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Gleason score of 9

Lori63
Posts: 9
Joined: Jan 2020

My husband is 63 and was just diagnosed with aggressive prostate cancer.  His Gleeson score is 9,grade 5. They gave him 2 shots of degarelix in his stomach.  We just saw a surgeon today who said not to remove prostate.  He told us to go to a cancer institute.  We have an appointment on Monday for a bone scan and a cat scan. Then on Friday we have an appointment at Memorial Sloan Kettering on Friday. Hopefully someone here can give some help in what to expect and if you have the same score and grade how you are doing. My husband brother died last year of the same disease.  We are scared and nervou. Thanks for any information you can give.

eonore
Posts: 89
Joined: Jun 2017

Can you tell us what his PSA score is?  Your surgeon gave you excellent advise about going to a cancer center, and Sloan Kettering is one of the best.  It is entirely possible to have an aggressive cancer that is still confined to the prostate, and therefore treatable and possibly curable.  And even if it has escaped the prostate but is still localized, it may be curable with radiation.  The important thing is not to get ahead of yourself with worry.  The scans will provide useful information to help you in treatment choice.  Stay positive and see what Sloan has to say.

 

Eric

Lori63
Posts: 9
Joined: Jan 2020

His Psa was 55 in January,they haven't taken it again.  It was going up every 2 weeks, it stated at 4 in December then went To 9, then went to urologist January 8. His biopsy was on January 30th.

Georges Calvez
Posts: 440
Joined: Sep 2018

Hi there,

That sounds a bit nasty but PSA scores are only indicative, they do not relate that well to what the cancer is really doing.
You need to wait to see the scans to find out what you are dealing with.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3191
Joined: Nov 2010

Lori,

I am sorry for the diagnosis.

Gleason 9 is aggressive and the fast increase of the PSA may indicate that the cancer has metastasised to lymph nodes. The CT and BS scans have limited capability in detection but they will help in judging your husband's status.

His doctor's recomendation for not proceeding with surgery is based on the results of the biopsy. Probably they found numerous positive cores with some indicating extraprostatic extensios. I wonder about the reason that took your husband to visit the urologist. Did he have any symptoms?

In this forum you can find the reports of many survivors with Gleason score 9. The treatment varies depending on the status of each patient but the majority choose radiation therapy solo or in combination with hormonal treatment. In severe cases or when the patient is young, doctors may recommend a combination of surgery plus radiation, treating aggressively. The hormonal therapy (Firmagon) will provide some control on cancer activity but it is the radical therapy that will blow the bandit.

All treatments have attached side effects so that your husband needs to care to its influence on other health issues. Bone health (osteoporosis, etc) and existing cases of colitis requires attention previous to the treatment. I recommend you to discuss with the doctor at MSK on having a dexa scan and colonoscopy included in the protocol. Do your investigations and prepare a list of questions for the next meeting.

I believe that your husband knew about his risk in having prostate cancer due to the incidence in his family. Unfortunately your children are also at the same risk and should be more vigilant against prostate and breast cancer as these share the same genes.

Best wishes and luck in this journey.

VGama

Lori63
Posts: 9
Joined: Jan 2020

Thank you for your reply. My husband went to his physician for his yearly blood test. The results came back with a Psa of 4. He went back 2 weeks later and it was 9. That is when his Doctor sent him tohe urologist.  He did not have any symptons.Three cores had cancer 2 where 4 + 5 and 1  was 4+3.  Two of the cres said perineural invasion present. Pathological stage says capsular penetration 39, seminal vesicle 17, and lymph node 9. I don't understand some of the findings but it seems like it's not good.  Today are the scans the Friday the Oncologist appointment at Sloan Kettering. We will see where we go from here. Any advice will be helpful.

VascodaGama's picture
VascodaGama
Posts: 3191
Joined: Nov 2010

Lori, You are welcome. Gleason grades 4 and 5 are aggressive but treatable. The comments in the pathological report regarding capsular penetration, seminal vesicles and lymph nodes invasion, are prognostic factors used by a group of pathologists (not all do that) which have been set from further investigation on the biopsy specimen (existing proteins) to help the urologist in deciding on a clinical stage. The numbers represent values in a scale of probabilities. To such regard I hope that the doctor at MSKCC will explain its meaning and that you get peace of mind. So far, the diagnosis is for prostate cancer. The scans will add information on cancer's location. From these data the urologist will define on a clinical stage to recommend a therapy. You and your husband should not rush and decide on a therapy solo based on the MSK doctor's opinion. You should take your time and get second opinions. Prostate cancer does not spread overnight. Prepare a list of questions to the doctor and get the answers and read about the details of each option. Treatment got attached side effects that will prejudice your husband's quality of life. Study all and decide in something you both feel comfortable with.

