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Slow Growth? NOT Always.... Don't wait too long, here is why

Gleason 9
Posts: 7
Joined: Feb 2011

As a bit of background, I'm a guy who got annual physicals.

After my physical in '08 my doc said, "Hey your PSA is up slightly (2.9) lets do it agian in 6 mos."

I waited 6 mos between PSA tests and I was at 4.8. "Get a biopsy" the Doc told me. Hmm, I thought, well it's a slow growing type of cancer and I have a bunch of stuff going on at work, I'll get a biopsy after things settle down in a couple of months.

9 weeks later I did the biopsy (AKA BB gun butt attack) and 8 weeks after the biopsy I was in Surgery (daVinci RP)

Well, too late. Although my PSA was only 6.7 at time of biopsy my Gleason was 9 (5+4) and the cancer had already made its way through the prostate and the capsule to the bladder neck. The doc took all they could find, but once the barn door is open...

So why this story? I keep reading posts where patients are told "take your time", and I'm here to suggest that you make an informed decision but don't "take your time" about it.

In my case 6 mos between PSA tests was too long.

Nine weeks to biopsy was too long.

Eight weeks to surgery was too long.

All-in-all I let 10 months go by before taking direct action (surgery). Had I simply shortened all of those steps I might be cancer free today. Instead I've been through surgery, hormone therapy (6 mos Lupron), radiation therapy (38x IMRT) and chemo (6x Taxotare). And yep, I've still got a rising PSA.

So please, be afraid, get on it. Today.

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lewvino
Posts: 1004
Joined: May 2009

Sorry to read about your experience but thank you for sharing. This cancer is such a beast and rares its ugly head in many different forms.

Please keep us posted on how you progress!

Larry

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Kongo
Posts: 1167
Joined: Mar 2010

Gleason 9,

Thanks for sharing your story and welcome to the forum. While in many, if not most, cases prostate cancer is indeed a slow growing disease, your situation is a stark reminder to all of us that aggressive types of this cancer can progress rapidly. Unfortunately, our best science today cannot identify whether or not the cancer detected in our bodies is aggressive or indolent.

I agree with you that after diagnosis men need to make decisions with due deliberation and taking the time to become fully informed of the types of treatment appropriate to the stage and pathology of their disease but to not dawdle unnecessarily in making their treatment decision. In particular, I think those men choosing AS need to have enough data early on to determine whether or not their cancer might be aggressive. It's not an easy situation to figure out.

Thanks again for sharing your experiences and best of luck as you fight this disease.

K

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VascodaGama
Posts: 1526
Joined: Nov 2010

Hi Gleason9
I am sorry for you case history. You have confronted in a matter of two years what many do in a decade. We cancer patients learn and were told that normal PSA levels are between 0.0 and 4.0 ng/ml (varying with age), but your case is again another example that such is not taken as valid by some physicians.
I have come across with several guys who have been diagnosed with PCa in PSAs of 2.2, 2.6, etc. The importance of early PSA screening is useful and valid to “save lives” if one gets quick answers to the diagnosis. It is to say that PSA alone is nothing else than a “flag”, the biopsy is the real confirmation.

I would like to suggest to the many reading this thread to divulge the importance in the soonest investigation of possible causes of a not “so” normal PSA. A fluctuation, constant rise or values above the recommended stipulated levels in regards to age, should be taken seriously.

In your case I do not understand why you were not advised in going through that investigation the soonest. I am surprised as well, that your doctor recommended you surgery without considering other “tools” from the pathologist report (biopsy) which are important in the decision of a treatment choice. You may have been already systemic before surgery and a combination of chemo + hormonal seems to be successful to control that type of aggressive cancer.
I had a PSA of 24.2 (worse than yours) and a week later cancer was confirmed through biopsy. The information collected, gave me three month to be acquainted with the meaning of my status, treatment choices and their side effects.

