Prostate Cancer Survivors

 

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recent diagnosis

About a month ago I had a routine physical and got flagged for a high (5.6) PSA. The initial DRE (Digital Rectal Examination) was normal. Based on my age and clean DRE, my regular doctor said it was probably an infection, but referred my to a urologist based on the PSA. The urologist was all business and after he did a DRE, he said that he felt a little something "on the edge", and that together with the PSA he scheduled a biopsy. 12 cores and five days later, he called me on March 1 and said that he was sorry to tell me that one of the 12 cores had cancer, and that three others had abnormal formations. He said Gleason 6. Today I had a CAT scan and bone scan, and will find out the results in four days when I go in for a consultation.

I told my parents, but was taken aback when my father strongly recommended I do nothing. I was telling him my story when he interrupted and said something to the effect of "don't let them talk you into a needle biopsy and procedures, their just after $$$". Then I told him I did in fact have cancer, and he was still dismissive of any treatment. Hell, I'm 49 and although I would mourn a substantial decrease in potency, I don't want to die before 75 from this cancer. Regardless, Dad did convince me to set up a second opinion (Cleveland Clinic) and I know not to rush into anything. (Of course I did get laid off two weeks ago and only have six months of COBRA - when it rains it pours.) Emotionally, I'd still like to meet a significant other - I'm divorced but would like to attract a women....Also and not the least, I am dreading telling my 13 year old son who lives in another State. We've been living apart for only 2 years, and it breaks my heart to think of the pain and worry this would/will cause him.

One week later - bone and cat scan are clean, and I've seen several recent articles about being rushed into surgery. The last few hours I find myself leaning against surgery and just getting another psa test in three months......Any thoughts ?

Re: recent diagnosis

My advice would be to go active surveillance. You barely have prostate cancer as it is. If you are lucky you may not need any treatment for 5 - 10 years by which time better treatments will be available. Active surveillance means you've got to get a biopsy at least once a year and your PSA checked every three months to begin with at least. Your cancer may stay in slow growth mode, it might even disappear or it may suddenly turn aggressive. You are the one to make sure everthing gets done when it should. My GP and Uroligist thought the other was checking my PSA and it got missed for 18 months (I barely new what PSA was at the time), when my GP realised that the PSA wasn't being monitored his jaw dropped to the floor and I knew I was in trouble.

Re: recent diagnosis

Thanks for the reply Frank. As a first step, I'll go in for another (only my second) PSA in two months. I've read about velocity and variability with the test. I am still recoverying from the biopsy and wonder if the biopsy itself can aggrevate (awaken?) the cancer. Did your situation go from active surveillence to aggressive?

-Stephen

Re: recent diagnosis

I am quite sure a biopsy doesn't awaken cancer and the medical community will tell you that it won't cause the cancer to leak out but I have some lingering doubts about that one still.

As far as my case, I was in the no surveillence plan because my GP thought the urologist was doing the active surveillence and checking my PSA and I guess he thought my GP was checking it. That is how I ended by with PSA of 12.7 and a Gleason of 4 & 3. My GP told me to change urologists after that but it was too late so after getting my prostate out I am now on hormones and radiation (which I've found to have surprisingly few side effects so far).

It seems to me that a PSA more than about 8 OR a Gleason score of 3 & 4 (you don't want it to get to 4 & 3) means you've got to get something done pretty quickly if you want to be cured of prostate cancer.

Free PSA is mentioned by someone further down but I don't think that tells you anything since you know you already have cancer and it is the type that is kicking your PSA number up which means that the standard PSA test should tell you exactly how active the cancer is.

Re: recent diagnosis

Frank,

There are some aspects in your reply that I think I should comment on:

1. You say I am quite sure a biopsy doesn't awaken cancer and the medical community will tell you that it won't cause the cancer to leak out but I have some lingering doubts about that one still.

There is no evidence that biopsy procedures cause prostate cancer to spread. That does not mean that it doesn’t, but I have taken the view that, if it did cause the disease to spread then with the number of biopsy procedures topping one million in the US each year, there’d be a good deal more PCa about, instead of which the incidence (number of men diagnosed per 100,000 of male population) is dropping and has been for some years.

2. You say It seems to me that a PSA more than about 8 OR a Gleason score of 3 & 4 (you don't want it to get to 4 & 3) means you've got to get something done pretty quickly if you want to be cured of prostate cancer.