 

A link to help you to prepare your list of questions;

https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html

 

Best wishes,

VG

Lori63
Posts: 9
Joined: Jan 2020

Thank you for the information. i will print out the questions to bring to Sloan Kettering.

graycloud
Posts: 42
Joined: Jan 2018

My husband was diagnosed with Gleason 9 over 2 years ago.   We live in TN, and he went to Memorial Sloan Kettering in NYC for consult and surgery.  Best decision we could have made.  If you can search my user name, I have posted several times on his success story.  Post surgery, he was downgraded to a Gleason 7.  We are eternally grateful for the expertise in Prostate Cancer treatment at MSK.  They will want to run his biopsy through their systems and come up with their own diagnosis and plan.  My husband's surgeon at MSK was Dr. Behfar Edhaie.  I would also encourage you to have Dr. Epstein @ Johns Hopkins review his biopsy for his score and grading after your MSK visit.  Make sure there is enough tissue for MSK first.  I will pray that your outcome is as good ours.  I will try to find my previous posts and copy here.  I'm swamped at work, but wanted to give you and your husband encouragement and hope. Don't google too much on Gleason 9 at this point.  Hugs. Patti

graycloud
Posts: 42
Joined: Jan 2018

My husband's surgery was 1/31/18.  Fast forward to a year later, and he is doing fantastic!  Cancer Free.  Best physical shape of his life.  Full recovery with very minimal side affects that I feel really aren't side affects!   It's amazing to look back at the journey we've been on.  I am hopeful this story will help anyone new to this board to see that positive outcomes are achievable and realistic with prostate cancer.  Don't be discouraged.  Do your research. Don't be intimidated by the big hospitals/cancer centers that can provide world leading care.  

To bring everyone up to date:

My husband's father was diagnosed with prostate cancer over 26 years ago.  Therefore, my husband has been tested yearly since age 40.  Around age 52, his PSA started a slow elevation. His urologist was concerned once his numbers got above 4, and pushed for a biopsy.   In lieu of having the "big" biopsy, he chose to have Dr. Joseph Busch do several MRI's, and two MRI guided biopsies - Active Surveillance.  All showed nothing of concern. We trusted Dr. Busch to find the cancer - his reputation is stellar.  Over 2 years his PSA rose from 4.2 to 7.9.  (FYI -PSA results -  1/12/15 - 4.2; 02/03/15 - 6.0; 11/18/15 - 6.066; 06/30/16 - 6.4; 01/19/17 - 4.3; 04/27/17 - 7.86; 08/04/17 - 7.9; 08/25/17 - 7.79 - just wanted to show that his results did fluctuate up and down)  The last MRI still led to " inflammation.  My husband's local urologist pushed, and pushed, and pushed until my husband met with the oncologists in his group to do further testing - genetic testing, 4Kscore, various antibodie testing. The 4Kscore showd 92% probability that patient will not have aggressive disease on a prostate biopsy, and scored 8% which led to recommedation of a full prostate biopsy . His urologist pushed and pushed (we were about to leave the practice because of his worry wort attitude), and Jim decided to have the full biopsy to get the doctors off his back - thinking it will show nothing. 

10/13/17 - Friday the 13th - he had the big biopsy.  12 of the 14 biopsies were negative.  2 were positive.  Original grading was 3+3 and 4+3. Never forget that day.  Research after research led to a visit to Dr. Behfar Edhaie at Memorial Sloan Kettering to see if he qualified for an Ablation Study. We initially met with him first week of November.   He also applied to Mayo.  He was accepted in to both.  We also reached out to Futterer Jurgen at Radboud University Nijmegan Netherlands for ablation therapy as well, and was accepted.  We knew we would not stay local for surgery - too much to risk on side affects from surgery at 56 years old. 