I wish you the best in your bumpy road. Hopefully your post alarms many in similar cases.
VGama

FreddyJoe
Posts: 42
Joined: Dec 2010

I agree that the PSA is a flag. A friend of mine who found out I was going to have a Biopsy has had two, because his PSA was elevated- both of the Biopsy test were negative. In my case the biopsy was not negative.

mrspjd
Posts: 688
Joined: Apr 2010

G9,

I am sorry to read of your dx of advanced hormone resistant PCa and appreciate you sharing the many lessons learned from your experience based on the time delay of almost one year from PSA testing & follow up testing to biopsy to dx & progressing to tx. My husband found out the hard way that many GP’s (General Practitioners) & Internists, while adequate in performing annual/yearly basic physicals, have little or no training in PCa or in performing DRE’s and may underestimate or not understand the significance/nuance of PSA changes/rises, no matter how small the increment. Low PSA does not necessarily mean indolent PCa because some aggressive forms of PCa may not produce much PSA; therefore, PSA is not always a red flag for PCa. Any PSA activity/rise, velocity change, rapid doubling, no matter the “low” number, etc., any ED or urinary flow issues may also be red flags and warrant immediate action and referral to an experienced and skilled urologist for evaluation. The insidious nature of PCa is such that there is often a fine line between indolent slow growing cancer and aggressive forms of the disease. No two cases are exactly alike.

Make no mistake, the phrase “take your time” in reference to PCa advice, NEVER should be interpreted literally and is not meant to be synonymous with take “no action” or “inaction” due to inconvenience. Just the opposite—“take your time” means “take action”—begin a fast-paced PCa education; see a urologist, seek many 2nd opinions; ask questions; identify & schedule appropriate add’l diagnostic testing to further define PCa staging; attend face to face free community PCa networking groups; read PCa books and research reputable PCa websites and clinical trials--all in a timely (take time) manner.

On this CSN PCa forum, PCa tx decisions hastily made under duress because of fear, confusion, pressure (from doctors and/or well-meaning family members), or out of ignorance are often discouraged in favor of taking action (time), again in a timely manner, to educate, investigate, and research, so that any decisions will be informed choices based on weighing educated risks/benefits in hopes of obtaining the best possible chance for successful tx outcome. In the context of suspicious PSA activity, and in all fairness, the advice most often given on this forum is in favor of erring on the side of caution by NOT delaying/putting off follow up PSA testing longer than 3 months (at most) and scheduling a biopsy and/or an initial biopsy consult soon thereafter.

G9, with all due respect, the intent of this post is in no way meant to be judgmental, critical, or insensitive to your situation. Along with your story, the intent is to highlight & further clarify the meaning and importance of a well-intentioned and often-used phase (“take time”) on this forum. It bears repeating: Each man is his own best advocate when it comes to PCa as no two cases are alike. In a timely manner, take action and learn as much as possible about your own unique PCa case at the earliest suggestion of suspicious activity and at dx. It just might make a difference.

mrs pjd

PS: If you haven't already read the following link about treating advanced PCa, you may find it helpful. http://csn.cancer.org/node/210697

inspirejustin
Posts: 3
Joined: Feb 2011

hey guys i'm just a concerned young man 34 who 2 years ago started having urinary problems, dribbling, urgencies, etc and my psa was 1.9 saw a urologist who performed the exam and said nothing to worry about, you young it feels fine and was put on flowmax and now Im still having the same symptoms and now my psa is 3.3 and my doc wants me to go back and see the urologist again. just wondering what you guys think or suggest cause i'm a bit concerned...
i lost both my grandpas to prostate cancer

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Kongo
Posts: 1167
Joined: Mar 2010

Justin, I'm sorry that you're experiencing these troublesome symptoms and you are smart to be doing your own research in addition to seeking the advice of your doctor and a urologist.

I am sure the doctors told you that prostate cancer in a man as young as yourself is so rare as to be virtually unheard of. On the other hand, despite how rare such a condition might be in a man your age, given your family history it is probably medically possible to have prostate cancer but I truly believe another culprit is at work here.

Symptoms such as you describe can be caused by a number of different conditions. BPH (benign prostate hyperplasia) can manifest itself in men as young as 30 and is a condition where the prostate enlarges through the growth of benign tissue (not cancerous) in the prostate. Eventually the enlargement can reach a point where it begins to squeeze the urethra (the tube that goes from your bladder to the penis to allow urine to pass) which happens to go through the center of the prostate. This squeezing causes exactly the symptoms you describe which include dribbling, a weaker flow, hesitancy in voiding (start and stop urine flow), and in extreme cases the urethra is pinched so tightly that urine cannot pass at all. Men who suffer from BPH (often referred to as an "enlarged prostate") are also more likely to contract urinary infections which can also cause the symptoms you describe.

