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Newly Diagnosed Agressive PC

foamhand
Posts: 79
Joined: May 2016

My PSA was 4.6 in October 2015, 7.1 with a 15% free PSA April 25th and I just had a biopsy last week. I am meeting with my Urologist in 2 days but obtained a copy of my biopsy report and I am almost in tears. Very agressive as follows...

                                     SURGICAL PATHOLOGY REPORT  
 
         FINAL DIAGNOSIS
 
 PART A. PROSTATE, LEFT LATERAL BASE, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 95% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 PART B. PROSTATE, LEFT LATERAL MID, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
 PART C. PROSTATE, LEFT LATERAL APEX, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 PART D. PROSTATE, LEFT BASE, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 PART E. PROSTATE, LEFT MID, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 80% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 PART F. PROSTATE, LEFT APEX, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 PART G. PROSTATE, RIGHT BASE, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 PART H. PROSTATE, RIGHT MID, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
 PART I. PROSTATE, RIGHT APEX, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 PART J. PROSTATE, RIGHT LATERAL BASE, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
           - SUSPICIOUS FOR EXTRACAPSULAR EXTENSION.
 PART K. PROSTATE, RIGHT LATERAL MID, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 
         FINAL DIAGNOSIS           (Continued)
 
 PART L. PROSTATE, RIGHT LATERAL APEX, NEEDLE BIOPSY:
           - PROSTATIC ADENOMA CARCINOMA, GLEASON SCORE 4 + 5 = 9, INVOLVING 100% OF NEEDLE
             CORE TISSUE.
           - PERINEURAL INVASION PRESENT.
 
 C61
 
       CLINICAL INFORMATION
 
 The specimen is prostate needle biopsies in a patient with an elevated prostate-specific
 antigen of 7.1.
 
        GROSS DESCRIPTION
 
 A. Left lateral base..........Cores -  1, Length - 2 cm
 B. Left lateral mid...........Cores -  1, Length - 2 cm
 C. Left lateral apex..........Cores -  1, Length - 1.8 cm
 D. Left base..................Cores -  1, Length - 1.8 cm
 E. Left mid...................Cores -  1, Length - 1.7 cm
 F. Left apex..................Cores -  1, Length - 1.7 cm
 G. Right base.................Cores -  1, Length - 1.8 cm
 H. Right mid..................Cores -  1, Length - 1.6 cm
 I. Right apex.................Cores -  1, Length - 2 cm
 J. Right lateral base.........Cores -  1, Length - 1.8 cm
 K. Right lateral mid..........Cores -  1, Length - 2 cm
 L. Right lateral apex.........Cores -  1, Length - 1.5 cm
 
     MICROSCOPIC DESCRIPTION
 
 
 
 Parts A through F. The left-sided biopsies sublabeled A through F show all of the needle
 core biopsies to be involved with a poorly differentiated invasive prostatic adenocarcinoma
 of the ductal type. Every needle core biopsy has a Gleason pattern 4 + 5 leaving a Gleason
 score of 9. Multiple areas of perineural invasion are identified in almost all of the
 needle cores. Almost the entire core is involved in the entire left side.  The tumor is
 composed of markedly enlarged atypical cells that are hyperchromatic with prominent
 nucleoli. The Gleason 5 patterns merge from a solid nested gland forming tumor to areas
 where there is individual cell infiltration, some small sheets and no evidence of duct or
 acinar pattern. I do not identify extra prostatic extension but it appears to be extremely
 close in several of these biopsies. The left lateral base shows 95% of the tumor pattern 4,
 5% pattern 5. The left lateral mid shows 80% of the tumor pattern 4, 20% pattern 5. The
 left lateral apex shows 90% of the tumor pattern 4, 10% pattern 5. The left base shows 80%
 of the tumor pattern 4, 20% pattern 5. The left mid shows 90% of the tumor pattern 4, 10%
 pattern 5, and the left apex shows 60% pattern 4, 40% pattern 5.
 
