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just got the news-lost

TC
Posts: 1
Joined: Mar 2017

50 yr old, went for physical and blood work. found microscopic blood in urine, referred to urologist.

PSA 2.63, urologist recommended biopsy during bladder/urinary check.

3 of 14 cores showed Adenocarcinoma with Gleason 6

1 core less than 5%, 1 core at 70%, 1 core at 90%.

Grade group 1

Positive margin 23%  on Capra ? 

I have read constantly since I found out (2 days) still lost. Doc gave me a book to read and wants to see me in 3 weeks to discuss course of treatment.

Healthy with no symptoms. any input or shared experience would be greatly appreciated. thanks

 

Old Salt
Posts: 720
Joined: Aug 2014

I am sorry that you are now part of our brotherhood; a group that nobody wants to join.

But you can stay optimistic because it's very likely that you can be cured, based on the information that you have provided.

I would not be surprised if your urologist is going to recommend surgery. Several of us will advocate that a proper course of radiation therapy will work just as well. Ultimately, it will be up to you to decide. But in the meantime, you will have a lot of time to gain knowledge of the pros and cons of the various approaches that are currently available. Take your time and don't make any rash decisions.

I hope that others will elaborate on my post.

VascodaGama's picture
VascodaGama
Posts: 2989
Joined: Nov 2010

TC,

I agree with Old Salt. Do not rush to a decision without knowing in detail the pros and cons of a therapy. One should be treated but treatments for prostate cancer are linked to risks and side effects that may jeopardy the quality of living. Young patients in particular, with long life expectancies, should consider the aspects involved for choosing what he believes best and feels comfortable with. The possibility in fathering a child again may turn futile. Incontinence, erection dysfunction, colitis, urination issues, etc, are all issues at play that should be known in advance. The family should also be informed and make part on the decision process.

I share three items of your status: I was 50 years old when diagnosed, my cancer was Gleason score 6 (2+3) and was healthy with no symptoms. This happen 17 years ago. Since then medicine has improved substantially, in terms of image equipment, pathological reading, PCa genes understanding, prediction tools and treatment types and efficacy. These items are all important to know when deciding on that "next step". Just like you (?) we are not doctors but can provide you opinions based on own experience and knowledge acquired along the time as survivors.

I wonder about some details from the biopsy report:

Can you tell the location/region of the three positive cores?
What about the size of the gland?
Did the pathologist refer to existing any other type of tissue or calculi?

Can you tell us about the problem with the bladder/urinary issue you refer above?

Did the doctor do a DRE (digital rectum examination)?

What about any image study, are you scheduled for any?

Your question regarding "Positive margin 23% on Capra" is a tool (reference index rate) used to predict recurrence due to existing positive margins. This is used by robot-assisted surgeons (surgery) when predicting the location of the cancer within the gland. In other words any small possibility that cancer is located close to or at the capsule, would require delicate dissecting avoiding any injury to the outer shell. Positive margin could signify an escape of the cancer that could lead to a failed outcome. CAPRA score can be useful if compared to the results of a modern image exam for better guessing on the location of the cancer. It may improve the diagnosis of a contained case (whole cancer inside the gland) that supports surgery as an option in non aggressive type of cancers. Localized cases but not contained would do better with a radiation option.

You got cancer. Now you need to locate it (CAPRA score is not enough). In my opinion you should firstly get proper image studies (mpMRI plus bone scan) to avail of a clinical stage. That, together with what you know about treatment risks and side effects, and the opinion of several specialists (second opinions) leads you to a decision.

The following link can help you understanding details on prostate cancer diagnosis and therapies. I recommend you to prepare a list of questions for your next meeting with the doctor;

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

Best wishes and luck.

VGama

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

TC,

While your Gleason and PSA are low, the one core at 90% involvement somewhat suggests the possibility (but not certitude) of significant volume (tumor size inside the gland). PCa biopsies are very much hit-or-miss affairs. Imaging, such as Vasco mentioned, is much needed in your case.  I had DaVinci robotic removal, but with your particulars (of which you don't really have enough yet), I would go with radiation therapy (RT).

You admirably mention that you have researched this "two days."  Good.  And it is good that you  found this site.  But the men who have been here 10 years or more (I am not one of them) are still learning new material every day.  Prostate Cancer treatment cannot be learned from Cliff Notes at Barnes and Noble; you will be learing a year from now, if you read every day.

My following statement is subjective and impressionistic:  PCa (Prostate Cancer) diagnosed at very young ages (like yours) TENDS to become more aggressive faster than when found at more conventional ages.  This MAY NOT be applicable to you.  The average age for diagnosis of PCa in the US today is 67 years of age.

Continue your study. Read the book your doctor provided to you.  Do not let a urological surgeon steer you to surgical removal without further imaging and meeting with at least one Radiation Oncologist, minimum.  Most important of all: AVOID THE INTERNET, except for university and premiere hospital sites.  There is a massive amount of nonsense on the internet: magical cures, reefer cures, sad idiocy for desperate individuals.  Use sites like Johns Hopkins Medical Center, MD Anderson CC, Sloan-Kettering, the Cleveland Clinic, etc.  American Cancer Society links are excellent.

