HealingWell
Search Close Search
☰

just found ou that I have prostate cancer

Support Forums
>
Prostate Cancer
Did I do the right thing?
yes - 77.8% - 7 votes
no - 0.0% - 0 votes
maybe - 22.2% - 2 votes
what, ar you crazy? - 0.0% - 0 votes
better off doing it yourself - 0.0% - 0 votes
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/2/2009 3:01 PM (GMT -6)
cool  I just found ou that I have prostate cancer.  I am ok with it.  My PSA is 4.8, very slight elevation.  My PCP had me do the blood thing again and the then see a Urologist.  Had a biopsy done and found Gleason to be 3 + 3 =6.  Second opinion by Johns Hopkins.  I have an appointment with my DiVinci robotic surgeon on 4/7 with the surgery scheduled for 4/20.  I have made an appointment with another surgeon for 4/8 just to get his opinion on my situation.  I have no symptoms other than the PSA.  Any words of encouragement will be appreciated.  Good luck to all.  Drummer.
Posted 4/2/2009 3:13 PM (GMT -6)
Welcome Drummer...not sure I follow your story all that well and I do not really understanding what the poll is about either.

So you had a biopsy with a Gleason score of 6 and a PSA of 4.8...seems like you caught the cancer early. Do you know the percentage or number of cores involved. And when did you have the biopsy...was it recent? Surgery is a good option, but there are others as well. Just make sure you take the time and review all treatment options before making any final decision.

And Welcome to HealingWell...lots of caring folks here.
Posted 4/2/2009 3:43 PM (GMT -6)
drummer,

Welcome to the board that no one should have to join. Your stats are very similar to mine and I can tell you what I felt at the time, because I had been studying treatment options even before the biopsy, just in case. I wanted to live, I wanted the cancer out of my body, and I wanted as much of my love life left intact as possible. Build yourself a signature in the control panel and keep us updated. Only the best of luck to you, your gonna do fine.
Posted 4/2/2009 4:20 PM (GMT -6)
cool  I am not sure what the poll is either but it was an option at the time I posted.  I had the biopsy on Friday 2/13/09.  They took 12 cells and found cancer on 2 with an early "potential" on 2 more.  The 4 little devils were 2 together at 7:00 oclock and 2 together (potentail) at 1:00 oclock.  I met with a nurse practioner on 2/24 and just about made up my mind to go ahead with the robotic surgery then.  I did read a few books, talked with some firends and made the decision on 3/2/09.  The doctor was able to set up the surgery from my e-mail to him.  He has said that I can cancel after I meet with him on 4/7/09.  Good luck to all.

Drummer 

Posted 4/2/2009 4:23 PM (GMT -6)

Dear Drummer:

Without seeing your stats it's difficult for me or others to give you anything but broad advice.

Having said that, I echo LV-TX.  That is, surgery is probably a reasonable option.  However, for your own peace of mind and to make an informed decision, you should consult physicians other that surgeons.  You should see a radiation oncologist and a prostate oncologist.  Depending on your stats and age you might consider watchful waiting (aka active surveillance).  Radiation, brachytherapy or other, could be a good choice.  You might want to consider proton beam therapy or even a clinical trial like our colleague realziggy who posts on this site.

The bottom line is get yourself educated and consider all of the options before making a final decision.  This is a big deal and you want to be as sure as possible.

Good luck and I hope you take the time to research the possibilities.

Tudpock

Posted 4/2/2009 4:36 PM (GMT -6)
cool  Hi Sandstorm,

I am 66 and very active.  I play the drums therefore the name drummer.  I have read a few books, "Prostate for Dummies" and another book by a renoun Prostate specialist.  The guys that I have talked too have had the "open surgery", radiation, seeds and of course the Divinci.  One friend did not catch it in time and it has burst into his bladder.  Based on what I ahve read and heard the Divinci is my best approach.  The guys that went with other treatments, that I have talked with, wish that they had gone with Divinci.  One reason that sticks out is, if the Divinci does not get all of the cancer, I can have other treatments i.e. radiation.  If I go with radiation first and it fails, I cannot go to the Divinci.  It seems that the other treatments have slightly higher risks.  Good luck to all.

