Received G9 Biopsy

Welcome - That is not the best pathology to have but it is not a death sentence either. Your post prompts lots of questions like what was your PSA that prompted the biopsy and so on? You can share more details when you are up to it.

Every man here was crushed by their prostate cancer diagnosis and it sucks, no way around it. It does get better when you finally understand and believe that it is not a death sentence unless you ignored it for years and it is the rare bad situation. Even then, today’s treatments are very effective and keep the cancer in remission for a long time.

The main thing is to settle down and find a well known cancer center at the major Universities, Mayo, MD Anderson, etc to get evaluated or a second opinion. You will require an aggressive treatment scheme to attack the high risk pathology to knock your cancer out which can be had at the major places. Same with the latest scanning methods.

Ask any and all questions you might have as you start learning about PCa treatments. There are some great books and publications that are easy to find. Hang in there, others will respond soon.

JC9, I also went through several Uros who had me watch and wait until I was diagnosed with a GL-8 4+4.
There are many here who have a GL-9 diagnosis. They have been here for many years and I am sure will give you great recommendations going forward. There are many treatments now that are very effective at keeping PC at bay. Ask as many questions as you want and be assured we are all here to support both you and wife while you navigate through the treatments that will be coming. Most of all stay positive.
My best wishes to both of you,
Jack

Larry, hello and welcome to our forum. Yeah, you got a bit of a tough diagnosis but fortunately you are in a era where modern treatment is likely to give you many more years with us.

As Mumbo said, you are likely to need and immediate and aggressive treatment scheme to attack this thing. You'll need to find a medical team who is experienced in treatment of advanced prostate cancer. You'll also need to do your homework to be your own advocate re treatments. Shown below are a few YouTube clips from noted prostate oncologist Dr. Mark Schotz. This should get you started.

There are a number of men on this site who have successfully dealt with high Gleason cancer and I expect they will be along shortly with some thoughts. Feel free to ask any and all questions; we are here to help you.

Good luck,

Jim


https://www.youtube.com/watch?v=5gceylhylw0

https://www.youtube.com/watch?v=5al-1mz0i9y

https://www.youtube.com/watch?v=q2btlh7mwse

Hello, JC9sav ~

We are here to encourage and support you.

I was diagnosed with prostate cancer while still in my 40s, and a PSA over 100. By the time I was diagnosed, prostate cancer had infiltrated into both my lungs. It was a sobering and unexpected diagnosis.

I found this website and started feeling hope, as others here "threw me a lifeline" and let me know I wasn't alone in the battle.

I gathered up my inner MOJO and became very determined to get into the boxing ring and start fighting.

I will say that starting new treatments brought me newfound hope. That first shot of LUPRON knocked my PSA down to double digits, then single digits, then lower. I subsequently switched to Firmagon, and ultimately Zoladex injections.

I found a top-notch oncologist and eventually went to Mayo Clinic to see thr noted Dr. Kwon. I pursued a combination of treatments, and treatments brought me even greater hope.

I marked TEN years of survivorship last fall. I still teach school full-time and stay active. I continue to face forward.

I want to convey that there are NEW treatments, approaches, and medications that didn't exist when I was diagnosed over ten years ago. Your medical team can offer you a treatment plan, with many new "weapons in the arsenal."

I will not promise you that treatments are always easy. I went through four months of chemotherapy treatments and nine weeks of radiation.

However, I will say that my toughest treatments have paid great dividends. It's possible to take a tough prostate cancer diagnosis and beat it back into a durable remission.

When I got my diagnosis, I figured that would be the last Christmas I ever celebrated. There's ten "new" candles on my birthday cake nowadays, since my diagnosis. I share that hope with you today.

When I was first diagnosed, I was desperate to hear just ONE story that gave me some hope when I found this website. I couldn't sleep at night, and kept scrolling through the stories here.

This is just one story, and there are countless others here. My treatment history is shown in my signature below. All treatments have helped me, and paid worthwhile "dividends."

I hope my story gives you the sense of HOPE that I desperately needed back in 2013, when I was first diagnosed.

Consult with your medical team, consider getting a second opinion, get some treatments started, put on your boxing gloves, and remember that a cancer diagnosis is a chapter in your life's story, but a diagnosis doesn't need to become the TITLE of your "Book of Life."

Sending you my supportive thoughts & encouragement today!

Handshake, fellowship, & camaraderie ~
CYCLONE ~ # Iowa State University

Yes, the situation you are facing is scary, but as others have pointed out, there are some excellent options to consider for treatment.
It's likely that you will be offered some form of 'triple play' therapy. This means two kinds of radiation (usually brachytherapy + IMRT) and Androgen Deprivation Therapy (ADT; hormone treatment). There are several variations on this theme (I went a slightly different route; see my story), but as others have already written, one of the most (if not the most) important issue is to consult with a highly respected center of excellence for (advanced) prostate cancer.

Post Edited (Sr Sailor) : 4/5/2024 8:16:59 AM (GMT-8)

Hello Larry from a fellow Gleason 9. It's been many years, but I remember the kick in the teeth I felt when I got my diagnosis. But that was almost 12 years ago and I'm doing fine with a very low PSA and no real side effects to mention. Yes, this sucks, but there's a ton of hope.

I do have a comment about one thing you wrote when you said you were inclined to go along with whatever you uro said whether it was good or not. I felt exactly the same way. My uro recommended surgery and I went ahead and scheduled it. Then I found HealingWell and some guys here encouraged me to explore all of my options. I did and ended up with the "triple play" mentioned in the post above.

