New to the Forum. Looking for some positive..

JP,
Welcome to the site and I'm sorry that you have to be here, but glad that you are here so that you can get the support you need and information to make informed decisions. I haven't seen any recommendation that there is another thread here for those of us with the Gleason 9 diagnosis. It doesn't seem to be as active as this thread, but there is valuable information for those with the G9 diagnosis.
Be positive brother!

Ron (Boomer)

It's been 10 years since my first diagnosis of prostate cancer at age 58. One year ago, my Oncologist told me: "I'm officially releasing you, you don't ever have to come back."
I celebrated by taking my wife to Hawaii for 17 days.

Keep a positive attitude. Studies have proven that it helps in healing.
At first it was like someone was telling me I was dying. I convinced myself that the surgery and treatments were the best thing that could possibly happen to me. I went to every appointment happy to be there. I looked forward to going.
One nurse told me: "You are a ray of sunshine in a very dark place."

Hey guys. Sorry for the delay in checking back in. I’ve been all out of sorts with this lately and really having a rough time dealing. Today was an emotional set back.

Met w the Urologist last Friday. He seemed upbeat regardless of the G9. Suggested surgery based on my age. Davinci Robot via the surgeon with my local hospital (I hear he’s great) Possibly radiation and hormone therapy after. Still wanted me to meet with Radiological Oncologist, also to get the PETscan (obviously). He seemed to think distant spread was unlikely due to my lower PSA (5.33). I walked out of there not so horrified.

Met with the Dr of radiation oncology today. He was more fact based about the G9 diagnosis . Explained radiation vs surgery in great detail. Suggested radiation w hormone therapy…..This from what he says is assuming there hasn’t been metastasis and it has remained a localized cancer..If the former, he, instead with medical terminology, described it as what I heard…”craps creek”. And said that I am at high risk for this…Essentially I would be referred directly to the lead oncologist and he’d take it from there. Combination of radiation, chemo, hormone therapy and what have you. He made it seem like it was possibly life extending for a few years or so. I wanted to vomit.

I asked him if he thinks it’s metastasized, his response was, “you’re at high risk for that”..Then semi negated the Urologist’s theory of lower PSA meaning less chance of distant spread. He said it’s possible but G9 cancer is also notorious for producing low PSA and it could have spread with any level PSA.

Scan is scheduled for next Thursday the 25th. Appointment to discuss is Monday the 29th. Oh by the way I turn 49 on the 27th. What a birthday..

After the appointment and In an absolute state of “what the F do I do now”, I called the help line at Memorial Sloan Kettering and spoke to one of the most amazing counselors I’ve ever spoken to. She listened to my tale of woe and suggested either getting the ball rolling with their team now or wait til after the scans come back. I opted to wait for the scan results. She said ok and also said she would connect with all of my drs/facilities and gather all of the scans/reports/results and everything.

I still feel hopeless..but this seems like some kind of step in the right direction.

JPS…Very tough diagnosis for sure. For high risk guys a single monotherapy treatment may not be the choice that offers the best odds for a cure. I hope you’re considering MSK. It’s a center for excellence and can offer the very best treatment options. Best wishes. Terry

Surprisingly, you can do two things at once. My wife (breast cancer recurrence) made appointments at the University of MN and Mayo Clinic, our two well regarded cancer centers. U of MN was first visit and Mayo took a few weeks longer as she wanted to see specific oncologists (both maintain cancellation lists if you have schedule and doctor flexibility). Both came to the same treatment conclusions so she opted for the University as it is much closer. The oncologists actually knew each other, small world.

She is still around and doing well at 4 yrs with a great team at the University. I suggest making your MSK plans now since you have the PSMA PET scan scheduled. There is almost always a lead time and you will want these appointments to fall in line sooner than later.

Yes, you will have the emotional roller coaster ride until you get to treatment time and are actually doing something. There is little that anyone can say to make you feel better but we all know exactly how you feel. Hang in there.

I did check out some of Dr Scholz’s videos. Very informative especially in the area of G9 diagnosis.

I just scheduled all of my appointments with MSK. Surgeon on Friday, MO on Tuesday, RO on Wednesday. Scan is scheduled locally in CT on Thursday. Meeting to discuss results with the CT RO the following Monday. Will have that info forwarded to MSK as well.

MSK has been amazing so far. I’m working with a single point of contact. She’s getting my biopsy results and slides today for their review and analysis.

Thank you all for helping me keep my head up. This is something I never imagined I’d be dealing with.

Satellite offices, West Harrison NY and Montvale NJ. My wife has been coming with me, which has been very helpful. I might have a friend come with me for this round.

Jim, no advice, just wanted to say I'm glad you're getting your ducks in a row. Sounds like you have a *great plan*.

JPS, Great job moving ahead on several fronts at such a tough time. To my thinking the PSMA scan (hopefully Gallium) will frame your treatment decision options in the near future. I have been with the MSK Mother Ship in Manhattan since 2011, and have been so fortunate to be there. I have a good friend who lives near me here in Albany, and he opted for the New Jersey office — all good for him too. Wish you a very boring scan report. I had a lynch pin PSMA last February as things were not looking good at the time, and I appreciate the anxiety and fear of it. Hang in there. You are doing everything you can… Bill

JPS, not only was I upgraded to G9 I also had metastasis to bones. I responded great to doublet therapy 6 years ago. Now they have triplet therapy which shows even greater results. Feel free to email me for more support group info. Just click on my name.

Are you still visiting with MSK people? Too much knowledge is not dangerous.

The issue with a positive lymph node is that it expands the already difficult surgery to remove lots of lymph nodes (never just one in reality) and can have adverse effects. The alternative is do radiation after surgery depending on what the prostate pathology says and PSA monitoring. The statement "not possible" is not a good choice of words and should be "not recommended".

Radiation can expand the treated area to include lymph nodes as part of the treatment scheme and adding hormone therapy helps weaken the cancer cells so it is the better choice for such situations. Some would say a "triple play" treatment scheme (two radiation methods, focused and general, plus HT) would be recommended in your high risk case as a G9 so that requires some discussion with RO.

There are possible side effects with all treatment methods so nothing stops those concerns, you just hope you are not one of the unlucky men that have difficult side effects after treatment.

I would keep researching options and pick the best on for you. You only get to do this once in pursuit of the elusive "cure" so your first shot at it needs to be your best shot. As you can read, I had surgery then my pathology went downhill so I followed with preventative RT.

You are getting a second opinion at this point which is a good idea for a major deal like this. You can lay out everything that has been discussed or proposed and get their viewpoint and options or vice versa. They will not be offended. My wife got a second opinion at Mayo, I sent a friend to Mayo to get second opinion also, and both had the treatment here vs. 80 miles away. We are lucky in an odd way if one has cancer.

One limitation with local people can be that they only propose what they can do with the skills or equipment they have. MSK, Mayo, MDA, etc have the ability to do about anything since they have the reputation and money to have the latest and greatest of most things, at least at the main locations. You need a 8T brain scan, they got it. Proton beam treatment, no problem, and so on. Same holds true for treatment procedures where they can offer every mode of radiation treatment possible, not just the one that can be done at a single location.

There are a few folks here that get their care locally in conjunction with well known specialists at a major institution. Usually these are the more complicated cases and not primary treatment though.

Not quite the same as getting a second opinion on a water heater repair. Make use of MSK expertise and learn as much as you can before final decision. Also helps with the second guessing after treatment if things are not going perfectly.