gleason score of 9

VA Benefits Attorney

mrspjd said:

in addition to boots on the ground...
I believe there are also provisions beyond "boots on the ground" for VA benefits for PCa for Vietnam era military service. If you were on certain ships that came into areas designated as "gray water" then "boots on the ground" is not necessary.

Bronx advice was excellent: Contact your VA office ASAP to file your claim. If approved, the date your claim was filed determines when benefits start. There are several other threads discussing this subject. A search using the search box feature (found on the upper right on the PCa forum home page) should provide more info.

VA Venefits Accrual
I agree with the comments above. Get your claim in right away, even if you only can submit an informal claim with little information other than you want benefits. That will get your benefits to start accruing. You can then take a little time to get all the information together to submit your formal claim. To submit an informal claim you can use form 21-4138 (http://www.vba.va.gov/pubs/forms/vba-21-4138-are.pdf) You should then submit a completely filled out form 21-526 (http://www.vba.va.gov/pubs/forms/vba-21-526-are.pdf ). If you are talking to survivors of a veteran they will need a form 21-534 (http://www.vba.va.gov/pubs/forms/vba-21-534-are.pdf).

In addition to disability compensation, you should consider applying for Veterans Pension. This is means tested, but if you have limited assets this can potentially pay up to $1956 a month and you don't need to establish a disability rating. You just have to have served at least one day during a time of war and 90 days total.

FreddyJoe

Trew said:

Eligard
I just finsihed one yr on Eligard. My first doc had me scheduled for 2 yrs on the stuff but the new doc said quality of life was important and he was not sure 2 yrs was any better than 1 yr so we agreed to stop. He did say it would take about 9 months or maybe more for the eligard in me to be gone. Long lasting side effects. Be prepared for that when you come off whatever yu are on.

I was getting the 6 month shot. I have just ended the the 2nd 6th month period and the hot flashes are still going as strong as ever! However, the emotional roller coast has settled down. Other side effects continue unabated. 9 months will be up at the end of Feb. I can hardly wait!

Eligard
I was wondering how long it will take for this stuff to get out of our system. I have been on the 6 month injections for 2 years, the last one will be over next month. I was hoping normal life would come back a lot sooner than 9 months. I have also heard that Eligard and the low testerone levels can cause heart problems, has anyone had any heart problems on this stuff?

jogger

Trew said:

This Thread is Getting Serious
The correlation between PSA and Gleason scores mystifies me and I can make no sense out of it. My 5 + 4 didn't even get over 10 PSA. This thread does give me some cause for concern. 5+4 or 4+5, either way 9's are no good.

Gleason score
As you say, 9's are not so good. However, (and I'm sure this has been discussed before) and I (not a doctor) don't know if it makes a hell of a lot of difference, but 5+4 is worse than 4+5. The pathologist looks at the two most prevalent types of cancerous cells in a given tissue sample.. The largest number may show a serious deterioration, so it gets a 5, or they may be somewhat less deteriorated, so it will get less than 5. By the same token, the next larger group of 'rogue' cells may get a score of 5 or 4. So with a score of 5+4 you have a large group of badly differentiated cells and a smaller group somewhat less badly differentiated (cancerous) cells. With a 4+ 5 you have a large group of somewhat poorly differentiated cells and a smaller group
of very poorly differentiated cells. I hope I got that right. Hey, you could look it up. :-)

Gianni

Rake

Gleason Score 5+4
Wow! Just discovered this site. Glad to find a place to communicate with others about this disease. I was wondering if there are others out there with aggressive and advanced PCa (i.e. Gleason 9, T3b,N1,M0) who are athletes and undergoing ADT. I had to quit after 9 months as muscle loss, fat gain, osteopenia, hot flashes, emotional roller coaster etc., etc. were just hammering my quality of life. I've been off the "anti-juice" for 45 days and and slowly feeling better each day. Hopefully PSA is not rising. Got my fingers crossed for the next visit.

My PCa history is as follows:

1) I had a biopsy in March 2010 and results showed Gleason score 9 (5+4) with up to 95% in at least one of the samples

2) Had prostatectomy and lymph node dissection on May 15th 2010 with pathology showing 4 of 18 positive lymph nodes and extensive bilateral seminal vesicle invasion and clean margins.