 Parts G through L. The right-sided biopsies sublabeled G through L show every biopsy
 involved with a poorly differentiated invasive prostatic ductal adenocarcinoma, Gleason
 pattern 4 + 5, score 9. Virtually the entire length of all of these cores is involved with
 tumor and there are multiple area of perineural invasion. The morphology and pattern is
 
     MICROSCOPIC DESCRIPTION       (Continued)
 
 similar to those described in the left-sided biopsies. The biopsy from the right lateral
 base sublabeled J is extremely suspicious for extracapsular extension. The right base shows
 55% Gleason pattern 4, 45% pattern 5. The right mid shows 90% pattern 4, 10% pattern 5. The
 right apex shows 70% pattern 4, 30% pattern 5. The right lateral base shows 90% pattern 4,
 10% pattern 5. The right lateral mid shows 80% pattern 4, 20% pattern 5, and the right
 lateral apex shows 85% pattern 4,  15% pattern 5. 
 
 
 I'm mentally a wreck, not sure which way to go treatment wise. I still have Abdominal, Pelvic and Bone scans tomorrow to check for spread. I'm dumbfounded with the results with having a PSA<10.

Just need to share with someone.

foamhand

 
 

Old Salt
Posts: 720
Joined: Aug 2014

I hope that the scans will not show significant disease outside of the prostate. Once you have those results, please report back to us; we have other Gleason 9 patients who may be able to give advice and hope.

In the meantime, please be aware that Gleason 9 prostate cancer can be treated successfully.

foamhand
Posts: 79
Joined: May 2016

Thanks for your reply. That Gleason 9 number in all the cores coupled with the extracapsular extention comment scares the hell out of me. My mind started thinking is it "Bucket List" time?  Scans done today...see the doc tomorrow and will report back.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I am sorry for your diagnosis. All of us  are depressed and experience all of those negative feeling for the first few months after Diagnosis.

Gainingknowledge about this disease will help. Also if you can associate with upbeat individuals, so  if you attend services make sure that the clergyman is upbeat .

The side effects of different treatment modalities are cumulative so since the cancer is outside the prostate having surgery that can have major side effects is not advised by most doctors since a combination of radiation and hormone, or possibly hormone treatment only will get the job done with less side effects. Surgery is a local treatment only 

You want to find the very  very best medical  oncologist the first that  to be lead doc for  your medical team.....with this in mind please share where you live. We may have a referral for you.

Take someone with you to your medical appointments. Also get copies of all medical records. Ask permission to record medical appt

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Foam,

As you post indicates you are aware, your biopsy shows serious disease.

As Old Salt stated, the scans coming back indicating minimal or no metastasis would be a best-case result.

It would be relevant and helpful if you share your age and general health as the guys review your options. Very likely first-line therapy will be radiation, with a host of supplemental treatments thereafter: Hormonal, chemo, etc.

Regardless, there are numerous writers here who presented with advanced disease and have had quality lives for many years since. Complete eradication of the disease is even a possibility, if there is no spread beyond the immediate prostate bed (radiation can often catch and destroy such disease).  Best of luck with this, and regardless of how complex your treatment might be, there are guys here who have done it before you.

 

max

foamhand
Posts: 79
Joined: May 2016

I'm 55 yrs old, in pretty good shape otherwise, minor allergies / asthma, cholesterol a little high. Otherwise I'm healthy and have lots of energy overall. My Doctor (Urology specialist) is a graduate of UCLA and Duke University and did residency at Kaiser Permanente. He's 55 yrs old too, and very well respected here in Grand Junction CO where I live.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Foamhand,

The biopsy results you posted above would frighten any living person. We all cry when diagnosed. They indicate high risk disease, with aggressive behavior. You may have to counter attack the bandit with an aggressive treatment too.

My recommendation is for you to consult various specialists, get second opinions on any proposed treatment and do not give preferences to anything solo based on a "famous" doctor's recommendation, in particular if you are unsure of the consequences and benefits. Doctors will suggest their preferences which may not match the ones of their colleagues. It is therefore important that you gain some knowledge on the matter before deciding.

At the moment you should get as much info of your status as possible (image studies, bone scan, etc) and get a clinical stage. You are young and fit but hidden status is always illusive (such as your case with PCa). While waiting for the results you can also add some tests/exams in regards to lipids and other situations that could put into jeopardy the choice of a treatment. I always suggest our comrades to get a testosterone test as reference marker in future hormonal therapies. A bone density scan (DEXA) will verify the bone health which is the "place" cancer likes best to spread. A colonoscopy can check for any existing ulcerative colitis that in certain cases/locations would prohibit an attack with radiation. Future medications to treat PCa (now on trials) can best suit some patients (more than others) if one have certain genes. A genomic test can help in differentiating treatments that would work better. Etc, etc.