There is no direct link between PSA numbers and aggressiveness. Some of the most aggressive tumours generate very little PSA: some very high PSA numbers – over 100 ng/ml are not associated with PCa – see PSA 101

There is a good deal of doubt about the concept of Gleason Grades ‘progressing’ over a relatively short period of time, if at all. The results from the Active Surveillance studies that have been conducted for the last ten years or so conclude that where a second biopsy shows a higher Gleason Score (which it does in a minority of cases) it is likely that this was because of a misreading of the first biopsy. That is why men are urged to get a second opinion from a recognised expert - see RECOGNISED EXPERT PATHOLOGISTS

A delay of several months with this kind of diagnosis (if the experts confirm the Gleason Score) is unlikely to worsen the position but will give time to get enough data together to make the best decision as to what path to take.


3. You say Free PSA is mentioned by someone further down but I don't think that tells you anything since you know you already have cancer and it is the type that is kicking your PSA number up which means that the standard PSA test should tell you exactly how active the cancer is.

It is important to collect a series of PSA numbers to see if they are increasing consistently and ever more rapidly. Slow changing numbers, or numbers that go up and down are more likely to be associated with a disease or infection, most commonly BPH (Benign Prostate Hyperplasia) or prostatitis or bladder infection.

Anyone interested in Active Surveillance should read ACTIVE SURVEILLANCE FOR FAVORABLE RISK PROSTATE CANCER: What Are The Results, and How Safe Is It?

Re: recent diagnosis

Wow, the timely responses on this website are great. Terry, I'll hook into pay pal. I see that you are the hub to the wheel and thank you for your efforts.

I will look into the risks of active surveillance. I see now that I should not have had blood drawn for a PSA two hours after my DRE.....and should have been offered a second PSA test before the biopsy. My urologies (soon to be ex Urologist) forcefully prescribed the biopsy, and is adament about surgery or seeds and radiation. The one strong case for surgery I see is that I am 49. T1a (now T1c due to needle biopsy) One core 25%, one PIN. Reading Strange Place now.....Again, thanks Terry and everyone else for the support.

Re: recent diagnosis

Stephen,

You say:

The one strong case for surgery I see is that I am 49.

And I say Why? Why does your age make a strong case for surgery - or for any other treatment?

I'd be interested to know why you say that. My guess is because everybody says that - oftentimes without thinking the issue through. Here's my take:

The chances of dying fo something other than prostate cancer is always higher - and substantially higher - than the chance of dying from the disease at any age, even for men diagnosed with prostate cancer. Only 10% of the men who die of prostate cancer are younger than 65.

So, as far as I am concerned what young men should focus on is the characteristics of the disease that kills younger men and match up their diagnosis against that matrix. If you do that you will find that none of the aspects of your diagnosis indicate any likelihood of your being in this unfortunate group.

Oh! And half of the men who die from prostate cancer die after the age of 80 - to try and predict thirty years ahead is very difficult, except as far as side effects are concerned. Every treatment has side effects.

Re: recent diagnosis

Terry,
This is a case of someone who has cancer and is 49. The statistics for the general population really don't apply. (read Let's Make a Deal statistics problem) The fact that he is 49 is very relevant to the decision making process as the longer you have prostate cancer the more likely you are to die of it.

We both agree that active surveillance is the way to go and he may never have to do anything about his prostate cancer. We just disagree on how much risk one should accept that you may become one of the "uncurables" like us. As his PSA goes up his risk goes up given a Gleason 3 & 3.

If I was in Stephan's position I would be leaning towards a more cautious approach (early intervention) and I think you would lean towards the side of waiting longer to make sure that there really was a problem.

The advantage of getting your prostate out earlier is that you have at least 70% chance of being cured and never have to think about prostate cancer again. The disadvantage is the effect that it may have on your sex life.

The advantage of waiting longer is that nothing changes in your sex life unless you get advanced cancer, in which case you don't care anyways (with hormone treatment).

Re: recent diagnosis

Frank,

You say:

The fact that he is 49 is very relevant to the decision making process as the longer you have prostate cancer the more likely you are to die of it.


I think this is the focus of our differing views on risk and age. I would be very interested if you could lead me to the evidence that supports your statement.

As to the question of statistics, I have noticed over the years that when statistics are quoted that support a opposed point of view, they are dismissed as generalisations, where statistics quoted to support a position are accepted as validation.
of that position.

I have never been of the view that any kind of statistic can be applied at an individual level, but it can add to the overall view of a position and lead the person using this approach to ask the question " What are the relevant factors that are included in these statistics and do they apply to me?"

