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Needing some input, had a positive biopsy

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Posted 9/2/2011 4:14 PM (GMT 0)
Hello,

I want to start off by saying I am skeptical of any postive outcome from treatment. My father was diagnosed in his 60s, he had RP surgery, had all of the negative side effects (ED, incontinence) and then a recurrence, now he's being treated for bone cancer.

I am 55, I have a T1c grade diagnosis with a 3/3 gleason score, total 6, 3 biopsy cores positive 12 negative, PSA of 7. I do not know my ratio to free PSA or PSA density, which I may request on a subsequent visit. DRE shows nothing, the biopsy was done based on elevated PSA.

The methods of treatment seem both barbaric and iffy at best. After reading the materials provided by my urologist and online, I see that it is a tradeoff and gamble where one trades one's quality of life for possibly living a bit longer until a recurrence.

Aspects of my life are frankly fairly miserable as they are without having cancer: The only reason I am considering treatment at all is to spend more time with my elementary-school-aged children. 

My options are "active surveillance", RP surgery, or brachytherapy. Active Surveillance involves getting a needle jammed deep into one's ass about 15 times every 3 months or so-- I had the biopsy about four weeks ago and still have discomfort, so generally not interested in that kind of life.

Nomogram/calculators are available that weigh one treatment form against another, but there are none that include the option of no treatment. I can understand this because the win/loss people that choose not to gamble can't be tracked by "the house".

So my question is: is there information/experience regarding how long one can expect to live without treatment, given  the diagnosis described above?

Posted 9/2/2011 4:26 PM (GMT 0)
I'm very sorry to hear of your diagnosis and also your father's situation.

Nevertheless, I have to say that I can't think of a medical treatment for ANY kind of cancer that might not be described as "barbaric and iffy." Cancer is a life threatening illness. Trying to "cure" it always involves trade-offs (e.g., loss of a breast, physical disfigurement, loss of a limb, loss of a lung, debilitating chemotherapies, and so on). Having gone through a DaVinci prostatectomy, I don't feel that the treatment was barbaric, though I suppose it's always "iffy." Nevertheless, I feel much better about my life post-surgery than I ever could have knowing that a potentially deadly cancer was growing in my body. I would say I now feel 99 percent normal.

I applaud you for considering your children when contemplating your future; now I hope you will try to take a more objective look at your personal situation. Your cancer seems to have been found early and I suspect your prognosis for treatment would be very good. Thanks for posting, and good luck as you struggle to come to terms with your diagnosis. These are never easy decisions.
Posted 9/2/2011 4:43 PM (GMT 0)
I'm going through exactly the same feelings. I still haven't decided what course of action to take but here are 2 sites that offer good information on the watch and wait option:

http://www.watchwait.com/links.php

http://www.yananow.org/
Posted 9/2/2011 4:48 PM (GMT 0)
Sorry to hear about your biopsy outcome, but welcome to the forum. You'll get lots of good information and support here. I can't answer your specific question about life expectancy without treatment, but I have a few thoughts.

Your reluctance about treatment is understandable and sensible. With your numbers you have many options, and you should explore them all thoroughly.

Your numbers are very encouraging, and are similar to mine, although your PSA is higher than mine was. It's important to realize that a Gleason score and biopsy are indicators at this point. While it's certain that you have cancer if the biopsy results show it, your Gleason score could actually be higher than they now think. Mine turned out to be higher after surgery, and that's a common situation.

That's part of the argument for surgery: you don't really know for sure what you're dealing with until they remove the prostate and section it. On the other hand, the quality of life considerations you mention are nothing to sneeze at, and there are times when I question whether I made the right choice with surgery. It's a viable option and saves a lot of lives, but don't let yourself get bullied into surgery.

On the other hand, AS could be a fine option for you, although I'd suggest getting a couple of opinions about that. If you're considering treatment options, I'd see a surgeon, a radiation doc and a general oncologist who specializes in Pca. They all have their professional biases, and it's worth hearing them all out. The general oncologist may be the most informative; he or she won't likely be married to any particular treatment option. You do have time to consider this, and immediate treatment isn't something you need to rush into.

I assume you've found some reading material already, but Dr. Patrick Walsh's book (the updated version) is considered by many to be the Bible. He's a surgeon, and has a surgeon's bias, but he also offers good information on other options. Highly recommended.