You need to read about our problem (PCa) and get informed to the maximum you manage to absorb. Take notes when in consultation and prepare a list of questions before the meeting with the specialists will help you to understand the matters. Your case is pretty bad and doctors will suggest intervention the soonest but please note that even high risk cases can delay treatment a couple months without prejudice to its outcome.

You should be aware of treatment risks and side effects. Most probably you will benefit mostly from a combination therapy (two or three in one protocol). Urologists typically recommend surgery to debulk the big tumor (the gland), though one would not get cured if the cancer is not contained, and risk a series of added side effects. Radiation with an ADT protocol (hormonal) is typical for aggressive types with metastases (high probabilities of your situation per the data posted above).

I think you should choose a therapy considering the quality of life. You are young and got many years to live and should have that with quality not just quantity.

Here are some links that may help you now and along your journey;

A practical guide to prostate cancer diagnosis and management;

http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

List of Question;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

All about ADT;

http://www.cancer.gov/cancertopics/factsheet/Therapy/hormone-therapy-prostate

Diet and a change in live tactics become important to counter the treatment effects. Physical fitness programs and proper nutrition are important when dealing with prostate cancer;

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

Best wishes and luck in your journey.

VGama

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Foamhand,

Vasco speaks with great expertise, highly detailed.  But let it be said explicitly and directly, since you are likely in information overload, or will be soon:  Surgery is likely not a good choice for you.  I chose surgery, but I had Stage II disease, with a Gleason of 6.  A Gleason of 9 is usually assumed by experts to be out of the gland, but do all of the tests available to verify this. 

Your next step should be to see a Radiation Oncologist, a guy who specializes in just radiation to kill cancer.  And a Medical Oncologst, a guy who employs drugs (chemo, hormonal therapy) to kill cancer.  Very likely you will need all three sorts of doctors (urologist, rad oncologist, medical oncologist).   Some doctors have overlapping expertise between these areas, but most are proficient just in their one specializaton.

While most PCa is indolent (non-aggressive, slow-moving) and one can take his time, your case is probably more time sensitive.  But study, and thoughfully choose a treatment path.   Be methodological, but not frantic.  View Gleason 9 disease as ISIL:  Go to the war room and devise a plan, assembling the best experts available to you.   Make each doctor explain why their suggestions are best, and make them address why a different doctor selling a differnt ware is wrong.  I was fortunate in that the radiation oncologst I spoke with very honestly laid out how his treatment was better than surgery, but he also admitted the few advantages that surgery might have for me. Same for the surgeon: He admitted the ways that radiation would be easier in my case.  I chose surgery for reasons too detailed to discuss here, and that are not applicable in your very differnt case.

After the consults, go with who you most believe and trust, based on what you have read and learned.

max

foamhand
Posts: 79
Joined: May 2016

Well here's the final blow. The cancer has a couple small mets to the pelvic bone and to a couple of lymph nodes. The doc is not going for removal now as he feels it's too late. He will be doing a TURP next week so I can pee again, and is recommending Hormone Therapy combined with Chemo to try and clear the lymphatic system. He said I am not "Curable" but very treatable and that huge leaps are being made with new drugs for prostate cancer. He said maybe in 5 years there will be a cure. So I guess thats it. Focus on the positive...do my sessions and take life a little less seriously and more personally. I start Casodex right away and Lupron injection next monday (due to pre approval from insurance). Guess i'm gonna have to learn to live with it.

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Yes enjoy the moments of life that's what it's all about

I strongly recommend that you do research to find the best medical oncologist that you can. The medical oncologist is the expert on administering hormone treatments. There are about 35 in the USA that only work with patients who have prostate cancer. 

There is a group. In Marina del Rey here in Southern California who specialize. One of these docs name is Scholz. 

See if Colorado works for you, otherwise I referenced a real expert. 

 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

Sorry for your diagnosis, but even the most severe cases often live for years.  However, there is a lot more to this disease than just the disease itself. And one of the most unpleasant may be loss of testosterone.  When T is removed from a male, really undesireable side effects may occur, and may be worse than you can imagine.  I do not intend to scare you, but I do intend to inform you that some patients (me included) can suffer far more from the side effects of treatment than from the disease itself.  Do not underestimate the problems that removal of T can have and be prepared to deal with them as they arise.  Changes in diet, exercise programs, and meditation will be necessary.  