3) Started ADT total blockade on 9/1/10 with Zoladex and Casodex after PSA never went to zero after RP and had a PSADT of 2 months.

4) Had 8 weeks RT to pelvic region Dec 2010 to Jan 2011

5) PSA and Testosterone in Dec, Feb, Mar, Jun measured undetectable

VascodaGama

Rake said:

Gleason Score 5+4
Wow! Just discovered this site. Glad to find a place to communicate with others about this disease. I was wondering if there are others out there with aggressive and advanced PCa (i.e. Gleason 9, T3b,N1,M0) who are athletes and undergoing ADT. I had to quit after 9 months as muscle loss, fat gain, osteopenia, hot flashes, emotional roller coaster etc., etc. were just hammering my quality of life. I've been off the "anti-juice" for 45 days and and slowly feeling better each day. Hopefully PSA is not rising. Got my fingers crossed for the next visit.

My PCa history is as follows:

1) I had a biopsy in March 2010 and results showed Gleason score 9 (5+4) with up to 95% in at least one of the samples

2) Had prostatectomy and lymph node dissection on May 15th 2010 with pathology showing 4 of 18 positive lymph nodes and extensive bilateral seminal vesicle invasion and clean margins.

3) Started ADT total blockade on 9/1/10 with Zoladex and Casodex after PSA never went to zero after RP and had a PSADT of 2 months.

4) Had 8 weeks RT to pelvic region Dec 2010 to Jan 2011

5) PSA and Testosterone in Dec, Feb, Mar, Jun measured undetectable

Rake; Have you any result from Immage Studies ?
Rake

You seem to have a type of very aggressive cancer. Gleason grade of 5 is the highest but the extent of the cancer spread is the matter to concern with. Have you done any image study?
There are Gleason score 9 guys doing ok for many years. Tackling the bandit the soonest gives a chance to stop its advance. I assume that you have been managing your case exactly with that intent for the series of treatments done since March of 2010, and you done it successfully.

ADT can give nasty symptoms to which many find it difficult to sustain. Nevertheless hormonal treatment gives to many a “Hope” in the control of PCa advancement, and for some it is the only way.
The great news for those on ADT is that ASCO has included in their guidelines the intermittent modality for hormonal application with cycles over the one year.
From a 15 year study it was revealed that Intermittent is good as that of Continuous in terms of survival. For those relying on ADT this means that they will enjoy a drug-free (vacations) period and a relief from the side effects.

Hopefully you have become cancer free, but at least you know that directly caused side effects from ADT would not affect your love for “athletes”, in case of needs. There are also newer drugs to combat cancer advance with lesser side effects.

Welcome to the board.

VGama

Rake

VascodaGama said:

Rake; Have you any result from Immage Studies ?
Rake

You seem to have a type of very aggressive cancer. Gleason grade of 5 is the highest but the extent of the cancer spread is the matter to concern with. Have you done any image study?
There are Gleason score 9 guys doing ok for many years. Tackling the bandit the soonest gives a chance to stop its advance. I assume that you have been managing your case exactly with that intent for the series of treatments done since March of 2010, and you done it successfully.

ADT can give nasty symptoms to which many find it difficult to sustain. Nevertheless hormonal treatment gives to many a “Hope” in the control of PCa advancement, and for some it is the only way.
The great news for those on ADT is that ASCO has included in their guidelines the intermittent modality for hormonal application with cycles over the one year.
From a 15 year study it was revealed that Intermittent is good as that of Continuous in terms of survival. For those relying on ADT this means that they will enjoy a drug-free (vacations) period and a relief from the side effects.

Hopefully you have become cancer free, but at least you know that directly caused side effects from ADT would not affect your love for “athletes”, in case of needs. There are also newer drugs to combat cancer advance with lesser side effects.

Welcome to the board.

VGama

ADT Side Effects on Athletes
Thanks VGama!

I really appreciate hearing that G.S. 9 guys can do well for years. The Docs and studies I've seen for folks in my boat seem to be rather pessimistic.

Initially in March of 2010 I had CT and bone scan and repeated in Dec 2010 and all were negative Yeah!

