Hope?

[Dennis Foggy]

I just received word from my Urologist that I have prostate cancer with a Gleason score of 9!
My PSA progressed from normal to 6.8 and then dropped to a 5.7 on the latest test. I am scheduled for both a pelvic CT scan and Bone scan this Friday and di vinci surgery to remove the prostate on September 14th. I have been trying to gather more information over the internet and , unfortunately, everything I read is gloom and doom for us high risk 9-10 Gleason guys. Is there any positive news that would offer a guy any real hope??

Dennis

[E. Michael D. ("Mike") Scott]

Dear Dennis:

A Gleason score of 9 is not good (compared to a Gleason score of 6) but it is not the end of the world either.

Men who's cancers are caught early, even with a Gleason score of 9, are regularly treated with curative intent and have either no recurrence of their disease or no recurrence for many years.

The fact that your PSA went down from 6.8 to 5.7 may also indicate that there is more going on here than just prostate cancer, because if you had a really aggressive Gleason 9 cancer, ity would be very unlikely that your PSA would drop like that from one PSA test to the next.

If I was wearing your shoes I would want to be sure that whoever operated on me was highly experienced. Don't just let anyone with access to a daVinci system do this procedure. You want someone who does hundreds of these operations a year. It will significantly increase your probability of a good outcome and reduce your risk for complications. Successful surgery has almost nothing to do with the technology used and everything to do with the skill, experience, and focus of the surgeon.

[Dennis Foggy]

Thanks Mike! This is the first optimistic information I have read in hours of combing the internet. It would be informative to find a significant study that shows the survivability rates for the different Gleason scores for people with my numbers. I know the J.H. scale, but I lack the “stage” information and other details to reach a “comfortable” answer. On a personal note to calm my anger, I had to switch primary care doctors within the same Group of physicians. My old physician routinely included the PSA at least annually in my blood work. Another agency ( the VA ) noted the elevated PSA on their test and when I went back to my primary care facility to check my latest score, I discovered that they had not done a PSA in any of my blood work since 2006. How ticked off should I be at my primary care provider???

[Rabbi Ed]

Hi, Dennis,

I was sorry to hear your bad news about your elevated Gleason score. But as a two-year RALRP survivor, I can tell you my recovery following a Gleason 6, was quick and easy, as it is for most robotic surgery patients. (See my book, Conquer Prostate Cancer, for more details.) My quarterly and now 6 month PSA test numbers remain virtually undetectable too. The advantage of prostate surgical removal is the capacity to put the durn prostate under the microscope (often sent to Johns Hopkins pathology lab), to check if your prostate margins are positive or clear. If clear, then your prognosis for avoiding recurrence could be pretty good. I will pray accordingly!

[Arnon Krongrad, MD]

Dennis,

I am sorry to hear the diagnosis and of your seemingly depressed mood. How are you functioning? sleeping? eating?

You raise two issues: the clinical course of Gleason 9 prostate cancer and coping with Gleason 9 prostate cancer. They are separate subjects and for the second I'd refer you to the Faith and Healing and/or Coping groups.

As to your question, let me direct you to Peter Gannon, for whose Gleason 10 prostate cancer I did an LRP in 2003. There are many like him.

There is always hope.

Arnon

[Steve J]

As has been said, a Gleason 9 diagnosis is not a death sentence.

It would be interesting to know whether it's a 5+4 or 4+5. There is an essential difference, as the second number could be as much as 49% of the total. And Gleason measures aggressiveness.

I'd also recommend compiling a clinical record using other tests. Stephen B. Strum, MD, a med onc specializing in PCa, has written:

"Patients with high Gleason score prostate cancer often do not secrete
very much PSA, and often their tumors make other biologic products such as
CGA (chromogranin A), NSE (neuron specific enolase), CEA (carcino-embryonic antigen) and PAP (prostatic acid phosphatase). Before any treatment is initiated it is important to obtain baseline values of these markers so that if any are abnormally elevated they can be used as parameters of successful treatment."

These are blood tests.

