44 and recently diagnosed - help!!!

Take time to study your options
You are in no immediate danger. Gleason score of 6 is low enough that you don't need to jump into any treatment. I am no expert, of course. But it seems to me that you may be a good candidate for "watchful waiting."

Based on my experiences and what I read from others, it would be wise to hold off for awhile until you can be sure about what is happening and carefully consider your options.

You'll be getting reports from others who have more knowledge about what is best than I do.

Relax if you can.

Good luck.

Jerry

Hey ALB. Welcome and sorry
Hey ALB. Welcome and sorry you joined the club. I was diagnosed in late Septmeber as well and I am 49. I had an RP in November and healing well. No real urinary issues as a few drops sometimes at end of the day but much less every day. I am physically active then and it is all stress related. Never wore a pad after 2nd week and as far as ED well I woke up with an erection today. I had them start 2 weeks after surgery but like my kids, it has a mind of it's own. They come and go as they please. However, I am 7 weeks post opt today and have been told that is excellent. You are young and most likely in good shape so side effects sould be even less. If you have an ED issue now it will not get better. I opted for surgery because of my age. My gleason was 7 (3+4) and one of 15 cores posative with a 90% volume. However, volume is calculated differnetly. Age is a factor and many times after surgery when your prostate is biopsied your cancer is upgraded. When biopsied a secod tumor was found which was a 4+3. However, I had no posative margins, no lymph or SV involvement and was classified organ confined. That helps a lot because I now know what I had and it was growing inward which does give some some peace of mind. The first thing you need to do is get a second opinion on your slides. I also had an 2 oncologists and 3 radiologists and 4 uroligists all recomend surgery. I knew some of them for as long as 30 years. They all indicated at my age surgery was best outcome. Do not loose site the name of the game here, it is cure not treat. I went to Johns Hopkins where they review your slides and a team of doctors (uroligists, oncologist, pathaologist and radiologist) review your case and present thier opinion for treatment. Go if you can it is great. Be careful if someone did so many or too few surgeries either on can be troublesome, from lack of experience to an assembline doctor. I did robotic, took no pain pills. I was uncomfortable for 2 or 3 days but managable. If you do active survailance you should do a saturation biopsy to see if there is more cancer or a higher grade. My thought is on AS what am I waiting to see?? If you have any questions please ask but you will be fine and just take it a day at a time. I believe something good can come from anything bad. There are lot of good and smart people on this site you will make some good friends who care. For me I see the sun brighter, smell the air cleaner and love and appreciate my family more.

Classic
alb,

You may have heard by now that a prostate cancer diagnosis at the tender age of 44 is extremely rare. I wonder how they came to do a biopsy on you in the first place. Is there a history of prostate cancer in your family? Did the doctor feel something abnormal during a DRE? I'm not sure why you even knew what your PSA was since they normally do not screen for PSA until you're 50 unless there is a history of prostate cancer in your family. Did you have any physical symptoms such as blood in the urine or difficulty urinating or notice a weaker stream or pain or any other symptom at all?

Your case seems akin to what might well be the poster child case for the ongoing PSA testing controversy in the United States. Many health care professionals propose doing away with the PSA test for most healthy men (particularly healthy men at your age) because many doctors conduct biopsies at PSA levels above 4.0 (a level that was rather arbitrarily selected in the early 90s) that reveal indolent cancers that will never pose a health threat and men end up getting treating for something that should never have been treated in the first place and suffer the adverse side effects which are much worse than the original condition for the rest of their life. So, I am very interested in the events that led up to your diagnosis.

In 2010 at age 59 with a PSA of 4.2, a normal DRE, and no history of prostate cancer in my family, I underwent a biopsy that showed 1 of 12 cores positive for adenocarcinoma (the most common form of prostate cancer) that showed 15% involvement and was graded Gleason 3+3=6. Like you, I saw several specialists and similar to you, many of them recommended surgery for a "cure." I also did quite a bit of research at the time (and still do) and knew I did not want to risk the adverse side effects of surgery, robotic, open, or laproscopic under any conditions. I eventually ended up having Cyberknife treatment in June 2010 and have had absolutely no side effects at all with respect to continence or ED and my PSAs (knocking on wood here) have dropped steadily to <0.5.

The real question, however, is did I need any treatment at all? Knowing what I know now (and hindsight is usually 20/20) I think I would have deferred any type of treatment until there were more positive signs that my prostate cancer was progressing.

