Newly diagnosed prostate ca gleason 9 no mets /fox chase

Hello and welcome, you'll get a bunch of support and information here. Yes there plenty of success stories here. Can you post some more details about your husband? PSA, biopsy results and so on?

We have lots of members who are doing fine after treatment for Gleason 9 disease. I am one of them. We have a long-running discussion thread where Gleason 9 men and caregivers can share their stories.

here: The Gleason 9 Crew - Welcome and how ya doin'?
and here: The Gleason 9 Crew -- Part 2, continued. <= You can comment here.

You might add a comment to the continuaton thread so your husband can be added to our long list of men with aggressive disease, most of whom seem to do well after treatment.

If you have a copy of your husband's biopsy report we can help you understand some of the jargon if you like. It would also help us to know your husband's PSA history.

Welcome to HW.

We have lots of stories of people with G9 living very long times. If there are no mets, there is every possibility of a cure. Even with mets, there are a lot of treatments and we have folks here who've gone years keeping the beast at bay.

Andrew

StevenH said...

One suggestion: when I was diagnosed I started a three-ring binder with hard copies of every lab report, every scan, MRI, etc. I also keep an Excel spread sheet of every PSA test for which my wife draws my blood every quarter, on the dot. Those records will be invaluable down the road. I recently had a consult to discuss a possible recurrence and I was able to PDF all those records to the oncologist instantly. No guessing what my PSA was 15 years ago, it was all on paper.

I do pretty much the same thing, but I use a free account at dropbox.com with all my pdf records organized into a folder. Even copies of the CD/DVD's from MRI's and CT's are stored there. Then a link can be emailed to a doctor giving him immediate access to my medical history. He can also view the imaging online instead of waiting for a postal mailed CD to arrive. So far the doctors seem to appreciate this method.

hi , and welcome. Sorry you need to be here. MY husband was diagnosed with G 9 last september. He also was treated with RP at Fox chase. 40% of his prostate was cancerous. I worry that his treatment was not aggressive enough, but I think his surgeon Dr Viterbo did a good job on the surgery. Unfortunately he had positive margins, and has recently finished 7 weeks of SRT. Doctors told him he could have decades more of life.

I know its scary and overwhelming. This is a good place to post questions, we've all been there and there's some smart people here with helpful answers.

Hang in there. Sophie

I'm sorry for your husband's diagnosis, but on the bright side- at Gleason 9 with no mets, he still has a chance for a curative approach to treatment! There are many success stories with worse initial stats on this board and folks here are a great source of support.

My husband was diagnosed about 2.5 months ago with Gleason 9 and one met to bone, and as you're probably experiencing now, the first few weeks it will just feel like the world has ended. However, we bottomed out after that and picked ourselves up the floor and are now focused on fighting this disease. You will too. My husband is still symptomless after starting hormone therapy, for which we are thankful, so we enjoy each day as much as is possible.

As others have mentioned, arming yourself with as much info as is possible helps in discussions with the doctors. I also keep all my husband's medical records in digital versions on Google Drive (which i like because it's easy to save and attach files directly from my gmail account), it also helps to start now keeping records of key stats like PSA readings, ALP etc especially if you have to see multiple doctors (for 2nd,3rd, 4th opinions) and have to bring each up to speed on your husband's case history.

Hi When!

No longevity here yet but just some more fellow feeling. My husband is also G9 and Fox Chase - see sig. We're almost a year out from Dx and aside from HT side effects and massive number of dr appointments, life has gone on pretty much as usual. (Though of course not at all from an internal point of view.) I'm trying to convince my husband to reduce his work hours.

Psa 17

Also other glands (adrenals??) make some testosterone.

I guess the whole male / female thing matters re: castration. Even though the hormones chemically do same thing. He was shocked when I mentioned it. Which surprized me. Already getting prostate out. I guess that's the part of him I dont really know. Finding alot of unknown parts latley. I know all drugs have side effects. In my mind castration is closer to a natural solution. But of course adrenals...I guess from thursday on each morsel of knowlege from pathology report will be shaking us to the core. Even with the knowlege that PSA went to 17 still shocking.
We live longer than our ancesters but I think we need to dump the reproductive organs as soon as we are done with them...before they wreak havoc in old age.
?...just thinking.

My husband wanted the surgery. I'm not sure if he is capable of understanding hormone therapy at this point. Scares me to think of "cutting" into cancer. The robotic surgery cuts the prostrate then it is put into a bag and pulled through an opening made above umbilicus. Hoping the mesh from his umbilical repair doesn't get in the way.Surgeon says no..We are going to the beach today maybe overnight He loves the ocean. Seems like we are moving fast but started in march 2015. Elevated PSA then went to Foxchase because they use the ultrasound and MRI guided biopsy transrectal app"Fusion biopsy"
A rectal coil is used with the MRI portion of the study. That study came back probable cancer in transitional zone which is tusually not discovered from what I have been told/ read. That is why the seminal ducts will be removed as well. The urethra rectum and bladder are in the transitional zone and with the prostate being so large, the worry is that the proton beam may damage the other structures or not be as effective due to the large size ...60 gms. And in the meantime damage surrounding structures. I guess after the prostate is in the pathology lab to find out. I have read that the transition zone is the area that grows throughout life and is responsible for bph. 10 to 20 % of cancers origonate in this zone I have also read that BPH does not increase the risk of cancer, but can lead to obstruction patterns in urine flow. That being said I think that having the urine flow will be more comfortable for him in the long run..and immediate post op period but stopping the urine flow after catheter removal remains to be seen. Will have to budget incontinence supplies as they are insanley expensive.
We should start a buyers club for that..buying retail vs. Bulk. Occupying my mind with pratical things and hoping that he realizes that I love his being. His essence and his character not the flaw prone human body that we all inhabit.i love his heart. He has influenced my life in suchna positive way that I will not let stupid cancer rob one more minute from mind with fear. Right now. Right now is all we really ever have. My memories and experience with my husband revolve around the way he transforms a normal interaction at wawa into a smile. I watch in amazement and have learned so much from him. I will be mad at the universe if he is taken from me. But noone nothing can take away the beauty that I see through his eyes. Of course the tears are streaming down my face. I have to release this emotion and fear so I can get on with our day. I love him beyond the physical aspect of myself..but that is exactly why I will not let cancer ruin one minute of our bautiful day.
Ps we still have to look both ways before crossing the Street.

Whentheworldstops,
I am 4.5 years post surgery, still working full time, feeling good and enjoying life with my family. See my stats below. There are some very effective treatments out there for advanced PC. Life is altered by PCa for sure but please know that your husband can have many years left. The drug I am currently on, Zytiga, was not even approved for use in the US when I was diagnosed. I commend you for setting up an account here and checking in with us.