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49 and I must kill something I love... my prostate

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Posted 3/8/2010 3:26 PM (GMT -6)
Well, like everyone else, I did not see this coming.  Went through all the stages, denial, anger etc.  49 and never been sick a day in my life.  Blood tests always fabulous my whole life until the raised PSA, 4.7, 5.6 then down to 4.7 again.  Third biopsy found it.  Rated 2+3=5 gleason.  11 negative cores, 1 positive core, 5% of core positive.  t1c...  whatever that is.  Negative bone scan.

So I rationalize that this is not the end of the world (and it isn't).  I read up and determined that if I have to have this, I'm sittin pretty good cause we found it nice and early.

Then I start talking to doctors, all of which I respect, but it becomes very clear that each one wants to sell me what they've got.  If they've entered a field then I am sure they feel good about what they are doing and feel they are giving me good advice.  So I harbor no ill will.  But medicine is a business, and new customers are always welcome.

After all the reading and talking to people, I feel like I have a pretty good understanding of outcomes for the average patient.  The wrinkle is my age which takes me out of the 'average' category.  At least I feel like it does.  Every doctor has said, "You are unusually young and this is why you should take advantage of the treatment I have to offer."

So I will throw my treatment rationale out there and let everybody punch holes in it, which I am sure will make me want to kick my dog.  (I would never do that - I love my dog.  I love my prostate too...  nevertheless I must kill it!)

My lifestyle/livelyhood would be seriously affected by any period of incontinence or a lengthy recovery time, so I put surgery off to the side immediately.  I know many men have had good surgery outcomes and many have not.  I am not afraid of surgery, but if the outcome is not good, it could be a really big problem for me.  At 49 however, I realize I am a great candidate.  My urologist wants to take my prostate out like... yesterday.  He's like a kid in a prostate candy store.  I'm afraid to turn my back on him as he might knock me out and RP me against my will!

Brachy sounds good.  But if I make it to 80 yo, that means I'll have those things floating around inside me for 31 years.  I am just uneasy with that... although I have not ruled it out.

Cyberknife...  I really don't want to run the risk of frying my other parts for the sake of convenience.

I work and live 10 minutes from Sloan Kettering and they made a very good 'pitch' for IMRT (conformal external radiation)... and hey... It's Sloan Kettering.  I'll have to stop in 40 times over 8 weeks, but I can handle that...  I think.  I realize this is not risk free and can also have some nasty side effects,  including incontinence, diminishing potency over time and fatigue during treatment.

It all kinda stinks but I am leaning towards the IMRT at SK.  Does anyone feel I've done a poor job packing my parachute?  And if you've made it this far, thanks for listening and I hope you are doing well.  I realize there are a lot of brave souls out there in much worse circumstances. 

Posted 3/8/2010 3:52 PM (GMT -6)
 

Bassguy,

First of all you should relax and research all options a little more.  A Gleason score or 2+3 is very low and usually indicates a slower growing cancer.  The problem with IMRT is if the cancer comes back they cannot do surgery the only option available is hormone treatments which is not a cure.  At your young age I am sure you want a cure. As you can see a lot of us guys have had recurrances of our cancer and at least the IMRT was another option for a possible cure.  I am certainly not telling you what to do but you have time and I am sure you will be getting a lot of options from the others very soon.  There are a few guys on here that are your age or even younger that can tell you of their experience.

Hang in there and good luck.

Jerry1

 

Posted 3/8/2010 4:10 PM (GMT -6)

Jerry,

Thanks for your response.  Being relaxed does help one to be a bit more practical.  So I appreciate the advice!

When Sloan Kettering got my slides which had been evaluated at my urologists lab as a 2+3=5 they said...  "We don't give 2s...  so you're a 3+3=6 in our book."  There's a head scratcher.  I was waiting for them to say they were also having a one day sale on radiation treatments.

So you're right...  I should give this a good think.

So in your opinion is the RP surgery the only real 'cure'?

Thanks again.

Posted 3/8/2010 4:24 PM (GMT -6)
Hi - welcome to the site. With your "stats" active surveillance may also be a viable option. My uro suggested it to me after my first biopsy when only three cores out of 10 were positive, all with a low percentage of tumor, with Gleason = 6. However, the second biopsy found more tumor cells, and I opted for surgery. As others have said there is no need to rush, and investigate all options. If you want to read about the criteria for active surveillance do a search for Lawrence Klotz, or look at the Journal of Clinical Oncology, Vol 23, No 32 (November 10), 2005: pp. 8165-8169.
Posted 3/8/2010 4:41 PM (GMT -6)
"My lifestyle/livelyhood would be seriously affected by any period of incontinence or a lengthy recovery time"