Don't get me wrong, I have no regrets as I made a very informed decision with the best information I had available to me at the time after investigating surgery, proton therapy, and other various types of radiation treatment and meeting with six specialists. It's just that with the continuing reading and education that I've done since my diagnosis I now have come to understand that I exhibited a very, very low risk prostate cancer that was not posing any immediate threat to my health or longevity. Although I didn't have any symptoms of BPH, my prostate was slightly larger than normal and I now know that for most men in our age group that PSA levels between 4 and 10 are caused by BPH (Benign Prostate Hyperplasia) and not prostate cancer.

I also now better appreciate that prostate cancer is one of those things than men will get as they grow older. In the United States, about 40% of men in their 40s, 50% of men in their 50s, 60% of men in their 60s, 70% of men in their 70s (get the picture here?) have some form of undiagnosed prostate cancer. These statistics come from studies where men who died of other means were autopsied and their prostates examined for prostate cancer. In most cases, this cancer never posed a threat to their health.

At the time I made my decision for treatment I was under a lot of pressure from family and friends ("You have CANCER, you have to DO SOMETHING!). I persuaded myself that I was eventually going to have to deal with this cancer (I'm not sure that's correct anymore but it was in my head at the time and reinforced by every specialist I visited) and that I wanted a treatment that would address the cancer with minimal side effects. My research indicated that CyberKnife best fit my criteria and I still believe that for low risk prostate cancer it offers the best possible treatment with minimal side effects. Increasing numbers of studies are starting to bear this out but there are many evolving technogies in the treatment of prostate cancer and something better could show up at any time. The pace of advancement is quite spectacular, actually.

So, back to your case. Before jumping on a surgeon's table or crawling into a microwave I would strongly encourage you to continue your education about prostate cancer. Besides the books Vasco recommended, I would add "The Big Scare: The Business of Prostate Cancer" by Dr. Anthony Houran.

I would also work with your medical team to explore other non cancer potential causes for your PSA such as BPH (ask them specifically what is the size of your prostate), take a course of Cipro or other antibiotic for 6 weeks or so to rule out a potential undiagnosed UTI which could be causing your PSA to increase. (PSAs also are higher for several weeks to months after biopsies depending on how long it takes the gland to completely heal). Be aware that sex before a PSA blood draw can spike your PSA levels for up to 48 hours, certain forms of exercise like bicycle riding can increase your PSA level, a hard stool can increase your PSA level, and certain OTC medications (like Advil) have been shown to increase PSA levels. In short, rule out BPH, a UTI, or whoopi the night before visiting the doctor as causes for your PSA reading.

Another simple thing that you or your medical team can do is to calculate your PSA density. Typically, low PSA density numbers (divide the PSA reading by the prostate volume) are strongly indicative of indolent prostate cancer.

There are several encouraging recent studies about active surveillance which you can Google and read on the internet. I encourage you do to this as you consider alternatives.

When considering any potential treatment, make sure you know ALL the potential adverse side effects. If you peruse several pages of this excellent forum you will find many threads from men who are suffering incontinence or ED following surgery and even certain types of radiation. Hormone therapy has potential side effects as well.

I would also encourage you to explore changes to your diet, particularly with respect to the intake of red meat and dairy and their effect on prostate cancer. In particular I recommend The China Study.

Good luck to you and I hope you keep us informed of your progress.

Kongo said:

Classic
alb,

You may have heard by now that a prostate cancer diagnosis at the tender age of 44 is extremely rare. I wonder how they came to do a biopsy on you in the first place. Is there a history of prostate cancer in your family? Did the doctor feel something abnormal during a DRE? I'm not sure why you even knew what your PSA was since they normally do not screen for PSA until you're 50 unless there is a history of prostate cancer in your family. Did you have any physical symptoms such as blood in the urine or difficulty urinating or notice a weaker stream or pain or any other symptom at all?

Your case seems akin to what might well be the poster child case for the ongoing PSA testing controversy in the United States. Many health care professionals propose doing away with the PSA test for most healthy men (particularly healthy men at your age) because many doctors conduct biopsies at PSA levels above 4.0 (a level that was rather arbitrarily selected in the early 90s) that reveal indolent cancers that will never pose a health threat and men end up getting treating for something that should never have been treated in the first place and suffer the adverse side effects which are much worse than the original condition for the rest of their life. So, I am very interested in the events that led up to your diagnosis.

In 2010 at age 59 with a PSA of 4.2, a normal DRE, and no history of prostate cancer in my family, I underwent a biopsy that showed 1 of 12 cores positive for adenocarcinoma (the most common form of prostate cancer) that showed 15% involvement and was graded Gleason 3+3=6. Like you, I saw several specialists and similar to you, many of them recommended surgery for a "cure." I also did quite a bit of research at the time (and still do) and knew I did not want to risk the adverse side effects of surgery, robotic, open, or laproscopic under any conditions. I eventually ended up having Cyberknife treatment in June 2010 and have had absolutely no side effects at all with respect to continence or ED and my PSAs (knocking on wood here) have dropped steadily to <0.5.

