Gleason 8

[Guest guest]

Hullo

Welcome to the group. I'm sorry to hear of your diagnosis and that this is the reason we first talked.

There are two or three things to say immediately

No one at this stage is 100% sure of the grading. It would be good to get a second opinion from a different expert pathologist.

Next horses or dogs, so they say, I never bet, have different odds. The chances of a Gleason 8 being organ confined are less than a Gleason 6. So it is like betting on a 90 to 1 outsider, but sometimes they come home first!

What we say on this group is ask lots of questions of your medics, ask us lots of questions, be informed and make the decision that suits you.

Some folk with organ confined low Gleason disease decide to do nothing but keep on active surveillance and change lifestyle. Others decide they must take action. So long as they are informed about the pros and cons we don't mind what they decide.

For you the information you need is, are the cons of invasive treatment worth the possible pros of the treatment. At the end of the day, it is your decision, but we will do our best to listen and inform.

Gleason 8

Although scans indicate no spread, is it really possible for a gleason of 8 to be encapsulated,have the prostate removed, and no reocurrance? Am seeing a new specialist tomorrow - must drive 6 hours one way. Would appreciate any messages.

[Guest guest]

Well it is often said about prostate cancer that the first rule is that there are no rules. Although this one factor, Gleason score, would be a factor tending to indicate spread beyond the prostate, it is certainly NOT the only factor. There are many other aspects of your intial presentation that would be important to know. Is your Gleason 8 a 4+4, a 3+5 or a 5+3 or what exactly? You would need to know how much Gleason 5 is present to have a better indication of the likelihood of recurrence. What was your clinical stage at diagnosis? Was there a palpable tumor? What was your initial PSA at diagnosis? Is there a PSA history from which you could calculate the PSA doubling time and velocity which would help to judge the aggressiveness of the tumor? Was a PAP blood test done so that the success of RP or RT could be predicted? What is your gland volume? You can calculate tumor volume and PSA density if you have this information. What about other markers that might help to give an indication of the presence of systemic disease like CGA, NSE, CEA? These are blood markers that should be recorded as baseline parameters so that changes can be monitored as time goes by. Baseline testosterone should also be obtained prior to treatment in the event the disease management strategy involves androgen deprivation therapy at some point.

I think that you would understand all these issues better if you educated yourself in a more organized way than is possible on this or other lists devoted to prostate cancer issues. The Primer is such a resource, beginning with simple material and building on that learning in a step by step fashion. We have chapter summaries entitled "What You Should Have Learned From This Chapter", which you might want to read first so that you can pay attention to what is particularly important even though passages of text are highlighted in color to make certain that salient points are not missed by the reader.

I presume that you are still in the pre-treatment decision-making stage. There is still time to avoid the pitfalls that others fell into because they failed to become empowered patients prior to making a disease management decision. In the Primer, Dr. Strum and I outline a strategy of disease management designed to optimize outcomes for prostate cancer patients and their loved ones. There are many other fine resources on the Web and in print that you can use to be certain that you are aware of any information that may be beneficial to you. The PCRI website at http://www.pcri.org has a wealth of information including software for calculating PSA velocity and doubling times, tumor volume calculators and the like. There is alot of information, including many personal experience stories at the You Are Not Alone Now (YANA Now) website at http://www.yananow.net . Phoenix5 at http://www.phoenix5.org is a wonderful site where my dear departed friend Young has extensive information on intimacy issues and many, many other topics.

I wish you low PSA's and may your days be good, and long upon the earth.

Donna Pogliano

Co-author of "A Primer on Prostate Cancer, The Empowered Patient's Guide"

Gleason 8

Although scans indicate no spread, is it really possible for a gleason of 8 to be encapsulated,have the prostate removed, and no reocurrance? Am seeing a new specialist tomorrow - must drive 6 hours one way. Would appreciate any messages.

