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Gleason score 8 PSA 4.5 Newly Diagnosed

Jim1961
Posts: 6
Joined: Sep 2019

I just received a PC diagnosis last week and I'm like everyone else, very concerned.  I'm an active 57 year old and have been monitoring my PSA levels for 2 years.  My PSA is 4.5 from 3.3 a little over a year ago.  I had a 4K Score of 11, and a contrast prostate MRI that showed nothing.  12 core biopsy done August 23, 2019 and showed 3 sample with cancer.  one was a 3+3, one a 3+5, and the last a 3+5.  Gleason of an 8.  Having bone scan today.  Any advice from the group would be greatly appreciated to keep me from going tothe bad side of my thoughts.  Thanks all!

 

Georges Calvez
Posts: 304
Joined: Sep 2018

Hi Jim,

I am not an doctor but on my own journey through the experience of having prostate cancer I have read hundreds of stories of others.
Honestly I think that your pathology is such that the cancer is extremely likely to be contained within the gland and very treatable with a good chance of preserving a good quality of life with respect to continence, erectile function, etc.
Prostate cancer does move slowly so if the bone scan, etc is negative than you have several months to work through your options for treatment and find which you are happiest with.
This is not an easy decision but it is one you will have to live with so choose carefully.

Best wishes,

Georges

ufknkidding
Posts: 41
Joined: Aug 2019

Hello. I am so sorry to hear you have been diagnosed with prostate cancer. For me it sure felt like an immediate kick to the (mental) gut that's for sure. But remind yourself that you CAN get through this and you HAVE gotten through many other challenges in your life.  I saw you posted on my story so am glad you found it and read it because I was recently diagnosed and treated, now recovering. The good news is prostate cancer is reported to be slow growing based on scientific data.  Yes, cancers can be aggressive and ya, your mind is going to think "what if that's me" but try to breath and relax as these worries come and go and reassure yourself prostate cancer tends to be slow growing. There are differing opinions regarding bone scans and my provider commented he would not recommend it partly because there can be false positives (and my GS was 3+4=7).  One paper at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4137016/ identified a 20% false positive rate.  So if your bone scan comes back positive, try to breath, relax, and begin to consider your next diagnostic option (MRI).  Your GS8 is probably the reason your provider recommended a bone scan and you really do want to determine if the cancer is confined to the gland because it will help you decide on a treatment.  Treatment options are incredibly individual and you'll want to highly consider your quality of life post treatment.  Seek out the absolute best health system and providers for treatment (not all providers are created equal). Having a support system is very important and I found it worthwhile confiding in my wife, adult children, and 1 close male friend, and of course this incredible group of survivors online.  Although my wife is the type, ya, you got cancer, suck it up quit moping around and let's get healing.  LOL, her can do attitude does help me.  Sadly I can't confide in my one living parent because the person can't maintain confidentiality.  I'm very glad you found this cancer survivors network so we too can be a support to you.  Best wishes man!!  You are going to make it through this crappy diagnosis and will regain your active lifestyle after treatment.  My prostatecomy surgery was one week ago and every day I am healing and getting stronger.  I may have to wear a diaper or use a pad for a while but that isn't going to stop me from being me - a fellow active healthy happy 50-ish year old.

Jim1961
Posts: 6
Joined: Sep 2019

Thanks for your reply to my post.  This network is truly a tremendous resource for anyone that finds themselves or a loved one dealing with this disease.  I have already set up appointments at MSK, Penn Medical and Johns Hopkins.  I agree that you need to find the best available and figure out what works for you and your family.  I'll continue to research, listen and participate on the forum.  I'm most likely going the route you went for severtal reasons so I'll definitley be following up on your progress!  Wishing you the best!

graycloud
Posts: 38
Joined: Jan 2018

Jim:  Below is my one year post on my husband's journey.  Very similar journey you are starting.  He's 1 year/8 months post surgery and doing fantastic!  My advice is to do your research, reach out to Memorial Sloan Kettering, Mayo, and others.  Have Dr. Epstein at John's Hopkins do a follow up on your pathology.  Get healthy and get in a warrior mode.  Don't let the dark moments over take your mind - because they will.  There are several men on this board who have had excellent results over the past 1-2 years.  Advances are being made on robotic surgery - you just have to find the experts - especially with your young age.  Feel feel to reach back out with questions after you read below.  Love and Prayers - Graycloud

 

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. 

So, Happy Anniversary to us on being one year cancer free!  He's been out of town the past 3 days, so we will celebrate this weekend!  Our next visit to NYC is in March.  Praying his tests continue as non-detectable.   

ufknkidding
Posts: 41
Joined: Aug 2019

What an awesome story! I am so happy for your husband and you. He is SO lucky to have you in his life and your writing clearly shows you were with him throughout the entire journey. The support you provided to him through this is something I hope all spouses recognize and aspire to accomplish. I get my cath out today. Thank God!! My wife is going and I already prepared her that it probably won't be pleasant and I'm a big baby when it comes to my friend down there. It is like a ball and chain and can get uncomfortable. I hope to return to my normal exercise including weights in a month or two. I recognize I will probably have some leakage when lifting but I've accepted it and won't let it stop me.  Thanks again for sharing!!

Jim1961
Posts: 6
Joined: Sep 2019

Thank you both for your inspiring responses!  I totally agree with ufknkidding in how awesome you've been in the entire process with your husband.  I am very fortunate too to have a loving, supportive wife who is currently keeping me away from my own insanity.  We'll take this journey together and make sure we enjoy every precious moment we have together.  Best of luck unfknkidding with the removal and wishing all health and happiness.    

graycloud
Posts: 38
Joined: Jan 2018

I remember the day my husband got his cath out.  It was such a relief!  No pain at all.  He was finally able to sleep comfortably.   It will be a day of celebration!!

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Jim

It is hard to decipher a status from the data you share above. Can you provide the contents of the pathologist’s report?
The most important issue is to find if the cancer is whole contained in the gland or if it had spread. The bone scan makes part of the diagnosis process so that the urologist will then give you a clinical stage, from where a treatment is decided.

In my lay opinion, the only baddy in the data above is the Gleason rate of 5 which is the top aggressive, but it could be a small portion (%) in just 2 needles and it could be located at an area easy to be dissected or burned. From trials one knows that the worse cases from treatment in Gleason score 8 (3+5 in your case) are those that got seminal vesicles involvement. The negative MRI may indicate otherwise which could be interpreted as a contained case.

Here is a link to help you in understanding the Pathologist report;

https://pcri.org/insights-blog/2016/3/10/interpreting-a-pathology-report-15-biopsy-and-gleason-questions-answered-by-a-leading-pathologist

Hope for the best.

VGama

 

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