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gleason score of 9

norwood
Posts: 1
Joined: May 2010

I have a gleason score of 9 with a psa of 69. Does anyone else have a gleason score this high and what treatment route have you taken?

Trew
Posts: 891
Joined: Jan 2010

Surgery on march 23, 09

First hormone shot- Around April 23, 09

Radiation from Nov- Jan

Positive margins- bladderneck.

My PSA was a lot lower, under 10 but the same gleason.

I wish you well.

Remember, at 9 you are still under a perfect "10"

RNOR
Posts: 4
Joined: Apr 2010

How is your quality of life now that you are on hormone treatment? I had my surgery March 26, 1020, (Gleason 9) and will probably be given the same treatment. Thanks in advance for your response. Success To You!!!

Trew
Posts: 891
Joined: Jan 2010

I was on Eligard 6 month shot injected into the stomach. Ouch. I was scheduled for 4 shots but I changed docs and the new doc agreed 2 shots was enough. I can still feel the pellet from the last shot- those things seem to last forever!

I think it gave my wife some comfort- she is afraid of this cancer thingie. both Lupron & eligard have lots of side effects- and I think I had them all. So I was delighted to not get the third injection. As far as my quality of life- well that is a complicated question. What is intolerable to me might be very easily within your comfort zone. I am also still leaking and the combination the after effects of surgery has not been good for me. But it is better than dying. so many difficult choices with PC- and none of them are easy or comfortable.

Also, I want to comment on that 1020 surgery date- must have been some surgeon!!! LOL and you must be some kind of patient!! LOL

RNOR
Posts: 4
Joined: Apr 2010

Thanks for your info and a GREAT sense of humor! I'm 67, at time of surgery last month had a PSA of 7.4. Trying to keep my wife from being afraid for me is a task.

God Bless and...Success To You!!!

142
Posts: 169
Joined: Dec 2009

My post-op Gleason was raised from the biopsy 4+4 in 7 of 12 cores to 4+5. My PSA was a lot lower (7.4).
I had DaVinci surgery 10/09 (age 56), and have just started IGRT.

Your 9 is either a 4+5, or 5+4. The first number being higher would mean it is a more aggressive cancer. As well, it depends on how many cores were taken and how many were positive.

Your age will also have a lot to do with treatment options.

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

Norwood, my scores are much lower but have read of many who post here who had PSA readings in the hundreds and some even in the thousands. There are still many treatment options including surgery (if it is still contained in the prostate) and radiation, hormone blockage, cryo and others. Make sure you research all your options carefully and good luck!

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I was gleason 7 but yesterday met a man with Gleason 9. He had robotic surgery about 10 weeks ago...Doc had to cut wide around the prostate to get rid of as much possible cancer as possible. He has all ready started taking Hormone therapy.

Good luck on your treatments!

Larry

RNOR
Posts: 4
Joined: Apr 2010

I'm in the same boat. Gleason score of 9, had robotic surgery April 26, 2010, and of six lymph nodes harvested cancer was found in one. April 27, 2010 took a PSA test. May 10, 2010 will meet with doc to determine the next course of treatment. I will keep you posted. Success To You!!!

jimbeam50
Posts: 47
Joined: Oct 2008

My husband's gleason score was 9 (5+4) and his PSA was in the thousands and still is after two years of various treatments. Many variables involved with this disease including staging, response to treatment etc. My husband was unfortunately in stage IV when diagnosed. This is probably where the new vaccine provenge would be beneficial, at the initial diagnosis of advanced prostate cancer. Taxotere was the latest drug available and was supposed to increase life expectancy by a few additional months over what was used prior to that.

Several options available to you, good luck. Sheila

Susiebelle
Posts: 15
Joined: Nov 2009

Shelia,

My husband was also diagnosed at stage IV. His PSA was almost two thousand at the time of diagnosis in May of 09. He tried the Lupron route, but that did not work for him at all. His Pca is very aggresive. He is currently on chemo with Taxotere. So far, it seems to be okay, but he has had some pain return in the last few weeks. Our oncologist has scheduled him to repeat the CT scan and the bone scan, just to see if something is going on, like maybe the chemo is no longer working. Perhaps he has a small fracture or something, we shall see.