As mentioned, I decided to discontinue total blockade on June 15th 2011. Been feeling significantly better ever since. Much less fatigue and mental clarity is returning. Now I'm trying to regain fitness and lose some nasty fat! I still having a lot of trouble regaining aerobic capacity. Can't seem to push like I used to. Feels like I have a governor on my engine and that my heart muscle has been adversely affected. Now that I'm pushing hard to regain at least some of my athlete status, is there any concern that I may be at increased risk of heart attack in the process? Could 9 months of total blockade have led to adverse heart muscle deterioration? Very curious about this and would love to hear from anyone else who could shine any light on this. I have found nothing in the literature about ADT and affect on athletes (particularly aerobic sports).

Had PSA and Testosterone checked last week, PSA <.1, Testosterone . Was amazed how well I was feeling considering low T. I'm beginning to think the effects I was experiencing were more due to the drugs than the decrease in Testosterone. Anybody else experience this?

VascodaGama

Rake said:

ADT Side Effects on Athletes
Thanks VGama!

I really appreciate hearing that G.S. 9 guys can do well for years. The Docs and studies I've seen for folks in my boat seem to be rather pessimistic.

Initially in March of 2010 I had CT and bone scan and repeated in Dec 2010 and all were negative Yeah!

As mentioned, I decided to discontinue total blockade on June 15th 2011. Been feeling significantly better ever since. Much less fatigue and mental clarity is returning. Now I'm trying to regain fitness and lose some nasty fat! I still having a lot of trouble regaining aerobic capacity. Can't seem to push like I used to. Feels like I have a governor on my engine and that my heart muscle has been adversely affected. Now that I'm pushing hard to regain at least some of my athlete status, is there any concern that I may be at increased risk of heart attack in the process? Could 9 months of total blockade have led to adverse heart muscle deterioration? Very curious about this and would love to hear from anyone else who could shine any light on this. I have found nothing in the literature about ADT and affect on athletes (particularly aerobic sports).

Had PSA and Testosterone checked last week, PSA <.1, Testosterone . Was amazed how well I was feeling considering low T. I'm beginning to think the effects I was experiencing were more due to the drugs than the decrease in Testosterone. Anybody else experience this?</p>

Vitamin D has an important role in PCA treatment
Rake

Zoladex half-life is taken usually as 14 days. This added to the depot’s effectiveness period (1,2,3,6 months ??) plus the time your body requires to start producing natural LHRH, is the time it takes to start seeing an increase in T levels.
However, the faster wellbeing you are experiencing may be due to the withdrawing of Casodex. This drug main function is to “prohibit” the testosterone from bidding to the cells receptors (benign and cancerous); and it has a half-life of 5 days. The results are a quicker back-to-normal feeling. Unfortunately that also means that any cancer that has not been killed in IMRT, would be feeding on T.
The PSA will tell you in the long term about IMRT’s success as well as if you need in future another cycle of ADT.

ADT is a risk for heart attacks but such is rare and it is usually seen on cases of long term (over 4 years) use of the drugs. This seems to be a cause for the low testosterone that is linked directly to an increase in cholesterol. Heart muscle deterioration was never commented as a side effect from ADT.

I would recommend you to include in your next annual health check-up a bone density scan to verify for osteopenia/osteoporosis (bone loss) and a cardiac test (ECG and echocardiogram). Both tests are follow-ups of your treatment. Your athlete’s daily physical exercises are excellent in the fight of treatment’s side effects and in the fight of the bandit.

I am on ADT since Nov2010 after the failure of radical treatments in my eleven years of fight. In my cancer care program, I include daily walks of 8 Km and other active fitness “doings” as tendering my garden and playing golf on week-ends. This activity is behind my experiencing mild side effects.
I do take a MRI (CT) and a Bone Scintigraphy every two years, and now I have included a bone density scan and echocardiogram. PSA and T are done every three months (because I am on ADT), and PAP and Lipids annually.
Diet seems to have an important role in my fight and so it is the added supplements I take on On/Off periods (E + Selenium + Aspirin). Vitamin D is important and it should be checked in particular by guys living in northern countries (lesser sunshine).

Wishing you a continuous good recovery and successful results.