While Flomax is often prescribed for BPH it does not always work and Flomax has its own set of side effects that can affect erectile potency, volume of ejaculate, and other things as well. Flomax is all about trying to keep the urethra open and does nothing to shrink the size of the prostate which is most likely the culprit of your symptoms. A drug called Avodart can shrink the prostate but it has side effects too that you should be well informed about before taking the drug. There are physical procedures such as a TURP or TUNA which actually remove benign prostate cells that have become enlarged that is very effective in long term treatment. You might want to look at the Wikipedia entry for BPH to learn about these processes.

Your urologist can determine whether or not your prostate is enlarged through a digital examination or by using an ultrasound probe.

You are smart to be seeing a urologist for this. Since the Flomax treatment isn't working for you should be prepared to discuss Avodart or the physical procedures to remove excess prostate cells. Many researchers believe that although BPH is not cancerous, if it is untreated and inflammation within the prostate occurs, prostate cancer has a better chance of developing. Another condition you should discuss with your urologist is prostatitis which can cause your symptoms as well and there are a number of antibiotics that can be administered to treat this condition.

Keep in mind that many things can cause your PSA score to elevate that have nothing to do with prostate cancer. Having sex within 48 hours of a PSA blood test can elevate your PSA reading by as much as 2 points. A urinary tract infection, BPH, prostatitus, certain over the counter medications, bicycle riding, and even a hard stool shortly before your blood draw can cause a false high reading.

Knowledge is power for these conditions and please continue to do your research so that you can be an informed and knowledgeable patient when you meet with your urologist.

Best of luck to you.

K

mrspjd
Posts: 688
Joined: Apr 2010

Justin,
Kongo has offered some excellent info. Hopefully & most likely, your symptoms are treatable, with causes unrelated to PCa. A few add'l suggestions: Urologists, as w/most medical specialities, fall into many categories, from excellent to terrible and everything in between. It is critical to locate and consult with an experienced and skilled urologist who really knows his/her field of expertise (technical word = "stuff"). After first ruling out all other possible causes of your symptoms, IMHO, with your family history and the PSA results you posted, I would suggest your PSA testing be followed/monitored closely, possibly every 3 months for 6mos-12mos. If nothing unusual observed, yearly thereafter to create a PSA history. If indicated as a result of suspicious PSA activity, then a biopsy would be in order. For now, let's not put the cart before the horse, but know "biopsy" might be a topic for discussion w/your doctor.

Lastly, if any urologist writes you off as "you're young/fine, nothing to worry about" without a thorough evaluation including a family history, add'l follow up testing, such as tracking your PSA, yearly DRE, etc., I would recommend finding another urologist to consult.

I hope you return to the CSN PCa forum (perhaps start a new thread/discussion topic related to your current questions) to share news of your journey, hopefully not relating to PCa, but either way, to let us know how things worked out for you. Many of us, I for one as a mother, have sons your age, so I certainly feel for your situation.
All the very best,
mrs pjd

Kentr
Posts: 111
Joined: May 2009

Your Feb 3, 2011 post said the following:

"Keep in mind that many things can cause your PSA score to elevate that have nothing to do with prostate cancer. Having sex within 48 hours of a PSA blood test can elevate your PSA reading by as much as 2 points. A urinary tract infection, BPH, prostatitus, certain over the counter medications, bicycle riding, and even a hard stool shortly before your blood draw can cause a false high reading."

I knew about the sex within 24 hours deal but had no idea bicycle riding or a hard stool could cause a false high reading.

What's the theory (or facts) supporting those two situations can cause a faulty high reading?

Thanks,

Kent

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Kongo
Posts: 1167
Joined: Mar 2010

As I understand it, anything that pressess against the prostate can cause PSA to elevate. At orgasm, the prostate spasms (one of the several things about sex that men find pleasurable) and ejects the fluid we call ejaculate which is a nutritious and safe method for transporting sperm and PSA is thought to be able to break down the mucuous membrane that surrounds the egg allowing for fertilization. Ejaculation can cause an immediate spike in PSA.

