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Posted 7/23/2013 5:13 PM (GMT 0)
Wow! Who ever anticipates that one day they'll have cancer? As a 52 year old competitive athlete I never have. My health has always been excellent right up until the day my doctor told me I have prostate cancer. Of course, he's ready to check me into the hospital and remove my prostate and the cancer. I, on the other hand, am not interested in making a decision so quickly.

I row with my team 5-6 times a week and have a beautiful wife who is quite a bit younger than me. My bottom line is I don't want to be out of my sport for any longer than I have to and I sure as heck don't want my sex life impacted negatively...neither does my wife, but she certainly doesn't want me to suffer an untimely death by doing nothing.

The standard procedures I've read about...radical prostatectomy, photon therapy, robotic surgery, cryotherapy, etc. don't sound like very good options given my situation. Even proton therapy, which I don't think I'm a candidate for at Stage TC1, is debatable.

I'm starting to feel like what I'm currently doing, watchful waiting with a PSA test every 3 months, might be my best bet. Although my highly recommended urologist doesn't seem too terribly happy with my choice.

I realize there are no guarantees and everyone responds differently to the different treatments. However, if any of you highly knowledgeable, kind and experienced folks have treatment recommendations that may save my sex life and have the least impact on my rowing I'm all ears.

Staying positive!
Posted 7/23/2013 5:21 PM (GMT 0)
Your numbers seem to support active surveillance as a strategy. All treatment options have significant side effects.
Posted 7/23/2013 5:22 PM (GMT 0)
Welcome to the club noone wants to join!  You'll get lots of responses here.  Everyone's been through what you two are going through right now.  The choice has to be made together.  That's what my wife and I did.

For me it was personal...do the robotic surgery and get rid of it!  I couldn't see waiting around for the next test results to come in.  Do I regret it...no.  Have I had to adapt to a "new normal", yes. 

But, at 6 months out I'm back to basically doing what I was before and NOT WORRYING about the next test results!  Happy to answer any questions you might have about any particular matter, just PM me.

Posted 7/23/2013 5:32 PM (GMT 0)
TX_Rower,
If I were in your shoes I would definitely choose active surveillance. Actually, I might even go with watchful waiting, avoiding a repeat biopsy for now. Good luck!
Southern Comfort
Posted 7/23/2013 5:33 PM (GMT 0)
Texas,

It sounds like you mostly have things together. We hate that here. We prefer that new guys arrive panicky and wild-eyed so we can make a difference for them. I'm not sure we can help you that much, what with you being so calm and sensible. But welcome to the forum anyway.

My only suggestion is that you find a doctor who is experienced with managing men on Active Surveillance. What you have told us about your pathology makes you sound like a good candidate for AS but there is more to it than checking you PSA every three months. Biopsies are far from 100 percent reliable and there are additional diagnostic tests and procedures that reduce the risk that your very-low-risk-appearing cancer might turn out to be something that warrants more urgent attention.
Posted 7/23/2013 5:35 PM (GMT 0)
Welcome to our little neighborhood - and believe me, I can TOTALLY relate to what you're feeling right now!  I was 55 at Dx, a wife 10 years younger than I, incredibly active in sports, backpacking, cardio and weight training daily, eating right - and then, "You have cancer!"  Talk about a good palm thrust to the sternum!!!!!  Unfortunately for me I had a bit more positive cores come back, so I wasn't able to consider AS.  After months of some pretty intense research I settled on my treatment of choice and haven't looked back. Interesting that you are posting today, as this morning I came across what I would consider a really useful PowerPoint presentation that talks about all of the various treatment options, SE's, QOL, and so on, including AS.  It was given by Dr. John Blasko at the 2012 PCRI Conference and is titled "Low/Intermediate Risk Prostate Cancer."   Here's the link to the site where you can view this slide deck: http://www.slideshare.net/PCRI_2012conf/pcr-iconf-blaskoppt-14291411?from_search=2   In fact when I've got a bit more time I am planning on posting a thread with that link as the topic.   Clearly you are in the "Low Risk" category with your stats, and although I'm not a Dr - IMHO as long as you really focus on the "ACTIVE" part of Active Surveillance (" Watchful Waiting " is NOT the way you want to go.... there is a big difference there....) I think your heading in the right direction.    Best to you!  
Posted 7/23/2013 5:57 PM (GMT 0)
"The club noone wants to join," huh? Man, that's the truth...still it made me smile. :)

Thank you all for the quick responses. You already have me thinking!