Your lifestyle/livleyhood will be seriously affected if your cancer is not taken care of. I vote for removal (that's the route I took), either robotic or open. Any other treatment will have you wondering about it for the rest of your life, much more than removal would.
Posted 3/8/2010 4:52 PM (GMT -6)
Bassguy,

Glad you found us, and like me you were shocked to hear the word starting with the letter C. Like you I was in good health, though older than you. Run, canoe, Mtn Bike, I did it all and traveled to all my favorite spots. Couldnt imagine not being able to do those things. None of us can tell you what to do. My urologist did tell me that he thought that since there was a long life span in my family that he would go with the most aggresive treatment. Than I did my research and chose surgery. Like Jerry I than had to use my second shot at a cure which is IMRT and Friday will be my last of 39 treatments. Please do your homework and discuss with others and once you make a choice do not look back. Keep us posted aas possible.

Michael

Posted 3/8/2010 4:52 PM (GMT -6)
Bassguy,
The pathologists stoped reporting G5 a few years ago because this type of Gleason was indolant and was just scaring people into treatments they didn't need. Uping it to a 3+3 with a poor rationality is a little suspect as is the doctor who ordered bone scans for a G5, low psa.
Your reasoning for getting treated at all is flawed. Let's look at the facts and not emotion.
1. 50% of men over 50 have exactly what you have; a small core of low grade PC that will never affect them.
2. Most G6s never progress into anything that will harm you in your lifetime. about 30% eventually progress.
3. All the data available from major hospitals such as Hopkins and many other studies indicate that if it shows progress (rapidly rising psa) then when treated the cure rate is exactly the same as if treated immediately.
4. The pathologist should never have reported a G5 as this grade was virtually discontinued years ago as being indolant.
5. Brachy has less side affects and is more effective than IMRT and is much less costly. For low grade PC has the exact same cure rate as all other treatments. The seeds become inert after a period of time and are no more dangerous than having a small piece of metal under your skin.

From what you have said it seems like the doctors you have spoken to see a cash flow or a way to improve their stats. Get a good doctor that is familiar with AS, Hopkins has a program, and see what he has to say. In all likleyhood you may never have to be treated during your life time and most certaintly won't die of this disease. With a good diet you can stop the progression. There are a few postors on this board that have worse stats than you who are doing well under AS.
JohnT
Posted 3/8/2010 4:56 PM (GMT -6)

Bassguy,

I believe you have done an excellent job at processing the information, researching the treatments and choosing what you are comfortable with.  Even a Gleason of 6 you have plenty of time to continue your research so do not rush into a treatment decision because of the "sales" by treatment providers.  When I was going through the same journey I got down to robotic surgery versus proton beam.  If I had been your age I probably would have leaned more toward the proton beam.  My issue with all of the non surgical treatments was the continued PSA watch for the rest of your life or with radiation treatments the extended term impact to impotency and other tissue issues.  My engineering background has always driven me to define the problem and then solve it.  The only way I knew to handle the PCa was to have the prostate out and the pathology done so I would know to as high a degree of knowledge as possible whether or not the monster was out of me.  While there are advocates on this forum for different treatments it really comes down to what you feel is the right treatment for your situation. 

May you be blessed with comfort as you go forth on your journey.

Tamu

Posted 3/8/2010 5:09 PM (GMT -6)
With your age and Gleason score (11 negative cores, 1 positive core, 5% of core positive. t1c) you should at least consider sitting on your prostate for a while.
Posted 3/8/2010 5:17 PM (GMT -6)
So, you see, there are different opinions about what you should do here at HW, just as there are with the docs. Some say "do active survailance (AS)," some say seeds, some IMRT, some surgery, etc. I would say this: (1) you have what appears to be a low-risk cancer, so that is good news (to the extent "you have cancer" is ever good news); (2) John T refers to Hopkins' AS program, which is indeed very reputable, but I suspect they would not typically put a 49 year old man in the AS program (and, in any event, most young guys want treatment); (3) statistics I have read suggest that your chances of 10-15 year freedom from biochemical recurrence are quite similar wtih IMRT, brachy, and surgery, assuming your Gleason score is correct (a second opinion on the slides might not be a bad idea - just to make sure) -- the stats become a bit fuzzy past that time; (4) you are obviously at a terrific hospital; and (5) my bottom line suggestion: I would talk with a radiation oncologist, a surgeon (maybe Peter Scardino at MSK), and a medical oncologist at MSK, and get views from all of them -- or maybe they will consider your case as a "panel" and make a joint recommendation, which some of the academic medical centers will do. I particularly like including the view of a medical oncologist, since they would not be the one to treat your case, so they don't have a dog in the hunt, and yet they know a hell of a lot about how this disease acts. Best wishes, Medved
Posted 3/8/2010 5:33 PM (GMT -6)
Bassguy, are you surprised by the range of responses here? I suppose I would be with your diagnosis.
Having gone through the process, I'd have to say for me, with a Gleason 3+4, I would still do surgery over again. However... if I had a Gleason 5 like you, I would have gone active surveillance for at least a few years, even though I am about the same age as you. I miss my prostate dearly. It really depends on how comfortable you are with AS, however. Some guys are and some aren't. There is a guy at my work about identical to you that has decided on AS, and before I had my surgery, I thought he was crazy. I am more experienced with this whole thing now, and I think he is a lot wiser, now that I have had to battle ED and the initial incontinence after surgery. If you aren't comfortable with AS, I would second the votes for surgery over IMRT, since that gives you another option down the road, and hopefully your road will be long.
Best Regards, Jeff
Posted 3/8/2010 6:00 PM (GMT -6)