The real question, however, is did I need any treatment at all? Knowing what I know now (and hindsight is usually 20/20) I think I would have deferred any type of treatment until there were more positive signs that my prostate cancer was progressing.

Don't get me wrong, I have no regrets as I made a very informed decision with the best information I had available to me at the time after investigating surgery, proton therapy, and other various types of radiation treatment and meeting with six specialists. It's just that with the continuing reading and education that I've done since my diagnosis I now have come to understand that I exhibited a very, very low risk prostate cancer that was not posing any immediate threat to my health or longevity. Although I didn't have any symptoms of BPH, my prostate was slightly larger than normal and I now know that for most men in our age group that PSA levels between 4 and 10 are caused by BPH (Benign Prostate Hyperplasia) and not prostate cancer.

I also now better appreciate that prostate cancer is one of those things than men will get as they grow older. In the United States, about 40% of men in their 40s, 50% of men in their 50s, 60% of men in their 60s, 70% of men in their 70s (get the picture here?) have some form of undiagnosed prostate cancer. These statistics come from studies where men who died of other means were autopsied and their prostates examined for prostate cancer. In most cases, this cancer never posed a threat to their health.

At the time I made my decision for treatment I was under a lot of pressure from family and friends ("You have CANCER, you have to DO SOMETHING!). I persuaded myself that I was eventually going to have to deal with this cancer (I'm not sure that's correct anymore but it was in my head at the time and reinforced by every specialist I visited) and that I wanted a treatment that would address the cancer with minimal side effects. My research indicated that CyberKnife best fit my criteria and I still believe that for low risk prostate cancer it offers the best possible treatment with minimal side effects. Increasing numbers of studies are starting to bear this out but there are many evolving technogies in the treatment of prostate cancer and something better could show up at any time. The pace of advancement is quite spectacular, actually.

So, back to your case. Before jumping on a surgeon's table or crawling into a microwave I would strongly encourage you to continue your education about prostate cancer. Besides the books Vasco recommended, I would add "The Big Scare: The Business of Prostate Cancer" by Dr. Anthony Houran.

I would also work with your medical team to explore other non cancer potential causes for your PSA such as BPH (ask them specifically what is the size of your prostate), take a course of Cipro or other antibiotic for 6 weeks or so to rule out a potential undiagnosed UTI which could be causing your PSA to increase. (PSAs also are higher for several weeks to months after biopsies depending on how long it takes the gland to completely heal). Be aware that sex before a PSA blood draw can spike your PSA levels for up to 48 hours, certain forms of exercise like bicycle riding can increase your PSA level, a hard stool can increase your PSA level, and certain OTC medications (like Advil) have been shown to increase PSA levels. In short, rule out BPH, a UTI, or whoopi the night before visiting the doctor as causes for your PSA reading.

Another simple thing that you or your medical team can do is to calculate your PSA density. Typically, low PSA density numbers (divide the PSA reading by the prostate volume) are strongly indicative of indolent prostate cancer.

There are several encouraging recent studies about active surveillance which you can Google and read on the internet. I encourage you do to this as you consider alternatives.

When considering any potential treatment, make sure you know ALL the potential adverse side effects. If you peruse several pages of this excellent forum you will find many threads from men who are suffering incontinence or ED following surgery and even certain types of radiation. Hormone therapy has potential side effects as well.

I would also encourage you to explore changes to your diet, particularly with respect to the intake of red meat and dairy and their effect on prostate cancer. In particular I recommend The China Study.

Good luck to you and I hope you keep us informed of your progress.</p>

PSA rise from 3 to 6.6
Sorry to hear about your diagnosis at a relatively young age. You have received some very good advice from other members on this Board 'free of charge'. Your age and a sudden PSA rise from 3 to 6.6 within a 4 month period is probably what set off your consultants to recommend surgery. From what I understand your PSA was 3 in September when you had the biopsy and the repeat PSA was 6.6 ( Dec-Jan)over a 3-4 month period. I wonder how much of the rise is due to residual post-biopsy inflammation and/or occult prostatitis s/p biopsy. So what I would suggest is that you could ask your urologist prescribe you some Cipro for 10-14 days and then do a PSA in 4-6 wks. Even though doctors hate fluoroquinolone abuse, I think this would be a legitimate use. If the repeat PSA is lower, it would either mean the inflammation subsided on it's own with time, or there was some occult prostatitis that resolved on antibiotics or some combination of the two. Based on your new PSA you could reevaluate your case as to whether to seek prompt treatment or consider active surveillance.

