G10 with Mets

Well... the verdict is in and the thread title says it all. My situation seems to be so unique that I thought i was start a new topic on it. Quick review although most of it is in my sig panel. PSA 9.9, 3 positive cores in biopsy showing 50%, 20% and 10% with perineal invasion. Ranked as G10, CT scan showed problems on L3, L5 and T12 vertebrae. Bone scan showed that plus spot in shoulder, two ribs and "activity" in kidneys and bladder.

I've now been to two different RO's and heard very much the same thing from both. Surgery, of course, is no longer an option. They both would do ADT and EBRT but neither recommends Brachy. They will focus on just the prostate as there seems to be some evidence that treating there will help in other areas as well. I asked about treating the specific spots in my spine and was told they would do that only as pain management, if needed. The concern was that they did not want to damage my bone marrow as it could be important for my treatment later on.

Neither if them could give me a prognosis. They said they have seen cases like mine where the patient was fine 5 years later and others who were gone in 6 months. They won't know until they see how my body reacts to treatment.

Randy,

Welcome to the forum. That indeed is a serious diagnosis. It’s not all gloom and doom. ADT treatment has improved and years of survival is quite possible. It’s important that you also consult with a medical oncologist who specializes in PCa. An MO will likely recommend that you go on a Lupron type of ADT, plus Zytiga, which gives much longer control of the cancer.

Stick with us. We’re here to support you.

Thanks for the update. And we've had guys here with advanced PCa that are doing okay 10 years later, let along the five years the RO quoted you. I agree with the question about consulting an MO--particularly one that is well versed in PCa. If you're anywhere near the west coast, I can recommend Prostate Oncology Specialists in the LA area. In fact, even if you're not near the west coast it could make sense to see them. They deal with a lot of advanced PCa cases and they're solely focused on prostate cancer.

Thanks to all for the encouraging words. I have been in a pretty dark place for the last week or so but for some reason, I woke up feeling much more positive this morning.

For those who mentioned it, thanks for the suggestion. I do not have an MO on the team yet but the RO I have chosen to treat has raised the topic and wants one on the team. I have also learned a couple of interesting things about my extended family. It turns out that a cousin I have seen only a few times over the years, is in the pharmaceutical industry as an oncology specialist. He is plugged into pretty much every clinical trial in the country in one way or another. I have also learned that the step-brother of a very close family friend is supposed to be one of the top prostate specialists in the country. I believe that he is at MD Anderson but don't have the details yet. I will certainly be following up with both very soon.

I will be doing the EBRT sim next week. Then my wife and I are going on a long planned cruise (we celebrated our 30th the day I got the bone scan results back) the week of Thanksgiving. Once back, I will immediately begin both the ADT and EBRT. It's good to have a plan. It does make me feel better. I just wish there was more certainty around it.

Thanks again.

randy, sorry to hear about the news. That can be discouraging, but as others have mentioned no one can predict how your case will go. We have guys here diagnosed with advanced cases that are doing very well indeed. There's definitely hope!

Randy, I can’t add anything to what’s already been said. Just want to say welcome, sorry for what you are going through, and hope you have a good outcome.

For what it’s worth, I’ve been on ADT for 3 months now, and am in my 7th week of EBRT. My only side effects have been hot flashes, very manageable, and that’s about it. I hope you have a similar experience.

Welcome to our club nobody want to be in. Throw the sink at it and keep swinging. Lot of good folks who can help you. You are not alone in this.

HI Randy,
Welcome to the forum but sorry to hear of your diagnosis. I just want to say that although you may have a tough case there are treatments that will help you keep this beast at bay for quite a while. Wishing you all the best.

my brother from a different mother....we`re all in this together ....hang in there ....Peace ....David

Hi Randy,

Yes, but didn't use them. I believe a few in the office he is affiliated with do PCa work. If I remember it is Georgia Cancer Specialists. They are a large group affiliated with Northside. I don't know which ones specifically work PCa and what kind of experience they have with situations like you. Dr. McCord has been at this for quite a while and should be a good source for you. The MO I consulted with, Thomas Seay, passed away a few years ago. He only worked breast and prostate cancer and was excellent. My wife used him for some 15 years for breast cancer. I see my urologist this afternoon and will ask him for some ideas.
Jack.

Hello Randy ~

I was diagnosed over five years ago now, with an initial PSA of over 100, when I was in my 40s. By the time I was diagnosed, the prostate cancer had crept into both of my lungs. It was a sobering, unexpected diagnosis.

My treatments began immediately --- ADT hormone shots brought my PSA down, down, down ... then, I was in the first wave of fellows here in the United States who jumped on the newly recommended "early chemo" plan ... bringing my PSA down into low decimals.

Since then, the newer breakthrough medication called ZYTIGA was prescribed, to help me maintain the gains I had made with ADT shots and chemotherapy. I have now been on ZYTIGA for over 40 months.

This past spring, I went through nine weeks of pelvic radiation. As the months have gone by, my PSA is in the undetectable range.

I have continued my full-time career as a teacher ... I walk each day ... I participate in social events ... and I just participated in a 5K prostate cancer walk to honor my fellow "brothers in the battle" ...

I hope my story will encourage you ... I have put together a medical team comprised of my original urologist, an oncologist, a radiologist ... and I visit Mayo Clinic in Rochester, Minnesota, two or three times a year, to take advantage of their advanced scans and imaging, and to consult with a noted urology oncologist there, who has contributed his expertise to my case.

I will be celebrating my sixth Thanksgiving and Christmas since my diagnosis as the holidays approach ... and here I am, still teaching school full-time since "diagnosis day" ... I have much to be thankful for ... and my doctors have been a GODSEND to me.

Stay strong ... stay determined!

Handshake of support, from "one brother to another brother" ~
CYCLONE ~ Iowa State University

There is no way that I can thank all of you individually so to all that have provided support, encouragement, recommendations and personal stories - thank you. This is a great site and you are all fantastic people.

Jack - My Uro is Dr. Bhalani of Advanced Urology in Johns Creek. We have been very impressed with him so far. I will see him Monday for a review of my diagnosis so far. I understand that the Uro usually handles the ADT treatments The RO wanted to wait until after we return from our cruise to start ADT but I feel like we are wasting too much valuable time. I intend to push this issue on Monday.

Randy... Just wanted to wish you and your wife a great cruise Try to forget pca if you can think of it as a new normal don't let it stop you enjoying time with family and friends! My own personal experience at the Mayo once your done with surgery and have to move on to ADT and SRT the urologist hands you off to the RO and MO. I actually go up to the chemo floor to get my Lupron shot as I understand they build it right there to match your weight and etc. After you get done with the cruise and start ADT you can tell the MRS. that if you don't get all the things done on the honey do list that you were in the Lupron fog and forget the list!! LOL Wishing the best for you guys as you go forward from here!

Larry