@Casey59 - Thanks for the thread recommendation. I'll read it.
@A Yooper - Thank you for the PPT link. I'll download and go through it today.
@PeterDisAbelard. - A good point, well made. Would you mind pointing me to those "additional diagnostic tests and procedures" you mentioned, or who I might ask about them? I'd greatly appreciate that.

Thanks again! Any other recommendations still appreciated. I'm a sponge for any and all information at this point.
Posted 7/23/2013 6:06 PM (GMT 0)
TX_Rower,

WOW, our stats are like looking in a mirror. As you research and learn about PCa you will find out everyone situation and decision process is unique.  I have been following AS for over a year now with PSA test every 3 months and a biopsy once a year.  Once I see a rise in PSA or number of positive cores increase I will probable pursue Brachytherapy.  I have seen several Urologists and Oncologist's and nobody has discouraged me from following AS.

Since you would be considered low-Risk, take your time to learn as much as you can.  Don't panic and make any decision based on fear.  I just learned their is a genetic test to determine the aggressiveness of PC call Polaris by a company named Myriad.  Just one example how advances in medicine are working towards our advantage.

Good Luck! 

Posted 7/23/2013 6:42 PM (GMT 0)
Texas,

In another thread, one of our other moderators,

Tudpock18 said...
I agree that, unfortunately, there is no way of knowing with 100% certainty whether or not a patient's cancer is "insignificant". However, if I was diagnosed today with a cancer that was suspected of being "insignificant" there are a number of steps that I would take to help determine that and to determine if it stayed that way. Things like:

1. Getting a second opinion on my biopsy from Bostwick or Epstein.
2. Undergoing CDU or MRIS testing to ascertain the location and size of the tumors.
3. Having repeat biopsies at appropriate intervals based on the CDU results.
4. Getting a Prostavision (Bostwick) or bio-marker test to help determine the aggressiveness and prognosis of my cancer.
5. Adjusting my diet to help control cancer growth.
6. Using a physician who had considerable expertise in working with Active Surveillance patients.

The point being that far from "doing nothing" there are many things that the informed patient can do when faced with the possibility of "insignificant" cancer. Do these provide 100% certainty? Unfortunately, no. But they do provide an opportunity for the patient to significantly improve their odds of successfully avoiding invasive treatment.

Jim

The other thread is here -- www.healingwell.com/community/default.aspx?f=35&m=2795771 -- if you want to check it out. The guys got a little cranky on the thread but there was a lot of good information provided on both sides of the arguments that broke out...
Posted 7/23/2013 6:59 PM (GMT 0)
with those stats. Active surveillance, tho as a completive and active athlete, doubt you will go for that. Athletes are inclined to action. My opinion and the one I feel you will settle on , wisely , after due collection of knowledge here and elsewhere, is Brachytherapy, possibly proton therapy. It suits your profile to a T.{ less side effects| I say this not to influence you, just observations. Active surveillance it self is point of action, more subtly so…….. You do not need surgery to cure this. You probably could do nothing for 5 to 10 years and still be in a curable state. Every thing I have posted here is based on the stats in your signature. I recommend, as will others , that you have your slides read at a topnotch pca medical center, like John Hopkins or even MD anderson in your own state, so as to confirm the gleason score and the staging of your cancer. You have plenty of time to learn all about this disease and make a smart decision. Do no let your mind read a bunch into this disease, stay with the facts as you see them, you will learn a lot about yourself in this season, and that is all it is in your case, a season, mark it.
Posted 7/23/2013 7:24 PM (GMT 0)
Hi TX and welcome to HW. As you have already discovered by way of answers to your post, this is a place full of caring folks who are ready and eager to provide support and advice.