VGama

hopeful and optimistic

VascodaGama said:

Vitamin D has an important role in PCA treatment
Rake

Zoladex half-life is taken usually as 14 days. This added to the depot’s effectiveness period (1,2,3,6 months ??) plus the time your body requires to start producing natural LHRH, is the time it takes to start seeing an increase in T levels.
However, the faster wellbeing you are experiencing may be due to the withdrawing of Casodex. This drug main function is to “prohibit” the testosterone from bidding to the cells receptors (benign and cancerous); and it has a half-life of 5 days. The results are a quicker back-to-normal feeling. Unfortunately that also means that any cancer that has not been killed in IMRT, would be feeding on T.
The PSA will tell you in the long term about IMRT’s success as well as if you need in future another cycle of ADT.

ADT is a risk for heart attacks but such is rare and it is usually seen on cases of long term (over 4 years) use of the drugs. This seems to be a cause for the low testosterone that is linked directly to an increase in cholesterol. Heart muscle deterioration was never commented as a side effect from ADT.

I would recommend you to include in your next annual health check-up a bone density scan to verify for osteopenia/osteoporosis (bone loss) and a cardiac test (ECG and echocardiogram). Both tests are follow-ups of your treatment. Your athlete’s daily physical exercises are excellent in the fight of treatment’s side effects and in the fight of the bandit.

I am on ADT since Nov2010 after the failure of radical treatments in my eleven years of fight. In my cancer care program, I include daily walks of 8 Km and other active fitness “doings” as tendering my garden and playing golf on week-ends. This activity is behind my experiencing mild side effects.
I do take a MRI (CT) and a Bone Scintigraphy every two years, and now I have included a bone density scan and echocardiogram. PSA and T are done every three months (because I am on ADT), and PAP and Lipids annually.
Diet seems to have an important role in my fight and so it is the added supplements I take on On/Off periods (E + Selenium + Aspirin). Vitamin D is important and it should be checked in particular by guys living in northern countries (lesser sunshine).

Wishing you a continuous good recovery and successful results.

VGama

supplements
In the large clinical study, SELECT indicated that E and Selenium supplements were not effective to prevent prostate cancer at a 200mg dose(selenium) and in fact may have increased the risk of type two diabetis.
Another recent study mahy have shown a benefit from smaller amounts of selenium in foods.
(Source:Promoting Welleness for Prostate Patients....mark moyad, md,mph

Not smokers need only 15-30mg of natual or synthetic vitamin e to nornalize their blood levels. smokers need slightly more (source: also dr moyad)

MITCH 55

avidity said:

Gleason 9
My dad has just been diagnosed to have Prostate Cancer with a score of 4+5=9 and he is 75 years old. He had an MRI done for his pevlis as well as the dye Bone scan. The bone scan showed some areas that took more dye but another doctor is not convinced that it is due to cancer spread on the bone and feels that it maybe due to something else and so have prescribed X-ray.
So any idea what options do we have for advanced prostate cancer? The cancer has not spread to other organs or parts of the body and right now presumably assumed that it has spread only to Bone. X-ray results are yet to come and we are waiting for that.
I am hearing about lot of side effects of Harmonal therapy. Can somebody help me understand what kind of effects can I expect? I know it differes from individual to individual but want to get an idea of the same.
Also did anybody consider of removing the testicles to stop the testesterone production? Has anybody undergone that? If not then is there any particular medical reason other than sex content! Can you all please share.
Thank you in advance.
Wish you all the best and please hang in there.. This news has caused havoc in our family and right now still shocked and not yet out of it..

Hormone Therapy
Avidity,
So far the hormone therapy has been a piece of cake. Frequent hot flashes and some weight gain but otherwise feeling good and hoping that it is working. Have only had one shot so far...get one every 112 days. Someone mentioned that the dosage may be reduced after the first year or so. Maybe that depends on PSA...last PSA was 4 which is in the "normal" range. Go figure.

Good luck and Keep The Faith


Mitch

MITCH 55

VascodaGama said:

Hormone Therapy (aka ADT)
Mitch55

Welcome to the ADT environment. You will find it easier to survive those side effects if you get involved in a fitness program and change some habits.
Physical exercise (daily walks of 8 Km) is behind the success of experiencing mild symptomsin my case.
Diet is also an important aspect in ADT, and you may need to look for supplements that your body will miss once in low levels of testosterone.