alb1208 said:

thank you
Some of this post may be a duplicate as I think the original did not go through and I’m rewriting most of this from memory. Thank you all for responding. I am not exactly sure why my PSA was tested in the first place, it might have been since I had colon cancer in the family. There is absolutely no prostate cancer in my family. My regular doctor once said he thought it felt a little enlarged but every other doc (urologist, oncologist) say my prostate feels just fine. My first was 1.9 back in Sept 09. No concerns but then it was 2.9 Dec 10 and 3.0 Mar 11. My urologist suggested a biopsy and I didn't even know what that was at the time. I said no so he told me to go see Dr. Mark Soloway of U of Miami. Soloway told me I didn’t have to rush to do anything. In June I had another PSA test and it came back 2.9. At that point Soloway concluded that my relatively high score wasn’t a fluke and he agreed that biopsy was in order. BTW, I also took another test, maybe called a PC3 or PT3. It came back negative but then I find out it's not reliable. Waste of time.
Got the biopsy a few months later thinking this was just a fluke and that's when it was confirmed I had cancer. I've had 0 symptoms but have had a history of ED. I think it was more of mental thing though due to stress, unhappy marriage and being on some anti-depressants. I also had low testosterone (less than 300) so was put on Testim. Was on it for about 2 years. That helped with ED a lot. I'm not on it anymore. No doctor has brought up other reasons for PSA jumping. It is possible I had sex a day or two before last PSA test. How would I know if I have any of the other conditions you mentioned if I have no symptoms?
I just got a call today from my original urologist to do something soon. He told me whatever I decided, I should decide soon regardless of who I see or what I do. It was more of a supportive call. I told him I thought Cyberknife sounded good and I got a negative response. He still thinks surgery is the way to go. Even with the 6.6 PSA, Dr. Soloway still thinks active surveillance is fine until I get another biopsy. I'm seeing a lot of pro Cyberknife here so will now look into this as an option. I can read 5 books on Prostate cancer but is it going to help me or just give me more information to make my head spin?
I did have my slides re-reviewed by Bostwick Labs and they came to same conclusion as first one. The MRI showed cancer so it’s there. I will get my PSA retested as suggested. Still don’t have a clue what I should do if it still says 6.6. I’m thinking another biopsy and if it is getting worse, I have no choice but to make the decision.

There is something going on
There is something going on with that kind of jump. Your PSA is up a 100% in a year. I would do another biopsy and make sure it is what is called a saturation biopsy. That means they take about 36 samples. It may reveal other locations. Was your biopsy PNI posative? I know many here post about AS and CK. However, you are young and being on testosterone could easily fuel your cancer. If you choose one of those treatments you need to be pretty sure of what you have. If you had ED before surgery or radiation it will not get better and in fact probably get worse. That is a fact. However, this is your life your dealing with and a cure is what should be your primary objective. Have you been off testosterone for a while?

Kongo said:

Head Spinning
Alb,

Knowledge is power when you are dealing with prostate cancer. For men with barely detectable prostate cancer such as yourself, treatments are a huge business in the United States because of our innate fear of the CANCER word. All cancers are not the same and frankly, if we had a choice about which cancer we should get, I think most men who understand the dynamics of this disease would choose prostate cancer. It is extremely slow growing and histological studies show that the "lifespan" of prostate cancer is typically almost 60 years before it causes death in untreated men. Of course there are some particularly virulent strains of this disease that act faster but you do no seem to be exhibiting any of those symptoms.

Without education newly diagnosed men are particularly vulnerable to certain types of physicians who push unnecessary treatment on anxiety filled patients. Frankly, the doctor who called you back urging you to quickly make a decision and implying the surgery is really the only way for you to go sounds like a business development strategy to me. Doctors make money on biopsies (my 12-core biopsy bill was over $5,000) and the typical surgeon gets about $35,000 for removing the prostate. Radiation treatments typically range from about $20,000 (in the case of CyberKnife) to over $100,000 in the case of proton therapy. Many radiologists own the radiology centers where they recommend you have treatment.

For a man in his early 40s with no family history of prostate cancer and a relatively low PSA score (6.6 is NOT a particularly high score) it seems unconscionable to me to be rushed into a biopsy and other significant treatment options without taking great pains to rule out other causes of the rising PSA.

Many times a urinary tract infection (UTI) can have no symptoms at all except that it can cause PSA to increase because of the inflammation it causes in the prostate gland. Men in their early 40s start to see their prostate enlarge (a natural result of growing older) through the growth of benign fibers that push into the center of the prostate gland. This enlargement has the effect of squeezing the prostate gland cells which cause PSA to spill into the bloodstream.