More information is to be found on the encyclopedic website of the Prostate Cancer Research Institute (PCRI) at http://prostate-cancer.org/index.html

Regrettably, there is a chance that the disease is systemic, which is not the same as metastatic. If so, it requires systemic treatment. This is handled by a medical oncologist, preferably one who is well-trained in treatment of PCa or at least (like my med onc) works closely with such an expert.

FWIW, I was initially diagnosed with extensive Gleason 4+5=9 PCa six years ago. Here I stand.

[Richard Mallory]

Dennis

A Gleason Score of 9, or even 10 as I was, is not a sudden death sentence, there is lots of hope.

Stay positive, study and learn the options that you have and go for it.

Rich
www.gleasonscore10.com

[David Lester]

Hi Dennis, As a long time friend (who was recovering from rad seeds) said, Welcome to the club. I am the third generation on my dad's side of the family to get it. My original diagnosis was 4plus4 and post op 4plus5. My da Vinci surgery was 9 weeks ago tomorrow they didn't get it all so I started hormone treatments three weeks ago. I went on a very strict diet with lots of vegetable juice, no sugar and hardly any red meat before the surgery. Lost 15 pounds I should have lost years ago, dropped my blood sugar from 130's to 90's my blood pressure from 140/78 (with meds) to 98/65. I was walking around the neighborhood 5 days after surgery, went hiking at Mt Rainier 5 weeks after, and go to the gym every other day. Use the cancer to motivate yourself to get in the best physical shape possible. Assume you are going to live at least another 10 years and figure out what you can do to make a positive contribution with them. A very good friend had my identical diagnosis 10 years ago, runs half marathons and just got back from a 10 day bike trip from Pittsburg to DC. If you listen to the gloom and doom types you are a dead man walking. Good luck, Dave Lester

[Jean-Jacques MERMOD]

Dear Dennis
I was diagnosed Gleason 9, 7 years ago.
After the operation, ADT and 2 rounds of radioptherapy I just had a great summer without any symptoms.

So keep hoping .... we never know when things will turn bad but have the choice to enjoy every day we get

warmly
Jean-Jacques

[Reed Anderson]

Dennis --
I was diagnosed last March with aggressive PC with Gleason 8 or 9 and PSA at 12 or 13; prostate was huge which led my urologist to prescribe a Lupron injection to reduce the size of the gland and inhibit further growth of cancer cells. Scans showed no evidence of cancer elsewhere in my body. Now, here's the hopeful part! My first urologist (a surgeon) wanted to wait a couple of months until the Lupron made the prostate more appropriately sized for surgical extraction and (we hoped) stopped the growth of the PC cells. I wanted another opinion so I got started at Mayo in AZ. The guys at Mayo Clinic, Scottsdale AZ, agreed with the decision to do the Lupron, but they were eager to get the prostate out of there asap.I couldn't have agreed more with that approach, so I had surgery June 1 2009 (DaVinci) and my first 3-month post-surgery lab work showed no detectable PSA reading.
I'm still feeling the effects of the Lupron (not pleasant but bearable) and have recovered easily from the surgery.
I feel as though by getting the surgery (there was virtually no choice given the aggressiveness of the PC) I've done all I can for now and am interested in learning more about diet, supplements and life-style practices that will improve my chances of keeping this PC from recurring. Before I was diagnosed I fit NONE of the usual categories of men likely to get PC, EXcept that my dad had it at about the same age as I am. So in my case, genetics seems to have trumped life style, but I am convinced that the more i can be involved in staying healthy and fit, the better I will feel about my chances for the future both near and long-term. Please try to understand that your emotions and your mind and outlook are all integral with your overall health. I think that there can be nothing better than your own active involvement in your recovery and maintenance of a healthy and fit life.
Good luck with it and keep your doubts and fears at bay by being active -- hopefully, that will enhance your mood and your outlook, and that will in turn enhance your healthy future. What else can we do??
--Reed

[Eleanor Rigby]

Reed,
I'm curious what was your tumor grade?