When you see the guys on CSI-whatever spraying crime scenes with dead women under a black light, they're using a chemical that detects PSA which is presumptive for semen (although I'm waiting for a crime scene movie where the urine from a man with prostate cancer causes the same reading....or maybe we really don't want to see that episode)

Other activities that press against the prostate can cause an increase in PSA without orgasm such as a hard stool passing through the colon that presses against the prostate or the horn on a bicycle seat. A DRE can also cause PSA to elevate which is why men getting physicals are advised to have their blood drawn before receiving the digital exam. These other types of activities that can cause PSA to elevate have less of an impact than ejaculation but can still add to the score in the near term. PSA is generated in the gladular tissue within the prostate gland and when you press it (or it spasms), some of it comes out and makes its way into the bloodstream.

For men with prostate cancer, the relatively small increase in PSA caused by a hard stool just before your blood draw or riding your bicycle to get the blood test is probably not too significant, but for a young man like Justin with a PSA that is probably normally quite low, a small bump up might be worrisome.

There are several articles on google if you want to search on PSA. In my own case, after treatment, where I retained my prostate but would be worried about a rising PSA as an indicator of potential recurrence, I asked my doctor about things that can cause PSA to go up and he told me the usual suspects like sex and DRE, but also added the bit about a hard stool and the bicycle seat...both of which make sense if you realize that massaging the prostate causes PSA to rise.

Interestingly, small amounts of PSA can be found in breast milk. Go figure.

K

hopeful and opt...
Posts: 1291
Joined: Apr 2009

I hope that your elevated PSA is cuased by a urinary tract infection or having sex or ridding a bike before the test..........( by the way did the doc do a digital rectal exam for you, and if so was the PSA taken afterward or before.......a PSA after a digital rectal exam will be elevated.

After eliminating the above causes, i would consider getting at least a 12 core biopsy, from a doc at a major medical center, and very regularly be monitored.....the biopsy will let you know where you stand, while the PSA's are only indicators....even though you are only 34, with your history there is a distinct possibliity of you having this disease...early dectection can same ones life.

I wish you the best

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

Hi Justin

Kongo above has given you a good example of what can be the cause of your rising PSA. Probably you have had already a DRE (digital rectum examination) which will add information to your diagnosis. Considering prostate cancer, the normal PSA for men age <50 is 1.2 ng/ml, but your info indicates that your PSADT (doubling time) is 30 months which classifies you more for possible UTI infection, as Hopeful says above. This can be caused by VD or urethral stricture due to inflammation (dribbling, urgencies). Inflammation (BPH) is usually treated with medication (Flomax, etc) but you may need to take some powerful antibiotics for the infection.

You are doing well in being “watchful” upon the matter now at your young age because cancer is known to run in members of the same family.
According to the Cancer Research UK, there is some evidence to that. They say, as I quote here

“……If you have a relative diagnosed with prostate cancer you are at higher risk compared to the general population. If your father had prostate cancer your risk is 1.5 times higher. If you have a brother with prostate cancer, your risk is higher, at just under 3 times the average risk.
The age your relative is diagnosed with prostate cancer is also a factor. If they were diagnosed before the age of 60, this increases your risk by about 4 times the average. And if you have more than one first degree relative diagnosed with prostate cancer (at any age) your risk is also about 4 times the average. A first degree relative means father, brother or son….”

Of course these are only probabilities of having PC, bud the research is done based on real data, and surely many in the same family will never get it. My son, just turned 40, is in the same probability scale of high risk to get prostate cancer as you. Hopefully you and my son will never experience such disease; however you should be ready to prevent any advance of the “bad guy” in time.

In your next consultation with the urologist explain in detail not only the symptoms but your family history with PCa, and get a definite answer to your case.

Wishing you the best,
VGama

inspirejustin
Posts: 3
Joined: Feb 2011

wow the responses have been fantastic! thank you all so much...esp kongo who has put it in a little better perspective for me. 2 years ago when all these symptoms started and my first psa showed 1.9 my family dr. suggested chronic prostitis in which i was given the antibiotic cipro. I was on it for a month which helped a lot but some of the symptoms were still there so we continued it for another month and I felt pretty good but the symptoms slowly re-occured and my family dr, who then said i just need to be on supplements like prostaid and saw palmetto so I felt i wasnt getting anywhere with him so i wanted a second oppinion and saw another dr who then prescribed me the flowmax and sent me to the urologist who did a physical exam by feeling, nothing digital was done. The urologist said i was fine, healthy young man...the flowmax seemed to help for awhile until the symptoms started coming back again so we did some blood work last week showing the 3.3 in which i'm getting another appointment to see the urologist again. will keep you advised!
thank you all so much for your kind words and concerns
and btw...uti was also ruled out as well and there was nothing done before the blood work was taken to cause the spike such as sex, riding bike etc...

