gleason score of 9

jbrick said:

Gleason 9
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.

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!

warren g said:

gleason score of 9
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

Warren, could you share more info
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 said:

gleason score
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

Welcome Rick
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 said:

thanks kongo
my thinking was
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.

Tough Situation
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 said:

gleason score 9
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?

Treatment
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.

lewvino said:

Sheila and others....I hope
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)

Viet Nam
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 said:

MITCH55
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.

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.

Gleason 9
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 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..

Avidity,
My dad is 74 and
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.

MITCH 55 said:

Hormone Therapy
I am 74 years old and have a 9 Gleason score. I am on hormone therapy and had my first shot about 6 weeks ago. The only side effects that I have experienced so far are frequent hot flashes and night sweats. I don't like the hot flashes but feel it is a small price to pay if it works. It is supposed to have the same effect as having the testicles removed...stop the testesterone to stop the growth of the cancer.
Good luck with whatever treatment is chosen.

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