Bone loss is probably the most danger effect directly connected to ADT. You should discuss with your doctor about the role of having a bisphosphonate.
I also recommend you to get a bone density scan done now to serve you as a base-line for your future tests, and to have your testosterone levels checked together with the PSA to ascertain the effectiveness of the drugs. A high PSA in a low testosterone level could indicate the need of changing drugs or the need in increasing its potency (mg).
A good “bible” for patients in ADT, which informs on everything, one should know about hormone treatment, side effects and how to handle the symptoms, is the book “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

Could you share info on the protocol of your ADT?

Wishing you the best.
VGama

Hormone Therapy
VGamma,

What do you mean by protocol? I am to receive a hormone shot every 112 days. Have had my first shot and will get the next one in September. Have had weight gain and hot flashes both of which are tolerable. Feel good and still active. Taking calcium tablets for the bones...I think is called CitraCal. Have not had a bone density test but will ask my physician about it.
I am thinking positive thoughts and doing some extra praying for all of us.

Oh yes, my regular physician prescribed Prozac to help with the hot flashes...haven't seen any difference yet.

Mitch

VascodaGama

hopeful and optimistic said:

supplements
In the large clinical study, SELECT indicated that E and Selenium supplements were not effective to prevent prostate cancer at a 200mg dose(selenium) and in fact may have increased the risk of type two diabetis.
Another recent study mahy have shown a benefit from smaller amounts of selenium in foods.
(Source:Promoting Welleness for Prostate Patients....mark moyad, md,mph

Not smokers need only 15-30mg of natual or synthetic vitamin e to nornalize their blood levels. smokers need slightly more (source: also dr moyad)

Mitch55; ADT protocols
Mitch55

Hormonal treatment causes side effects that in some became unbearable. You and I are of the lucky group with mild symptoms. I started ADT in Nov.2010. So far I have experienced a large “quantity” of side effects but relatively mild.
As I progress in the treatment I expect to get more of the “staff” and probably in the future I will get a nasty one.

My question on the ADT protocol was to know what has your doctor reserved to you. Reading your post it all indicates that you are in the right truck. Positiveness is a must.

Just for information to you and other guys reading this thread, depending on the status of each one, doctors usually recommend ADT which may address to a Total Blockade of “testosterone feeding” to the cancer. This refers to three possible ways that cancer has in which to “feed” and survive.
These blockades are done with three drugs. ADT(1) is considered a single blockade (your case) using a LHRH agonist shot to stop production of testosterone (T) at the testis (chemical castration). Approximately 95% of T is produced there.
Adrenal glands produce almost all of the rest of T circulating in our body. We could dissect the glands but, we need them for other functions so the second blockade (ADT2) is done at the cells receptors (mouths) using an antiagonist drug which attaches itself to those receptors (closing cancer’s mouths) prohibiting the feeding. Some doctors still use a third protocol named Total Androgen Deprivation Therapy (ADT3) with a 5-alfa reductase inhibitor that has the purposes of blocking the transformation/factory of normal testosterone into a 5-fold powerful form of “refined” T called Dihydrotestosterone (DHT).

These protocols can be applied from the very start on single, double and triple blockade, or can be altered along the progress of the treatment. The control on the effectiveness of the treatment is verified through tests. PSA test will demonstrate the activity of cancer; T test will verify effectiveness of the drugs (castration levels); and lipids test will provide info on the risks caused by the potency of the drugs.

ADT are administered continuously or intermittently. The benefits of an intermittent modality are various being the most obvious the relief of the side effects.
Recently, ASCO has introduced in its Guidelines of Treatment this modality which has been shown to give the same outcome as that on a continuous hormonal therapy. You can read about the matter here;
http://www.pcf.org/site/c.leJRIROrEpH/b.7633981/k.3C11/Intermittent_Androgen_Deprivation.htm

Citracal supplement includes vitamin D which is recommended by oncologists as essential in prostate cancer treatment.
Once you get the results from the bone density scan, your doctor may recommend you a bisphosphonate to help with any bone loss.
It seems that physical fitness is good against ADT side effects. I haven’t taken any medicine yet to counter hot flashes or other.

Good luck in your journey.

