Gleason 9 first post here!

Hello everyone! My husband was diagnosed late October with prostate cancer. Biopsy showed 11 of 12 cores positive. Two were 4+5, two were 4+4, the rest 7 and 6. Obviously high volume tumor. Bone scan clear, MRI showed ECE. We met with oncologist and surgeon at Sloan Kettering and had prostate removed December 15. My husband was adamant that he have surgery to debulk tumor. Post surgery, he is doing well, no incontinence, but ED. We talked lots about that and we will be seeing Dr. Mulhall at MSK for help with ED. Pathology came back as follows: no positive margins, no bladder involvement, no seminal vesicle involvement. Pelvic lymph nodes on both sides clear. However, at the site where tumor pushed through capsule there was one lymph node in fatty tissue positive for cancer; extranodal extension not identified. t3a

Husband will be taking first Psa test this week followed by a visit to MSK next week for follow up. We have been researching forums like crazy (could be a full time job for sure!) but it becomes overwhelming. We realize this is a serious cancer that he has and want to be armed with the best information as possible. Any comments, advice, or just plain support would be appreciated! I want my husband around forever, but at age 57 I would be so thankful for 20 years..may be a stretch but with all the advancements in prostate cancer recently, we are going to reach for the stars!

Let me be the first to welcome you both to the HW forum !!.......I`m pretty much of a nobody around here ....just another guy fighting the battle.....from what you said , it sounds like the removal was successful and from what Iv`e read over the past months , the ED will possibly get better with time ....but , I sure don`t know ....I`m working on that too........but WELCOME ! David

ITT - I'm just another "nobody" here, but since I hang around here a bit, I'll add my welcome to you and hubby. I have no personal experience with high-Gleason PCa, so I'm not able to offer advice. What I can offer is the fact that you have come to the best place I've found to learn about PCa and its treatments. The folks here know a lot, they are very good at sharing their knowledge, and they are a most compassionate group. If all of the choices you and hubby make are as good as the choice of coming here, you'll do fine.

Welcome to the club. Even though you husband's G was 9, there is a lot to be hopeful about. The fact that the lymph nodes were clear and negative bone scans is great news. That said, you may want to discuss the possibility of secondary treatments. The goal is to kick cancer in the *** as early as you can. For me that ended up being hormonal and 48 rounds of radiation after surgery.

There is still life even with advanced cancer. I was diagnosed at 58 at the start of 2016 with Stage 4 D1. We just got back from a scuba trip. Going to try to do a 8 day, 380 mile bike tour this summer.

Leading from within...good is a pesky and persistent taskal...er...ah...rascal...consistently true...as in being true to something or "one"...

Welcome to our little world and I'm so glad to see you hear advocating for your husband. I was blessed to have a supportive wife throughout the process and it was incredibly helpful.

I'm also a G9 (and about your husband's age), but went the radiation route instead of surgery. That said, can I presume that with the push through the capsule that they are recommending radiation as a follow up? To the extent that any other cancer is local, radiation could be curative or...you could see very long-term control. Also wondering if they're recommending hormone therapy as an adjunct to the radiation, which is typical with higher Gleason scores.

Good luck to your husband and I hope we can be helpful to the two of you!

Thanks everyone for the replies! I am glad to have finally been able to reach out here...I have been lurking since my husband was diagnosed in October.

My husband's psa at diagnosis was 7.5. We are thinking that radiation and hormone therapy will be recommended; our follow up appt is next Wednesday and we will see what his psa is. Our oncologist at MSK said at our first meeting that chemo rarely comes into play with Pca but we have read differently. With that in mind we are going to discuss all options. Honestly, I think we may have discussed treatments but I have to admit I was still so stunned to hear that my husband has cancer and I tuned it out...I have since recovered and realize that i need to be there to support my husband who has always been my rock. And he is prepared to battle!

Welcome to posting! I hope you continue to see good results from the initial tx and are able to avoid further tx for many years.

@PDA..."heavenly glow and the angels don't sigh"?? You crack me up!!!
Beth

Celebrate life and Peanut307:your husband's signature gives me hope and inspiration. (Actually just being here gives me hope as well and it sure is nice to read and compare signatures of other g9 guys.). How has he tolerated his treatment? Also I see that peanut307's husband takes vitamin d3, ginger and turmeric. We try to stick to a plant based diet now and do use turmeric, ginger and hot sauce, which has always been a favorite in our house. I know not everyone agrees with supplements but in moderation I think it's ok.

My husband's first psa test is tomorrow. It has been six weeks since surgery. He will also have blood drawn at MSK on Wednesday. I'm worried; he is just trying to live our life as normal as possible for the moment. Of course we now have a "new normal"! One of our kids is getting married in April, and we are planning a boating trip for the summer. Hoping that side effects from any treatment going forward won't get in the way.

The surgeon saved one side and most of the other nerve bundle. We are dealing with ED but honestly I tell him I would rather have him alive then stiff and dead...we use humor to help us through. Intimacy is very important to us as well and my husband is on board with going for injections. In fact, our surgeon set us up with a colleague at MSK but we have not seen him yet. Surgery was during the holidays, and at the last minute the surgery got bumped up, and had to cancel the meeting. He went for blood test today locally and will have another at MSK on Wednesday. I will keep everyone posted with details. We know G9 is tough and my husband is worried about the lymph node in fatty tissue that had some cancer...he's thinking the psa will not be good. He is normally a very positive, glass half full guy, so i pray that he will get some good results for the moment. And in the meantime, we are having our own happy hour!