The disheartening truth is that there is no risk-free path available to you. There are horror stories for all treatment options, including radiation and AS. If you read enough of the posts here, you'll find them. In the end you'll have to choose your risks with incomplete information and a certain amount of doubt. It may end up coming down to which doctor you trust.

The encouraging truth is that survival rates with this disease, especially when caught early, are excellent.

Good luck with your journey. You probably already know this, but you're probably dealing with a slow moving cancer that often can be safely watched and almost always is treated successfully. On the other hand, you'll find if you read enough of the posts here that it can also be deadly, with devastating quality of life implications. This is nothing to trifle with.

Do your homework, choose wisely, don't freak out, and best of luck with your journey. Chances are you'll be just fine.

Jonathan
Posted 9/2/2011 4:52 PM (GMT 0)
Regarding your question regarding how long you can live without treatment, this link may be helpful:

http://www.prostate-cancer.org/pcricms/node/174
Posted 9/2/2011 4:56 PM (GMT 0)
<<The only reason I am considering treatment at all is to spend more time with my elementary-school-aged children>>

That seems to me a VERY good reason to consider treatment. And, statistically -- based on the information you provided -- you probably have an excellent chance of cure. You can confirm this by reference to some of the nomograms -- for example, this one: http://nomograms.mskcc.org/Prostate/PreTreatment.aspx

Here's another reason to consider treatment: untreated, advanced prostate cancer can be very painful and make your life miserable. If you have a good chance to avoid that sort of misery, you probably want to take it. (I am not at all opposed to Active Survailance, but that is very different than "doing nothing" -- and as you point out, there are some "downsides" of AS -- both physical and psychological).

You might want to go to a local prostate cancer support group and try to talk in person with a bunch of guys who have had surgery and Brachy. You can get a sense of how "barbaric" their experience was -- or was not -- and whether they are glad they did it, etc. People here will also give you their views and experiences.

None of what I say is medical advice. I am not a doctor and am not qualified to give any such advice.

Best wishes, Medved
Posted 9/2/2011 5:49 PM (GMT 0)
Starchild,

Sorry about the diagnosis. I remember that it was right after my diagnosis that I was at my low point with lots of anxiety regarding every aspect of the whole process, from the treatment, chances for cure and possible permanent side effects. For most of us, things do get better once we are further along in the journey.

The only thing I can suggest is not to assume you will follow the same path as your father. You didn't give your father's statistics so it is very possible you have a diagnosis with a much, much better prognosis. Plus, from the ages of you and your father that you mentioned in your post, it sounds like your father had his treatment at least 10 years ago (maybe even a lot longer) and treatments have progressed significantly since your father was treated.

Good luck!

Dan
Posted 9/2/2011 6:06 PM (GMT 0)
You mentioned a few options. Have you taken a look at Cyperknife? They are having excellent results with Gleason 6 patients.

I had Davinci two years ago for my treatment and have had excellent results.

Wishing you the best on your decisions.

Lewvino

 

Posted 9/2/2011 6:35 PM (GMT 0)
Hello Starchild and welcome to HW.  Sorry you have to be here but you will find lots of support and help on this forum.

I have a couple of thoughts to offer:

1  I suggest you have another reading of your biopsy slides by an acknowledged PCa expert such as Dr. Bostwick of Bostwick Labs or Dr. Epstein at Jonhs Hopkins.  Second opinions are valuable and routine and your current urologist should not object (if he does, that tells you something as well).  A special reason for doing this is do make sure you are dealing with Gleason 6 if you are considering AS.  If a second opinion reveals G7 or higher that might take AS off the table.

2.  There are a number of threads on this forum re AS, a couple of them within the past week.  I suggest you read these over for some perspective on this option.  The biopsies get less frequent with time and can be done with IV anesthesia if you wish.

3.  You mentioned brachytherapy as an option but I don't know if you have visited an experienced radiation oncologist who specializes in brachy.  If you do, I think you will learn that for your stats the long term cure rate is as good as for surgery but with considerably less onerous side effects.  I invite you to read my"journey" at the end of my signature for a first-person account of brachytherapy.

Good luck and please keep your spirits up.  This can be dealt with effectively.

Tudpock (Jim)

Posted 9/2/2011 6:41 PM (GMT 0)
Starchild: Wow not sure where to start with this thread I guess I will just jump in and be direct. You father was on of the guys were the PCa got out into the system.. yep is happens. I have a long history of PCa in my family and was quite aware of problems and successes.

