Newly diagnosed

My dear uncle, 67, just got dx'd with PC, gleason 9. PSA jumped from 3.0 to 47.0 in one year.  Going for scan next week for staging.  Anyone have any light to shed on this?  We are all very concerned.

Thank you for your warm welcome and encouragement, living1963. Wow, you are a trooper! 78 months w stage 4--I applaud your strength!!! Keep up the fight!

Vyo yeah I am a trooper. I should change my name to scooter cuz like a poodle with worms I keep scootin along.

Post Edited (living1963) : 10/25/2012 6:55:14 AM (GMT-6)

Welcome to HealingWell. I think you'll find that it's a great source of information and support.

You got some pretty good information already, even if it sounds contradictory. Gleason 9 is indeed serious business, but it's also true that there are guys who are managing Gleason 9 cancers effectively.

I'll second the advice to step back and take a deep breath. One day at a time and all that. There are some good treatments out there for advanced prostate cancer, and they're getting better all the time. Hang in there.

Best,

Jonathan

Thanks everyone. My uncle went for his bone scan and he has mets in his bones but it is "not a lot"(?) He also has three lymph nodes showing that are "inconclusive", whatever that means. Good news (?) is that it is not in his stomach/pelvis(!)

My aunt spoke to the doctor who said he has 5-6 years. Don't doctors usually give the most optimistic range? If that is so, then I'm very, very worried.

He goes for his first hormone injection on Monday. I bought him a nice expensive bottle of wine to take his mind off things LOL

vyo:

You've come to the right place ... this group has helped me immensely on my journey.

From one of the G9 guys, it's my opinion that getting the best advice from those who see and deal with a lot of G9/high risk cancer is warranted. There is a real difference between those guys and a typical doctor. I could go into details, but it's probably too much sharing.

Enough to say that seeing one of the top docs gave a lot more clarity on the situation. Some of the top independents are Snuffy Myers and Scholz/Lam. Even as a consulting doc, they can improve the quality of care your uncle is getting. There are the top cancer centers also: MD Anderson, Mayo, etc.

There's a real difference in care -- make no mistake there. And it's best to investigate that early.

Personally, I get care at a 'top 20' cancer center AND keep them on their toes by consulting with another cancer center and a top independent.

Bless you all ...

Ray

PS ignore the number of years; there's a large variation and lots of ways to beat this beast.

Vyo,

My Dad has been battling Stage IV, Mets Cancer (G9), 12 of 12 cores, since the end of 2010. DaVinci surgery failed right away and Lupron only kept the PSA at bay for 18 months. He's getting ready to start Zytiga.

My sister in law is a doctor and she told me it really isn't fair for doctor's to "estimate" the lifespan of cancer patients. It's hard to ignore the number they give but thankfully my Dad's doctor has never given us a number. Instead she tells us the number of expected months each treatment is likely to work *when we ask* and always gives us hope of further treatments. She is positive, upbeat and very realistic.

We may be fortunate as his oncologist only specializes in Prostate Cancer at a major Cancer Center. She's supposed to be one of the best and is the head of the department there. I think experience of a doctor sometimes curves their bedside manner.

Doctor's are not God and they cannot predict how much time your uncle has so just keep praying that the treatment will keep his cancer from progressing.

I have been in the battle for the past 45 months with a G9 cancer wth SV and pos margins. My PSA is currently <0.01 and I have been on ADT vacation for the past 4 months. The best advice has already been give to you and that is to see a specialist in the PC world. I see Dr. Lam in Marina Del Rey. These guys have seen the worst cases and think out of the box. Keep a positive attitude. Even us G9 guys can beat this.

FIGHT ON

Hi,

As the others have said, do not put too much worry & thought into the doctor's estimation of 5-6 years. With today's constantly developing treatments, his future may be might brighter than this. The doctor was also probably just rattling off plain statistics, which are not tied to any individual case.

This means that he could be well above the average and have many, many good years remaining.

This doctor doesn't sound like s/he has a lot of tact.

Wishing your uncle the very best!

Chuck

July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6. CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
mid posterior prostate. Right posterior apex margin involved by tumor over a 0.2 cm length,
doctor says this is insignificant.
Prostate 98 grams, tumor 2 grams.
Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
Post-op exams 2/13/12, 9/10/12 PSA <0.1
Only semi-erections so far, with continued improvement.