Impatient Jeff has posted almost exactly what I would post.  I guess it is in the name.  I too miss my prostate!skull

Cajun Jeff

Posted 3/8/2010 6:33 PM (GMT -6)
John t. Where do u get 30% of all Gleason 6 progress. According to John Epstien at Johns Hopkins 99.6% of all Gleason 6 after RP don't progress. Are you taliking about people who watch and wait with Gleason 6?
Posted 3/8/2010 6:34 PM (GMT -6)
Bassguy,
As you can see, you have received different opinions but, there is one constant in all of them and that is , take your time and evaluate all your options. Don't rush. I think what John T and Medved have suggested seem like god options. Don't lose your prostate yet. It is a big loss in many ways.
Posted 3/8/2010 6:55 PM (GMT -6)
Bass Guy, welcome to our corner of the world.

You are in the fortunate position, both because of your age/general health, and based on what you wrote, and extremely minimal dx of PC at this point. That means you have both the luxury of time an choices of what to do and not do.

AS ( the former watchful waiting) could easily be an option at this point, and thus delaying for a good while, or even longer, any of the side effects of a primary treatment

Seeding - sounds like you could be a model candidate for that, I wanted that originally for myself, but my stats made me not legible.

Then of course, surgery or straight IMRT.

With what I have been through, combined with what I have learned in past 15 months or so, I would be inclined to at least go through a sensible period of AS. We have one brother here, don't remember his name, that had surgery based on a very minimal case of PC, only to find out that his one positive core wasn't even positive, thus he didn't have PC after all. But he has to live with all his recovery and some side effect issues.

Hopefully, you don't even feel remotely rushed to make a decision.

Please keep us well posted, and ask as many questions as you want, no such thing as a dumb question.

David in SC
Posted 3/8/2010 6:59 PM (GMT -6)
hey bassguy losing the walnut is not the end of the world. it may seem that way for a while but things do get better after surgery. i was 49 with pc. couldnot live with a cancerous prostate and took it out. while i agree with the guys about having the option for sr therapy the dession will lie upon your shoulders. its your desion and yours only. just be able to live with the choice you make and be happy. i was not incontinent after the surgery but was strictured for awhile. that was cleared up. my ed is fast being a thing of the past. im only five months out from surgery. i paint a good picture for pc but thats how we want the results to be. some are not so lucky. i had the robotic removable procedure.  good luck on the dession. this is a good site for info and good friends. hopefully yours,  neil 
Posted 3/8/2010 7:20 PM (GMT -6)
Bassguy,

1.) As I am sure you have read biopsy Gleason scores can change after surgery.  Just because you are a Gleason 5 now does not mean you will be that after surgery.   

2.) I would send my slides to John Hopkins for a second opinion.  They will not grade you a Gleason 5 if you have prostate cancer.  You will be at least a 6 or they will tell you it is not cancer.  Even better, but if it is

Read this.

http://prostatecancerinfolink.net/2009/09/22/surgical-outcomes-for-patients-with-organ-confined-gleason-6-prostate-cancer/

3.) If you have prostate cancer no Dr. in his/her right mind will tell you to put radiation in your body when there is a surgical alternative.  You are too young and risk future cancers from the radiation.  Mainly rectal.

Remember, surgeon experience makes a big difference in reccurence rates.  You need to see a surgeon that does RP all year long and has done over 200 surgeries.  Then ask them for their ED and continence stats.  If they don't have them don't use them.  I went to Johns Hopkins because they had all this data available.   

 

Posted 3/8/2010 7:26 PM (GMT -6)
What's the rush? If I had your stats I'd spend the next 6 month emptying my prostate as often as possible. Consider it therapy. You are exercising and reinforcing connections. Throw a few kegels in there as well.
Good Luck,
Jeff (the leaky one)
Posted 3/8/2010 7:33 PM (GMT -6)
Bassguy
- you have found a great bunch of guys (and gals) who can share with you their life experiences with prostate cancer.