You also need to know that many guys have successful treatment for PCa. When I say successful I mean have had surgery and got that darn stuff cut out. After that they have remained in the zero club after that. So far I am just at the 3 year mark and doing very well. I have a wonderful life and looking to growing old. Can it come back. Sure thats why we do a PSA.

Some of the guys here on HW have had to follow up with RT.

One of the things I do know is my Grandfather was not treated in time and he died from PCa. My father was treated and never had a re-occurrence. Know that there are successful outcomes.

Feel free to ask all the questions. Man did I have a thousand of them. The guys here are great help. Best of luck with your decision making.

If you want to talk to any of the guys here if you click on their name many have an e-mail where you can contact them and exchange numbers. I do include myself on that list.

Cajun jeff
Posted 9/2/2011 7:06 PM (GMT 0)
Thank you all very much for all of these replies. I recognize that all of you are facing or have faced the same thing, and the most difficult aspect of this is having to make a decision that cannot be "undone".

Having read advice regarding pathology, I have already requested a second opinion on the biopsy slides.

My urologist seemed to favor RP as opposed to brachytherapy, because he seemed leery of the longer term effects of radiation on the surrounding organs, but the Sloan-Kettering nomogram definitely indicated a similar outcome for both. I look forward to reading your experience on this, Jim.

Sorry if I have stated things a little brusquely, but my understanding is that once a surgeon opens you, their charter is to remove everything that is cancerous and ask questions later. I do understand that this makes sense, but it's writing a blank check that is paid for with very personal currency-- and I know that you all understand this as well.

Thanks so much for the replies.

Posted 9/2/2011 7:10 PM (GMT 0)
Starchild:

I was were you are now back in April after my positive biopsy for G7 PC with 2 cores out of 12 positive at 15% & 20%.  My URO told me in his best guess with my PC untreated my life expectancy was maybe 10 years. I realized that I had 2 options either rip it out with surgery or burn it out with some form of radiation both of which sound barbaric but dying of a terribly painful cancer is not any option any sane person would opt for. At you age you have only 2 options treat the cancer or do not treat the cancer. Treated you have extremely good odds you can be prostate cancer free the rest of your life. Untreated the only guarantee is that if you live long enough and do not die from some other cause first the PC will kill you.

After my elected robotic surgery, which was a piece of cake, on June 8th my pathology of my tumor was much different. It still graded as G7 but 60% of my prostate was tumor involved. Fortunately,  it was all in the center core of the organ and was 100% organ confined. My URO was surprised that it was as large a tumor as it was because the biopsy did not indicate that. His best guess again after the pathology was that I had maybe 2 years before the PC would have been outside the prostate and that it could have been terminal in 5 years.  I just got my first post op PSA this week and it was  less than 0.07 and I am looking forward to another 30 years or so of  zeros.

Good luck with your PC journey and making decisions that not only you but those who love and care about you will have to live with. There are a bunch of really great guys and a few gals in this forum who are here in this time of need for you.

Terry the Water Guy

Posted 9/2/2011 7:15 PM (GMT 0)
Starchild;
I and most others on this board can identify what you are going through. Yes, all treatments are barbaric, but in many cases necessary. You can most likely live another 15 years or longer without any symptoms and perhaps much longer. There are many instances oof men that have refused treatment and are still functioning after 20 years. AS only requires a follow up biopsy within 6 months to a year and scans like color doppler can eliminate many follow up biopsies. You can at least postphone treatment for a good number of years with proper monitoring. Some treatmens such as brachytherapy have much less side effects than surgery and you should investigate this option along with cyberknife and IMRT if you want to reduce the possibility of side effects. Pick up a copy of "Invasion of the Prostate Snatchers" by Dr Mark Scholz as it is a good primer on AS. You have many options at this point and plenty of time to research all options and get 2nd and 3rd opinions.
JohnT
Posted 9/2/2011 7:35 PM (GMT 0)
Thanks again for these replies-- here are some questions:

Are there any existing posts or experiences that indicate what questions might be best to ask regarding the biopsy per se? 