     I thought, "It wont happen to me", but it did happen in spades, and the first year was a nightmare because I was not prepared for the side effects nor did I imagine that they would or could be so severe.  For me, it was the same as having a new disease to deal with.  The cancer was one problem, but not nearly as severe or as problematic as the removal of T.  Now, not everyone suffers as I did, but, on the other hand, many others do.  This is just a word of warning that you cannot imagine the future.  It may be a lot better than you think, and it may be a lot worse than you think.  In my case, after one very difficult year, I received almost three years of wonderous health and the gift of high quality life.  With this disease and treatment, there is just no predicting the future.  My suggestion is to celebrate every moment of life, and make the time you have left the most valuable time of your life.  Good luck for your future.  What steps you take to stay positive and loving will greatly effect your quality of life.  Any negativity that you allow yourself to get into will be greatly to your disadvantage.  In the meantime, we are all rooting for you and available. 

love, Swami Rakendra

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

 

Foamhand,

The protocol (hormonal plus chemotherapy) chosen by your doctor is typical in advance cases with apparent metastases at the lymph nodes (travelling route of PCa). I believe that TURP will be done extensively dissecting a big chunk from the inner tissues. Hopefully he leaves the areas of the sphincters intact, to avoid you a case of incontinence.

I believe that your doctor has not recommended an attack with radiation yet because of the finding of bone metastases (from the image study). Cancer could be much far away so that just like surgery the radiation treatment could become palliative (no definite field to target). Chemo is not pleasant but it is the only way of reaching those far areas where cancer hides. Later, radiation may be used to target spot metastases in bone.

As commented by Rakendra above, I would recommend you to prepare yourself for the treatment side effects. It is better to know now what to expect and how to counter.

Before taking Lupron I highly recommend you to have a Testosterone test. This is a simple blood test that you can do at any local laboratory costing a mare 25 dollars. The results will serve as base data, important along your treatment journey, but must be obtained without the influence of the Lupron injection. Urologists typically never ask for this test. They use the PSA which is not a marker to verify Lupron’s action. Medical oncologists use this and other tests such as the bone densitometry. Chemo and hormonal drugs will weaken your bone. Many guys need to add to the protocol a bisphosphanates.

In these links they summarize the chemo and hormonal side effects;

http://www.pcf.org/site/c.leJRIROrEpH/b.5836637/k.D89F/Side_Effects_of_Chemotherapy.htm

http://www.pcf.org/site/c.leJRIROrEpH/b.5836631/k.3CD9/Side_Effects_of_Hormone_Therapy.htm

Best wishes,

VG

 

foamhand
Posts: 79
Joined: May 2016

I do blood draw today pre - TURP per Urologist. I will ask if he's checking testosterone, and start the Casodex. Hopefully insurance will clear Lupron by mon. The Urologist said the bone mets are so small that they may go away, but treating the lymph system is my biggest concern. The Urologist said the newer chemo drugs for this don't tend to make you as sick as the older ones, but I'm going to ask what supplements will help.

I have been vehemently anti-street drug in my latter years, but many people are claiming this CBD or cannibis oil from pot kills cancer cells. I wonder if this has merit or just warped mind pothead snake oil? Also I have been told to check into immunotherapy?  I will discuss these things with the doc as well. Many thanks to V.Gama.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

I know nothing about these sort of holistic therapies. Your situation is risky so that I would recommend you to follow traditional protocols. Drugs interaction may also occur so that you should consult your physician before taking anything. Immunotherapy is also an option but it is expensive and not covered by most insurances. You could also check about the possibility of participating in a clinical trial. These are safe and use the newer drugs that one could not avail through other means.

In any case, I think you doing it well in trying the protocol recommended by your doctor now. Later you will find if it is working so that you continue it, or change to another therapy.

Best wishes and peace of mind.

VG

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Family members are more likely is develop prostate cancer so it is important to notify other family members such as brothers, sons, uncles and even cousins.

These men can have a Baseline PSA test at age 35 as well as a digital rectal exam. At age 40 start annual visits to the doctor for testing.A correlation has been shown among family members of Prostate and breast cancers.So women in your family need to get those mammograms.

All need to eat heart-healthy since heart healthy is prostate  and breast cancer healthy 

 

 

 

foamhand
Posts: 79
Joined: May 2016

My Dr. said that only 2 pelvic lymph nodes seem involved, and the bone mets are pretty small. He said the bone mets may go away if we get going on treatment right away. He said I'm younger (55) and pretty healthy for my age so that is a plus. He said he has a patient that was in the same situation 5 years ago and is doing great today. So there is hope.

 

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