I did contact our oncologist about Provenge. If something comes up for a trial or something in our area, he knows we are interested. Our HMO will probably still think of it as experimental even though it has been approved by the FDA.

I say good luck to all of you. Each of you are lucky that you have the problem of chosing which option is best for you. I wish each of you the best.

Susiebelle

Trew
Posts: 891
Joined: Jan 2010

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.

142
Posts: 169
Joined: Dec 2009

I've understood that the two are completely different indicators.

PSA is produced by the prostate, and can be very high because of non-cancer factors. The Free PSA in relation to complexed PSA is important. Walsh's book spends a whole chapter on this, and he points out that you can have a low PSA and cancer, as well as a high PSA without.

Gleason score is an indicator of the form of the cells. High Gleason scores are considered aggressive, thus riskier.

jimbeam50
Posts: 47
Joined: Oct 2008

Your husband didn't happen to serve in Vietnam did he. My husband was on Taxotere for 10 months before it stopped working. Good explanation 142 that's why a biopsy is always needed to confirm cancer. Sheila

Susiebelle
Posts: 15
Joined: Nov 2009

Shelia, my husband did not serve in VietNam. He was drafted in the last draft, and ended up joining the National Guard. He stayed in this country for his entire 21 year career with an MP unit.

He is currently law enforcement, and we just don't know where this cancer came from. There is no history in his family. We were making our retirement plans, as he will retire from the Sheriff's Department in July 2011. That is all gone now. He started his Taxotere in January, and we should know by the end of the month if this is when that has stopped working.

Strange journey cancer takes you on. All consuming, all disrupting. Funny, but my husband never got a Gleason score. It didn't matter. The cancer was all over his lymph system and his bones. Hope we can get 10 months out of the Taxotere.

Susiebelle

jimbeam50
Posts: 47
Joined: Oct 2008

I asked about Vietnam because they assume my husband contacted his PC due to his exposure to agent orange. Did your husband have a biopsy? If so he probably has a gleason score. No, it doesn't matter but tells you how aggressive the cancer is but stage IV tells you that too!
Good luck to you and your husband. Sheila

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Sheila and others....I hope you know that if the male stepped foot in vietnam that you are eligible to receive benefits from the VA For the exposure to Agent Orange causing Prostate cancer. You can file a claim. If you did not know this please check out 'healing well web site prostate cancer forum' There are several threads going on overthere about getting the benefits that are rightly due to you. Sonny posts from time to time on this forum and he just got his approval for 100% disability on his Prostate Cancer.

I missed the Vietnam experience but if you served then GET YOUR BENEFIT...You rightly deserve it.

Larry (age 55)

MITCH 55's picture
MITCH 55
Posts: 7
Joined: May 2011

Larry,
I did serve a year in Viet Nam in 1967-68. Do you have any details on the benefits available to vets with cancer? I guess I should contact my nearest VA office. Let me know if you have any tips and thank you. Keep The Faith
Mitch

BRONX52
Posts: 156
Joined: Apr 2010

You should contact your regional va office to get the ball rolling on your claim. They will send you the forms that need to be filled out verifying Vietnam service. There are several cancers linked to agent orange that you can be compensated for and prostate cancer is one of them. I have heard stories of claims taking years to be completed but in my case it took only 4 months to get approved. All you have to prove is that you physically were in vietnam (boots on the ground). The cancer is presumed to have been caused by agent orange so you don't have to prove that. Once a cancer diagnosis has been made you are eligible for benefits. But you have to apply !!! Don't delay, you deserve to be compensated for your service in Vietnam . Thanks for your service.

mrspjd
Posts: 688
Joined: Apr 2010

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 Benefits Attorney
Posts: 3
Joined: Jul 2011

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.