From what you have described, none of the doctors you have seen have tested for a UTI which is one of the most common causes of an elevated PSA in younger men. Another thing that should have been explained to you is that testosterone replacement therapy can cause your prostate to enlarge. As mentioned in earlier, enlarged prostates throw off more PSA than normal sized glands.

I don't have any suggestions as to what caused a low testosterone level in your case. Low T-levels are associated with high blood pressure, depression, ED, diabetes, and other conditions that affect your quality of life. I think it is unclear as to whether low T causes these problems or that low T is a result of one or more of these conditions. My suspicion is that in your case this is not related directly to your PSA level or trace cancer detection other than the fact that testosterone therapy can cause the prostate to enlarge which can in turn cause elevated PSA readings.

The choice in this matter is entirely yours and your alone to make. It is unfortunate that you do not have a spouse to help you sort through this diagnosis and provide emotional support. Perhaps there is another family member who can help you. Whatever you decide to do, you will make a better, more informed decision if you take the time to educate yourself. The books that have been recommended to you are easy reads and designed for laymen, not doctors. They can help you understand what is going on inside your prostate and help put your diagnosis in perspective. Despite the pressure you may be receiving from doctors who are keen to put you under their scalpel, I suggest that you take the time to further educate yourself before seriously considering a major treatment decision. And please have your doctors check for a UTI that might be causing this PSA rise.

K

the pause that refreshes
Hello alb:

For some organized feedback on various treatment options, you may find www.yananow.org helpful. I did. It was the only site I found to group various survivors, their treatment options and feedback on those options. Not everything is here, but more than any other site I found.

The advice from others here in this site to slow down and do your homework is the best advice you will get. While your PSA bounce could be concerning, a Gleason of 6 with one positive core with 2% involvement is great compared to many of us. I suggest another PSA test soon to confirm the bounce. Avoid sex, hard bowel movements, bike riding and anything else that could artificially raise your PSA level, test once again and proceed with more confidence.

If surgery is your choice, I believe you are on the right track with Dr. Patel. At 55 years old, I avoided surgery due to my fear of incontenience. The odds of this side effect are extremely low with all forms of radiotherapy. In any event, I visited Patel and was impressed. In addition to patient names he gave me, I was also able to locate some patinet names and contact numbers he did not give me. Incontenience, of some sort, was an issue with too many of them for my tastes. It remains a real issue with surgery.

It sounds like you have a very good head on your shoulders and will make the decision that is right for you. Absoluely do your research on CyberKnife, Proton Beam Therapy, IMRT and Brachytherapy. These are excellent proven options also. My choice was to go with the option with the longest and best track record. After all, with God's grace, I have a lot of years left.

By the way, no doctor could offer any proof whatsoever that radiotherapy at a youger age results in any meaningful percentage of secondary cancers later. My conclusion was that it may, but the benefits of radiotherapy combined with a very low chance of secondary cancers caused by treatment, combined with the obvious lower rate of negative side effects out weighed any potential downside.

In the end, after visiting quite a few top doctors and facilities, I picked Dr. John Sylvester in Sarasota for IMRT followed by seeds. When reviewing radiotherapy options, you could easily combine a visit to Datoli and the Lakewood Ranch Oncology Center as part of homework.

Take some time, do your homework, and best wishes to you. You will be fine.

robert1

djs123 said:

your decision
I am praying for you and wish you well. Sorry you have to go through this, but as difficult as it may seem try to stay positive and optimistic, you're attitude will carry you a long way.
God Bless

Congratulations !!
At a relatively young age of 44 with life expectancy > 35-40 yrs, I think you made the right decision to proceed with treatment. We wish you a great success in your prostate journey .I do hope you would visit the site and give us your feed back from time to time . You will always be in our prayers.

alb1208 said:

made decision
I just can't watchful wait anymore. It's been killing me. I just chose radiation with Cyberknife but not the typical 5 dose protocal. This will be over 7.5 weeks. I will likely not check back here as don't need to hear anyone tell me to keep waiting or do surgery. I have buyer's remorese already but I would with any option. Just pray for me and wish me luck. See you all on other side.
alb (Adam)

CK Protocol over 7.5 weeks?
Adam:

If you happen to check back in, please give us the details of the 7.5 week treatment protocol w/CK.

Never heard of such a protocol before and would like to know where you're getting treated, how many treatments you are going to receive over the 7.5 weeks, the frequency of the treatments and total radiation to be delivered w/this procedure.

In the meantime, I wish you all the best and hope that you'll check in again to tell us how it all turns out.

Good luck!!