Slow Growth? NOT Always.... Don't wait too long, here is why
Comments
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a few other thoughtsKongo said:Justin
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
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 pjd0 -
G9 & VascoGleason 9 said:Interesting, I'd like to hear more....
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!
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.0 -
Was a digital rectal exam done at thisinspirejustin said:evaluation
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!
visit?0 -
Waiting?mrspjd said:G9 & Vasco
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.
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,0 -
the obvious pointtarhoosier said:Waiting?
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,
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.0 -
I totally agree! My husband
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.0 -
KlemonKlemon said:I totally agree! My husband
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.
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.
K0 -
Well Said, KongoKongo said:Klemon
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
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 pjd0 -
another pointmrspjd said:Well Said, Kongo
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
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.0 -
Hi K.,Kongo said:Chiming in
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
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.
G90 -
Yes, some additional thoughts from Vasco would be of interest...mrspjd said:G9 & Vasco
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.
Yep, agreed, would like to hear back from Vasco....0 -
JulietinthewoodsJulietinthewoods said:another point
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.
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.0 -
Thanks Kongo~Kongo said:Klemon
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
I agree with
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,.0 -
Not WaitingKlemon said:Thanks Kongo~
I agree with
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,.
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 NJ0
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