Gleason 9
Posts: 7
Joined: Feb 2011

First to Justin: I think you are doing exactly the right kind of things: It really does help to keep on it, get second opinions, keep the information coming in and be thinking ahead of your next test result. So, best of luck and with your approach, I believe you can beat this.

Larry & Kongo: Thanks so much for your encouragement and for sharing your own experiences. It's the sense of community and personal involvement that you add to the board that helps bring us all together.

Mrspjd: Thanks for your post, thoughts, and link. I don't really know your specific situation but I can only imagine how helpful and important you have been in your husband’s journey and your sharing with the rest of us is just great.

VGama: Thanks for your post too. I hope my post will encourage others to keep the pace in learning, getting tested and treated. You seemed interested in my treatment decision so let me share a bit more with you the thought process I went through. Right after I got my biopsy results, I did a bone scan (which did not reveal the incursion of the tumor past the prostate capsule). Had the scan shown the true extent of the tumors growth I would not have had surgery (no point). On the other hand had the biopsy results yielded a lower Gleason score (5 - 7 for example) I would have gone towards seed implant (but been concerned that the seed implant limited future options). Had my Gleason been 4 or less and the volume still lower I was leaning towards hormone, radiation (or some combo) or even AS. As it turned out the surgery was not really the right choice, but based on the information at hand at that time it made the most sense to me.

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

Gleson9
You surely did well in your choice on the follow-up and treatment. Your adviser may have not been your right choice. Bone scans are not enough when deciding on the initial treatment for prostate cancer. Again I am surprised for the inadequacy of your doctor.
I do not know what was behind his thoughts and past is past.
You should concentrate on the present status, and I hope for your full recovery.
As you say many newbies will read your posts and will take them as reference, and in that, we as survivors, should be careful for any misinterpretation.

Wishing you the best.
VG

Gleason 9
Posts: 7
Joined: Feb 2011

Hi VG,

I would be very interested in what additional testing you feel would have provided a better set of decision points for treatment alternatives. I will be seeing my Urologist soon and would like to discuss any areas we missed.

Just to recap:

The biopsy showed Gleason 9, no seminal ves involvement. PSA was 6.7. Radioactive dye bone scan showed no metastatic progression.

It would be great to hear your suggestions:
1) so I can discuss w my Doc and
2) so anyone else in similar spot can get additional ideas too.

Thanks!

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Kongo
Posts: 1167
Joined: Mar 2010

G9,

I have to admit that when I read your first post in this thread that I was surprised you had undergone surgery with a 5+4 Gleason score and relatively low PSA. I don't know whether or not you were given a tertiary Gleason rating after your initial biopsy but the 5+4 along with a low PSA, based on what I have read, was strongly suggestive that your cancer had already moved beyond the prostate. In such cases surgery does nothing to stop the spread of the cancer and significantly increases the liklihood of debilitating complications when the surgery is combined with probable follow-on treatments. I also think that given a diagnosis of a 5+4 that your ran a very high chance of having positive margins that would be cut across during the surgical process, releasing even more cancerous cells into your bloodstream.

On the other hand, I have recently read some studies that indicate that in some cases surgery for an advanced diagnosis followed by adjuvent therapies can be effective in curbing PCa growth (although post RP biopsies in these cases tend to show that the tumors were well contained within the gland).

I couldn't tell from your post whether you had sought other opinons on treatment courses for your decision to have surgery or you simply followed the advice of your urologist. It seemed to me the time from diagnois to going under the knife was very quick, but I appreciate the urgency required after receiving such a diagnosis. With 20/20 hindsight, it seems to me from the little you have shared, that you could have avoided surgery and gone straight to HT and radiation and still be at the same place you are today without any complications from surgery that you may be experiencing. I guess the only other thing I would have done in your case is try to seek out a more advanced scanning method than the traditional radioactive isotope process used in bone scans and sought a second opinion from an oncologist the specializes in PCa about the prognosis for a successful surgical outcome.