I'm not necessarily saying that you should take the same path, but you owe it to yourself to check out all of your options--you only get one chance to do that. So in addition, to seeing the urologist, I recommend you set up an appointment with a radiation oncologist as well. I'm sure you want to move quickly, but you do have some time. It took me about two months to assess my options and move forward. Those were a long two months, but I'm very glad that I did it.

Hang in there and I hope we can be helpful to you as you go through your journey.

Larry - your female urologist might be the best person to address your questions as she probably has no vested interest in the treatment and can be more straight forward. Generally but not always, a urologist that handles prostate cancer is a surgeon by training and are inclined to push you in that direction. The team approach is not always embraced at all organizations so you have take responsibility for running lead on your PCa health care, there are no stupid question so ask until you are satisfied with the answers, get second options when needed, and so on. You ask for a referral to a radiation oncologist (RO) if that is not suggested or call yourself.

Yes, IU Simon Cancer Center is highly recommended. See link below:
https://www.cancer.gov/research/infrastructure/cancer-centers/find

You probably have private insurance so you will need to check to see who is covered, etc. Sometimes it can get costly to go out-of-network. As far as Mayo, etc, you just call them and explain the situation and they will walk you through the process. They get calls every day like this so business as usual for them. I would exhaust your efforts with IU Simon first and look to others depending on that goes.

In many ways, your situation is sort of simple, so far you are clearly a high risk situation and require a high risk solution. As Michael note, the "triple play" of hormone therapy, focused prostate radiation, and local area radiation is the preferred treatment scheme. There are a few more diagnostic things that I mentioned previously but everything points to an aggressive treatment scheme to give it your best shot now.

I cannot emphasize enough the need to manage the process yourself. Listen, learn, question, repeat. You have to be happy with the decision making process and the decisions you make at the end of this. Ask for copies of all reports, use the medical portal to secure documents and test results. You should have a copy of your MRI results and your biopsy results in your possession after your next meeting or where to access them.

Sorry to ramble on but it brings back memories.

Mumbo said,
<< Larry - your female urologist might be the best person to address your questions as she probably has no vested interest in the treatment and can be more straight forward.>>

Definitely.

15 years ago I had MRSA and went to a university urgent care expecting to get antibiotics and then be on my way. My thumb was gigantic and hurt like hell. They X-Rayed it and showed me how the infection infiltrated the bone of the outer digit of my left thumb (I'm left handed). Called in hand surgeon. He said a minimum of deep debridement, maybe amputation. He was scheduling surgery for the morning. This did not sit well with me. They had already given me 2 shots of antibiotics, so I got up and informed them that I was leaving because I wasn't ready to lose my thumb just yet. The surgeon became VERY offended. He said anywhere I go they will order the same treatment. He even called security on me. Lol. The antibiotic shots made the swelling go down and I returned to the same urgent care a few days later and got a different set of doctors. They decided to just try 6 weeks of vancomycin. Worked perfectly and I got to keep my thumb.

So Larry, if you're still reading this, I tell this long story to make a point. Like Michael, I found your comment about "just doing what the Uro says" to be concerning. There's more than one way to skin a cat, but there can be much better outcomes depending on how it's done. If you nicely tell a doctor that you want to look into alternatives or 2nd opinions, it's the doctor's problem if he/she gets butt-sore. Probably won't happen, but it does happen.

Good luck in your treatment.

Larry - You are doing fine, you will have a great second opinion place lined up if needed after IU-Simon. It is easy to say no or not now if they call back soon. Mayo is just taking care of business, gathering records is the first step. No commitment is being made on your part or your insurance company.

I live 85 miles from Mayo and have been there and referred people there. They get after things when people call. My wife ended up going to the University of MN after a Mayo visit as they offered the same treatment scheme and 20 minute drive is a lot better than 1.5 hour drive. Both are recognized cancer centers and their feelings are not hurt if you go elsewhere.

Enjoy your weekend, next week will come soon enough.

Just wanted to say there's nothing wrong with keeping multiple irons in the fire. In fact, I think it's actually helpful.

You're in the most confusing part of the process: trying to figure out what to do and navigate the system. The fact that you have to do it while being under the stress of just being told you have cancer makes it even harder. Just keep moving forward--you'll be okay.

Best thing I EVER did was to add an oncologist to my medical team.

All my urologist talked about was the ADT hormone deprivation shot to suppress testosterone, which was my initial treatment.

My oncologist opened many doors to other FORMS of treatments, which my case required ~ in my case, that included chemotherapy, radiation, a newer medication known as ZYTIGA, and state-of-the-art genetic tests.

My oncologist looks after me like a brother. I see him every five weeks. That might sound like a lot, but he manages my case with precision, and with an initial PSA over 100 at diagnosis, I am still here, over a decade later.

If one receives a prostate cancer diagnosis, be sure to add a top-notch experienced oncologist to your team. My oncologist is now the "quarterback" on my medical team.

My father is in the same situation, and he has done the very same.

With my best,
CYCLONE ~ # Iowa State University

I'll add my welcome as well. I was not G9, so I followed a different path...but I get it. From the link someone posted, IU-Simon is on the list of NCCN centers of excellence--which is the umbrella group that rates hospitals, and a center of excellence is what you need. Another cool thing I've learned is that at the high level, all the doctors know each other. They share ideas about complicated cases.

Whichever you choose, IU or Mayo, you'll be in good hands. I also believe this: when you meet 'your team', you'll know it. You're just a few days in. We've offered what reassurance and experience we can. The medical team will provide more. The important thing is to get into that top center and have a sit down and consultation. Take notes. Better yet, take someone with you to take notes.