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advanced prostate cancer gleason 9

Gleason 9 fight...
Posts: 14
Joined: Sep 2016
VascodaGama's picture
VascodaGama
Posts: 2957
Joined: Nov 2010

It seems that you forgot to press ENTER. I do not know about your story but I would suggest you to read the posts of other Gs9 patients. Here is a list;

https://csn.cancer.org/forum/126/search?t=gleason+9&k=&=+Search+

Best,

VG

Gleason 9 fight...
Posts: 14
Joined: Sep 2016

thank you for your response.  Forgive me I am a computer dummy.  I wrote a blog but no response.  So Ill try this again.  My boyfriend has a PSA of 48 and a Gleason grade of 9.  He is scheduled for CAT and bone scan this week.  
So much has happened in the last five weeks since news of PSA .  No symptoms at this time, however, the news has been devastating for both of us.  Fear of the unknown a big part.  We both work 60 plus hours a week and this really has had a profound effect on both of us.  We are both trying to be hopeful and positive but it is like and emotional roller coaster.  He says it feels like a death sentence, and he is also very concerned about his man hood.  I have done much research but thought it would be nice to talk to real people and their experiences.  

 

Will Doran
Posts: 207
Joined: Sep 2015

Hi Gleason 9

Sorry to hear of your boy friend's situation.  I was diagnosed 3 years ago with  PSA of 69, with a gleason of 7...  I had no symptoms, either.  Had Robotic Assisted (DaVinci) Surgery in Dec 2013.  Then, Lupron hormone therapy and 8 weeks of Radiation.  PSA went to <0.010 (undectable) and has remained in the Undetectable range since.  They knocked my Testosaterone down to 17.  Normal is 250 - 1,100.  My "T" levels have come up to 320 as of my last tests, and the PSA has come up a little bit to 0.035.  But that's still considered undectable.  We are watching that PSA count and will see where we are in 4 months.  If needed I will have to go back on HT.  However my doctors hope the PSA will level out and settle in at the level it is at right now.  But time will tell.

So, study all the treatments & options for treatment.  Fight like the devil.  It's a hard fight, but there is hope for some help.  The side effects of treatments can be (and where I for me) pretty rough.  But I'm feeling much better now. 

Love, Peace and God Bless

Will

Gleason 9 fight...
Posts: 14
Joined: Sep 2016

thank you for sharing your story.  He gets the cat and bone scan next week then appointment with his urologist.  We are also going to see an oncologist.  His urologist has already stated that he feels radiation will most likely best the best treatment plan.  they also want a third PSA blood test.  Its been five weeks and I can already see the toll it is taking on him.  He is in great shape and other wise very healty.  He works 60 plus hours a week and refuses to slow down in anticipation of work he may have to miss in the future.  It is such an emotional roller coaster and the unknown is frustrating.  Will keep you posted. We will fight like the devil because that is what cancer is it's evil.  I refuse to let this very special man loose this battle.  Now if he could just believe that it would be so helpful.

Glad you are feeling much better.

best wishes,

G9

 

VascodaGama's picture
VascodaGama
Posts: 2957
Joined: Nov 2010

I am sorry about your friend. I also thought that I had received a “death sentence” when diagnosed 16 years ago. The Gleason 9 is high risk cancer but usually treatable. Cure depends on the patient status and disease advancement. The tests he is scheduled for this week will help in identifying his clinical stage. Even if all gathered information do not provide the real status of the disease one should think in a treatment that he feels comfort with.

I read your blog and would like to know more details of his diagnosis.  Can you tell his age?
What about the PSA result of 5 weeks ago?
How many needles of the biopsy were positive to cancer and what was the Gleason grade (4+5 or 5+4)?

I have posted to another Gs9 member of this forum a few days ago which comments I would suggest you to read. His case is different but it serves an example of a Gs9 case also with an initial high PSA.
https://csn.cancer.org/node/305356

Will Doran above had a lower Gleason but high PSA and he decided to follow an aggressive treatment combining surgery with radiation and hormonal therapy which worked well for him. Some other guys with advanced status did surgery alone and waited for recurrence to follow the sequential according to timely needs. Some others preferred to treat with intent at cure giving preferences to the therapy that would provide more assurances to reach the purposes. Others look for quality of life so that they prefer to use palliative therapies such as hormonal manipulations with intent in controlling the advance of the cancer (not cure).

