New Member With Gleason 9 Looking for Advice

Welcome CJ - sorry to hear about your husband's situation, but welcome to this community.

There are quite a few Gleason 9 guys here and some of them have had very good results keeping this beast at bay for a long time. I'm sure some of them will be along shortly.

If you use the search interface in this form and type in "G9 Club" without the quotes you'll see a lot of the postings from others who have been diagnosed with Gleason 9, and what they are doing.

Also, read the "sticky" thread for the newly diagnosed. In all likelihood, the docs will recommend against surgery and for a combination of radiation and hormonal therapy. there are multiple drugs now approved for treating PC, both hormone therapy, chemo, and others. And new ones are in the pipeline. The good news is there are a lot of options, and more coming every day.

This is the kind of situation where it is helpful to get a second opinion, and maybe a second reading of the biopsy slides.

CJ
Welcome to HW.
I had #s like your husband's - provably even worse. My disease was described as aggressive and extensive with severe bone involvement. But after several treatments that have included many of the options available, my cancer is undetectable and stable. Check out my signature for a recap.
The first weeks are the worst. It gets better as you understand that you have options. You found a good place here at HW to ask questions and get info from guys who've been in your husbands shoes.
Good luck and keep us updated.

Carol, sorry for your husbands diagnosis. Not much to add, but you'll get lots more responses from other G9 guys as the day rolls on. As others have said, just know, and focus on the fact that there is much that can be done.

Hi Carol,
Welcome to the site. You have found a great resource for everything involving Prostate Cancer. Like me, your husband has an aggressive form of Pca though its good to hear that the scans came back negative. It was a shock for me to learn of my diagnosis and once I knew I had it, information came flying at me so fast I truly did not get a chance to absorb it all. Had I been able to, I may have made some different decisions but that's all in the past now and I am left to deal with what I have.

My urologist recommended surgery and although statistically there was only a 6% chance that the cancer was still contained in the prostate, he suggested that if I had surgery, he would recommend adjuvent radiation therapy and that surgery would confirm whether the cancer was contained in the prostate or not. What I did not consider is that post surgery radiation would increase my risk for secondary long term side effects and although I have been referred to a radiation oncologist on two occasions, I have been declined radiation due to the risks of secondary side effects. I am now faced with a rapidly increasing PSA and am currently finishing up my second cycle of chemotherapy (not fun).

The point I am trying to make is that before you and your husband decide on a treatment option, make sure you understand the risks and the benefits of each treatment. Best wishes.

Dear Carol:

You've come to the right place. You'll get a lot of encouragement and advice to supplement what your doctors tell you.

There's little doubt that the PCa has escaped the capsule with gleason 9 and high volume. Being the eternal optimist, even as a gl 9, I had RP surgery which is the only way to know the extent of the PCa. So I was upgraded from stage 1 to stage 3 after surgery. My view was that I could always have salvage radiation therapy (SRT) if the RP failed, which it did. Then I had SRT which also failed and only hormone therapy (HT) brought my PSA down to undetectable. Then PSA started to rise again after I got off HT. None of my scans ever detected PCa and I have no mets or PCa symptoms. So now I'm off to Sand Lakes Imaging in FL to get more and different scans to try and find the buggers.
As has been said here, the side effects of treatment can be difficult but they vary from person to person. RP definitely impacts your sex life immediately and RT can effect it later on. But when you're trying to get a cure, sex is not high on the priority list. But it becomes important again after treatment, even if treatment fails. When you're on HT, you have NO libido, so sex has no relevance. Other side effects are possible particularly with HT. So whatever you all decide to do, choose the best practitioners so side effects are minimized! I believe the best are at the best hospitals or Centers known for Urology and Cancer.

Take care and God Bless!
Bob

Hi Carol. Sorry you need to be here, but welcome to our forum. Your husband is lucky to have you on his team! He may be reluctant to participate here, especially at first, but let him know we're here for him. Ask, vent, whine, whatever's on your mind it's likely someone here has been there.

From personal experience, I understand how shocking that G9 diagnosis is, and then to top it off with a high volume 5+4. You two may still be struggling just to breathe right now. When I received the biopsy results I thought I could hear the earth revolving. I'm the same age as your husband, and was diagnosed about 2 1/2 years ago.

It does get better, especially once you begin to form a treatment plan. And from the G9 threads our friend "Nomar" linked, you'll find many of us G9 types here and many (most) doing pretty well. It is serious, it is aggressive, and it does merit the most aggressive treatment. If you click on someone's screen name by their post, you'll find many have an email address available. Feel free to contact any of us that way too, especially for something you may not want to post for everyone to see.

I've added you (for your husband) to the illustrious roster of the G9 Crew, and welcome you (reluctantly) to the 5+4 chapter, the least popular chapter of the least popular club anyone would never want to join!

You can see from the responses already that there are a lot of great guys here. They really helped me get my feet on the ground and start thinking forward in a solution mindset. That helps a lot too, so you're not flailing about in a quicksand of despair.

One key question, has he had an MRI yet? I had a "3T MRI", quite detailed imaging, to help stage the cancer. With a high volume G9 your doctor's probably right that it has spread a bit locally, "penetrated the capsule" they'll say, and thus considered a cT3 (clinical stage 3, also sometimes termed locally advanced). The MRI can help to directly confirm that, and it can give you some comfort in the major surgery-or-something-else decision.

In my case, it was visibly out of the capsule, and thus surgery was unlikely to be curative. Radiation plus hormone therapy seemed like a more likely treatment, since (optimistically) we're going for a cure.

Blessedly, here I am 2 years after radiation treatment, with no side effects from it (at least not yet). The hormone therapy is ongoing, and the side effects of that are ever-present. But, my PSA has been undetectable all that time as well, so I'm taking the success!

From Carol's husband Bill; A heartfelt thanks for you'all reaching out to us in a pretty terrifying situation. I am signing up now with my own login so I can converse with all of you directly.

Regarding Fairwind's suggestion, another term for surgery in that setting is "debulking" the tumor. You can look for studies about that, too. There's a lack of agreement on its benefit, but sure worth checking it out.