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Paul Kowalczyk

Newly Diagnosed with PC at 51 - Be Aggessive or Passive?

As a newly diagnosed prostate cancer patient (51 years old, PSA of 0.97, T2a, Gleason 6 (3/3)), I’m struggling with treatment options. Is it best to have radical prostatectomy as my urologist suggests? I have no family history or symptoms but had a nodule (that was ultimately found to be benign) that led to two biopsies (two of 38 core samples came back < 5% positive). My psa increased from .61 over the course of 18 months - low velocity. Then I read that at least one male in six has PC and that small amounts of low grade PC are known to be present in up to 30% of the general population over 50 (PCRI Insights August 2003 vol 6, no. 3 by Mark Scholtz, MD Prostate Oncology Specialists citing two other studies) creating more anxiety about over-reacting and being too aggressive. Maybe watchful waiting or ADT is best despite my young age. A small part of me is still in denial and wonders if my cancer will be aggressive or passive to the point where monitoring my psa levels for awhile might not hurt. But if I do have cancer that's more aggressive, when do I reach the "danger zone" with reasonable assuance that I should have treatment and that the cancer hasn't spread beyond the capsule?

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Hi Paul

Sorry to see you here but there are a lot of good people here on this site.

I can't really help you from my personal experience because when I was dx'd at age 49 it was quite clear I needed to do something. I am not sure what I would have done if I had more options.

The only advice I have you is do your homework about the side effects of the treatment options. There are side effects to all the treatments.

Good Luck

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Thank you Bill. This is my first "chat" experience and it's been overwhelming. There are so many good people willing to lend support. I've learned more about PC in the last two weeks than I would have ever hoped to learn and will continue to do my homework.

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Hey Paul I agree with Bill M. continue with your homework. You can view my decision making process by logging on to http;//protondon.blogspot.com/ Don O.

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Don,

I'm going to have to take a look at your site. Any and all information is good and helpful at this point. I've read so much yet there is still so much more to research. I really appreciate you taking the time to respond and if I have any questions after viewing your site, I'll be back in touch. Thank you very much.

PK

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Paul Sorry about the typo. Please try again at http://protondon.blogspot.com/

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Paul, it's not immediately obvious why your urologist has recommended RP based on the data you have given. I would have thought that Active Surveillance would be a reasonable option to consider. Further reading which may help you make an informed decision follows:

The Case for Active Surveillance (John Hopkins Health Alert, June 2...

Active Surveillance: Towards a New Paradigm in the Management of Ea...

Active Surveillance and Radical Prostatectomy Overviews (Inst. for ...

Autopsy Study of 249 cases (Sakr et al, 1994) showing evidence of invasive carcinoma in 55% of men in their 50's

I have no medical qualifications - these are personal recommendations based on correspondence with the authors of the above papers (with the exception of the ICER link).

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Richard,

I've been thinking that as well but everyone I've spoken to in the medical field outside of my doc (two urologists, one breast cancer specialist and one general practioner) has told me that my age works against me - that there is significant risk to just monitoring my condition. There's still the belief that cancer in younger patients is more aggressive but I've found some studies that dispel that notion. I originally felt that if I can do AS I might buy some time as well on other potential treatments. There's been so much progress made in the last 10-20 years regarding PC, who knows when the next big breakthrough will occur. The main concern is that if I wait too long, it could prove fatal as the cancer could spread beyond the capsule. I don't really know when I would actually reach the "danger zone" (as it applies to staging, Gleason, velocity, etc.) and again, there's not a lot of data out there on someone in my age bracket. Thus the conclusion that the cleanest way to ensure a cure at this time, especially because we've apparently caught it so early, is to remove the prostate. My cure and progression-free survival rates are as good as their going to get right now. I'm still waiting for a 2nd opinion from another pathology center on my 2nd biopsy but I expect it will only confirm the original diagnosis. Thank you for the article links. I'm going to read them tonight.

PK

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I have had PCa since 1997 and have facilitated a Man to Man Prostate Education and Support Group since 1999.

Your numbers indicate a slow growing cancer. It takes a Gleason Score of at least 7 to have what is considered an aggressive cancer.

Urologists are surgeons and usually recommend surgery. Radiologists usually recommend radiation. I would get a 2nd and even 3rd opinion if I were you.

An increase of .36 over 18 months is also an indication of a slow growing cancer. If the PSA doubles in LESS than a year, the cancer is aggressive. Yours hasn't even doubled in 18 months.

When you get a 2nd opinion or even when talking to your urologist ask about Watchful Waiting. This is one of the options you have. You could have your PSA checked every 3 or 4 months and as long as the increase stays at this slow rate you could continue to watch it along with your doctor of course.

Be aware that any of the other treatment options: surgery, radiation, seeds, etc. all have major side effects. The side effects affect your quality of life - impotence, incontinence, are the two major side effects of surgery.

We don't give medical advice in Man to Man but we do offer suggestions about various treatments. If I had your diagnosis and the knowledge that I now have, I would select watchful waiting. It could be 20 years before your cancer reached the stage where you need more active treatment.

If I can be of further help to you, just let me know.

Brad

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Thank you Brad. I've struggled with having treatment vs. active surveillance but I have yet to talk to someone in the medical field who thinks it's worth the risk. It's definitely a good news/bad news scenario because the the thing that works against me with active surveillance (my young age) works for me should I choose treatment such as surgery (younger tissue and better recovery). Nothing's clear cut and of course there are risks no matter what I decide to do. I am collecting a lot of good info though so I am feeling better about being knowledgable in weighing my options. I appreciate your time and input.

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Paul.....
I too had a low..similar to yours, PSA at your age. I elected watchful waiting with the approval of my internist who is my primary Doc. When I was 66 PSA had slowly climbed to 4.2. Doc getting concerned, but advised me that I had a 40% chance of risk. (Cancer). I also, at 55, was having problems with BPH getting tighter as time went on. I started a diet to control BPH and was successful.
Suddenly, in just 6 months time, PSA jumped to 7.4 from that 4.2 and that was alarming to me & Doc, so I had a perineal prostatectomy ?? done.
Brad mentions after effects... Yes indeed. Wearing a pad all day to absorb urine is no picnic in the park, believe me. Not all guys have this complication, but it is something to think about. I have often wondered the same as you are thinking...how long should I have waited? I waited a bit too long, as urinary incontenance is, in my opinion, a result of that operation cos he had to take out more...(part of neck of bladder) than he would have if'n I had been in to see him a year before.
This is not necessarily gonna be your experience but I did want to share with you my experience with the waiting thing. Would I, would I, do it over again, yes, but not as long, no siree! Just get your PSA tested every 3 months. Might cost a bit but, believe me..that chart will surely tell you and your Doc whats happening down there!
Good Luck &
Cheers!

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John,

Thank you for telling me your story. Part of me wants to believe that active surveillance will work because this diagnosis is so far out of left field given my family history and good health habits. And while there are no guarantees under any circumstances, the risk is still very scary. I wish you well.

PK

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Paul,

That was a lot of needles - that wasn't very much cancer. There are a lot of guys who would love to have your PSA level. Take you time and don't do anything that you are not comfortable doing.

Consider all you options. If you don't think you would be comfortable on a surveillance routine, consider focal cryotherapy. See http://alprostate.com/aboutus.aspx and http://www.hopeforprostatecancer.com/gon-lumpectomy.asp .

Best of luck with your decision!

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