The seminal vesicles involvement in your friend’s case indicates spread out of the gland. The metastases could be localized (at the vicinity of the prostate gland) but it could have spread further, typically to the lymph nodes and upper chest (in very advanced cases). This is the missing information that his doctor is trying to find.

Radiation treatment may be the best option to him. Surgery provides cure when the cancer (PCa) is whole contained in the gland. Dissecting the gland would remove the cancer from his body. However, if metastases exist then surgery would be used in the intent of debulking the “biggest” tumor, making it necessary of additional treatments to hold the metastases. This is the typical example of a therapy of Will Doran above. In any case, treatments for PCa involve risks and side effects that can turn things nasty. I would recommend you to read about that googleing “Prostate can treatment side effects”.

This link summarizes the matters of prostate cancer, which you may see it helpful;
http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

Diet and a change in live tactics become important to counter the treatment effects. Physical fitness programs and proper nutrition are essential to better deal with the problem. This link may be helpful;
http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

I think that survivors here can help you greatly in understanding about the problem. Just provide more details of his case and the results of the tests.

Best wishes and luck in his journey.

VGama

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Great that you are supporting him.

Not a death sentence, however, research is required so the best choice of treatments can be determined.

USTOO.com is an international organization that supports local support groups....suggest that you go to the site and determine a support group closest to you.

Great that you are seeing a Medical Oncologist......this person is critical to your medical team, and is best qualified to lead the team.

I wonder if you have the details of the pathology of your boyfiends biopsy that you can post, so we can give directed comments.

It is probable that with a Gleason 9 the cancer has escaped the prostate, and your boyfriend may need hormone treatment only; and may not need a combination of radiation and hormone treatments.....analysis of his diagnostic tests will provide necessary information for treatment.

The bone scan is a critical test in your husbands case.

There is a T3 MRI that provides better definition than a CAT scan, and is the better diagnotic test...The CAT scan is not the best diagnostic test for prostate cancer.

(Basically the MRI provides finer resolution than the  cat scan, and is more effective in determining if the cancer is outside the prostate}.

 

here are some studies from pubmed about mri's and a high tech pet scan

multiparametric mri t3 

The impact of Magnetic Resonance Imaging on prediction of extraprostatic extension and prostatectomy outcome in low-, intermediate- and high-risk Prostate Cancer Patients. Try to find a standard.

http://www.ncbi.nlm.nih.gov/pubmed/26154571

The impact of multiparametric pelvic magnetic resonance imaging on risk stratification in patients with localized prostate cancer.

http://www.ncbi.nlm.nih.gov/pubmed/24785987

Preoperative 3-Tesla multiparametric endorectal magnetic resonance imaging findings and the odds of upgrading and upstaging at radical prostatectomy in men with clinically localized prostate cancer.
http://www.ncbi.nlm.nih.gov/pubmed/23040223

 Please keep on posting with your concerns and questions. We are here for you.

foamhand
Posts: 74
Joined: May 2016

Hi, sorry for the diagnosis but it is not a death sentence. It can be treated. I am 55. In my case I was gleason 9 in almost 100% of the prostate and it had spread to a few nearby lymph nodes and a small metastasis to my right hip femoral neck. I was referred to and accepted at Huntsman Cancer Institute in Salt Lake UT for a clinical trial of combination therapy of Lupron and TAK-700 investigational drug. NO chemo or radiation (yet) and I have experienced a dramatic drop in PSA in just 3 months. All my doctors say I have many years left and hormonal therapy alone can work for years. It does have some unpleasant side effects, but I find them tolerable.

Ask your doctor if there is a university hospital or research clinic near you conducting a clinical trial of this drug combo and if it may be a fit for you. It is my understanding that it is having reasonable success and they may be expanding the number of applicants they will be taking. The clinical trial protocol# is SWOG 1216. It is being overseen by Dr. Neeraj Agarwal of Huntsman Cancer Institute. Of course, you and your doctor will have to decide what's best for you.

As far as the manhood / romance is concerned, in my case it is an unfortunate loss in my quality of life but I am in such great shape otherwise, that being alive and active suffices for me. My partner and I find ways to be intimate without sex and we seem to be adjusting fine.