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[Guest guest]

and others - I believe this newcomer is an acquaintance of mine that I sent to this group. I wanted very much to spend hours telling he and his wife all I knew about this disease last night (as I just found out he was diagnosed) but as you know I'm preparing myself for surgery tomorrow. I know you all will take good care of these folks as you have me. I mentioned last night that somewhere on this site was a list of questions that should be taken into a doctor during a consultation. Would someone be so kind as to send out a link to those questions so they can print them off and take them along tomorrow? Thanks so much! Mick Metcalf wrote: Hullo Welcome to the group. I'm sorry to hear of your diagnosis and that this is the reason we first talked. There are two or three things to say immediately No one at this stage is 100% sure of the grading. It would be good to get a second opinion from a different expert pathologist. Next horses or dogs, so they say, I never bet, have different odds. The chances of a Gleason 8 being organ confined are less than a Gleason 6. So it is like betting on a 90 to 1 outsider, but sometimes they come home first! What we say on this group is ask lots of questions of your medics, ask us lots of questions, be informed and make the decision that suits you. Some folk with organ confined low Gleason disease decide to do nothing but keep on active surveillance and change lifestyle. Others decide they must take action. So long as they are informed about the pros and cons we don't mind what they decide. For you the information you need

is, are the cons of invasive treatment worth the possible pros of the treatment. At the end of the day, it is your decision, but we will do our best to listen and inform.

Gleason 8 Although scans indicate no spread, is it really possible for a gleason of 8 to be encapsulated,have the prostate removed, and no reocurrance? Am seeing a new specialist tomorrow - must drive 6 hours one way. Would appreciate any messages.God rewards those that keep on keeping on. Stay positive. Think positive. Pray positive. And talk positive.

Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Although scans indicate no spread, is it really possible for a gleason

of 8 to be encapsulated,have the prostate removed, and no reocurrance?

Am seeing a new specialist tomorrow - must drive 6 hours one way.

Would appreciate any messages.

[Guest guest]

Are you the folks I spoke to on the phone last night? Just wanted to let you know your message got through to the group. You will be getting feedback to your question very soon. Mickbackyarddukered wrote: Although scans indicate no spread, is it really possible for a gleason of 8 to be encapsulated,have the prostate removed, and no reocurrance? Am seeing a new specialist tomorrow - must drive 6 hours one way. Would appreciate any messages. God rewards those that keep on

keeping on. Stay positive. Think positive. Pray positive. And talk positive.

Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Unfortunately mets have to be over a certain size to show up on today's

scanning technology. You might want to talk to the doctor about early

chemo, vaccines, and clinical trials of novel therapies as part of your

education in addition to more traditional therapies.

Kathy.

Gleason 8

Although scans indicate no spread, is it really possible for a gleason

of 8 to be encapsulated,have the prostate removed, and no reocurrance?

Am seeing a new specialist tomorrow - must drive 6 hours one way.

Would appreciate any messages.

[Guest guest]

Here is a link to a list of questions to ask your doctor which can be found on a website called "Virgil's Prostate Online" at http://www.prostate-online.com/doctor.html

There are others, but this list will take longer than your doctor will probably want to spend with you, so going to an educational resource like the Primer is still recommended. You will want to seek resources that see your problem from different points of view. See a surgeon, a radiation oncologist and perhaps a cryosurgeon if that option appeals to you at all. A cryosurgery procedure is appropriate for some men, but has its own benefits and risks. It is quite effective in killing cancer regardless of Gleason score or ploidy because it kills by mechanical means -- freezing. But it often results in profound impotence because the erectile nerves are also destroyed by freezing along with the prostate tissue unless you are a candidate for focal cryosurgery with cancer on only one side of the prostate as established by a saturation biopsy. Higher Gleason cancers are often not cured by surgery because of the hazard of cancer outside the gland or undetected systemic cancer, and it is sometimes said that higher Gleason cancers can prove more resistant to radiation although with new technology, higher doses of radiation can be delivered more safely than with the older technology.

So you will have alot to talk about. You might want to take a look at the web version of the Primer for a short, understandable overview. It's at http://www.phoenix5.org/Basics/DPprimer0918.html. Let us know how it goes.

Donna Pogliano

Co-author of "A Primer on Prostate Cancer, The Empowered Patient's Guide" now available both in English and in the German language.

Re: Gleason 8

and others - I believe this newcomer is an acquaintance of mine that I sent to this group. I wanted very much to spend hours telling he and his wife all I knew about this disease last night (as I just found out he was diagnosed) but as you know I'm preparing myself for surgery tomorrow. I know you all will take good care of these folks as you have me. I mentioned last night that somewhere on this site was a list of questions that should be taken into a doctor during a consultation. Would someone be so kind as to send out a link to those questions so they can print them off and take them along tomorrow? Thanks so much!

Mick backyarddukered@...