Speaking of advice, I think you have gotten really good advice already on this thread. You sound like you have your act together and AS is a perfectly reasonable alternative for you at this point. Should you need and/or want treatment at a later date, most of the alternatives should be available to you. I personally chose LDR brachytherapy and you can read my long-winded journey by following the link in my signature.

Good luck and let us know how you progress.

Jim
Posted 7/23/2013 7:36 PM (GMT 0)
TX_Rower
Sorry you had to join our club. A few suggestions:
* Research the "PCA3" test. Consider adding it to your watchful waiting. Plenty of google links on it
* Find out where the positive core is located. Is it near the center or closer to the outside of the prostate...?
* Consider having a second opinion on the slides. Make sure both reports agree that it's a single 3+3......

Good luck
Posted 7/23/2013 7:36 PM (GMT 0)
Maybe have a PSA test every 2 months and establish a pattern is the way to go. If you see a doubling time/number, then consider treatment. In the meantime, pick up a copy of 'A Primer On Prostate Cancer' by Dr. Stephen strum and gain some basic insight.

If you do have another biopsy, ask about a color dopplar imaging type that targets specific areas of the prostate and send those slides to someplace like Bostwick Labs that specialize in reading for possible cancer.

Post Edited (Trepidation) : 7/23/2013 1:41:36 PM (GMT-6)

Posted 7/23/2013 7:44 PM (GMT 0)
Welcome to our world.

From your stats, you are a poster boy for AS, and that may serve you well for some time. You have tons of great advice already given, so I can't really add much to it.

Hope you stay well under AS, for as long as possible, that will be your best bet to stay away from
ED and/or incontinence issues, regardless of a primary treatment choice.

Good luck, and keep us in the loop with your journey.

David
Posted 7/23/2013 8:25 PM (GMT 0)
Many, many thanks to all of you! I've collected more information from this thread in a few hours than I have in months of research on my own. You've collectively given me a lot to consider and talk to my wife about. Who, BTW, you've all made pretty happy and to whom you've provided some relief, the former of which is always a good thing, right? :)

One lifestyle change I figure I can't go wrong with, and I've already made, is to modify my diet to nearly 100% vegetarian. I just can't bring myself to jump all the way to vegan just yet. ;) Very little sugar, no processed foods, very little dairy, organic when we can find what we're looking for, and just a little chicken every so often...the list goes on. Surprisingly it hasn't been as difficult as I thought it would be, but my wife is a great cook and, of course, I have pretty strong motivation to stick with it. ;)

I don't remember off the top of my head who said athletes tend to jump to action. That may be true, but as a lifelong athlete myself one of many lessons I've learned is to strategize and contemplate off the field of play and don't put a plan into action until you're 100% confident in it. Maybe that has come with age. LOL! My situation is one where I feel very fortunate to have the luxury of time to think this through and extremely lucky to have stumbled across this forum.


@toyoung, PeterDisAbelard., logoslidat, Tudpock18, ddayglo, Trepidation - thank you for the ideas for treatment, AS, and all the diagnostic tests. My doctor and I are going to have a lot to discuss at my next appointment. :) I'm open to any and all ideas at this point, so keep 'em coming. :)

Next week I plan to make an appt at MD Anderson in Houston with an oncologist who specializes in prostate cancer.

I can't begin to express my gratitude to you all. Thank you!
Posted 7/23/2013 9:13 PM (GMT 0)
"Next week I plan to make an appt at MD Anderson in Houston with an oncologist who specializes in prostate cancer."

NEVER a bad idea. Love Texans and Texas BTW.
Posted 7/23/2013 9:20 PM (GMT 0)
TX,
From what you have posted you are in the "very" low risk category. One core <5% may not even be a tumor, but cancer clusters that come and go. A must read for you is "Invasion of the Prostate Snatchers" by Dr Mark Scholz as it is the best reference on low risk cancer. 70% of the men with your stats never progress so with AS the odds are on your side and you can always get treated in the future with little risk. Spend some time understanding the biology of a small core G6 cancer, it rarely metastasizes and rarely causes death and the majority of men over 50 have exactly what you have and don't know it and most likely will never know they have PC. Unfortunately some like yourself are biopsied, and that sets in motion what you are now experiencing. Find a good doctor that specializes in AS and have a consult with him. Most experienced doctors would advise against treating what you have and recommend a strict monitoring program.
JT
Posted 7/23/2013 9:35 PM (GMT 0)
Yes indeed, your biopsy stats indicate that you should be an excellent candidate for AS. Of course, this could also depend on the location of the tumor (is it well within the prostate or is it near the capsule, etc?).

