I'm married to a 10

My husband (58) was recently diagnosed with an agressive PCa. PSA went from 1.7 9/14 to 13.1 12/8/15 to 31 1/29/16. Biopsy on 2/11/16 results Gleason 10 in 12 of 12. I didn't realize how rare that was until I looked at the Gleason 9 thread. Bone scan and CT on 2/23 showed no distant metastasis but pelvic nodes are enlarged. He started Casodex on Monday and has an appointment for Lupron next Thursday. We met with the RO today and should begin 43 treatments next week. We should also be meeting with the MO within a week or two to discuss chemo after radiation. He is being treated at a cancer center in St. Louis, so I'm not sure if additional opinions are called for at this point. We're eager to get the ball rolling at this point. His urologist and RT are both encouraging, but they also warn that this is not the typical PCa. This forum allowed us to be much more prepared when we met with the doctors to discuss his diagnosis and treatment and also provides lots of encouragement from those who have been there. Past couple weeks have been a whirlwind and I'm not sure if it has really sunken in. We tend to take things in stride and have lived a blessed life. Thanks to everyone for the valuable info and experiences you share.

Sorry you have to be here and under those circumstances!! You definitely have an unusual situation, but on the positive, it's great that no bone or distant met's showed up!!! Great for you both by staying up on your PSA testing looks like you caught this early!!!

I am actually being treated at Siteman (BJC) in St Louis, and have been pleased with the level of doctors there. It is nationally recognize...but in the same regard, it never hurts to get a second opinion also!!

Sounds like you are on a great plan/path now....please keep us informed of how things are progressing, and continue to ask any questions you might have!!

There are plenty around that are G9/G10, advanced and doing great!!! Please don't think you are hopeless!!

Jordan

Hi Maryanddan, love your thread title! My husband, G9 high risk, finished his IMRT Feb 8th, continues on Lupron and we wait for three month to see how the radiation did. Dr King would not start radiation until he had been on the Lupron/Casodex for 2 months, so I wouldn't be surprised if you have to wait on the radiation for a bit. It drove me crazy, cuz I felt like we weren't "doing anything" to put the fire out! Especially if the cancer is not so hormone sensitive anymore. Now we are waiting again. Frustrating!
I have to say that you are on top of it which is great. There are some very informed folks here that do so much for us. This site has really helped me cope by keeping me up to date on what to expect and what options are out there. BTW I just watched a new youtube video that Dr Snuffy Myers put out on BRCA2, Prostate Cancer + Lynparza and another on Oligometastatic Prostate Cancer that are very good.
p.s. You have to get the fiducial markers placed before radiation as well. Husband said it wasn't so bad!

Mary,

Hello there. I was Dx'd back on 12.22.14 with stage 4, metastatic, G10, PCa. My URO. got me started on Firmagon when I got the results of my biopsy. I went hormone resistant after only 5 months on Firmagon. After that I was approved for Provenge immunotherapy, then I went on to Zytiga with unsatisfactory results.

Incidentally, I just got my first infusion of Docetaxel chemo this morning. It all went very well. It also appears that my PSA is getting under control.

There are a few of us "10s" out here.

I wish you and Dan the best.

C.G.

Mary, I can't speak to any of the specific folks at Siteman, but I do know they are a 'top 10 regional cancer center', so you're going to get as good a care there as you'll get anywhere. I also know that most docs don't have a problem with a request to consult with highly reputed docs--heck they all know each other anyway.

Best of luck to you as you start this journey. I don't live in St. Louis, but I know a few guys here who do, and I'm sure they'll wander by from time to time, and might even offer to meet you and your man on an appointment day for coffee and chat.

Let us know when it's time to ring the bell!

Thanks for all the kind words and support. To those who asked, my husband is 58 and being treated at the Pratt Cancer Center. He's scheduled to go in Tuesday a.m. to have some kind of "beanbag" mold made for positioning. RO wants to start radiation right away. Uro said because he's so young, they'll throw the kitchen sink at this. We're fine with that. Luckily he's feeling great and we're both optomistic.

Dear Mary & Dan,

You're going to find a lot of support, informed advice, and first-hand experiences here on this website. We're all here to support you as you begin your medical journey.

It sounds like you've got a great medical plan in place --- that's encouraging. Meanwhile --- do a bit of research, educate yourself, and begin to form a tight bond with your doctors and medical team. Your doctors and medical team become important LIFELINES as your medical treatments begin.

There's plenty of members here who can offer first-hand experience knowledge on all the treatment avenues you might explore, looking down the road. We've got members here who know about radiation, ADT hormone shots, and chemotherapy treatments --- just to name a few of the main treatment categories.

We're all soldiers on the battlefield --- we all support each other --- there are members checking in both day and night, 'round the clock, all throughout the year. We've got members from all over this great country of ours, plus valued members from other countries around the globe. You've come to the right place !

My best advice for right now as you begin medical treatments --- keep living LIFE, just as you have been. Keep in touch with your family, friends, and faith, in whatever form that takes. Keep pursuing your hobbies and interests and passions in life --- prostate cancer is now a PART of your life, but don't let it DEFINE your life, is what I'm saying. Stay active, stay involved, stay interested in the world around you, and keep your "head in the game" of life ...

You've already gotten responses to your post, so you are already experiencing the care and support of our members here --- a collective "band of BROTHERS and SISTERS" --- all working together to encourage each other, support each other, and to walk alongside each other through the peaks and valleys that we all encounter along the way.

Keep in touch with us here ... keep sharing your experiences ... and stay connected !

Sent with all my best to you, looking ahead,

"Cyclone Fan" From Iowa State University

Hello Mary and welcome to HW from another wife (of a G 9).
My husband had a lot of bone and lymph mets at dx, so he has had a lot of treatments in the past 5+ years. You can see all he's been through in his signature.
This is wonderful site to get support from other caregivers as well. There is a long running thread called "caregivers" corner. There hasn't been a lot of activity on it ad of late, but it will get revived as more of us make a presence here.
However, just posting an update or question is going to get a lot of response, as you can see. Also, knowing that you are getting quality care has got 're put your mind more at ease.
Best wishes moving forward, and do let us know how your DH and YOU are doing.
Beth n Gary

Good luck Mary, while I had my treatment at BJH Siteman, the Mercy clinic at Pratt Cancer Center is top-notch.
My Best
Hero

Maryndan,
A5+4 here to offer support. I'm just a guy on the net, no medical background, but I can say you're in a good place to get some information and even vent a little (heck... vent alot ... if you need to).
There is always hope. I started in 2011 as a 7... up'd to 9 after surgery. Made it 11 months then SRT with a good (read sarcasm) dose if ADT. I've been pulling zeroes ever since I finished up the HT.
Am I cured? Heck yes... until I'm not! I know there is a good chance I'm not done with this... but I'm learning to accept and move on. .. enjoy my wife and kids. You know life in general.
Your normal will be different from now on... maybe worse, maybe better in some respects. Lots of research, lots of wondering, even the odd bad day. That's ok. I still have them. Hey, we're human.
This group of guys and gals have an amazing collective knowledge. It will give you a great base to discuss things with your doctors.
All the best! From a random guy on the net proving there is still hope.

Hi Maryanddan, we see so few 10s, sorry your husband rolled that number. Sounds like he is on his way with his treatment journey and that he has great support from you. We all know that matters as much as the actual treatments. Keep us up to date. Take care. -JR