Due to my husband's father having barbaric surgery over 26 years ago, he was beyond devasted at the thought of a prostatectomy.  He knew first hand the side affects his dad has endured since surgery.  So, ablation therapy was the way he wanted to go.  Memorial Sloan Kettering wanted to run Jim's biopsies through their pathology department.  We decided to have Dr. Epstein at Johns Hopkins do the same.  With enough left over, same with Dr. David Woodrum at Mayo.

Another blow came with all 3 coming back with a diagnosis of Gleason 9.  Apparently, the local oncologist hit gold with his biopsy by hitting this Gleason 9 at early cellular level.    I cringe to think if he had not "hit the right spot" - where we have been in another year or two?  We are beyond thankful for the worry wart urologist that I feel saved my husband's life!   Wtih this diagnosis, my husband hit rock bottom.  He had listened to Dr. Busch discuss prostate cancer for over 3 years during active surveillance.  Gleason score of 9 is not what you want with prostate cancer.  We both knew this was serious. 

So, this threw my husband out of the ablation studies, although Dr. Futterer stated he could still do ablation with removing the majority of the prostate but save all of the nerve bundle.

Dr. Behfar Edhaie at Memorial Sloan Kettering talked at length with my husband.  My husband felt confident with his surgical techiques for nerve sparing robotic removal of the prostate.  He did research on number of procedures, outcomes, etc.  Plus Dr. Edhaie is one of the highest funded research oncologists  - he eats, breathes, and sleeps on ways to improve techiques/cures.  So, we opted to go with the removal of the prostate via robotic surgery.  This led to meeting with other specialists at Memorial Sloan Kettering.  Bladder specialist, Dr. Jaspreet Sandhu,  to talk to Jim about incontinence issues and how to overcome post surgry.  I cannot stress enough about going to physical therapy PRE-surgery and POST surgery.  We met with Dr. John Mulhall - probably the worlds leading authority oncologist specializing in ED.  Started therapy pre-surgery to help increase blood flow to the area, and build up muscle.  The doctors will prepare you for the worst - so there were mind games to get over after meeting with those two specialists.  But the advice and protocols they started prepared his body for surgery. 

On 1/30/2018, my husband had an 8 HOUR surgery to remove all lymph nodes, prostate, seminal vessels, etc.  Dr. Edhaie took his time to go ml by ml to preserve the nerve bundles and make sure all of the areas surrounding the prostate were "clean".   I left Jim at 11:45 am, and did not see him until midnight. Longest day of my life ever - especially being alone in NYC away from family and friends.  All of the intial pathology came back great.  Nothing had breached outside the prostate.  Initial lymph nodes were clean.  Bladder clean.  Seminal vessel clean. Post surgery he was downgraded to a Gleason 7 which was our hope. 

We spent 10 days at the Hope Lodge in NYC. This is the American Cancer Society's hotel that will provide free lodging to cancer patients.  What a Godsend for sure.

He was discharged around 10:00 that morning after surgery - so less than 24 hours. (MSK's surgery center is state of the art.  Beautiful facility.)  It was an effort to get him comfortable post surgery, but it was bearable.  The catheter was his main enemy.  He hated it.  We did venture outside to the streets of NYC with his leg catheter, but he did the majority of his walking in the halls of the hotel.  His catheter came out on day 7 after begging the doctors to take it out.  We flew home on day 10.  

He was able to walk 3 miles around the surgery halls two hours after coming out of recovery.  Walking helped with the pain from the gas they use during surgery.  Day 3-Day 4 are the worst for pain.  Then after that, so much better.  But walking is key to alleviate pain - even with the catheter.

As a note, his surgeon does not rush in to surgery.  It takes your body/nerves 3 full months to recover from a biopsy.  In order to have the best possible results from nerve sparing techniques, you have to prepare the body.  He had to lose weight, get in the best physical shape of his life, and change bad habits to good habits.  He lost 40 lbs. pre surgery.  He's at 70 pounds down now.  We exercised 7 days a week together pre-surgery.   This helped him so much with recovery.  And this mindset continues today - he still works out 7 days a week. 

It was an awful mind game to wait almost 4 months for surgery.  He had a bone scan in between to alleviate his mind the month before surgery. This helped to get him through the holidays and final weeks before surgery. 

