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

Thanks for sharing
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

VascodaGama said:

PSA is a “flag”, the Biopsy is the real confirmation
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

PSA- Biopsy
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 said:

"take time" = "take action" & educate yourself about PCa
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

pa elevating
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

inspirejustin said:

pa elevating
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

inspirejustin
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 said:

Justin; You are doing well in being “watchful”
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</p>

more info
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...

Kongo 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

Hey Kongo!
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

Gleason 9 said:

Great collection of thoughts, ideas and people
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.

Your adviser may have not been your right choice
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 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!

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

inspirejustin 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!

Good Plan
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 said:

Justin
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.

Hi Justin
I hope those
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