The only caution I mention to AS candidates is that the decision is usually made based on the biopsy report. And it is important to be fully aware that the biopsy report is only an ESTIMATION of the exact nature of that particular case of PC.

about 28% of the time (from what I've read), the Gleason score ends up being HIGHER than predicted by the biopsy -- so there is somewhat of a roll of the dice in going with AS under the hope that a patient is in the great majority of those whose biopsy report truly is accurate.

For example, we've seen posts by many guys who were biopsied/diagnosed as a Gleason 6 -- but found out, through post-op pathology, that there actually were G7 or G8 tumors involved.

I'm not a doctor, but it would seem that you should be just fine continuing with the AS. But there is always that risk that there are more aggressive cancer cells that happened to be missed by the biopsy needle, so you should be aware of this.

Good luck!!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.
Posted 7/23/2013 9:37 PM (GMT 0)
Great advice John T. as always.

On another note, I wish combidex were available again and may be in a different form soon. It is far better than any bone scan prescribed today.

Posted 7/23/2013 9:51 PM (GMT 0)
Since its getting a bit monotone here I am tempted to rattle my chains a bit in my role as "The Ghost of Misdiagnosis Anxiety".

If you look at my signature (or at John T's for that matter) you will see that when we were first diagnosed we also looked like good candidates for AS but with second opinions and further evaluation our cancers turned out to require urgent treatment. You have to stay vigilant.

WhooOOOOoooo clank clank
Posted 7/23/2013 9:53 PM (GMT 0)
ReRead John t's post tx rower its good. Again and can not stress this enough get a reread of slides to confirm present biopsy stats. MD anderson and pca oncologist would be the one to set that up with
Posted 7/23/2013 10:17 PM (GMT 0)
Tex,
As so many members here have stated, I'm glad that you are taking your diagnosis calmly. Given your stats, there is no reason to change your lifestyle so enjoy life! As John T stated, you are VERY LOW RISK" and there is no reason to have any invasive treatments perhaps forever; maybe when you get to my age you might want to take an afternoon off and have a few "seeds" placed. In the interim, seek out a good AS doctor and just keep an eye on it. The advice that your "doctor" gave you about having "surgery" was not warranted in my opinion..Obviously I'm not a doctor, but we have too many members
who were told the same thing and based on the "fear" factor had surgery and are now living with miserable side effects...All the best to you and your wife "young man".
Bill idea
Posted 7/23/2013 11:12 PM (GMT 0)
TX,
Take your time and don't feel rushed into action. Proton is still a good option should you seek active treatment. The folks at MD Anderson can probably tell you if it is a good option for you. My experience has been excellent, still early in the game, but everything points to a positive outcome. Like you, quality of life was a big part of my decision to go with Proton. Good luck with whatever you choose.

Regards,
Kris
Posted 7/23/2013 11:31 PM (GMT 0)
TX, You mentioned changes to diet, in case you are thinking about changes to vitamins or herbs...

When my first biopsy was negative, I asked my urologist about taking those "prostate vitamins"... the urologist said I should not take them as they can "mask" the PSA level....
Posted 7/24/2013 11:14 AM (GMT 0)
TX,
My stats were very similar to yours...sounds like my lifestyle too. I've been criticized for saying it before, but frankly, the side effects of treatment scared me more than the disease itself. I chose to do AS (it was called Watchful Waiting then, but that made it sound like you really weren't doing anything, so they changed the name). I chose that because it has no side effects. I would still be doing that, but after 2 years, my situation suggested that I probably should have treatment. I chose a one-shot ldr brachy. I was back to work in 2 days, back to the gym in 1 week, and back to my life immediately with no regrets.
The point is that there is quality living after a pc diagnosis. You are very early in the process. Take you time to decide which treatment IF ANY is right for you.
God Bless
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