It is a good thing you discovered them now. I found out about this site after my surgery - I am content with my decision and my doctor - but when the variables that face you suggest a slower growing cancer - that in itself gives you time to find the best solution - surgery, AS, radiation, etc... the best doctor for you - so when all is said and done - you are content with your decision.

I agreed with what was said by the two Jeffs - Cajun and Impatient ( and you can add me - I was a Geoff)

I hope you have been able to be open enough to share your journey with friends and family and spouse (if any). It is a scary journey when you feel you are all alone. That is one of the main things that makes this forum so comforting - you are not alone.

Wishing you all the best.

hugs
BRONSON (since June 4, 1994)
Posted 3/8/2010 7:38 PM (GMT -6)
I can't thank everyone enough for all the responses.  It seems the recurring theme here is 'don't rush if you don't have to' and 'make sure you are completely comfortable with what you choose'.  I understand doctors not wanting to be passive these days.  We are such a litigious society that they can put themselves at risk for not waging all out thermonuclear war on a problem.  I had commited (to myself) to making a decision this week, but it was an arbitrary committment.  Your responses have convinced me to further investigate more options.  I realize AS is not and cannot be passive.  I appreciate the heads up on looking into the protocols on that as well.  Thanks again. Everything contributed here has been helpful. 
Posted 3/8/2010 8:15 PM (GMT -6)
Bassguy
Hey, I must not be far from you! Email and I'll buy you a beer. I echo all these guys. Unless your doc is rushing, take your time. I was exactly your age when Diagnosed. Email me...there is a whole clump of us around you.
Paul
Posted 3/8/2010 8:32 PM (GMT -6)
I agree with John T's observations (plus ChrisR's correction to those faulty statistics). It is 1 in 20 PCa detects -- just no one knows which of those is the One.

Also as you can see my stats were just like yours -- a mere whisker of PCa. The big diff for me was the whomping big prostate (BPH-wise). Unlike others I am happy to see it go and of course the PCa at least made it more dramatic -- who would have sympathy for me for plain old BPH?

One final thought, and I am not trying to peddle false hope, but think about new treatments coming down the line (like Provenge by Dendreon in the next year). If they are there as promised, you can take advantage of such non-invasive methods and save your Prostate and everything that goes with it. Some are aimed at metastatic advanced cancers, but if they turn out to be effective for the majority of cancers, why would anyone want medieval prostatectomies??
Posted 3/8/2010 9:06 PM (GMT -6)
Hey Jim...  Hey Paul.  Can do.  Maybe something in the water?
Posted 3/8/2010 9:25 PM (GMT -6)
Dear Bassguy:

Sorry you have to be here but welcome.  Like any forum of this type you will get both good and bad advice and, unfortunately, you will have to weed thru it and decide what is good for you.  IMHO, two examples of the good advice were related from JohnT and Selmer.  That is you may safely have another alternative that does not require ANY invasive treatment now (maybe never) and Peter Scardino's recent comments about non-surgery for low risk cases is a HUGE breakthrough statement from one of the most well known prostate surgeons.

On the other hand the comments from one poster stating that the only option after radiation being hormone therapy is patently untrue.  Cyrosurgery, HDR, re-seeding and HIFU are all being used in addition to HT.  A common theme among many surgeons is that you need to have surgery in order to have the radiation option open later is a great sales tool but leaves out part of the equation.

Also, you need to know up front that most men on this forum have had surgery and some of them had it for early stage cancer that one of our posters would call "treating anxiety" rather than treating cancer.  The by products of surgery can be very serious and I would encourage you to spend some time here reading threads about penis injections, viagra, incontinence, strictures, short penises, ejaculating urine, male slings, etc, etc, etc, to see what I mean.  Some will think I'm trying to scare you by that comment....rather, I would just hope you take the time to become well educated about both cures and side effects before making what could be a life changing decision.  Also, many of us have details about our "journey" in our signatures...I encourage you to read these as well.

Best of luck and please stay will us and let us know how you progress,

Tudpock

Posted 3/8/2010 9:44 PM (GMT -6)
Tudpock,

Thanks.  I appreciate your chiming in!  I think hearing from others who have made the journey is very helpful and important ingredient to making an informed decision.   I don't think I would be anxious about keeping an eye on this and proceeding conservatively if the body of evidence and advice supports that as a viable approach.  I have no symptoms so I am not in a hurry to throw the baby out with the bath water.

Thanks again to everyone for the warm welcome and helpful advice. 

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