Posted 4/2/2009 4:42 PM (GMT -6)
cool  Hi Tudpock 18

Thanks for your concerns.  I will know more after I meet with the Dr. on 4/7/09 but here is my info: 

I am 66 and very active.  I play the drums therefore the name drummer.  I have read a few books, "Prostate for Dummies" and another book by a renoun Prostate specialist.  The guys that I have talked too have had the "open surgery", radiation, seeds and of course the Divinci.  One friend did not catch it in time and it has burst into his bladder.  Based on what I ahve read and heard the Divinci is my best approach.  The guys that went with other treatments, that I have talked with, wish that they had gone with Divinci.  One reason that sticks out is, if the Divinci does not get all of the cancer, I can have other treatments i.e. radiation.  If I go with radiation first and it fails, I cannot go to the Divinci.  It seems that the other treatments have slightly higher risks.  Good luck to all.

Posted 4/2/2009 5:42 PM (GMT -6)
Drummer, if you decide to go with surgery, be sure you do some research on your surgeon. The skill of the surgeon is very important to your outcome. Make sure he / she has performed a good number of prostatectomies. You don't want the doctor practicing on you. I've heard the learning curve is about 300. My doctor had completed 1500+ at the time of my surgery.
Posted 4/2/2009 6:02 PM (GMT -6)

Hello Drummer:

I certainly was not trying to talk you out of your choice of treatment.  Robotic surgery is a fine choice and most patients who are good candidates for that experiece excellent results.  However, the patients who are best informed usually choose to discuss the options with multiple physicians who practice different treatments.  I know I did and felt better for it since I felt my final decision was well founded.

Obviously you feel you have enough info, so I wish you the very best for cure and recovery.  Please stay with us on this forum and let us know how you progress.

Tudpock

Posted 4/2/2009 6:05 PM (GMT -6)
Drummer,
Sorry to hear that you have joined the group. Please take Tudpock's advice. I think you are making an important decision much too quickly based on not a lot of information.
With a gleason 6 and at your age any treatment including none will produce about the same results. It is very unlikely you will die from PC no matter what you do. Make sure you understand the permanent side affects all treatment options as in some cases the treatment is worse than the cure.
The best advise for a favorable outcome is fairly simple:
1. Understand the biology of your individual cancer.
2. Choose the treatment option that best fits the biology of the cancer.
3. Choose the best specialist to do the treatment.
Other people's experiences may not be useful because each cancer and situation is individual and only you can determine what you are willing to accept in terms of risk and living with the side affects of treatment.
You can only do this by getting 2nd opinions from doctors in all fields, IE prostate oncology, surgery and radiation. Reading "Prostate Cancer for Dummies" is not what I would consider good research.
JohnT
Posted 4/2/2009 6:48 PM (GMT -6)
cool  We are all firends here even if we never meet.  I appreciate everyone's response and continue to  hash out in my mind the best course of action for me.  I should be spelling DaVinci correctly. 

The other book that I have read is Doctor Patrick Walch's "Surviving Prostate Cancer".

The biopsy was done at Lahey Clinic and the first lab report was also from Lahey in Burlington MA.  They sent my cells to John Hopkins for a second lab report and the report was the same:

{ight APEX: small focus of Adenocarcinoma of the Prostate, Gleason grade 3 + 3+ 7 and Left Base: small focus of adenocarcinome of the prostate, Gleason grade 3 + 3= 6.  John Hopkins went on to say; "The diagnosis of carcinoma is supported by the failure of immunoperoxidase staining for high molesular weight cytokeratin and P63 to demonstrate basal cells in the atypical glands.  Also favoring the diagnosis of cancer is the stains for RACEMASE (a marker preferentially expressed in prostate cancer) are positive"}

I frankly do not completely understand all of this technical language but will gather more information with my 4/7 appointment at Lahey and my 4/8 second (surgeion's) opinion.