Keep a positive attitude...there's quite a bit they can do for prostate cancer these days.

foamhand

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3225
Joined: May 2012

Welcome, Gleason.

As you learn more about your friend's diagnosis you will need to provide more information to get focused insights from the guys here. How old is he ?  His general health ? His workload suggests that he has been well, but we here really don't know.  It is to be expected that he, and probably you also, are currently in shock and information overload, but things will stabilize, very likely.

By themselves, a Gleason of 9 and PSA that high strongly suggests aggressive disease that very likely has escaped the gland.  But prostate cancer (PCa) is a slow disease. I read last year that even metastatic Stage IV disease has an average survival time of over five years.  With current hormonal therapies (HT) men with Stage IV PCa commonly live over ten years.

Your urologist is correct: surgery is almost certainly a bad choice in his case.  If his situation is potentially curable, radiation will be the primary tool. If his situation is judged past curable, he will almost certainly begin HT, possibly with or without radiation therapy (RT).  Chemo is an end-stage tool agains PCa, not usually employed until HT has stopped being effective which, as I said, commonly takes ten or more years to transpire.

As most writers already noted, his should not be regarded at this early point as a 'death sentence,' and even a worst-case scenario very probably gives him years, if not a decade and or more.  And curative treatment is not beyond the realm of possibility, given what is known this far.  

'Manhood' can be variously defined. One definition is to be a fighter and survivor.

max

Gleason 9 fight...
Posts: 14
Joined: Sep 2016

Thank you to every one who has responded to me.  I am requesting copy of pathology next thursday when we go for consult with urologist for treatment.  Scans will also be done next week so I can provide more precise details.  I heard that there is two ways to deal with Cancer.  Lay down and take it or stand up and fight.  He has decided to fight.  One hurdle behind us.  Will post more information when it becomes available.  Best wishes to everyone.

Gleason 9 fight...
Posts: 14
Joined: Sep 2016

Hello everyone have copy of gleason path.  Seven biopsies One 4+4 the rest 4+5.  He did bone scan yesterday and ct scan today.  We see urologist tomorrow.  Our second opinion has fell through they can't see him for four more weeks.  I have contacted CTCA and his insurance will cover treatment there.  We would , however, need to go to Phoenix.  We live in California.  Not sure what the difference between 4+5=9 or 5+4=9.  Someone asked me that question.  I am coming to a point where I am able to have hope mostly because almost done with unknown.  So I know what we are up against.  My boyfriend is not even close to being hopeful.  He is starting to fall apart.  I'm sure this is a normal reaction that he needs to go through but its very hard to watch .  I support him in every way I can and try not to show him how worried I am.  

Gleason 9 fight...
Posts: 14
Joined: Sep 2016

Forgot to mention they took seven core samples all were positive except one.  

VascodaGama's picture
VascodaGama
Posts: 2957
Joined: Nov 2010

Gleason 9,

You are wonderful. Your boyfriend is very fortunate to have you on his side. Can you provide his age and information on any symptom?

Gleason score is the sum of the two highest Gleason grades/partterns found by the pathologist. The first number signals the most voluminous where the second is the less volumious. Scores go from 2 (1+1) to 10 (5+5) and Grades go from 1 to 5 varying according the aspect/characteristics of the cell, from well differentiated (very similar to a normal shaped cell) to poorly differentiated (without any aspect of a normal cell). Accordingly, 4+5=9 is not as aggressive/risky as 5+4=9.

For more details please read this; https://en.wikipedia.org/wiki/Gleason_grading_system

Your boyfriend got high risk voluminous cancer that may be very aggressive. It is difficult for anyone here to recommend a therapy but from clinical trials it was observed that combination therapies are better to counter those type of cases. Hormonal (HT) plus Radiation (RT); or Chemo plus radiation; or a combination starting with the debulking of the gland, and later HT +RT.

I would wait for the results from the scans and with the details in hand procure a second opinion from other specialist. You can also inquire at clinical trials using the latest expensive drugs not yet available in most hospitals. These are safe and free of charge. Here you can find a list of trials for risky cases;

https://clinicaltrials.gov/ct2/results?term=aggressive+prostate+cancer&Search=Search

Best wishes,

VG

  

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