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Have I been a fool or have I used wisdom

mcin777
Posts: 30
Joined: Feb 2013

Have I been foolish?  Am I playing Russian Roulette?  

 

I respect your opinions and will appreciate any comments to my question after you ready my story.

 

Ater a biopsy in October of 2011, I was told that I have prostate cancer.  The results are listed below:

 

 

Container/Label

Pieces

Length

Gross Description

Gleason 

Score

%

Involved

Tumor

Length

(M) Left

9

2 to 24mm

Tan-White

PIN

N/a

N/a

(N) Right

12

1 to 16 mm

Tan-White

Malignancy

3+3=6

7

3

 

 

No decision of what to do was made at this time.

 

In March of 2012 I met wilth a well respected Urologist in Portland who has performed many robotic surgeries.  After looking over my biopsy results, he said that I was a good candidate for “watching

and waiting.”  With a sign of relief I opted to do just that.

 

In January of 2013 I had another biopsy completed by Dr. Lowe.  The results of that biopsy are listed below:

Final Diagnosis from this biopsy done by Healthtronics Labatory Solutions was as follows:

 

Left Sites

Diagnosis

Gleason Score

Tumor % / Length (mm)

Base

Adenocarcinoma

7 (3+4)

20% 4.2mm

Mid

Adenocarcinoma

6 (3+3)

50% 11.5mm

Apex

Benign

 

7,4,4,3,1

 

 

 

Right Sites

Diagnosis

Gleason Score

Tumor % / Length (mm)

Base

Benign

 

 

Mid

Benign

 

 

Apex

Benign

 

 

 

Based on a suggestion found on this board, I had the Dr send the biopsy results to John Hopkins reference Laboratories.  In February of 2013, I received the following results.

 

  1. Prostatic Adencarcinoma, Gleason Score 3+3=6 Discontinuously Involving 30% of One (1) Core of the total fragmented specimen.

 

  1. Prostatic Adenocarcinoma, Gleason Score 3+3 = 6 Discontinuously Involving 90% of One (1) Core of the total fragmented specimen.

 

  1. 3-6) Benign Prostatic Tissue

 

Jonathan I. Epstein, M.D.

 

Since that time I have returned to Dr. Lowe for routine digital examinations.  My most recent exam was in October of 2013.  Each exam has resulted in the same conclusion - prostate is enlarged by soft and no ridges/bumps found.

 

My PSA scores have been as follows. 

 

 

Standard Range

11/30/11

05/25/11

06/12/13

10/02/13

01/15/14

PSA-% FREE

21

15.91

19.11

18.97

19.60

PSA-ACT

0.00-4-00 NG/ML

8.0

5.91

5.39

5.64

5.05

PSA-FREE

1.7

0.940

1.030

1.070

0.990

 

 

I have shared all this to ask your opinion.  Have I from your perspectives been a fool for waiting and am I simply playing Russian Roulette?  I have done a lot of research and still have many questions.  I am certain that I do not want Robotic Surgery.  My prostate is to large for effective treatment with seed implants unless I undergo hormonal therapy.  If I can get insurance to cover Proton Therapy, I will most likely go that route.  I still am trying to find out what the long term impact of radiation is on the body.  If people are cautioned to avoid radiation from dental work, lung exrays, etc., there must be good reason.  So the question looms, what is the impact of the radiation from prostate treatment apart from the typical side affects from the treatment.

 

I will admit that I have lived with little concern but now my concern is mounting and I want to have something done fairly soon.

 

I hope you all do not mind me rambling on like this.  I sure would appreciate your various perspectives.

 

 

Jim

hopeful and opt...
Posts: 1293
Joined: Apr 2009

You have started several threads to illicit information about PCa as it pertains to your condition, which is good. As you realize determining knowledge is very important for the right decision.

To be honest, I have problems following your case since there are so many threads; it would be helpful if you can continue with one thread, this one, about your case, and not keep on starting new threads.  I am now listing direction to one of your threads where you ask a very similar question...  http://csn.cancer.org/node/255309

From this thread and others it is apparent to me that you are very conflicted, and are having problems with a decision.

In the thread that I mention above, I advised that you speak with an expert in Active Surveillance to get a medical opinion for this treatment choice , hopefully this person will be at a major medical institution where there is a large population of low rsik patients that are treated with high tech equipment.   Have you done so?, and if so what was discussed?

I do not remember you mentioning your age; the criteria for Active Surveillance treatment is more relaxed for those 70 and over. What is your age?