VGama

tspoon

I am so happy to have found
I am so happy to have found this site, I have spents months looking for real cases, with real people undergoing the same thing as me. I am 59, 4+5 gleason score and in March my psa was 1913. Beginning of stage 4 cancer, I now have psa 1.9, alkaline phostase went from 476 to 185. When you hear these numbers, you just want to know, how long can I expect to feel this good? You want answers, you want a semblance of life, but mostly you want hope. Zoladex treatment #3 coming up, xgeva monthly, not to mention calcium supplements, vitamin d scripts, etc. At dr.s office Monday, they were raving over numbers I don't understand, but the conclusion was cancer is no longer present in my bone marrow. What does that mean? Where did it go? I am confused, on this matter. I didn't think remission was a word that was possible for me, is it? I feel better than I have in years, I want to make 70 yrs old, I have plans to live, I want to know if I would qualify for disability at least. I have carpal tunnel syndrome, severe, have lost the use of 3 fingers and thumb in left hand, right is mildly severe. Tuesday doc said let's operate, am i wasting my time? Answers please if anyone gas them please.

BERTB

tspoon said:

I am so happy to have found
I am so happy to have found this site, I have spents months looking for real cases, with real people undergoing the same thing as me. I am 59, 4+5 gleason score and in March my psa was 1913. Beginning of stage 4 cancer, I now have psa 1.9, alkaline phostase went from 476 to 185. When you hear these numbers, you just want to know, how long can I expect to feel this good? You want answers, you want a semblance of life, but mostly you want hope. Zoladex treatment #3 coming up, xgeva monthly, not to mention calcium supplements, vitamin d scripts, etc. At dr.s office Monday, they were raving over numbers I don't understand, but the conclusion was cancer is no longer present in my bone marrow. What does that mean? Where did it go? I am confused, on this matter. I didn't think remission was a word that was possible for me, is it? I feel better than I have in years, I want to make 70 yrs old, I have plans to live, I want to know if I would qualify for disability at least. I have carpal tunnel syndrome, severe, have lost the use of 3 fingers and thumb in left hand, right is mildly severe. Tuesday doc said let's operate, am i wasting my time? Answers please if anyone gas them please.

Congratulations!
Yes tspoon, this is a great site. I'm 61 and also G-9 with a PSA of 5.2 when dx'ed in April of this year. I'm just starting this journey and hoping for results like yours. Another great site I found is HealingWell.com. There are many men with high G's there also.
Good luck and I hope you continued success.

VascodaGama

BERTB said:

Congratulations!
Yes tspoon, this is a great site. I'm 61 and also G-9 with a PSA of 5.2 when dx'ed in April of this year. I'm just starting this journey and hoping for results like yours. Another great site I found is HealingWell.com. There are many men with high G's there also.
Good luck and I hope you continued success.

Tspoon; We are Happy to have found you too
Tspoon

You are wonderful. Your post shows me how helpful can we be as comrades in this boat, sharing information.
I sincerely hope that you are well and have gone through that operation. It is so nice to read about your successful remission in the prostate cancer.
Xgeva (denosumab) may be the “culprit” for the “cleaning” of cancer at bone marrow. It is one of the newer drugs designed to act on identified targets (markers) which are the results from DNA studies on the cancer.
You surely will do your 70s and 80s and …... All those plans will be accomplished.

I wish you a continuous success in your treatment.
VGama

George A

Just diagnosed 4+5 PAS55
I am 54 Yrs old, Just yesterday my biopsy results came out with 4+5=9 PSA 55, I am new to this and I don't know what to do next...I am so much confused, what do all these results mean? , my GP said that I have to wait until 1st week of October to try take an appointment from a specialist, few people who saw my results went crazy about it and advised me to act quickly other wise I will die soon!! I can't wait to see a doctor
George A

lewvino

George A said:

Just diagnosed 4+5 PAS55
I am 54 Yrs old, Just yesterday my biopsy results came out with 4+5=9 PSA 55, I am new to this and I don't know what to do next...I am so much confused, what do all these results mean? , my GP said that I have to wait until 1st week of October to try take an appointment from a specialist, few people who saw my results went crazy about it and advised me to act quickly other wise I will die soon!! I can't wait to see a doctor
George A

George,
So sorry to read
George,
So sorry to read about your test result. First you might want to start your experience as a new thread here on the forum.

A Gleason 9 is NOT Good news. The first thing I would do is to send your slides for a Second opinion. The second thing I would do is to educate yourself as much as possible. This is a great place for education which is why I suggest starting this as a new thread.