 And know that very, very likely your disease is curable.

max

PAD2017
Posts: 4
Joined: Apr 2017

Wow, there are a whole lot of recommendations not backed up by specific scientific references here.  Be very careful, you may actually influence people searching for information to close their minds and go with your generic prescriptions.  

JJMWFF1955
Posts: 11
Joined: Apr 2017

Max it appears that you have been through it all and gained a lot of knowledge in the meantime.  I take it that you took Radiation treatment with HT

and so far you are staying healthy.  Do you have frequent urination problems? 

Also I wondered that after the treatment it seems like the totally rely on PSA test for reacurrance.  Do any of these Dr's ever do any Imaging scans along with the PSA or do they totally rely on PSA to see if cancer stays in check?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

JJ,

Welcome to you.

Since you sort of asked, my medical trials have consisted mainly of being run over by a car in 1986, two years of rehab, Advanced Hodgkin's Lymphoma, and PCa, treated with RP (DaVinci).  I have not ever received therapeudic RT to date (for anything).  I do not now have urinary issues, but did prior to surgical removal; in fact, I had a lot of UT issues, too many to list at the moment.  I was subject to lifetime recurrent Prostatitis for decades, until the gland was cut out.  It was assumed that my problems were BPH/BEP until a urologist insisted on a biopsy.

MOST post-treatment assessment of cure is indeed via PSA testing, both for men who have had RP or some form of RT, or both.  The protocols are different as you may know:  post surgery, PSA should go to "undetectable" almost immediately (definitely within two months, unless HT at some point was employed) and stay there for life. Doctors know the threashold at which slight PSA traces indicate relapse.   After RT, PSA tracking is much more complex, but protocols are in place to know when or if there is relapse in most cases.  Guys must wait significant lengths of time (months or even years) to achive their 'nadir" and other monitoring points.  I am not criticizing RT, just pointing out that this is how the game is played.

In more serious cases or ambiguous cases, other monitoring techniques are employed, such as advance MRIs, bone scans, and others. I am not very conversant in these, but several of the guys here are.  These are usually, as I said, only necessary in cases suspicious or confirmed for metastasis, etc., combined with PSA.  But again, PSA is the core of virtually all post-treatment analysis.  I hope this helps a little.  Vasco is the "Master" of relapse analysis, and can from memory state the variables involved in any treatment, whether surgery, RT, or HT, or all of the above mixed together.  Several others are similiarly profound in knowledge, a  remarkable set of resources.  As I noted, scanning technologies and relapse analysis are not my "main things,"

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Sorry to hear about your recent diagnosis. 

Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cancer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

The following is my response to other men who asked for similiar advice about the treatment choices available to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

 . . .  People here know me as an outspoken advocate for CyberKnife (CK) radiation treatment and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

 1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

5) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

Good luck!

Steelchuggin26
Posts: 36
Joined: Mar 2013

There us good news among the diagnosis. You were diagnosed with gleason 6 according to the pathologist. This is the lowest (least aggressive) grade to be diagnosed with. Often times, men with gleason 6 disease can get by for quite a long time before needing treatment, some never require treatment.

With you having just 3 positive cores out of 14, you could try active surveillance, as gleason 6 with 3 or less positive cores is considered 'very low' risk. However,  because of your age your physician might not offer that since your life expectancy is greater than 10 years.  In all likelihood treatment will be initiated, and for organ confined, gleason 6, that would be either surgery, external beam radiation, or radioactive seeds implanted into the gland (brachytherapy), or Cyber Knife therapy.

 

As you appear to be a healthy man otherwise, there is no need to rush in deciding on any one treatment. Take your time, weigh the benefits and risks of each treatment modality, and make a xhoice based on what you feel is best for YOU. There is no universally right or wrong treatment foor cases such as yours.

Surgery and radiation have roughly the same success rates for treatment of early stage, low grade prostate cancer. You can't really go wrong one way or the other as far as that goes. But the side effects do hsve some differences. Surgery usually has more immediate side  effects, whereas radiation os more gradual. Though to be honezt, im not exactly sure how the side effects go with cyberknife since its a more targeted form of radiation, aimed at treating the tumor only, and soaring the rest of the gland.

 

Most importantly, whatever.you choose, make sure whomever treats you has plenty of experience. The more experienced the physician is, the lesser the chance of unwanted effects. And if there are side effects, theyll be minimized with an experienced physician.

 

Hang in there, try not to stress too much, essier said than done, i know.