Again, I will never take offense to any comments, suggestions, recommendations from you all.

Thanks and good luck all.

Drummer

Posted 4/2/2009 7:25 PM (GMT -6)
Drummer,
Sorry to see here. I'm one year older than you but my Gleason score was much higher. I had no other choice but surgery. I had the Da Vinci Robotic surgery by Dr. Fagin in Austin Texas who has done over 1300 such surgeries. The advice that you are getting here are all valid. With your low Gleason and small number of positive cores, you have time to get other opinions and do what you feel gives you the best result. The Robotic surgery itself is the easy part, it is what comes next that you need to be aware of. It has been 7 weeks since my surgery and I still have some incontinence isues. Of course there is also ED which varies from person to person and how good your surgeon is in preserving your nerve bundles. Mine were removed due to my aggressive cancer and me wanting to get a negative margin which I did. Good luck with whatever you decide.
Posted 4/3/2009 2:29 AM (GMT -6)
Hello Drummer,
Good to see from what you say that you are ok with the news. I was like that myself, I felt little emotion just a need to get on with the job. Perhaps it helps being male in that respect. Take a bit of time and advice before what you decide to do then good luck.
Posted 4/3/2009 9:22 AM (GMT -6)

Mr. Drummer,

I don't get to post here often these days, but I have a moment on my brother's computer.

It sounds like you have done your homework and are making an informed decision.  
I am a big fan of getting a second opinion after you have made your decision - with the best treatment facility you can coordinate.  (For my second opinion, I drove 150 miles to the prostrate oncolgist at M.D. Anderson, Dr. Matin.  I am sure you can find someone closer to Johns Hopkins.)

With a "gleeson 6" and being 66, you might be one of the people that could consider watchful waiting.
I had a "6" and only one of eight cores with 5% - but when they did the post-surgery biopsy, they found the tumor was larger than the biopsy suggested - and touching the inside wall of the gland.  I was lucky to have it removed in time.  As I plan to live another 30 years, watchful waiting was never a question - and my case suggested surgical removal. 
Some patients have co-morbidities that make surgery risky.  Every patient's decision is indvidual. 
Some would choose Proton Beam - but decide the cost doesn't warrant the possible benefits of that type of radiation.

Most will regain continence in 14 weeks.  Some don't - but except for proton beam, all procedures can lead to incontinence and E.D. 
E.D. issues are best studied by researching threads here by Swimom and others.

If you are sexually active and your life expectancy is only ten more years, then I'd say seriously consider watchful waiting.  Even still, I'd get a saturation biopsy if I were to really consider that.  My urologist pointed out that a lot can be missed with only a dozen or so samples of a gland that size.

Godspeed.

ICTHUS!

CCedar

Posted 4/3/2009 10:01 AM (GMT -6)
Sorry you had to join this club:( My husband just had brachytherapy done but not until he had checked everything else out. His Gleason was 3+3++6 and his PSA was low.

The best advice we got from this board is.....you have time, do tons of research and then make your decision.

Bless you.
Posted 4/9/2009 8:21 PM (GMT -6)
cool  Thank you all for the helpful suggestions and good wishes.  I had a second opinion by a surgeon in Boston MA.  He has done over 1,000.  He confirmed what the first surgeon had told me.  I am proceeding with the DaVinci robotic and will have it done on April 20.  I tried for April 15 so that one pain would block out the other (tax day) but the 15th was booked.  There were many factors in my decision.   The prostate will be out.  They can use it for research.  They will test it to see if the cancer was contained within the gland.  etc etc.

I hope that my situation may help some other guys.  I sing in a church chior and 3 of the 5  guys have Prostate cancer.  One guy is watching and waiting.  The other guy is in a state of shock and needs some guidance.  I will give him this web site as it has helped me a great deal.  I will also relay what I have learned from this web site.

Thank you a good luck all.