cptkenny
Posts: 1
Joined: Jun 2012

Hi Larry,

I was in the jungle for seven months and at times, for lack of h2o, we had to drink out of bomb craters in areas that were sprayed with agent orange. YES, there is help for several different types of cancers that are "presumptive" with agent orange. I have been on the agent orange registry with the VA for 25 years (before that, there was no VA to speak of). Last summer, my PSA went to a 7 and three months later to a 9. I almost walked away from the bioposy but was talked into it. I studied hard and got a perfect 10! I opted for the operation, but the oncologist said hormone therapy and radiation were the best bet. They did TWO bone scans and TWO soft tissue scans and were surprised that there seemed to be no spread. I got the hormone shot in September and radiation started in January. They went with "high beam" for 25 treatments and theyn with the "regular focused" beam for the next 20. Not bad for the first half, but the last month, it was a race to the bathroom at any time of day.
Two days age, June 13th, I met with the oncologist and the PSA is way down, but he suggests hormone therapy for the next two years and then, even longer till the effect of the treatment wears off in time. As he said, "Some people are curious to see if the cancer is gone and quit the hormone therapy, but if it is not, then we have to look at other more drastic treatments". I am not curious!
My suggestion to you is visit with your local VA and if you were in Vietnam and have a covered cancer, you may qualify for 100% disability while you are being treated.
Side effects. I have to hit the "john" six to eight times a night and I take a daily pill to get my "crap" together as much as possible. I lift weights, but me arms and chest still got flabby. I get tired more easily. I can discribe EIGHT different colors of blue...ha, ha. Just kidding on the blue. Not fun, but beats the alternative. By the way, I* was with the Air Cav, 1968-69. III Corp.

Cherokee6
Posts: 32
Joined: Oct 2011

cptkenny,
Good luck on your journey. I too was in Viet Nam 68-69. I have tremendous respect for those of you that were out in the jungle. I was stationed at the Air Force Base where they stored all of the Agent Orange for the Country and worked on the flightline fueling the C123’s that sprayed it. I was diagnosed with a Gleason 9 stage T3b in December of 2009 and had the Davinci Surgery followed up with 45 Radiation treatments. Last month I was given my last three month hormone shot which will bring me to a total of 36 months on hormones. I also have been taking Biclutimide every day for the past year at the direction of my VA urologist. My PSA has remained >0.1. I will have another PSA test next month as well as a test for testosterone levels, which I assume is to determine a base line as they will continue to test PSA every 3 months to look for an increase.
My side effects have been typical, hot flashes, breast tenderness, incontinence, tiredness, weight gain, depression, loss of libido and general lack of energy.
I am curious if anyone else that has been on hormone treatment for three years has had a recurrence and how long it took for PSA to begin rising. My initial PSA was only 2.2. I am looking forward to regaining a somewhat normal existence after the effects of the last hormone shot go away in 3 months.

jogger
Posts: 47
Joined: Nov 2009

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

j22411
Posts: 8
Joined: Feb 2012

Erroneous post

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Mine was 9, had already spread and was told surgery was not an option. Had one Lupron shot and 40 radiation treatments. I was 52 then and am 59 today after being given maybe 2 years to live. I go the stress out of my life and know that is a major reason for my long survival. My psa was 24 when dx and is now well over 100 but I do not worry about it and see no long term benefit from further treatment as I choose a better quality of life over the side effects of treatment at this point. If your cancer has already spread then you need to think about quality of life alot because there are many side effects to any treatment. Do not stress about it and all the best to you.

RNOR
Posts: 4
Joined: Apr 2010

Hi 2ndBase: Thanks for your reply. Very GOOD INFO and well delivered. I just had robotic surgery 3-26-2010. Cancer had spread to one of my six lymph nodes harvested.
Had post-op PSA on 4-26-2010 and will find out my post-op PSA numbers are on 5-10-2010.

Thanks again for your supportive and candid testimony!!!

God Bless and...Success To You!!!

j22411
Posts: 8
Joined: Feb 2012

Erroneous post.

JoeKidd
Posts: 1
Joined: Apr 2012

My dad is 71yrs old.
He is somewhat obese and about 200 pounds and 5foot 9inches.
He is borderline diabetic and has high Blood pressure.

He does not have any major symptoms of prostate cancer other than a mild restriction in urination. No other pains.

He had a PSA of 160.
A bone scan was done which turned up negative.
His Gleason score was given as 6.
The Ca has spread to the lymph nodes and seminal vesicles.

Based on this, an orchiectomy was done 4 weeks ago.
His PSA reduced to 15, which was considered high considering the orhiectomy.

