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gleason score 9

funkyyman
Posts: 4
Joined: Nov 2011

I was diagnosed as of last week,with a gleason of 9 and psa of 34.Has anyone been cured at this level and if not what is the longest someone is surving with similar or even higher numbers?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Funkyman,

I am sorry to learn of your diagnosis. As your doctors probably explained to you last week you have been diagnosed with advanced prostate cancer. The Gleason 9 score is usually an indication of an aggressive cancer. These tend to spread outside the prostate to other organs.

A "cure" in these cases is a relative term. While eliminating all of the cancer is probably impossible it is certainly possible to increase your survival time and disease free intervals.

Typically the urologist will schedule a session with you shortly after diagnosis to review treatment options and address any questions you may have. I would take this session as a starting point in your journey. You will probably want to have sessions with other specialists as well as there is a wide range of professional opinion on treatment of prostate cancer in general and with advanced prostate cancer specifically.

In my lay opinion, I believe that an aggressive treatment approach that would likely involve a combination of different therapies is most effective for treating advanced prostate cancer. This could include a combination of various forms of radiation and hormone therapy.

If the doctors recommend surgery to remove the prostate you will want to be assertive in asking them to explain why. It is highly likely that in Gleason 9 patients that the cancer has already left the prostate. There are indications on your biopsy report that can be strong clues in this regard. If cancer has already spread beyond the prostate, a prostatectomy is not going to stem the spread of cancer in your body and will likely introduce a range of potential adverse side effects that will impact your quality of life.

It is important to quickly educate yourself about prostate cancer and the effect of the various treatment options. In the end, you alone will have to make a treatment decision so it is good to have as much knowledge and opinions from different experts to help you make this important choice.

It would be useful if you could post your age, any other health issues, PSA history, and more details from your biopsy such as whether or not there was perineural invasion, how many cores and at what percent were positive for cancer, the size of your prostate, and so forth.

Many men who have a similar diagnosis have contributed to this forum and will be able to offer advice and this is a good place to start your research as you look back through several pages of threads.

Best of luck to you.

K

funkyyman
Posts: 4
Joined: Nov 2011

I am almost 48.12 out of 12 biopsies were positive.I am a Christian,and am so upset to leave my family behind.Ofcourse I am praying fora miracle!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Funky,

While prayer is a powerful tool I would visit two or three experts in the field of treating advanced prostate cancer to get their perspective about an aggressive approach to dealing with your cancer. You may also wish to consider some dietary changes like cutting way back on your red meat intake and avoiding dairy. If you page back through a few months of posts you will find several interesting threads on the impact of diet on treating prostate cancer.

In any event, even with advanced prostate cancer you have many more years left and even with a serious diagnosis such as you have most men do not die of prostate cancer.

K

funkyyman
Posts: 4
Joined: Nov 2011

I am trying to get in a clinical trial at Duke. Also I am new to CSN how do I find these threads about dietary changes?

SV
Posts: 60
Joined: Sep 2010

Last year I also was diagnosed with a G9 and opted for DaVinci at City of Hope with Dr Kawachi. Post-op biopsy showed it was now a G7 and had not spread. Almost a year and a half later, still pulling zeros, sexually active and never had leakage problem. Find the best surgeon with over a thousand operations and cut that sucker out. Diet and attitude is critical. Now 59 and feeling 29 with daily workouts at the gym.
Keep the faith brother, you are in trouble but your fight is far from over.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

CSN has a horrible search function and unless you already know where something is or who wrote it, it's hard to find any old threads here. Hopefully, someone can post links to some of the old dietary discussions for you.

In the meantime, here's a link to a brochure published by UCSF (where I was treated) regarding Nutrition and PCa: http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf.

Bascially, the recommendation is to "eat well" -- reduce red meat, fat, processed grain/flour/sugar, excess carbs/calories, etc -- and exercise, which is no different than a generally healthy diet but there are a few things in there specific to PCa -- like avoiding calcium and iron supplements -- which you should take note of.

Good luck!

Beau2
Posts: 261
Joined: Sep 2010

Here's a link to a bare bones summary of the 40 page Nutrition and Prostate Cancer Guide from The Prostate Cancer Foundation.

http://malecare.org/treatments/diet-and-prostate-cancer/milken%E2%80%99s-prostate-cancer-diet/

middleagemom
Posts: 5
Joined: Nov 2011

My husband was diagnosed with Gleason 9 (5+4) too in February with ALL parts of the biopsy positive - and it did spread to a lymph node. He's had surgery, chemotherapy, and radiation since. Plus he is on hormone therapy for the next 2 1/2 years. He's a relatively young man and we have children. We are going for the cure too !!! I know no doctor could ever tell us he is cured with such advanced PCa. But so far, so good. He currently has no detectable PSA and we pray that with the extremely aggressive course of action he took (4 kinds of treatment!) he will live a long life.

funkyyman
Posts: 4
Joined: Nov 2011

Good luck to you and your husband! I'm meeting my urologist 8:45 Monday then driving over an hr to 11:30 appt with another Dr for second opinion. Seems like I keep hearing,don't cut if it has spread beyond prostate.I hope I get some clear direction which way to go.If any are Christians out there,I appreciate any prayers!

middleagemom
Posts: 5
Joined: Nov 2011

Tomorrow's a big day for you. Glad to hear you also getting a second opinion.