You are not going to die soon as some have indicated to you! But it is important that you do start down the road to recovery and fighting this beast. Usually the reason they have you wait a few weeks is to allow time for the prostate to heal some following the biopsy. The first of October will be here very quickly.

I was also 54 when I was diagnosed but my Gleason was a 7 not a 9 with a PSA of 5.3. I had surgery to remove my prostate.

You will most likely need to have several additional tests ran to determine if your cancer has spread. The tests are not painful so don't worry about that! Following those tests then you will most likely be started on your treatments. The goal of the treatment will be to knock that PSA Down in number. You may or may not have surgery to remove your prostate. I know of one man that had numbers similar to yours and he had surgery first to remove the prostate and then started followup hormone therapy. He is doing well two years now from his initial treatment.

Do let us know how things progress. I'm sure others will be giving you their thoughts also.

lewvino
age 57

lewvino

George A said:

Just diagnosed 4+5 PAS55
I am 54 Yrs old, Just yesterday my biopsy results came out with 4+5=9 PSA 55, I am new to this and I don't know what to do next...I am so much confused, what do all these results mean? , my GP said that I have to wait until 1st week of October to try take an appointment from a specialist, few people who saw my results went crazy about it and advised me to act quickly other wise I will die soon!! I can't wait to see a doctor
George A

George,
So sorry to read
George,
So sorry to read about your test result. First you might want to start your experience as a new thread here on the forum.

A Gleason 9 is NOT Good news. The first thing I would do is to send your slides for a Second opinion. The second thing I would do is to educate yourself as much as possible. This is a great place for education which is why I suggest starting this as a new thread.

You are not going to die soon as some have indicated to you! But it is important that you do start down the road to recovery and fighting this beast. Usually the reason they have you wait a few weeks is to allow time for the prostate to heal some following the biopsy. The first of October will be here very quickly.

I was also 54 when I was diagnosed but my Gleason was a 7 not a 9 with a PSA of 5.3. I had surgery to remove my prostate.

You will most likely need to have several additional tests ran to determine if your cancer has spread. The tests are not painful so don't worry about that! Following those tests then you will most likely be started on your treatments. The goal of the treatment will be to knock that PSA Down in number. You may or may not have surgery to remove your prostate. I know of one man that had numbers similar to yours and he had surgery first to remove the prostate and then started followup hormone therapy. He is doing well two years now from his initial treatment.

Do let us know how things progress. I'm sure others will be giving you their thoughts also.

lewvino
age 57

George A

lewvino said:

George,
So sorry to read
George,
So sorry to read about your test result. First you might want to start your experience as a new thread here on the forum.

A Gleason 9 is NOT Good news. The first thing I would do is to send your slides for a Second opinion. The second thing I would do is to educate yourself as much as possible. This is a great place for education which is why I suggest starting this as a new thread.

You are not going to die soon as some have indicated to you! But it is important that you do start down the road to recovery and fighting this beast. Usually the reason they have you wait a few weeks is to allow time for the prostate to heal some following the biopsy. The first of October will be here very quickly.

I was also 54 when I was diagnosed but my Gleason was a 7 not a 9 with a PSA of 5.3. I had surgery to remove my prostate.

You will most likely need to have several additional tests ran to determine if your cancer has spread. The tests are not painful so don't worry about that! Following those tests then you will most likely be started on your treatments. The goal of the treatment will be to knock that PSA Down in number. You may or may not have surgery to remove your prostate. I know of one man that had numbers similar to yours and he had surgery first to remove the prostate and then started followup hormone therapy. He is doing well two years now from his initial treatment.

Do let us know how things progress. I'm sure others will be giving you their thoughts also.

lewvino
age 57

Dear Lewvino
I feel much better now after I heard from you, this is a great site indeed and you sound like a great person, I congratulate you for defeating this disease!!
I really can't wait to see my doctor soon, I am determined to fight the disease till the end, I have hope and faith in god as well as new technologies that are able now to perform miracles.
The hard thing though will be the decision that I will have to make on my own chosing the treatment path, as I knew that the patient must decide that not the doctor!! is that likely to happen ? and what are the crireria that I will rely on in making such tough decision!