A more precise bone scan was done that identified metastasis in the right pedicle of D12 vertebra. His Gleason score was now mentioned as 8,9.

Are there any further tests that need to be done?
Should we wait for more time?
What are the treatment options?

Can you direct me to some reading material and also suggest a suitable approach?

Thanks!

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

Joe,

Welcome to the forum and I'm sorry that your father's condition finds you here. Hopefully you will gain some information that can help your father in the years ahead.

I would not be surprised to see future PSA scores continue to diminish below the present level. While the testes produce most of the testosterone in males some is also produced by the adrenal glands. You way wish to inquire about your father's testosterone levels from his latest blood test or ask for a T-level test the next time he goes in for a PSA reading.

I would get copies of your father's medical paperwork so that you can precisely know what his condition is and have it available should you seek second opinions in the future. The initial Gleason score you cited at 6 seems very unusual given that the prostate cancer spread to the seminal vesicles and lymph nodes. The later Gleason of 8/9 seems more on the mark but it would be useful to know what the rest of his pathology was before treatment.

As you probably know, an orchiectomy is a form of hormone treatment that is used to eliminate testosterone from the body which most prostate cancer needs to grow. After the procedure the cancer will probably stop growing or shrink for some period of time but as the cancer becomes progressively advanced, prostate cancer cells find other sources to fuel themselves and even begin to produce small amounts of testosterone on their own. When this occurs, the cancer will begin to spread again. There are other drugs available that may be effective in slowing this stage of cancer such as abiraterone (Zytiga) but there are many potential side effects that can occur. It is important that your father have regular PSA checks as an increase in the readings will be an indicator to his medical team that his cancer is becoming castrate resistant and trigger the use of drugs such as Zytiga.

Prostate cancer loves the bones, particularly in the spine, where your father's doctors evidently found mets. As the mets grow they may become very painful and radiation to these is often used a palliative treatment to alleviate the pain but it is not considered a cure.

Your father's borderline diabetes, excess weight, and high blood pressure also pose a serious threat to your father's long term health and fortunately these are fairly easy to address with diet and exercise. You might also investigate a diet that eliminates dairy and red meat which are often correlated to having chemicals and enzymes that fuel prostate cancer growth. In the United States our dairy and beef cattle are filled with artificial growth hormones and contain excess Insulin Growth Factors (IGFs) that can fuel the spread of cancer. Adopting a heart healthy diet that eliminates or significantly reduces protein from animal sources will not only help your father get to a healthy weight but it can very well help the body's natural immune system in fighting the prostate cancer.

Other things to be alert for after orchiectomy are hot flashes, depression, osteoporosis, and eventually brittle bones. Make sure he takes the supplements he needs and exercises regularly to preserve muscle mass.

Best wishes to you and your father as you battle this disease.

K

Steve199
Posts: 3
Joined: May 2010

norwood I chose HIFU as a first treatment. It's not done in the USA except with the FDA trials. Procedure was in Canada by a very experienced Dr. on 10-22-09. My 6 month PSA is .001. The first thing I think you need to do is do everything you can to see if its still in the prostrate then decide on the treatment. I went to Sarasota, Fla and had a MRI Telsa-3 done. It's like looking at your prostrate in High Definition. It's my understanding only five are in the USA and mostly at research Institutions. The Dr. in Sarasota is also a HIFU Doctor however; I chose another Doctor to do the HIFU procedure. I'm blessed that I chose the path I took and I'm greatly in appreciation to both Doctors for the knowledge I learned from both. After you have done all you can do in determining it's still in the prostrate then choose the best and most experienced Doctor with what ever method you choose in your treatment.

kev03103
Posts: 2
Joined: May 2012

who was the doctor in canada? kevin

sueanne1
Posts: 1
Joined: May 2010

Hi Norwood. My husband had a PSA count of over 4000 when he went into surgery five years ago. It went over 4000 again last year. His latest count is 749. He has prostate bone cancer and is doing very well. He is 74 years old, and we expect him to be around for the next five to ten years. Bob has gone through the hormone treatment at the beginning, along with radiation. When he came off of the hormone treatment he went through the chemo therapy for almost two years, then another round of radiation. the only thing that has caused him any grief was the Zometa he was advised to take. This has caused him nothing but trouble with his mouth. Two years ago he had an abscessed tooth and was treated for that and had the tooth extracted. The gum will never heal and the dentist is just waiting for the bone to rot out enough so he can get the bone out. Bob cannot go through a bone transplant using his own bone since he has bone cancer. Just keep yourself busy and keep your mind active, and you can live a long, healthy life. Do not give in to the cancer. Good luck, and God bless.