My husband has exceeded all timelines on recovery.  He went back to work 1/2 days day 11 and 12.  He could drive once the catheter came out.  He could exercise with weight limits right after surgery.  They approved elliptical machine without arm movement 2nd week.  He attended a board meeting the week after, attended my daughter's volleyball tournament 2nd week out of state.  Started traveling again for work.   Less than 4 months post surgery, we were walking miles through 8 different countries in Europe without panicking looking for bathrooms, etc.    Looking back, it's amazing how well he did immediately after surgery.  The first 3 months - it was a slow process but physical therapy 3-4 times a week gave him goals to work on, encouragement, and steady improvement on incontinence.   We learned what products to use during the temporary incontinence (TENA Mens brands - online only) , as well as most comfortable boxer jocks to wear.  That was a change for him, and he hated it, but I found some brand that he absolutely loves and will keep on using now.  Under Armour and Duluth Trading Company. 

He is dry now except when he lifts weights so he wears a very light pad when working out with weights.  ED issues - there are none - everything works fine!

I am so proud of my husband's determination and strong will over the past year to beat the odds against prostate cancer as well as the post surgery side affects.  Granted, this personality made it difficult to handle the lows of the journey but it also made him work harder to achieve every goal set. 

Jim1961
Posts: 12
Joined: Sep 2019

Lori - everyone on this forum and thread has provided excellent information and all have helped me through my process as well.  MSKCC is a great place that I also considered for my procedure before ending up at Penn Medicine.  I also explored John Hopkins as they are excellent as well.  I wish you and your husband all the best and echo many of the suggestions from the great people here - get a second opinion and decide togehter what the best options are for you after you have the results of further testing.

Lori63
Posts: 9
Joined: Jan 2020

We just got the results back from the bone scan, it has spread to his bones. We are devestated.  We meet with a prostate surgeon who told us he cannot have surgery and to go to a big cancer institute.  We are meeting with oncologist Dr. Andrew Laccittii from Sloan Kettering on Friday.  We will hopefully have a plan for treatments. Thank you all for your suggestions and helpful information.

Georges Calvez
Posts: 440
Joined: Sep 2018

Hi there,

Metastatic prostate cancer can be treated more or less successfully depending on the extent of the disease and the health of the patient, etc.
There are men who live for more than a decade with metastatic cancer.
Every patient is a statistic of one, we have some long term survivors that had very advanced disease, high PSA, etc at the onset of treatment and they are still here
One of my doctors, that I christened Eeyore after the depressive donkey in the Winnie the Pooh stories, was always predicting that my PCa would return soon.
So far I have dodged the bullet!

Fingers crossed!,

Georges

Lori63
Posts: 9
Joined: Jan 2020

Thank you so much this gives us hope, the more I google the scarier it gets.  My husband is a strong healthy man and hopefully he can live for more than a decade. i am glad you are doing well, and hopefully my husband will too. Thank you again.

Lori

 

VascodaGama's picture
VascodaGama
Posts: 3191
Joined: Nov 2010

Hi Lori,

Sorry for the news on the bone lesions. I wonder how extensive the metastasis exist and their location. The typical treatment of choice is ADT (hormonal therapy) which is palliative, but when the lesions are fewer in  number and in convenient locations one has the possibility in treating with spot radiation (curative intent).

Dr. Laccetti is a medical oncologist. He may prefer recommending palliative approach (chemo or hormonal) but you can inquire on the possibility of a combination of ADT plus RT, or even request for a second opinion (a second look on the bone scan film) at the MSK radiation department. Many other factors could cause bone lesions.

Another aspect for inquiring is about existing bone loss. I recommend you to discuss on the need of bisphosphonates, if any. Had to the list of questions matters regarding systemic cases.

 

https://www.mskcc.org/cancer-care/types/prostate/treatment/systemic-therapies

Can you paste here the exam report.

Best wishes and luck in this journey.

Thinking of you.

VG

 

 

Jenjur
Posts: 2
Joined: May 2020

I just found this group tonoght My husband is 65 He is diagnosed with prostate cancer that has spread to his bones and pelvis as well His PSA is 23 He had biopsy in April along with bone scan and MRI He had a pain pump unplanted 2 weeks ago to control pain as Oxycotin was not helping He recently had a  3 injections at cancer center I do not have the names with me but I know after a month he is going to start Fermagon?? He started taking chemo pills last Thursday Aeateda?? I will get correct names and post again later As you can tell I am VERY new and do not know what questions I should be asking His next appoint ment is May 7 Please let me know what I should be asking His Gleason is 9 Please I need all the advice I can get to help my husband live a normal life as possible Thank you

 

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