Posted 9/2/2011 7:47 PM (GMT 0)
I was diagnosed in 2007. I just wanted the cancer out of my body.
I had the robotic surgery. It was not fun but it was something I could handle.
I had a problem with urination before the surgery and my surgeon remove a non cancerous growth at the base of the bladder, which cleared that up. I went completely off pads in about two months. ED is still a problem but something we can handle.

All in all I would think dying of prostate cancer is "barbaric" and something you should try to avoid. My Gleason 6 was upgraded to a 7. I suppose I could have tried AS or just ignored it but am glad that I did not.

I have a friend who has been on AS for about 8 years and he is doing great. I would have been a basket case with worry. I still worry before each PSA test.

Good luck in your decision.
Posted 9/2/2011 8:21 PM (GMT 0)
Starchild, just a quick bounceback.  It is not terribly surprising that your urologist recommends surgery.  Since he is a surgeon this is most likely the treatment with which he is most comfortable and experienced.  Again, an experienced radiation oncologist who specializes in brachytherapy would be good for a contrasting opinion.

Re the biopsy per se, the only thing I can suggest is to get the written copy of the results.  That will show all of the data including location of the tumors.  location will help experienced posters on this forum give you some educated remarks.

Also, I will second JT's recommendation of "Invasion of the Prostate Snatchers".  Dr. Walsh's, "Guide to Surviving Prostate Cancer" is excellent for the basics but "Invasion" can provide you with some important counter points to consider in your quest.  One, of the authors, Dr. Scholz, also treats a number of the patients who post on this forum.

Tudpock (Jim)

Posted 9/2/2011 8:29 PM (GMT 0)
I'd like to tell you my PCa was caught early on. but I can't looking back on my situation. There were a few times when I told my Dr., No need for a DRE. We both knew my prostate was enlarged, although I received no treatment for it. Maybe if I had a DRE the Dr. might have felt the nodule on my prostate some six months earlier.
An earlier DRE may have spared my right side nerve bundle. Yet, when all is said and done the cancer had done it's nasty work and invaded the nerve bundle. I don't really care how "slow" this cancer grew, for me it was all to quick. Try to pin down an answer has to how slow is slow and you'll get plenty of shoulder shrugs, there's no knowing, depends...
Those were answers I couldn't live with.
I ended up a T3, things would have only gotten worse for me as time moved on. I would tell any guy who's had a positive biopsy to get treatment sooner rather than later.
Would I have been spared the ED problems I'm facing now if I had acted earlier? Who knows. But it is something I think about often.
You're a younger man, why sit around waiting, dwelling on the question of "What is the cancer doing now?"
Posted 9/2/2011 9:10 PM (GMT 0)
Important things to look at on your biopsy.
Gleason score
Number of cores
%cancer in each core.
location of the tumor.

Things you want to Know:
Do you have a tumor in the APEX. This is unfavorable to surgery.
Are all the cores from one area or do you have PC in both lobes. If it is only in one area that is more favorable for AS or a focal therapy.
What is the tumor volume? The larger the volume the more dangerous. A color doppler scan or an MRIS can identify tumor volume and location and is important in making a treatment decision.
If I were you there are other things I would want to know before making a decision.
PCA3 which is a urine test and may indicate agressiveness.
Tumor volume: which can be calculated using psa and gleason and prostate size. The PCRI web site used to have a tumor volume calculator.
PSA density; you want it less than 1.5
PSA doubliing time; you want it >3
Keep asking questions as they will only help you understand this disease better. All PC is not created equal. There are slow growing indolant types that will never affect you and agressive types that will surely cause you harm. You need to identify which you have and there are ways other than invasive procedures to do this. Most involve monitoring over time to see how the tumor is acting.
JohnT
Posted 9/2/2011 10:00 PM (GMT 0)
I would be suspicious of AS esp with a PSA of 7.
Posted 9/3/2011 7:22 AM (GMT 0)
  It would appear that they have caught your cancer early, so your self prognosis that there will be no good out come probably is premature. It's natural to get down in the dumps when first diagnosed with cancer especially when you have lost a loved one to the same cancer. Talk this over with your doctors and and make an informed decision not a reactional decision.

Post Edited (p_elliott) : 9/3/2011 11:08:06 PM (GMT-6)

Posted 9/6/2011 4:48 PM (GMT 0)
Thanks for all of these replies. I will definitely get more information about the biopsy results.

I have some questions:

What is "AS"?

When "PSA doubling time" is referred to, what is the unit of measure?