tonahawk899
Posts: 9
Joined: Jul 2011

Hi Sueanne and Husband: Your story and your husband are an inspiration to the strength of the human spirit and physiology! Thanks! I am Tony, you can read my story on Anthony S. Winterer YANA on google, it should be updated by tomorrow or Tuesday at the latest. At any rate, I am 63, married 42 years, Gleason 9 Human Being, receiving a robotic prostatectomy on May 21, 2010. This was followed by 4 months of Adjuvant Therapy, Radiation(IMRT) and Lupron with Casodex. My psa has recently climbed to .32, I was staged at 3b, and I hope to have a long life with my dear wife and sons and family. Thanks again for your inspiration, God Bless you both and your family.....Tony p.s I am scheduled for all the bone scans again, ct scan, and dexa scan on May 3, it has been 2 years! Please Pray for all of us!

tonahawk899
Posts: 9
Joined: Jul 2011

Hi Sueanne and Husband: Your story and your husband are an inspiration to the strength of the human spirit and physiology! Thanks! I am Tony, you can read my story on Anthony S. Winterer YANA on google, it should be updated by tomorrow or Tuesday at the latest. At any rate, I am 63, married 42 years, Gleason 9 Human Being, receiving a robotic prostatectomy on May 21, 2010. This was followed by 4 months of Adjuvant Therapy, Radiation(IMRT) and Lupron with Casodex. My psa has recently climbed to .32, I was staged at 3b, and I hope to have a long life with my dear wife and sons and family. Thanks again for your inspiration, God Bless you both and your family.....Tony p.s I am scheduled for all the bone scans again, ct scan, and dexa scan on May 3, it has been 2 years! Please Pray for all of us!

jbrick
Posts: 4
Joined: Dec 2009

Hi Norwood,

I found out during the holidays that I had prostate cancer with a Gleason 4x5=9. My PSA is not nearly as high but sky rocketed from the year before. I elected to not do surgery due to the fact that the chances of having additional hormone therapy and radiation was very high. At age 52 and if my Gleason wasn't so high I would have definitly gone with the surgery. I just had my 2nd hormone shot as well as a seed implants about 3 weeks ago. Like many others if there is a side effect from the hormones I have experienced it. You will come to understand that there are choices of treatments and just as many reasons why or why not chose one over the other. In the end it will have to be your decision based on as much information you can gain from specialists and based on your particular situation.
I wish you luck and whatever decision you make don't look back or second guess yourself, just make as educated decision as possible.

Trew
Posts: 891
Joined: Jan 2010

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!

FreddyJoe
Posts: 42
Joined: Dec 2010

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?

warren g
Posts: 1
Joined: Apr 2011

My Gleason score was 9 (4+5 or 5+4) don't remember, PSA was 4.26. Had surgery 2005, recurred(became detectable)2008. Had one hormone injection knocked the PSA to undectable.
Became detectable 2010,increased anti-oxidents and tailored my lifestyle to slow the progression.
Cancer is either environmental or genetic. Assume environment and make necessary adjustments, the status quo is not an option.

Good Luck

VascodaGama's picture
VascodaGama
Posts: 1528
Joined: Nov 2010

Warren
Could you share more info about your case?
What type of injection had you taken? Have you taken it with other drugs?
Why did you stop taken the injections?
What is your PSA now?
Have you given up in following treatments for advanced risk cases?
We all take anti-oxidants but there are concerns that they help in protecting cells “life”, both; benign and cancerous cells.

