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New diagnosis stage 4 metastasized prostate cancer

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Posted 6/14/2015 3:08 AM (GMT 0)
My Dad was just diagnosed with stage 4 metastasized prostate cancer. Psa 28 Gleason score 8. Anybody out there surviving with numbers this bad? He is 63 with good overall health. Such devastating news!!
Posted 6/14/2015 3:29 AM (GMT 0)
Not a good hand he was dealt for sure, but take a look at this thread of the Gleason 9 crew for encouragement

www.healingwell.com/community/default.aspx?f=35&m=2863652&p=5

The thread got so long it was continued on another thread when it exceeded forum capacity.
Posted 6/14/2015 4:26 AM (GMT 0)
JD ..

It's high risk disease and needs to be treated aggressively; with that, there's plenty of hope. And many of us have survived with worse numbers. As Jim (Nomar) points out the G9 crew is one place to look for our histories and ideas.

Read the newly diagnosed sticky post at the top and yell if other questions ... Snuffy Myers' book is another good place to see what's possible (though some of it is out of date). It's what picked me up off of the floor.

Peace,

Ray
Posted 6/14/2015 4:33 AM (GMT 0)
JD.
Here I am , diagnosed with Gl 7, stage 4, metastasized to bones in 4 places. PSA was 71 back on Nov 2012, so my cancer probably started a few years before that. I am currently in remission thanks to Zytiga and my everlasting faith that He is my great physician. There are many new drugs and developing ways to combine treatments. I am fortunate to have no bone pains or side effects of the drugs.And I plan on being around for many many years to come!Though I might not get to the promised land of 70 Yrs old,I will take every day one at a time. My advice, Keep the faith! Dan in so cal
Posted 6/14/2015 4:59 AM (GMT 0)
JD.
Sorry to hear about your father but there are many of us who are surviving with similar and worse statistics. Make sure you get the best medical team available in your area because that is going to make a difference. Keep us posted and let us know how we can be helpful.

Aloha
Posted 6/14/2015 5:33 AM (GMT 0)
Its not as bad as you might think, Jd 28 psa is not that high, tho admittedly some pca emits little pca.Gleson 8 is better than 9 0r 10. He is 63 and healthy,... would you say even fit? Get ye to a good medical center gather a good medical team… the center will know what he needs. What he does not need at this point is his GP or urologist,lessen the urologist is a urological oncologist. I personally do not see this as an imminent death threat and I,m confident, this is echoed by others on the forum. With the proper treatment he should have many years….many….
Posted 6/14/2015 6:20 AM (GMT 0)
JD,
YES. Many out there with G8 and 9 that are beating the odds and have good QOL. My husband had much worse dx and with on going tx has survived 4and half years and not giving up yet! Get educated and a good team and your Dad will be around for a good long time.
Gary n Beth
Posted 6/14/2015 7:17 AM (GMT 0)
JD
It's great to hear your father is in good health otherwise. Lots of options for treatment even with advanced metastatic disease. Mine was raging through my pubic bones and into my legs, sternum, lungs and shoulder. Aggressive treatment has resulted in aggressive response. I'm still in my 40's and have hope for many more years.
Search for the histories of some of the Gleason 9 guys and you'll see remarkable results that go along with the trials and tribulations of finding a new normal. Lots of life yet to be enjoyed!
Take care
Posted 6/14/2015 8:21 AM (GMT 0)
Hi Jd
Welcome to the HW forum,
Yes there are G8 or 9, 10 members here,
Perhaps you could include your Dad biopsy report on your signature for advices from the experience members here.
Posted 6/14/2015 10:24 AM (GMT 0)
JD, welcome! There are many (too many) of us here with Mets and high Gleason scores. You'll find support and a place to vent here and feel free to let lose. I'm a G9 with mets and am in remission, so it's not an automatic death sentence at all! Do your research, ask questions here and come up with a treatment plan.

Cheers, Doug
Posted 6/14/2015 12:31 PM (GMT 0)
Hi JD,
It's a scary diagnosis and once you begin to learn what the numbers mean, it can be even more scary. There are many treatments available and new ones are coming up on the horizon so your dad has plenty to be hopeful for. Give him lots of support and be there for him. That's what he needs most from you.
Posted 6/14/2015 1:38 PM (GMT 0)
Sorry about your dad JD.
Posted 6/14/2015 1:55 PM (GMT 0)
There is plenty of hope. There are a lot of treatments, and while the side effects aren't fun, you're dad has every hope of living for many, many years. We have members here who've had worse numbers and are still going, 5+ years.

Andrew
Posted 6/14/2015 4:51 PM (GMT 0)
Thank you for all your responses, this is helping! We live in Southern California where is the best medical team for this! We are willing to travel.
Posted 6/14/2015 6:18 PM (GMT 0)
JD, Sorry to hear about your dad.
I am in NY, when i was diagnosed, and in the decision process on primary treatment, i did a phone consult with Dr Mark Scholz, the name of the practice is Prostate Oncology. They are in Marina Del Rey, so near you, and they have a fine reputation. A number of members here use them, as their Medical Oncologist (which is what they are, specializing only in PC), and speak highly of them all, not only Dr Scholz, but Drs Lam and Turner.

Worth giving them a call, it seems with Stage 4 and mets, you probably want an MO, not just a urologist.
Posted 6/14/2015 6:22 PM (GMT 0)
The Gippers medical center at UCLA is topnotch I hear.
Posted 6/14/2015 9:21 PM (GMT 0)
i am a stage 4 with a high psa. my psa at dx was 96 gleason 8,scans showed mets on my left hip.i started trelstar shortly thereafter and my psa went to a low of 2.36.its now at 6.01 and i am being considered for a clinical trial of enzulatamide and abiraterone.i will know for sure in the coming week.the trial has 2 arms,one will get 1 of the drugs,the other will get both of them.the doctor in charge said it was randomly picked by computer.
Posted 6/15/2015 2:33 PM (GMT 0)
JD,

I am a Gleason 9, my PSA prior to surgery was 20.6.
That was 18 months ago.
Am on Lupron and I am just finishing up RT this week.
MY PSA is undetectable.

I am doing fine.

Your father will do great!
Posted 6/15/2015 6:33 PM (GMT 0)
G9, Stage 4, bone mets and I am still here, working full time, enjoying grandkids. Please know that there are some very effective treatments out there. You came to the right place by the way. You will get some really good support and advice here.
Posted 6/15/2015 8:30 PM (GMT 0)
My dad is being treated by an oncology urologist at UCLA. He just scheduled a second opinion at the Mayo clinic in Phoenix. I think I'm driving him crazy!!! This site gives me hope!
Posted 6/15/2015 8:47 PM (GMT 0)
JD:

I'd recommend that he gets his second opinion down the street at Prostate Oncology / Marina del Rey ... they can think outside the box a bit more than the big players. It was THE turning point for my disease, changed my whole idea of what was possible ... and they're well connected with other cancer centers so they can make sure he gets the best.

Ray
Posted 6/16/2015 6:11 PM (GMT 0)
How do you feel after first hormone shot?
Posted 6/16/2015 9:49 PM (GMT 0)
JD,

We "second" what SteelGuy says about Prostate Oncology Specialists.

Also, Jim felt sore in the arse for 3- 4 days. The side effects snuck up slowly, probably month 4.


wampuscats, Jim and Marie

(btw, you're a good son)
Posted 6/16/2015 11:52 PM (GMT 0)
I'm listening to you guys! I got my Dad to make an appointment at the Prostate oncology in Marina Del Ray. Any other ideas?
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