck, why has my treatment been so minimal?". Surgery only and that was his plan, the guy I was referred to 4 hours away, the widely published chairman at Vanderbilt, so not an inexperienced idiot. As I was sinking low when he was giving me my path report over the phone a week after we got home, telling me that I was not contained as was hoped, but instead had a positive margin(a foci or tiny?) and seminal vesicle invasion to go with my G9, I said "OK, what's next". His answer: "nothing".

To my amazement he gave me a 50% chance(at best) of not recurring. Not great, but better than I 1st assumed when I hear "not contained". And his feeling- as of 20 months ago- was that the literature did not support improved survival with additional treatment before some evidence of recurrence has been found. And he also felt that the earlier additional treatment would give me worse overall SEs, which were bad enough already. He felt if the monster would leave me alone for 1 year or 3 or more before treatment was needed, if ever, I would be better off over all.

So does the chairman at Vandy's high volume prostatic(sp?) surgery department know what he is talking about? I sure hope so, but who knows. There are a lot of different opinions out there. In the mean time I just lost my <.01 at 18 months and graduated to .01(no less than sign, I do miss it) I am grateful that I have had 18+ months of healing before I have any other treatment whenever that might be. In the meantime I will be watching for that .03. I don't think my guys pay much attention until .1, but I will start asking lots of questions if I reach .03.

I suppose you have not had your 1st PSA yet?
Posted 10/13/2015 9:41 PM (GMT 0)
They wouldn't start adjuvant radiation therapy until at least 3 months after RP, so you might consider waiting to get a PSA then, (but no sooner than 6 weeks). That might be a further clue as to how aggressive it is. But it would also be very reasonable to start ADT right away given your very adverse pathology.

HT does add to the effectiveness of adjuvant radiation. At least 6 months, possibly 18 months or more (no one knows the optimal duration yet) for your GS9 with EPE and positive margins. Here's some data:

Combining ADT and salvage radiation therapy improves outcomes

- Allen
Posted 10/13/2015 10:51 PM (GMT 0)
Johnny
Sorry you've joined the G9 club. You're pathology is similar to mine. The data show that you're at high risk for recurrence because G9 is aggressive as heck. I waited until PSA got to .3 before starting ADT and SRT. Now with PSA up to 1.2 only eight months after a short course of ADT, I'm on another round of both therapies , but this time radiation is to all pelvic lymph nodes where scans found two suspicious ones.
You simply must be proactive and accept the fact that you have high risk PCa which requires that you stay ahead of it.
Bob
Posted 10/14/2015 2:55 AM (GMT 0)
You are in a fight for your life....Use every tool available to you, everything that is offered or that is available...leave no stone unturned...You will only get one shot at this, make it a good one....Gleason 9 is a whole different ball-game..
Posted 10/14/2015 7:41 PM (GMT 0)
Johnny99:

I'm sorry you are here but God speed on recovery. I really don't even want to write this to you, as my recovery is a "friggin" downer/night mare. I was a G9 with 8 of 12 positive. Had LRP on June 1st, 2015 (I'm 60). Prior to surgery went for 2nd & 3rd opinions from Oncologist & other surgeons. They all agreed, on surgery as best option for me. Get it out before it spreads. I wish I would have gotten a 4th opinion. The issue I'm having is Perineal nerve pain. I've documented the entire process...notice the pain at day 27, and it now something like day 136.
The surgery and recovery is like a "sliver or a hang nail" compared to this perineal pain. My incontinence wasn't a big deal...wore a pad for about 6 weeks or so. My "flat tire" is gaining air! But I can't sit down. My surgeon said this happens to about 3% of men? I haven't located one!? Going to Mpls to see a Neurosurgeon who supposedly specializes in perineal pain on Oct 28th. Once again, sorry you are here, but wish you a successful recovery.
Posted 10/15/2015 12:06 AM (GMT 0)
I'd vote for Ht. It isn't easy but very doable. It sucks, no one is going to sugar coat it... but it is tolerable. I did 2 years and testostrone bounced back quickly. As a young man I'd assume you would too. Kitchen sink time.
All the best with a tough decision.
Posted 10/15/2015 9:18 AM (GMT 0)
Johnny99

I am not a GS9 but know enough to realize you have got to pay attention to this situation. Stay focused, you are fighting for staying in the game. Spend the resources of time, travel and money that are available to you to identify the best possible doctors and institutions around who specialize in high risk prostate cancer. GS 9 with positive margins is not garden variety PC. I am not familiar with Dartmouth's PC reputation- it may be outstanding. If I were a star high school football player and Dartmouth called, I would say, "Thank you for the consideration, we will certainly entertain your offer, however we are getting other calls from nationally ranked Division 1 national contenders and they want me to possibly play for them!" Unfortunately, your pathology statistics qualify you as a stand out "Star Prostate Cancer Recruit". I would be finding the best of the best for the next stage of the game. You want a 15 to 20 year "career" out of this sorry game. I would want a "coach" who has two national championships and has had a dozen Heisman Trophy candidates. I am sure if you ask, there will be opinions given of where you should go to get the best high risk GS9 treatment in the northeast or even the whole country.
Octorobo
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