You said that by getting the surgery ("there was virtually no choice given the aggressiveness of the cancer"). Wasn't radiation and hormone therapy an option? My husband has Gleason 9, T2b and when we went to Hopkins they said they would not recommend surgery as an option. He also has a very large prostate (80gm)with cancer on 80% of one lobe. Also palpable during a DRE. From what I've heard Hopkins doesn't like to do surgery with high risk prostate cancer but the original urologist said the same thing along with another surgeon my husband saw that wasn't with Hopkins.

I'd like to understand why surgery would be better than radiation? I understand that it removes the prostate and thus the cancer but won't radiation do the same thing as far as killing the cancer goes? Other than the fact that if the cancer recurs it usually recurs in the prostate and thus removing it eliminates that as a possibility are there other advantages.

Hopkins is recommending wide range IG IMRT, i.e. prostate, pelvic and lymph nodes so I think they believe there's a likelihood it's outside the prostate. The bone scan and CT didn't show anything but I'm of the understanding that the cancer would have to be the size of a pea to be seen on either of these. I'm not sure removing the prostate and then doing radiation (which my guess is it would be required after they removed the prostate if they found it had spread) would be a better option than just the radiation.

I felt like we had finally made a decision to move forward with but the more I read the more confused I get.

If someone can help me better understand this I'd really appreciate it.

Thanks.

[John Farrow]

Eleanor, I was diagnosed with inoperable Prostate Cancer in May 2002, I was diagnosed with Advanced Prostate in 2007 and was subscribed Cosidex. Just recently my PSA has started ro rise again and I was informed that I was recieving the maximum amount of medication, My oncologist suggested that I take part in a trail for a new drug, Abiraterone Acetate plus Prednisone. To take part in this trail I was required to have an echo of the heart, a cat scan, a bone scan and a MRI scan. I couldnt have the MRI for a couple of days after the other scans, so the results for them were available earlier. When the scans were checked by the radioligist, they showed that my cancer had not spread, therefore I was not eligable to take part in the trail and I was in good health, 2 days later the results of my MRI were examend and they showed that the cancer had spread into a pelvic lymph node 2.5cm in size. my advise to you is have a MRI of the pelvic and abdomin, just in case, as in my case, the cat and bone scans have not picked up any cancer that was outside the prostate. therefore in your husbands case they may not remove all the cancer. My Gleeson was 4+4=8, in most cases a score of 8 or over indicates an agessive cancer that has broken out of the capsule.
I wish to point out that I am a layman not a medical person. I just want you made aware that it is possible for tha cat and bone scans, to miss cancer outside the prostate. Even radiation of the area of the prostate would not target the cancer that has travelled to another part of the body, in my case the pelvis. I am now eligible to take place in the trail, which I will start in 2 weeks. I hope that I have not given you a reason to worry, but thought that you should be aware of what happened to me. I wish your husband and you all the very best in your fight against Prostate Cancer. God Bless you both.

[E. Michael D. ("Mike") Scott]

Dear Eleanor:

I understand you confusion. The problem is that the treatment of prostate cancer is based more on the opinions of individual physicians and the desires of the individual patients than it is on logic and well-established clinical evidence. In part this is because of the impossibility of conducting certain types of comparative trial because the majority of patients simply aren't willing to be "randomized" to treatment X as opposed to treatment Y. Also in part it is because (as you have seen) different surgeons have very different opinions about who can and should be operated on.

Bone scans and CT scans can not (usually) show very small foci of cancer in the lower abdomen. It is sometimes possible to see small foci with certain types of MRI scan, but even that isn't certain, and very, very small foci aren't visible using any currently available imaging techniques.

At the end of the day the really critical issue is the skill of the treating physician and the trust you personally place in him or her. If Johns Hopkins is recommending IGRT, then I think you should feel confident that this is a good option. It doesn't mean that if you went to the Mayo Clinic you might not be offered surgery, but there is no specific "right" or "wrong" answer here. In the end you and your husband have to make a judgment call, and there comes a point at which more reading does indeed cause more confusion simply because you will always be able to find someone who says that "their way" is the best way. That may have been true for them, but it does NOT necessarily make it true for your husband.