Welcome to the broad.
Wishing you the best.
VGama

rickgarvin
Posts: 2
Joined: Apr 2011

i had a gleason score of 9 and stage 3 cancer with a tumor in my prostate which had already started to spread into my vesticles and tissues. everybody even the dana fiber inst. said to radiate. i chose surgery but had a hard time finding a surgeon who would do it. i found the angel of my life dr. jim hu. of bringham and womens hospital in boston who was willing to do it. it was done 10/4/2010. it was so radicla that he took all my tissues and both vesticles. pathology report was excellent and i even had negative margins which is unheard of these days. now i'm going thru radiation treatments as a precautionary measure since i am still at high risk. remember if you choose radiation and the cancer comes back,you cannot radiate but if you choose surgery and the cancer comes back,you can have radiation. so that was a no brainer to me. this dr. is on the ctting edge of the da vinci robotic surgery. he has definitely saved my life so i would choose surgery

good luck

rick

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

Rick,

Welcome to the forum. I understand why most urologists would not choose to perform surgery with your diagnosis but you evidently felt otherwise and eventually found a surgeon to meet your needs. I think your bold and aggressive stand for your own desires is one that more men ought to emulate. Although I am not sure I would have followed a similar approach with your diagnosis, I certainly applaud your attitude and perserverence.

By the way, your generalization about radiation is not really correct. While some types of radiation preclude follow-on treatment, new radiation technologies frequently allow additional radiation if the conditions warrant. This is a result of evolving technologies that allow for extremely accurate dose placement in the cancerous areas.

I hope you continue to be cancer free and suffer no adverse side effect.

Best,

K

rickgarvin
Posts: 2
Joined: Apr 2011

thanks kongo

my thinking was that if cancer cells go after your testosterone which is in your prostate then get rid of it completely. plus radiation would of just shrunk the tumor. my cancer would of inevitably came back.so i had them both taken out. the 1 down fall of all this is that my erectile disfunction will never be normal again unless i go and have major surgery for implants since all my tissues were taken during the operation. so for me you can radiate til the cows come home but unless you get rid of the prostate where the cancer is living, it will keep coming back.

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

Rick,

You were faced with a difficult set of decisions when you were diagnosed and I'm happy that you were able to find a medical team that worked within your priorities.

A couple of your statements are somewhat confusing to me. Cancer cells don't really go after testosterone and I guess I am not sure what you mean by that. Testosterone is the chemical trigger at the molecular level that causes cancer cells to grow. Without testosterone prostate cancer cannot survive. Testosterone is not just in your prostate. It's a powerful stimulant for both men and women and it exists throughout the body and triggers many things such as the sex at birth, the ability of men to achieve intercourse, the desire for sex, sexual preferences, personality, aggressiveness, emotions, and is the tigger for puberty in males.

In males, testosterone is produced in the testes and by small percentages in the adrenal glands. In women, testosterone is produced in the ovaries and adrenal glands. Testosterone is not produced in the prostate.

Removing testosterone is one way to slow prostate cancer growth but its not done by removing the prostate. The only way to surgically eliminate testosterone is to undergo an orchiectomy which is the removal of the testes (castration). Interestingly, one report I read indicated that there is absolutely no history of prostate cancer among eunuchs. The other way to remove testosterone is through hormone therapy, which blocks the chemical interaction between testosterone and cells.

Contrary to what your post implied, removing the prostate doesn't get rid of testosterone. If you still have your testes and are not taking hormones I would bet you a bottle of Grey Goose vodka that you have a testosterone level showing in your next blood work.

Radiation doesn't "shrink" cancer tumors, it kills cancer cells by altering the DNA so that these cells die when they try to divide. Sometimes it takes a couple of cell generations for this to have effect but these cells are not shrinking, they're dying. In older forms of radiation, cancer recurrence percentages was about the same as in surgery in that about 35% of men saw recurrence after treatment. Newer methods of radiation have been able to increase the dosage levels through extremely accurate targeting and are much more effective in killing prostate cancer cells than the older forms of radiation. (Not all cancers react the same way to radiaton). In some recent studies for men five or more years out from undergoing these newer radiation treatments, more than 90% never see a recurrence. So, even with a prostate and the cows coming home, the cancer does not keep coming back.