Frankly, given the histology of prostate cancer, I'm not sure your comment about perhaps being cancer free today if you had acted earlier in your first post is accurate. Given the growth rate of PCa in most cases and the relatively low PSA score (indicative of poorly differentiated cancer cell clusters) the cancer had probably alread spread beyond your prostate when you had your first bump up in PSA. I do realize that there are some forms of prostate cancer that are indeed very fast growing and maybe a more rapid intervention would have made a difference. We will never know and your point about not putting these things off is quite on the mark.

I didn't say anything until you invited comments as I think that too frequently those of us who have garnered a little knowledge about PCa are way too quick to make judgements about the treatment decisons of others without knowing the whole story or background. Each treatment decision is highly personal and made for a variety of reasons and "bumper sticker" generalizations before or after the fact do little but increase anxiety, in my opinion. In any event, today it is what it is and we all want to support you as you go forward.

I share your concern about a rising PSA following the treatments you have had to date. It seems that the convential treatment methods (surgery, HT, radiation, chemo) commonly used to address prostate cancer in the USA have not been successful in beating your cancer. I'm wondering what your next steps might be?

Over the weekend I read a book that I would commend to you. It's called "The China Study" by Dr. Colin Campbell. Since the "conventional" treatments don't seem to be having much success in your case, perhaps it's time to cast a wider net on looking at the root causes of what might be fueling your cancer.

Best wishes to you as you continue to battle this disease.

K

inspirejustin
Posts: 3
Joined: Feb 2011

Hi there guys, I just wanted to give a quick update. I saw the urologist today, he suggests "chronic prostitis" another 2 months of antibiotics and continue with flowmax. Will have another psa test done in two months to see if it decreases and hopefully this fixes my symptoms/problems with urinating and this uncomfortable feeling! Let me know your thoughts, thanks!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Justin,

Sounds like a great plan and a likely diagnosis. Hope this course of treatment solves the problems you've been having and you can get back on even keel.

Best to you.

K

mrspjd
Posts: 688
Joined: Apr 2010

Thanks for the update. Does your urologist believe the current course of antibiotics will abate the prostatitis, or does he/she feel it might be a continuing chronic issue requiring on-going courses of antibiotic tx? Seems like you have a good plan to follow for now. Hope the issues are resolved soon.
Be well.

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

Hi Justin

I hope those antibiotics clear the problem for good. Now you know the cause and can follow some leads and idealize what to do next. Here is an article explaining in detail what you can expect from "chronic prostatitis". They say “…your symptoms will generally ease when treated with antibiotics…”.
http://www.patient.co.uk/health/Prostatitis-Chronic.htm

Wishing you the best,
Vgama

hopeful and opt...
Posts: 1291
Joined: Apr 2009

visit?

Gleason 9
Posts: 7
Joined: Feb 2011

Hi K.,

Sorry for the delayed reply & thanks for "chiming in"! Your insights are really helpful and I appreciate all the effort you are taking to share them.

I did get a second opinion re surgery from a very well know urologist in the phoenix area who basically said the surgeon I had in mind was one of the best in the country at DaVinci RP and that I basically had little to lose assuming there were no surgical complications.

I decided to take the shot. Fortunately, the surgery was a complete success, unfortunately the patient "died" anyway. Complete success? By that I mean I have no complications from the surgery, regained full continence, spared the nerve bundles, and recovered OK. The following radiation resulted in stress incontinence and urge incontinence (controlled somewhat with meds).

To jump to the chase ("what your next steps might be?"): I tried the "Bill Henderson Protocol", basically a vegan diet w a handful of supplements ( vitamins, barley pills, immune boosters, etc) but my PSA doubling rate actually increased over the 3 mos of the diet. Oh well, at least I was eating "healthy".

Now I'm trying Firmagon (Degarelix) to see if it will pick up where Chemo (clinical trial w Taxotare) and Lupron w Casodex left off. If that doesn't work then it's off to another clinical trial (if I qualify) of some type. I figure I've got very little to lose and if nothing else at least the body of information regarding PCa and treatments improves.

