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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: 56
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: 634
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: 241
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: 182
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: 1317
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

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