What does "free PSA" and the ratio regarding that refer to?

Some information that may be helpful: my diagnosis profile makes me eligible for the Cyberknife treatment, and there is a facility that is not too far from me.

If anyone has specific experience with Cyberknife treatment, it would be great to know more.

Posted 9/6/2011 5:17 PM (GMT 0)
AS is Active Surveillance (used to be called Watchful Waiting).

PSA Doubling time doesn't have a measure per se, just the length of time it takes the PSA to double in months. A precise definition says "measured in nanograms per milliliter per year", but that also works under the idea that you are having annual PSA tests. In the discussion, it is said to be commonly expressed as the number of months for post treatment cases.

"Free PSA" is a test that determines how much of the total PSA is "unbound" to another protein. There is a lengthy discussion in Scardino's "Prostate Book" (2010 ed.) p. 152-53. Summarized, he says that a free psa of >25% suggests BPH, while <10% is an indicator of possible cancer.

You may want to post a new thread asking about cyberknife. At least one member here has done that, but he does not post often, so you'll need to get his attention.

Posted 9/6/2011 5:29 PM (GMT 0)
starchild7

I am so sorry that you had to join this club, but as you have found out in a very short time, there are alot of amazing men, spouses and partners that participate on HW and you will find it to be a wealth of information, recommendations and validations as to the emotions that you are experiencing. I joined this website in February of this year when my world came crashing down. I have family history of this dreadful disease. Unfortunatley, I got the most severe case of my siblings, father and his two brothers.

The best advice I received early on from this forum was (i) PC is a slow growing cancer and you have time to read and research and meet with many doctors in their respective fields (ii) find the best doctor possible that has treated thousands of patients and has a great reputation.

I met with a radiologist oncologists (the best in my region) three times after I had my biopsies and was very close to choosing Brachy, I also met with a urologist surgeon that specialized in surgery (both Robotic and open) and of course he advocated for surgery. I am a Gleason 9, with cancer in my prostate, cancer that escaped out of the capsule, a lymph node, seminal vesicles and my critical nerve bundles.

After spending 6 weeks of research I concluded that the best decision was for me, was to have a open RP, so the expereinced surgeon could do a wide cut on the margins surrounding the prostate and analyze the critical nerve bundles and make his judgement if they both needed to come out and they did. I decided against Brachy becasue as I met with the surgeon, he said that if a patient has Brachy, it causes way too much scar tissue and makes it impossible to have surgery. But I can always do salvage radition and salvage hormone therapy when and if my cancer comes back. Somehow, I have made it four months and have no dectectable cancer and greateful I have had time to heal.

That being said, I will be direct and upfront, the incontinence post surgery is unpleasant. In reading posts hear, some have immediate continence when the cathether came out, it has taken me four months and I am down to two Depends in 24 hours and continue to make progress. My ED is total, and I am just now experimenting with shots of Trimix so I can have an erection. The hard decisions my wife and I made worked out just fine. The goal was to eradicate the cancer from by body and it worked, albeit only four months but I will take any day of being cancer free with the side effects that came with surgery.

The surgery and recovery isn't that bad. Again, find an expereinced surgeon with a great reputation if you elect to go with surgery or find the best radiologists if you go the Brachy route. Your odds of eliminating this cancer is much higher if you take action now versus watiing for it to progess. You mentioned your children as a priority, which you very well should. My daughter just had a daughter a few months ago which has brought an amazing amount of love and joy into my life. So recalibrate your goal, take decisive action to irradicate this cancer so you can and will live long enough to experience the joys of being a grandparent.

Good luck with this new and unfortuante adventure. We all at HW are here to support you.
Posted 9/7/2011 3:52 AM (GMT 0)
You appear to be a good candidate for High Dose Rate Brachytherapy monotherapy. I had HDR but had to add IMRT and HT due to my higher risk situation. Learn more from www.cetmc.com the website of Dr Jeffrey Demanes the HDR pioneer that is now the head of radiation brachytherapy at UCLA.
Posted 9/8/2011 1:09 AM (GMT 0)
In your research of treatment options consider Targeted Focal Therapy. This approach treats only the cancer while preserving quality of life.

I had TFT a year ago. I have no urinary or sexual side effects. Attached is the website for the University of Colorado where I had the procedure.

http://3dprostate.com/
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