God bless you!!!

tarhoosier
Posts: 195
Joined: Aug 2006

F-man:
With the numbers you present, you are a very high risk patient. This means that surgery is almost certainly not a curative procedure. Radiation with hormone treatment is the most likely recommendation for patients such as you. Modern radiation is a kind of magic, when done with the most current equipment and techniques and the very best personnel. Your consultation at Duke should give you the best advice available as it is one of the 12 National Cancer Centers of the US in addition to a top hospital/research/treatment location.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

my thoughts and prayers are with you.........good luck

tonahawk899
Posts: 9
Joined: Jul 2011

My prayers and thoughts are with you, I am a gleason 9 survivor, 19 months out, I had the Davinci robotic surgery on May 21, 2010, 19 months out, psa is still less that .1, for that I am grateful everyday of my life, live it to the fullest. I also had 4 months of ADT with Lupron and casodex(Adjuvant Therapy), coupled with 34 sessions of IMRT for a total of 68 gry to the prostatic bed and pelvis, we struck early, I do not look back, love my life, friends, and family everyday, have a lot of faith in God, I have a family doc, Urologist, and Oncologist on my team, and I would not have changed my protocol for a nanosecond, whatever you decide, get with the program immediately and do not waste time, God Bless you and yours, Tony

roryo's picture
roryo
Posts: 2
Joined: Apr 2019

Caught the jump in PSA last March 2018, in that time, because the PSA was aggressive, I had Lupron and Bicalutamide. between July until Nov 2018.  Nov 2 had radical prostatectomy.  Saved nerves and primary sphincter.  Humbling to say the least. Incontinence was recovering well (ED excluded) but cancer raise its head again in January.  Went back on Bicalutamidein March.  Cancer had not metastasized and axiom scans only indicated it was somewhere near where the prostate was but no defined spot. Am in week 4 of 8 weeks of Varian Truebeam therapy.  As I Christian, I have always placed my faith in God.  By faith, I gain trust. And from trust I have no fear of what is to come as I have no control. Only by God’s will. If you’re an Atheist, oh well.  I see nothing but bright days ahead.  It pays to have a GREAT supportive wife who has helped in every aspect of this ugly disease.   Our motto “No Bad Days”, no matter what.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Your mind is "in a good place," roryo.   Attitude and confidence are important elements in anyone's cancer fight.

True Beam is the latest and greatest, and I pray it does the job for you.  Many men live many years even with metastatic disease, and you have reason for hope.

max

 

greenteaguy
Posts: 35
Joined: Feb 2019

Dietary changes certainly won't hurt.  Start here. https://www.youtube.com/watch?v=mffGLuctKoE&t=133s

Also sign up for Google Alerts for these key words, "prostate cancer research" to get the latetest news about prostate cancer research probably before your urologist knows about it.

Also watch the videos of this doctor who has probably forgotten more about prostate cancer than most urologists will ever know.  https://www.youtube.com/watch?v=sKY-Hd8s4nM&t=26s

 

Georges Calvez
Posts: 296
Joined: Sep 2018

Hi there,

I did radiation treatment in France and was advised to eat protein twice a day. Nothing about avoiding red meat, this was advised several times a week to avoid iron deficency. I was advised to avoid unpasturised cheese but I could eat as much pasturised dairy products as I liked. Vitamin supplements if I liked but not too much fruit as it could lead to diarrhoea.
No cabbage, brussels sprouts, etc as it can lead to intestinal gas which is not good.
Bladder full and rectum as empty as possible when I arrived for the radiation sessions.
Maybe this all makes a few percentage points one way or another on the results of the treatment but I doubt it is game changing stuff and one centre has a different play list to another.
There is evidence to show that some cancers react more favourably to radiation than others eg the cells divide more slowly and die more quickly so the tumour is eliminated while other cancers are more resistant and I suspect that this and other factors are more important than diet.
That said you have to give yourself the best chance that you can.

Best wishes,

Georges

Georges Calvez
Posts: 296
Joined: Sep 2018

Hi there,

I pulled a PSA of 130+ and a Gleason 7 ( 4+3 ) on diagnosis but my scans were clear.
I am very lucky, my doctors thought I would have metastases everywhere at the beginning and 98% of men with my profile do.
I had a radical prostatectomy with no nerve sparing followed by radiation and I am still on 18 months of Firmagon but my PSA has been below the limits of detection for over nine months, twelve months at the end of June, I will get off the bus at the end of October when my September injection falls below the half life.
All sorts of things could happen after that.
I am a laïcard which is an extreme form of atheist tending to intolerance of clergy and religion, particular to France.
Throw the dice , the game and life are afoot!

Best wishes,

Georges

greenteaguy
Posts: 35
Joined: Feb 2019

Please keep us posted Gerorge and best wishes.

Georges Calvez
Posts: 296
Joined: Sep 2018

Thanks,

I document my story here.
https://csn.cancer.org/node/318066
I am an unusual case insofar as I had a high PSA but a very localised cancer.
One of the things that I am considering is having the tumour examined genetically.
This assumes that they have retained some material!

Best wishes,

Georges

lighterwood67's picture
lighterwood67
Posts: 209
Joined: Feb 2018

Georges and Max,

 

All I can say is.  There is more to us than just us.  Look around.  Ok, back to the task at hand.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Yes, lighter, back to our allowed task.  Otherwise, like a few other posts that USED to be included above, it will be lost, like CSNs three months' worth of data recently.

max

Georges Calvez
Posts: 296
Joined: Sep 2018

Hi there,

I just offered it as an explanation for why I do not pray for other board members and why I do not want to be prayed for either.
Fifteenth Firmagon injection today if one counts the first double injection as a single treatment, only four left if I decide to stop in September, I have options to continue for two or three years!
Blood pressure 146/87 which is normal for me at this time in the morning on this stuff, it will fall during the day.
I have premedicated myself with a couple of ibuprofen to help cut down the local pain.

Best wishes,

Georges

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