Drummer

Posted 4/9/2009 11:01 PM (GMT -6)
hi Drummer,
I am a Bluegrass/Country/Christian musician by hobby. I have played guitars, bass, Dobro for many years (33+). We have other musicians here and I have recently befriended a bass player for a pretty much big time 60's rock group as well. LOL we should get this wiley bunch a song.

Good luck in your treatment. Your decision is highly personal and it has to meet your requirements and expectations. Stay close. This is a great group here. You will be able to ask about any question and get an experienced answer.

Peace and may many blessings come your way.

Tony
Posted 4/16/2009 10:41 PM (GMT -6)
Hello Drummer:
If you examine my profile (below), you will see a situation similar to yours. A Gleason score of 6; low grade cancer staging (T1c). Age 65 at time of biospy and daVinci surgery. Good health, except for the PCa. Very active - tennis, golf, lift weights and bike.
I, too, aggressively made the decision for daVinci robotic surgery for many of the same reasons which you have stated. I rejected the other methodologies for many of the same reasons. I did seriously consider "watchful waiting", but at that time the logic of that approach was not persuasive. It seemed more logical to just get the cancer completely out of my body. If it means anything, at the time my doctor had performed in excess of 500 daVinci RRPs. In fact, my external recovery from the surgery was rapid; no pain whatsoever, and I returned to tennis in 5 weeks.
Prior to the surgery, I considered the possibility/probability of ED, and I made peace with that consequence. It was very difficult, but quite logical. However, it turns out that I did not adquately consider the possibility of extreme incontinence and its consequences. I currently am 17 weeks RRP, and am totally incontinent. It's not just damp or wet diapers; it's at least 7 soaked diapers per day, every day. Plus, I immediately void into my diapers upon rising from a prone or seated position. My sphincter is open (per a cystoscopy), and will not close, as per normal. Dealing with this extreme incontinence occupies a significant portion of my day. While it doesn't stop me from doing many things (tennis), it does alter my day and my thoughts. I often think that "watchful waiting" would have been a better choice, and I often consider how many years in my 70s I would forego for a current return to normalcy.
It is interesting to note the divergence in the comments from those of us in our mid-60s vs. the others who are younger. Remember --- with this surgery there are no "do overs". If any of the ancillary effects from the daVinci surgery has the potential of seriously and adversely affecting your life over the next 5 to 10 years, you owe it to yourself to incorporate those considerations, as well as your current age, into your decision making process.
Good luck, and if you continue with the daVinci surgery, I hope that at least your external healing will be as rapid and pain free as was mine.
Posted 4/17/2009 6:24 AM (GMT -6)
cool  Well, here it is Friday morning with the DaVinci surgery on Monday.  It is funny, I do not seem as worried as before and am sleeping quite well.  I have arthritis and had to get off the medication (meloxicam) which worked very well, ten days ago.  The arthritis is my only pain.  I greatly appreciate all the comments and feel as like we all know each other and care for each other.

I will post again after the surgery.

Thanks and good luck all.

Drummer

Posted 4/17/2009 7:29 AM (GMT -6)
Drummer...keep the great attitude going and we will look forward to seeing you on the other side. BTW...I am on arthritis pain meds too...isn't that a bummer not taking them for 10 days before surgery....oh and for me after the surgery it took a few days to build the meds back up into my system, so I had joint pain on top of surgery pain to deal with. Best advise I can offer...get out of bed and start walking as soon as you can. That will help with both types of pain.