It's a nasty disease but I frankly don't believe my Doc's prognosis that I'll be gone in 12 mos (more or less).

Here is to everyone’s health and strength in dealing w the challenges and opportunities we face and hold.

G9

mrspjd
Posts: 688
Joined: Apr 2010

G9,
You pose some excellent questions, the answers to which I also would be very interested in reading about.

Vasco, are you out there? The audience is listening--or is it "reading?" ;) Thanks.

tarhoosier
Posts: 181
Joined: Aug 2006

I followed this thread and waited until someone brought up an obvious point. Kongo has now done so. Regardless of psa, the Gleason grade and score is the greatest factor in our disease. All treatments are determined from that point. A biopsy result of G9 (as mine was) would almost certainly indicate high risk for spread. That is the whole point of G score, to identify the risk. And the utility of G score has been proven millions of times over. Psa may be uncertain for diagnosis but expert G score pathology is never uncertain.
I suggest that surgery for G9 cancer is the first step in a series of treatments. Gleason 9 has shown us the way this may progress. Surgeons may occasionally go to surgery with isolated G9 biopsy samples, but even in these cases long term durable remission by surgery alone is uncommon. My point is that for Gleason 9, as for me, the die was cast before biopsy, before diagnosis, before repeat psa.
The better(?) part of my thinking is that it absolves guilt and remorse about the eventual diagnosis. As much as I would like to think that the cerebral level was in control, our futures are determined at the micro-cellular level,

mrspjd
Posts: 688
Joined: Apr 2010

Tarhoosier,
I always enjoy reading your infrequent yet concise and spot-on posts. In fact, I selfishly wish you'd consider posting more often to offer your experience, insight, and knowledge, especially as pertains to high risk & advanced PCa. However, I couldn't help but wonder, if you followed the posts in this thread as you indicated you had, why you waited and didn't jump in sooner to make/share the "obvious point" yourself? And, whether the point was obvious or not, might it have been lost if no one had posted and "opened the door" to discuss it previously? I realize there may sometimes be a fine line between sensitive and insensitive contributions on the discussion board but, assuming they are sincere and can be made with tact and respect, I would hate to think that we might lose valuable PCa "points" if we waited for the "right" opportunity to share insights and experiences, especially if they were relevant to the subject thread.

Gleason 9
Posts: 7
Joined: Feb 2011

Yep, agreed, would like to hear back from Vasco....

Klemon
Posts: 26
Joined: Jun 2010

I totally agree! My husband had three years of rising PSA, two negative biopsies, negative DREs, negavite pelvic MRI and finally in 2010 1 positive core at 3+3=6. They tried to convince us we had all the time in the worldto wait around and watch.
We got a second opinion and saturation biopsy at Mayo and what do ya know, cores at 6 and 7 and 8 throughout the entire prostate..earned him an early surgery date with extended pelvic lymph node dissection.. final gleason score 7 with all negative nodes and confined. Had we waited per the standard urologists, and other doctors, we'd still be watching and waiting. instead, surgery was a breeze, life is great, no lasting side effects and PSA undetactable at 3 and 6 months. Fingers crossed. To cut is to cure my friends. (my husband -who is a surgeon himself- this is his motto)- you only get one bite at the apple before your options become limited.

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Kongo
Posts: 1167
Joined: Mar 2010

I believe that your savvy decision to seek a second opinion of the biopsy was an important step in getting the information you and your husband needed to make an informed decision about appropriate treatment choices and I'm very happy for you both that he has had such a quick and full recovery. I question, however your statement "to cut is to cure" particularly within the context of this thread that highlights a very advanced cancer stage as evidenced by a Gleason score of 9.

While each treatment choice is a personal decision, I believe that there are highly divergent opinions among urologists and oncologists as to whether or not surgery, when there is strong evidence that the cancer has spread beyond the prostate, is an effective course of treatment. In the case of the original poster, cutting does not appear to have produced a cure and considering that almost a third of men undergoing RP eventually see a recurrece of their cancer your assertion that cutting equates to a cure seems a bit overstated, to say the least.

My personal opinion is that each of us with prostate cancer have unique circumstances and suggesting that just because a particular treatment worked for one man is a reason that it will work with the same results on another is presumptuous.