Re: recent diagnosis

I meant to add - but was dashing off for my six weekly meeting with my doctor (that is one of the drawbacks of socialised medicine - that your doctor wants to see you regularly to ensure all is going well. He and I have a slight disagreement right now as he wants me to have another PSA test and I want to wait. Darn this socuialised medicine!!)

But to get back on track....I meant to add what i thikn is a salient point. No matter what your age is, at least on the data I have access to there is a greater risk of your dying from something other than PCa. Given this, then, as I understand statistical odds, it doesnt matter how long you estimate you will live after a diagnosis, you'll still be ahead of the game.

After all, if you buy a lottery ticket every year for 20 years, you don't improve the odds of winning. The odds stay the same every time - unless of course everyone else realises how long the odds are and stops buying tickets.

Re: recent diagnosis

Terry,

As you know, we Americans are terrified of universal health care. Our media is replete with anecdotal stories about Canadians rushing our borders to access top dollar, private care. This is an important week for our health care system; maybe we'll take our first steps towards universal coverage with greater emphasis on preventative care. I hear the international ridicule.....Unfortunately we're pretty xenophobic and slow to learn from others that do it better.

I spoke to a trusted friend today and he observed that my own psychological comfort will impact my treatment. Many people just want to "get rid of it and cut it out". Thanks in large part to this YANA site, I recognize that I was rushed into a process, and need to slow down. Best regards -Stephen

Re: recent diagnosis

Stephen:
The advice your father is giving you is somewhat good. With only one in 12 cores showing cancer, it is not something to ignore, but it is also something that needs to be monitored, and not acted upon immediately (my opinion only). One suggestion is to get a fPSA, which is another tool to indicate how much of the PSA in your score is the bad stuff; Terry has a good explanation here: http://www.yananow.net/PSA101.htm

I assume that your PSA test was your first one? Although quite high for your age, PSA's do fluctuate and the medical community, generally, looks at "velocity" (PSA change over time) before they push the panic button.

Spend some time here on YANA and find the do's and don't's before your next PSA test.

Good luck, and congratulations on getting a PSA test, most guys won't get it done at your age!

Mike C (Canada)

Re: recent diagnosis

Mike ... good advice, but, the "panic button" was pushed when he heard the word "cancer" ... remember?

That one word changes us physically and mentally forever. Now, any ache and pain, and our beloved brain thinks it's somehow cancer related.

Stephen... you got time ... review this site in great detail ... read every story, every one ... and decide on your future course of action ... but, again, you DO have time.

Good luck sir.

Re: recent diagnosis

Stephen,
I am a relatively young man like you going through the same things...I am 45..
I won't get into the whole story here but I have been Monitoring my PSA levels for a few years due to a strong Family history,,Over the last year I saw a 1 point increase and I saw another one point increase over the last 3 months (My last check I was at 4.5)..Cipro Had no effect..DRE was negative but there was some shadowing on my Ultra Sound...I had a Biopsy last Friday and expect the results today or tommorrow.
I was divorced and Married a great woman that is 12 years younger than me..So I have some concerns over Erectile Disfunction..Reading the reports here has somewhat put me at ease because I see a pretty high rate of success on younger men returning to a somewhat normal sex life following surgery.(Following sometimes a long rehab period)
Just wanted you to know you aren't alone brother and from what I have read there are quite a few of us 50 and under "Prostate focused" men out there...
Good luck,
Brian

Re: recent diagnosis

Good luck with the Biopsy. I found the blood afterwards to be the most disconcerting. I do think that we young'uns have an extra wrinkle. I would prefer to avoid surgery. I have a second opinion scheduled for next Wednesday.

Down here in Florida health in general, and prostate cancer in particular are booming business'. Just yesterday I was driving by billboards and listening to radio adds touting one procedure over another....

Like a few other things in life, we are at a juncture and need to choose a path. Once taken, there's no going back. Keep the faith......-stephen

Re: recent diagnosis

Stephen,

I was diagnosised on Feb. 16. My PSA is 2.2 and my Gleason is 6. I realized that this type of cancer in like being run over by a glasier and I had time to investigate. After completing my evaluation it all came down to one thing, no matter which treatment I choose my chances of survival is the same and the chances are pretty good. I prefered not to survive wearing diapers and hoping that Viagar works so I chose the treatment with the least side effects, proton therapy. There are many good books out there on this topic and tons of info on this Website, so take your time and make the decision that works best for you. Do not listen to any one doctor. I would be happy to share my research with you if you would like to e-mail directly or you can just follow my posts on this site as soon as that function is up and running.

Take care,

Greg

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