Some recent reports have shown indications that surgical removal of the prostate in conjunction with radiation treatment has been effective in treating advanced stages of cancer like you had when you were diagnosed. I don't think radiation you're receiving is purely a precautionary measure. I am sure your medical team felt, despite the negative margins, that given the stage of your cancer at diagnosis that there was a very strong possiblity that the prostate cancer had spread from your prostate gland to the surrounding tissue and that the radiation is designed to kill these traveling cells.

I never had to make the tough choices you did. My cancer was detected early and was relatively low risk. I do hope that you continue to see the results you wish for. I hope you investigate the implant option as well...to me at least, the sexual aspects of life are a significant factor of overall quality of life and I don't expect to ever get too old for it.

Best to you,

K

hoovey
Posts: 1
Joined: Apr 2011

Had a psa of 45 in March 2011,a prostate biopsy April 11 with the results today of a gleason score of 9 and positive for cancer in all 12 samples taken. I am scheduled for a full CT scan on Friday and a full body bone scan. Has anyone gone through a similar scenario and what information is available to make decisions? Apparently the doctor said we really can't consider options until we get the results back from the scans. I would like to be as informed as possible so when that time comes next week I will have some knowledge of what can be done. He said that if the cancer has left the prostate there is no need to remove the prostate. Guess my thinking is if the prostate is full of cancer cells, wouldn't it be good to get rid of them?

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

My situation was much like yours and I was given a 50% chance to survive two years. That was 7.5 years ago. Today I am in hospice care with tumors throughout my body, but I still work two jobs garden and play golf.

My treatment was one shot of Lupron followed by radiation. That was 7 years ago and I have refused any treatment since to maintain the quality of life. The radiation did kill all the cancer in the prostate. This was confirmed by a second biospy about 3 years ago. Surgery should be avoided if the cancer has spread and from the sound of it yours has. It is

doubtful that the scans will find anything but they like to run tests.

MITCH 55's picture
MITCH 55
Posts: 7
Joined: May 2011

I have a Gleason score of 9 and recently had the CT Scans, Bone Scans, Xrays, etc. to determine if it has spread. Get the results today at 2:30 pm. Hoping and praying for the best. I am 74 and the Doc has hinted that surgery is not an option. Y'all keep the faith.

MITCH 55's picture
MITCH 55
Posts: 7
Joined: May 2011

Had very good news on Friday the 13th. Bone scan clear and the CT scans were very good except for some suspicious lymph gland images. Going to Savannah for some kinD of nuclear test next week. Feel good and the outlook is good....the doc termed it cautiously optimistic.
KEEP THE FAITH

MITCH

MITCH 55's picture
MITCH 55
Posts: 7
Joined: May 2011

PSA 4 Gleason 4+5+9. Bone and CT scans all good but suspicious pelvic lymph glands. Insurance balking at further testing...some kind of nuclear tracing scan. Doc is going to talk to the insurance people. In the meantime I am having no treatment of any kind. Rather perplexing when you are sitting here with cancer and you are doing nothing about it. Oh well. Gave up golf about a year ago because of back and hip pain. Now think that it was the prostate cancer causing the pain.
Ya'll have a nice day and KTF.

Mitch

avidity
Posts: 5
Joined: May 2011

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..

tng
Posts: 1
Joined: Jun 2011

Avidity,

My dad is 74 and got the same situation as your dad, he was just diagnosed with gleason 9 and PSA of 1880 last week, he had very bad pain with his bone as bone scan discovered that he has the cancer cells metastased to several areas like the hip, shoulder, scapula, femur.....

he was hospitalised for excision of testes and creation of channel to help his urination and surgery will be done tomorrow. Our doctor told us it si already a late stage and study showed that the median survival rate is 2yrs. It's a shock to the whole family and I am very sad to hear that. He is now on morphine for pain relief and doctor said we have to see his PSA, if the PSA dropping well after surgery, it means that the cancer spread is under control. But he warned us to keep an eye on dad to prevent any bone fracture as it will create big complication.

I have consulted oncologist who told me to follow my urologist hormonal therapy. We chose testes removal as my dad need surgery for channel creation for urination. But study showed that hormone injection has the same result as testes removal. complication of hormone injection is it may affect he heart, but it is rare and my doctor said some patients do not have cardiac problem after a few yrs of injection.

Take care and don't panic, discuss with the urologist for advice.

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