K

mrspjd
Posts: 688
Joined: Apr 2010

In the case of PJD, after his 2nd opinion biopsy report from a respected path lab confirmed PNI (perineural invasion) and showed a higher risk Gleason of 3+4=7 than the G6 from the original local lab, he set about to more accurately stage the PCa before making any tx decision. Four different pre-treatment diagnostic tests later including, but not limited to, an endorectal MRI w/Spectoscopy, the PCa was re-staged downward to high volume T3 locally advanced (outside the capsule to the rt SV). No evidence of spread to lymph nodes or distal mets. We had multiple consults with every PCa tx modality specialist, including top surgeons and radiologists.

While PJD was a candidate for surgery with no pre-existing health issues to compromise that option, he elected not to have RP. In his case, RP (cut) mostly likely would not equate with cure (perhaps "abate" is a better choice of word) and, a tx plan including adjuvant RT would likely have been required following a primary tx choice of RP. Therefore, rather than risk the common side effects of RP, incontinence for one, and potentially compound that with adj RT, he did his research and elected a different tx plan, not RP, that he felt had the best chance for successful outcome. As you may know, that primary tx plan included a multi-modality tx approach of ADT, HDR-B, & IMRT.

All treatments have been completed to date and PJD is doing well with no side effects from the txs. While we are not naive about this insidious disease and the courses it can take after tx, we know that he made the right tx decision for his stage of PCa.

We continue to enjoy and celebrate life each day with an active and healthy lifestyle. Wishing everyone the same.

mrs pjd

Julietinthewoods
Posts: 15
Joined: Dec 2010

I agree with Kongo and mrspjd, and would like to add that surgery is not always the only, or even the best, option in other cases as well. Some men have comorbid medical conditions which preclude surgery or make it more risky. And for men like my husband, who was told by his urologist (a surgeon) and the radiation oncologist both that radiotherapy and surgery were about equal in their potential for cure for HIM, radiation in its several different forms is well worth consideration.

In my husband's case, it was not hard to turn from the prospect of potential surgical complications, high rates of procedural side effects and extended time off of work. Let's face it, none of our current treatment options is guaranteed trouble-free, and none is a guaranteed cure. One thing I have noticed from the time I began my research is the large number of men who end up with BCR after surgery and move into salvage radiation, increasing both the probability of side effects and the expense. Many factors must be considered, and not only is each man's cancer different, so is his individual set of circumstances and life style and emotional tolerance.

I know this is a subject that is hotly debated on all prostate cancer forums, but I wanted to say it for the sake of those newly diagnosed and searching for answers and hope.

Will_10_2010
Posts: 43
Joined: Nov 2010

Well stated. While researching my "paths" I was told that both procedures were "equal" in going for the cure. I choose surgery for personal reasons that were important to me. Thanks for reminding us not to lose site of this.

Klemon
Posts: 26
Joined: Jun 2010

Thanks Kongo~
I agree with your statement about surgery not being for everyone.. my statement should have been more clear in that when all signs are that a person is an appropriate candidate for surgery, that surgery in our opinion is the gold standard, for any type of cancer that is surgical. To achieve a cure or full remission via sucessful surgery, spares people with all types of cancers from treating "chronic disease" and the unpleasant side effects from other forms of treatment if at all possible. Additionally, surgically cured cancer patients can expect higher quality of and extended life, as research shows that many forms of cancer treatements overall, have difficult and otherwise worrisome side effects. Certainly anyone who has evidence that cancer had left the prostate or whatever organ system they are dealing with would not be a surgical candidate, I guess I assumed that was understood.
I work with men from a variety of backgrounds.... many who's lives have been cut short by prostate cancer...in those cases.. a result of watchful waiting ...too long it seems...and others who were afraid of all the negative stories they heard about the consequences (incontinence, ED) from RP,.

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Just another thought on not waiting. I was 47 when I was diagnosed,in November of 2009. PSA 2.9, Gleason 6, 1 core positive. My PSA at 45 was 1.7 and at 48 was 2.2 so a trend upwards. Mentally I knew I could not sit and wait every few months for additional testing. I had DaVinci done in January of 2010. The full biopsy showed that while contained, over 35% of the gland was cancerous, so glad I did not wait another 6 months/year. Again every case is different, but am happy with the choice I made.

Joe in NJ

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