At any rate it is my non medical opinion that the first step in your decision making process is to determine if you qualify for Active Surveillance, if you do, again my non medical opinion is that this is the preferred treatment choice. If not then you will have to choose from the active treatments that are available,; various forms of radiation and surgery.

Once again I am a patient in an active surveillance program, in March will be five years. Please click my name for specifics about my case and other information that may be germaine to you.

Best

 

 

mcin777
Posts: 30
Joined: Feb 2013

Thanks Hopeful.  Thanks for the corrective remarks.  I did not know that you could/should continue with one thread.  I will look into how to do that.  If you have a new question, how do you ask it wthout starting a new thread.  By the way, I just turned 71.  

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I don't have the study available, but  Johns Hopkins considers men who are over 70 with a Gleason 3+4=7 to be eligible for active surveillance program. They are currently working on a formal guideline.

 

Also Dr. Laurence Klotz, Professor of Surgery, University of Toronto and Chief, Division of Urology, Sunnybrook and Women’s College Health Sciences Centre, Toronto, Ontario has a relaxed guideline for active surveillance for men over 70

Here are google sites that that you can read that will validate the above statements.

https://www.google.com/webhp?tab=mw&ei=ekHZUtnRKIXerQGtw4DoAQ&ved=0CAQQqS4oAQ#q=johns+hopkins+active+surveillance+protocol+relaxed+guideline+for+those+over+70

Additionally  my gleason at age 70 is on the cusp of being a 3+4=7 or a 3+3=6 . The first pathologist that read my slides gave a gleason 6 and the second pathologist a gleason 7. I still remain in an active surveillance program.

Once again since you have a high involvement in one of your cores, I strongly recommend that you see an EXPERT on Active Surveillance, one who specializes in this for an expert opinion.

...........................

Simply click reply to make comments and ask questions about treatments so that the answers can easier be customized to your situation

 

richardlvance
Posts: 10
Joined: Aug 2010

Thx for pointing us to that article

http://clincancerres.aacrjournals.org/content/18/19/5471.full.pdf

Its clear that whether treated immediately or later you are MUCH more likely to die of other causes.

 

I have been on active surveillance since 2010 and PSA is knocking on 10 now from the original

4. It sat in the 6-7 range for a long time then something set it off. Change of diet, sickness, or

whatever. So a biopsy gave me a bunch of Gleason 7 cores and there is pressure to treat.

Back in 2010 they just wanted to cut or radiate. I fired the cutter, I don't need doctors who are

so quick with the knives. Insurance would not pay for the only radiation I would have being

proton particle beam.

 

Now they've changed their protocols and want to do Hormone Deprivation Therapy (HDT od HT) simultaneous with

radiation.. I've done some research on that and am not pleased. Its not just the nasty

side effects of HDT but the fact that it ruins a salvage treatment option. This little biology thing

called evolution means that the PC cells that survive both the HT and the radiation

are the few that were DNA wired to resist. Thus any recurrance will be the resistant vaiant

that will not respond to HT after failure of radiation. I would have a nasty aggressive PC likely to

go metastatic with no good treatment options except medical cannabis. Damn those neanderthal

ignorant prejudiced old white men 1937 congressmen. And add the 2014 congress too.

 

However, as each year passes there is new scientific understanding, new genome therapies,

new nanoparticle therapies, new chemicals, and the inevitable end of hemp prohibition

thus bringing cannabis into mainstream medicine for my treatment.

 

So, I have decided to forego the HT and just do protons, if the doctor will agree to

take orders from the expert patient.  Then I'll be back on active surveillance and if the need arises

a new therapy will be available in 5 years.

 

Thanks for what you guys do on the forum. We are all seeking resolution to

difficult decisions. The thoughts of others are immensely helpful.

Richard Vance

Huntsville, AL

Monterrey, NL, Mexico

 

 

hopeful and opt...
Posts: 1293
Joined: Apr 2009

Welcome to the board.

If  your medical team  can confirm that your cancer is confined to the prostate, that is, it is localized, by analyzing the results of your pathology report and other medical tests to include your PSA's, and  use  of a high powered 3-T MRI to give indication, or hopefully not give indication   that    possible  extracapsular extention exists you can consider proton therapy. There is a new generation pencil beam proton therapy at MD Anderson in Houston and University of Florida Jacksonville that is more effective  than in the  older generation proton facilities.

 

If the cancer is outside the prostate you will have to consider including  hormone along with a radiation therapy, or hormone therapy stand alone, best to be administered by an experienced medical oncologist.

 

Best

Disclaimer: I am not a medical professional.

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