I have made it almost 5 Years with Gleason 9, I hope you do to.

I want to offer hope to those with Gleason 8/9 and 10 by sharing that I was given five years at the time of dx. In a matter of months, I will be at the five year mark and hopefully will still be non-detectable as I currently am.

I express appreciation to all my doctors, nurses, researchers, pharmaceutical companies and to my loved ones for getting me to this point. I also give major credit to my faith.

I haven't posted in a long time but talking with my dear friend Appleseed (who is another G9) we thought it would be a good idea to let others with high grade PCa that have been recently diagnosed or who are in the early stages that there is hope (when the clouds are as dark and gloomy as they can be) when you first hear of your extremely unfortunate high grade PCa.

Best wishes to all of us that are fighting this hideous disease.

Congrats Devasted1...you were and are an inspiration to many including me over the years. Awesome. Here's to the next 5 and then the next....

Sierra---I, and others, can relate to the 2 emotions...I eventually got to the point of mainly this emotion: If I was going down, I was going down swinging. So, chose to be treated by a reputable medical oncologist and throw anything and everything at it.

And in the last five years we've seen several new drugs and therapies for PC...some with significant survival benefits...hopefully the next 5 will give us even more....in the ultimate win beyond a cure ---to make this a chronic disease so we buy huge chunks of time to where it won't matter...

Devastated,
Thank you. I am hitting the invisible "like" button with a smile on my face.
Please keep posting, this is exactly the kind of post that I search for. Sierra, Jerry & Ed, i echo your comments. And Appleseed, I am glad that you are able to be there for Devastated.

I am reluctant to post good news but decide to share sometimes in the same spirit as above. We need good news. It reinforces why we go through the daily struggle against side effects, the emotions, the aches & pains...

Thanks again! Here's to the next 5 years!

Bryan

Always great to hear success stories from fellow G9-ers.

Though my diagnosis was downgraded from Oligometastatic to bone with no lymph node involvement to just the opposite (gross error by local imaging firm in small town in FL), still locally advanced PCa but no bone mets just 3 micro Lymph nodes contained in pelvic area (per Dr Fabio Almeida at AZ Molecular Imaging F18/C11 and confirmed by imaging team at UCSF), a rescoring by Johns Hopkins showed that my original biopsy of G9 remains G9.

So looking into various radiation treatments and locations to radiate the prostate, the prostate bed and the pelvic girdle (not just the 3 micro LN's) with curative intent.

Congrats and looking forward to another successful report each succeeding year.

LupronJim

I am also a G9 and as you can see below I was PSA <0.09 until March of this year after two years post surgery. I am going to UCSF and am about to start SRT in a week or two. For now, the radiation oncologist does not want to start ADT but radiate the prostate bed.

Wish all of you the best and thank you Devastated for your post and congrats on your 5 year mark

Jerry A

Congrats,
I love positive posts... Gives me hope on days I need it!

Devastated ...

You and my HW brothers gave me early hope that this is treatable for a long time ... I've been through a lot as a G9, just put in my two year anniversary. It's posts like yours that helped get me this far.

Blessings,

Ray

Devastated1, that is wonderful news and very encouraging. Thank you so much for posting that upbeat message! If it's not too much trouble, that would be great to also enter on our Gleason 9 Crew thread for those finding it through web searches.

This is the link to that thread: www.healingwell.com/community/default.aspx?f=35&m=2863652

sierraluvr said...
Thank you for sharing. I don't know about anybody else but there are two parts to this disease for me. One part says, I am going to be the exception and although my cancer is gleason 9, I am going to beat it by doing everything right. Then the other side of me says that it's only a matter of time before it can no longer be managed. But who knows really, what that time is. I sincerely hope that I will last at least another five years.

sierraluvr, you hit the nail on the head there; I haven't been able to get your comments out of my head all day. That is exactly my dilemma too. Right now I have a really good response to the treatments, and maybe we beat it by catching it in the nick of time. However, my G9 T3a initial diagnosis is very high risk, so it haunts me as to how well we squelched it. We found no mets at diagnosis a over a year ago, so am not so far down the road as many here. But the risk lurks forever in the back of my mind, murmuring at me in quiet moments. Will PSA rise before the end of 3 years of ADT? After? Ever? It just lurks there in those dark mental recesses with its red eyes glowing at me...

Great to hear the wonderful progress. For most of us management is the key and thankfully the options for effective management are greatly expanded in just the last three years. Unfortunately a few will get hit with disease that just isn't treatable, but thankfully many of us are thriving with PCa that was untreatable just a few years ago.

I had a dear friend that had deadly G9 (low PSA producing) prostate cancer that had spread beyond the prostate before diagnosis. He first had surgery, then had hormone therapy followed by adjunct radiation. His initial urologist "friend" told him he had about a year to live.

He worked as a CEO of a business and as a volunteer community leader for almost nine years. He survived ten years.

He was a researcher and would seek opinions at MSKCC, Duke, etc. He was also in a trial of Provenge early on at MSKCC.

Devasted1,
I am at the 2 1/2 year point and I feel great! My situation is that my PSA has been gradually climbing and I go to see the medical oncologist next week to find out where the next branch in the road leads. The med onc says his goal is to have something other than PCA kill me. To hear your story gives me hope that his prognosis is correct.

..Devasted1, what a great post filled with inspiration, hope and with a love for life. Thank you for mentioning our very special phone conversations over the last year or so. Having made a friend like you has proved instrumental in my well-being. Congratulations on the 5+ years, you deserve the very best that this life has to offer. I will keep fighting my prostate cancer battles. Let us just keep living this life the best we can, loving our God, family, country, friends, hobbies & work..

....Strength & Honor, Appleseeed.........

I too am a G9 (4+5) going on 3 years this month (DX 8-11). With great doctors and a loving family I am going strong.

Congrats devastated (keep on trucking)