Good luck...I will look for your post surgery report when you are up to it.
Posted 4/17/2009 8:44 AM (GMT -6)

RHC Jr. said...
Hello Drummer:
If you examine my profile (below), you will see a situation similar to yours. A Gleason score of 6; low grade cancer staging (T1c). Age 65 at time of biospy and daVinci surgery. Good health, except for the PCa. Very active - tennis, golf, lift weights and bike.
I, too, aggressively made the decision for daVinci robotic surgery for many of the same reasons which you have stated. I rejected the other methodologies for many of the same reasons. I did seriously consider "watchful waiting", but at that time the logic of that approach was not persuasive. It seemed more logical to just get the cancer completely out of my body. If it means anything, at the time my doctor had performed in excess of 500 daVinci RRPs. In fact, my external recovery from the surgery was rapid; no pain whatsoever, and I returned to tennis in 5 weeks.
Prior to the surgery, I considered the possibility/probability of ED, and I made peace with that consequence. It was very difficult, but quite logical. However, it turns out that I did not adquately consider the possibility of extreme incontinence and its consequences. I currently am 17 weeks RRP, and am totally incontinent. It's not just damp or wet diapers; it's at least 7 soaked diapers per day, every day. Plus, I immediately void into my diapers upon rising from a prone or seated position. My sphincter is open (per a cystoscopy), and will not close, as per normal. Dealing with this extreme incontinence occupies a significant portion of my day. While it doesn't stop me from doing many things (tennis), it does alter my day and my thoughts. I often think that "watchful waiting" would have been a better choice, and I often consider how many years in my 70s I would forego for a current return to normalcy.
It is interesting to note the divergence in the comments from those of us in our mid-60s vs. the others who are younger. Remember --- with this surgery there are no "do overs". If any of the ancillary effects from the daVinci surgery has the potential of seriously and adversely affecting your life over the next 5 to 10 years, you owe it to yourself to incorporate those considerations, as well as your current age, into your decision making process.
Good luck, and if you continue with the daVinci surgery, I hope that at least your external healing will be as rapid and pain free as was mine  

Sorry to hear about your devastating incontinence issues. May I ask whether or not any  reason or explanation has been provided for such a drastic outcome- any pre-surgery major urinary related problems? I hope things improve for you- sounds like your worst nightmare.

 

I am in the process of trying to decide on a treatment method ( or not ) and your story scares the hell out of me.

 

 

Posted 4/17/2009 8:49 AM (GMT -6)

drummer said...
cool  Well, here it is Friday morning with the DaVinci surgery on Monday.  It is funny, I do not seem as worried as before and am sleeping quite well.  I have arthritis and had to get off the medication (meloxicam) which worked very well, ten days ago.  The arthritis is my only pain.  I greatly appreciate all the comments and feel as like we all know each other and care for each other.

I will post again after the surgery.

Thanks and good luck all.

Drummer

Good luck Drummer- you seem to have a great attitude and thats half the battle.

Posted 4/17/2009 2:35 PM (GMT -6)
How do you get a drummer off of your front porch ?

Pay him for the pizza.

Why do guitarists keep drum sticks on the dash of thier cars?

So they can park in the handicap spaces.

What do you call a guy who hangs with musicians ?

A drummer
Posted 4/22/2009 6:43 AM (GMT -6)
cool  Well I had the DaVinci nerve sparing sugery on Monday 4/20/09.  All went well but I do have a lot of gas which I cannot pass.  My stomach is bloated about two belt sizes and there is pain in there along with pain aroun dmy right shoulder.  The Doctor was able to spare the nerves ad he believes from the look and feel of the prostat that the cancer was contained.

I am still strugglingwith the catheter.  I have had a couple of spills but my wife is very understanding.

All in all I am happy that I went this way and will add on as I get my post op meetings done.

Thanks to all for your kind help and good luck all.

Drummer

Posted 4/22/2009 7:32 AM (GMT -6)
DRUMMER, I HOPE YOU GET WELL SOON.

I WAS DIAGNOSED THAT WITH GLEASON 3+3, PSA 5.1 AND FREE PSA 0.3. I AM TRYING TO FIND BEST FOR ME...I AM 56 YO VERY SPORTY....I AM CONFUSED ALREADY...I LIVE IN NORWAY, MY DR ADVISED ME TO HAVE AN open SURGERY...I PREFER HIFU...DOES ANYONE SUGGEST STHING TO ME?

REGARDS ALL

MERCEDESMAN
✚ New Topic ✚ Reply
12