Diganosed Gleason 9 Today

Karen has here own thread here: www.healingwell.com/community/default.aspx?f=35&m=2703314 -- PeterDisAbelard

Hubby, 59, was diagnosed with Gleason 8,but other docs put it at a 9. We are going to Boston tomorrow to see what they plan...originally they said surgery,but now they say they want to look at other options. MRI came back good,no sign of spread beyond prostate. Only one sample out of 12 shows any cancer. Isn't that odd? they mentioned very specific radiation for only a week that zeros in on the specific area. Anyone else hear of that treatment?
Karen and Lenny
GS 9?
One sample out of 12
MRI Clear

Post Edited By Moderator (PeterDisAbelard) : 4/15/2013 2:15:32 PM (GMT-6)

Jack Z,

I am so sorry to hear of your diagnosis. I am a Gleason 9 and still fighting the good fight since diagnosis Jan, 2011. Currently I am still Non-Detectable which is somewhat of a miracle. There are a number of us on HW that are in the exclusive G9 category and I am sorry that you joined us, but we and I mean, the entire HW brotherhood are here to help you through this.

You will encounter many amazing men and women that dedicate their life to helping us fight this disease. Many that we will never see or know of that are researching day and night for new treatments and procedures to give us all hope. Yes, you got a bad one, but hopefully with time they will find it is less than Gleason 9.

I started saying a new phrase after my diagnosis, "It is what it is" and there is very little I can do about it except, study, read, ask questions, and seek out the best of the best to treat me.

I have learned so many wonderful lessons that can come only from having this experience. I thought I knew what gratitude was before this journey, I now know what GRATITUDE really means. Compassion, empathy and charity have not only blossomed in my heart and soul, but I feel like I have a doctorate degreee in them. I would imagine most of us dealing with this haven't learned many important lessons and are better men becasue of it. Please stay positive, make the resolution to fight this, learn as much as you can, but take the time to step back and enjoy the many treasures of life.

Feel free to email me with questions, I am happy to share my phone number with you to talk anytime. I have enjoyed and benefited from many such calls with HW members that were further down the path with their cancer and they were so gracious and unselfish to share their time and experiences with you.

I have always been one that like to score high on tests so in a sick way, dealing with a nuclear bomb like G9, I try and smile and keep my sense of humor.

You have a lot of life ahead of you. Don't waste a minute of that precious time.

Good luck my friend.

My biopsy (12) showed 6 or 7 cores Gleason 7. Post Op 9/2016 my pathology confirmed Gleason 9, 5+4. I was positive in 3 of my lymph nodes. My prostate was removed. I found a good medical oncologist specializing in PC. I had a bone scan 10/2016 that showed no spread. My medical oncologist said that he supported removing my prostate. He put me on Casodex for 10 days prior to Lupron injections. Starting in January of 2017 I had 39 radiation treatments. In April of 2017 my PSA was zero. I continue both Casodex and Lupron and will do so for two years total before stopping to check progress. The drug therapy raised my blood pressure and caused swelling in my legs. I was in pretty good shape for a 61 year old but have lost muscle in my torso and gained about 10 pounds in 6 months. I'm still in better shape than many, but slipping. I walk 3 miles, 4 times per week to fight the weight gain. The drugs make me fatigued and there are other irritating side effects...mostly impotentcy is the worst...but joint pain is terrible. When I sort through everything in my mind, I feel lucky that it has not spread yet, but cautiously optimistic because I know that there is high risk for spreading.

I was doing independent management consulting and had difficulty working due to constant travel and entertaining during dinners etc., so I temporarily retired. Having done this, I do not recommend stopping work if you have a flexible working situation. I did not. I started out keeping a secret about this from my friends but my care staff at the hospital recommended that I seek and accept support and be open about this fight. It's the closest to depression that I have ever been. I decided to get involved with a fundraising effort for cancer research and just doing that gives me hope and satisfaction.

I also said, "it is what it is" way too often. Now I say, "11,000,000 people in the U.S. have been diagnosed with cancer, 7,000,000 are considered cured. Why not me?" I found this on a plaque at The Cancer Survivor Plaza in Chicago near Maggie Dailey's memorial park. I'm not sure what time frame it covers but I'm not interested in finding out. The point is... we have hope.

Happy Fouth of July weekend. Make it a good one.

I wear compression socks or compression sleeves on my leg every day (not so much edema as varicose veins) and I have a useful tip:

Don't buy compression stockings from medical supply stores. They come in depressing colors and they cost too much. Compression socks and sleeves are sold to marathoners and other sporty types and the products targeting that market are snazzier and less expensive. The best place I have found to shop is Amazon, with honorable mention for Zappos and Walmart. If you want to shop locally you could try Dick's Sporting Goods or similar. If your legs swell more than your feet do then you might consider compression sleeves (also sold to runners and body builders) because they are easier to put on.

Here's a link to one of my favorites on Amazon. They come in red/black and green/black (I have both). Every time I put on the green and black ones I think about Green Lantern comics.

Mojo Sports Recovery Compression Sleeve

In brightest day, in blackest night,
No evil shall escape my sight
Let those who worship evil's might,
Beware my power...Green Lantern's light!