 

PAD2017
Posts: 4
Joined: Apr 2017

TC, 

With a Gleason 6 I think most would agree you've got a little bit of breathing room.  I would recommend you use that time, however long you feel comfortable, to try diet, supplement and life style adjustments to see if you can't kill this before you've got to call in the conventional calvary.  I've been in the fight for two years, was diagnosed at 54, Gleason 9, had Robotic RP and the cancer came back fast, in about 7 months.  I've been monitoring my PSA as it's been climbing.  The current doc is pushing hard for salvage radiation.  As I've monitored my PSA I've been able to roll it back on three tests, the latest by ~15%.  Although the radiation oncologist didn't think much of that, I did.  And I did it by holistic means; pretty much a lot of the dietary changes you've probably read about - prostate cancer responds well to certain foods and spices.  I've always worked out, so I've kept that up.  Quit drinking, switched from coffee to green tea (several cups throughout the day), no meat, no dairy, etc, etc.  It may not work for me with this recurrent, aggressive strain, but I've come to believe over the last two years that the body is a powerful healer and if everything else is working well, and you give it the right fuel and ammunition (natural things that have been medically proven to kill cancer cells), you may be able to reverse it.  If you're interested, I've also tried a few things that I can go into more detail if you'd like.  

The point of the post is - try the natural approach, that won't hurt you, while you're deciding which way you want to go with conventional treatment.  My hope would be that you see a positive reversal and you might make those conventional treatments unnecessary.  If not, you haven't hurt yourself exploring that option. The best of luck to you!

Pete

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

I wish you'd supply some professional studies that support your claims her, PAD.  Not internet articles from some health food store, but professional, academically controlled studies. "Ancedotal" accounts, what happened to this one guy or that other one, are not scientific either.

I have had friends who left conventional treatments for natural/holistic, and every one of them died soon thereafter.  But I realize that that is ancedotal also.

max

 

PAD2017
Posts: 4
Joined: Apr 2017

Max, 

Reread my post.  I claim nothing, other than the facts of my personal situation, which is what I presumed was the purpose of having actual patients going through their cancer sagas post - to learn from their personal experiences.  We all have access to scientific/medical journals, and there are plenty that highlight diet and lifestyle impacts on cancer and cancer prevention.  I did think very carefully about how I worded my post.  Read it again.  I didn't post, "...internet articles from some health food store."  And I was very careful not to assert the abandonment of conventional treatment.  As far as understanding your position, copy, conventional good - unconventional bad=death, "...every one of them died soon thereafter."  That is a very powerful, anecdotal statement.  Actually, that is a very frightening assertion to make, especially to someone with a low grade cancer starting out on their journey.  Sorry, was new to the site, didn't understand how it worked.  Adios.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

I note zero (no) scientific data submitted.

 

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

The postive margin kind of bothers me, that usually means the cancer is right at the edge of the prostate tissue. You don't want the cancer to escape the prostate, it get's out it's much harder to treat/cure.  Check that out with your oncologist & urologist, more non invasive testing(MRI) would be worth the effort.  IMO if the PCa is right at the edge of the prostate I would not wait very long even if it is 3+3.  If the cancer is more in the center of the prostate then you have some time to study treatment plans.  Which ever treatment you decide on(radiation or surgery) get the best doctors at the best facilities you can find.  The latest technology along with a experienced oncologist & urologist(need to talk to both) will go a long way to getting you rid of the cancer.  Most the time if the cancer is within the prostate then either surgery or radiation will work, if outside the prostate then radiation/drugs might be a better solution.  The up front diagnostic work is invaluable in determining the agressiveness and location of the cancer so you have a clear direction for your treament.

Dave 3+4

PAD2017
Posts: 4
Joined: Apr 2017

TC, 

Please take the time to consider all options and don't feel rushed to make an irreversible decision.  Your doctors will do it, your friends and family might do it, posters on this site might do it, all with good intentions and your best interest at heart.  But, take the amount of time you feel necessary to formulate your plan and course of action.  You'll get the standard prescription; biopsy, surgery, salvage radiation, hormone therapy, etc.  There is not enough information on you the person, for anyone to provide you with a, "This is what you've got to do..." statement.  When you make that decision, believe it's the right one.  Don't look back and second guess.  For anyone but you, it's very easy to write a few sentences and hit "submit" then go on with their day.  I'm not cured, I'm in this fight too and that's the one piece of advice I wish someone had given me.  I knew little to nothing about PC when I was diagnosed and in my particular circumstances, being in the military at my particular location, I had no "Quarterback" doctor that could help me navigate the treatment options.  So, I search through medical journals accessible via the internet and read as much as I could, but I still had everyone telling me I had to make a decision "now", "within the month," etc.  

I learned much more AFTER I had made my decision (RP), much more, than before.  I hope you take the time to gain the necessary amount of information to make your decision.  Any medical journal articles, scientific references I'd post here wouldn't be applicable and might be misleading for you since a Gleason 9 is a different animal than a Gleason 6, with different considerations, nomogram results, etc.  

Take the necessary amount of time, and good luck.  Don't be scared into making your decision - you've got this and you can beat it. 

Pete

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

Wish it would work, we would all be doing or have done it.  A good diet can  help your body fight any kind if disease or condition.  The human mind is a powerful tool to help in the fight also.  With all that said TC,  I doubt if you can reverse the cancer and make it dissapear just by eating a certain food(s) or chanting a certain hymn.  You do owe it to yourself to take some time and investigate all the treament methods, the people on this board can help with great ideas and resource links. Most if not all people who comment here have been there done that, a great source for you to pull on.

Well, time to go on with my day and hit submit.

Dave 3+4

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