Thanks again
George

VascodaGama

George A said:

Dear Lewvino
I feel much better now after I heard from you, this is a great site indeed and you sound like a great person, I congratulate you for defeating this disease!!
I really can't wait to see my doctor soon, I am determined to fight the disease till the end, I have hope and faith in god as well as new technologies that are able now to perform miracles.
The hard thing though will be the decision that I will have to make on my own chosing the treatment path, as I knew that the patient must decide that not the doctor!! is that likely to happen ? and what are the crireria that I will rely on in making such tough decision!

Thanks again
George

Tough decision
George

I would like to welcome you to the board too. The first thing I recommend you is that you do not allow anxiety to take over your rezoning.

Prostate cancer (PCa) is scary to all of us. You may not know but there are many guys in similar situation as yours; young and diagnosed with an aggressive type of cancer. My diagnoses occur at my 50 years old eleven years ago, and I cried.
Those who commented your sentence (“I will die soon”) are people that do not know about this type of cancer and are unaware of the several ways to treat it. It is a fact that your status with Gleason grade of 4 and 5 (the highest in aggressivity) and the PSA at high level of 55, are two elements indicative that you need to be cautions and should try to control the matter the soonest, but you should do it with a sense of coordination.

Educated on the matter is a must do thing and you could start preparing a list of Questions for your next meeting with the specialist. We at this forum can help you in understanding the meaning of the things, based on our experience. You will need a doctor specialized in PCa and that you trust. Not a generalist.

One week waiting to meet your specialist it is reasonable to me. The cancer status does not modify that critically in 7 days. Prostate cancer is of the type that gives patients time to study about their status, time to decide on a treatment and time to plan its incidence on life routines and future. The whole family will be affected by the bandit.
I wonder what made you to have a biopsy. Many (like in my case 24.2), it was due to a suspiciously high PSA test. And some are due to past history of symptoms or due to other traditional examinations such as positive DRE.

Your doctor most surely will start by recommending you to get image studies like an MRI and Bone scan, and probably a PAP test and more PSAs. The biopsy report has other information that you have not posted here, but that it is necessary for your next meeting with the doctor. He will attribute a Clinical Stage to your case from which a determined treatment can be then recommended.

In this site you can get an idea of questions which you can adapt to your own List. I always recommend that the list should be long and should include questions even if they seem weird to us. Waiting for a second consultation to make more questions later may not be wise when one needs to get to a quicker response.
http://csn.cancer.org/node/224280

Here are generalities regarding prostate cancer;
http://www.drrajmd.com/conditions/prostate/cancer/prostate_cancer.htm

All treatments have their risks and side effects to which you should be aware of. These should make part of your questions and it should be considered in the decision of the type of treatment, because some effects are nasty and may become permanent.

I hope you let us know developments on your case so that we better can opinion on your status.

Good luck in your journey.
VGama

lewvino

George A said:

Dear Lewvino
I feel much better now after I heard from you, this is a great site indeed and you sound like a great person, I congratulate you for defeating this disease!!
I really can't wait to see my doctor soon, I am determined to fight the disease till the end, I have hope and faith in god as well as new technologies that are able now to perform miracles.
The hard thing though will be the decision that I will have to make on my own chosing the treatment path, as I knew that the patient must decide that not the doctor!! is that likely to happen ? and what are the crireria that I will rely on in making such tough decision!

Thanks again
George

George,
As part of your
George,
As part of your education I would strongly recommend purchasing the book by Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, This can be found at Amazon or other online book sellers.

Dr. Walsh is considered one of the top experts in the field of Prostate Cancer. His book is written for the patient to understand about this cancer that you are facing.

VascoDaGama has also given you some solid advice and I respect Vasco's opinions. He is well educated on different aspects of this cancer.

A positive mental attitude will go a long ways. Also your faith in God is great. I'm also a religious person and had many praying for me on my journey. Unfortunately my journey is not over yet since following my surgery a positive 'margin' was noted. What this means is that the cancer went to the very edge of the surgical speciman when it was examined. I have my PSA checked frequently and so far have been getting 0's on my tests. If my cancer comes back then I will need follow up treatments.

You have to be your own advocate on this cancer and don't blindly follow what a doctor might recommend. A good doctor will consider your thoughts and questions.
If you ever feel the need to talk offline there is an email portion to the forum where you can contact any of us. Look under CSN Email. Or of course we could chat by phone. Several men chatted with me on my initial beginings of my journey and I have talked to others to help them with the understanding.


Lewvino (larry)