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Posted 8/9/2009 2:19 AM (GMT 0)
 

     I am 67 yr old healthy male diagnosed with PC on 12 July following a 28 core transperineal saturation biopsy at the Mayo Clinic in Jacksonville.  5 cores were positive including 2 gleason 8 in the right peripheral zone,  2 gleason 7 in the upper right transition zone and one gleason 6 in the in the upper left transition zone.  I had a 10 core all negative transrectal biopsy  last September. My DREs have always been normal.  Since my PSA went from 4.5 to 5.6, we did the saturation biopsy.  Dr Igel the urologist at Mayo said I could have robotic or open prostatectomy - I chose open for 13 August because of the Gleason 8s. I think he also said there was no perineural invasion - is that possible to diagose with the biopsy?

     My questions are: (1) is it unusual to have the cancer in 3 different locations with negative cores between the locations and what does that mean  and (2) does anyone have information on the Mayo Urologists in Jacksonville, Florida?  I feel like I am in good hands but you never know.

Posted 8/9/2009 2:28 AM (GMT 0)
Sailor: I don't know the answers to your question. I would have to agree with you conclusion about open prostatectomy. My Dr. advised that for him to feel my lympth glands. As most of us will comment we hate that you have ahd to find us for info. We wish no one ever needed to find info on Pdrostate Cancer. You wiil find great support and I suspect you will have answwers to you questions in short order.

Good luck and keep us posted on your progress. We are all brothers in PC.

Jeff
Posted 8/9/2009 2:47 AM (GMT 0)
Sailor,
Sorry that you have to join us. I would definately get a 2nd opinion for a couple of reasons. Gleason 8 is agressive and you have to know if it has already spread outside the prostate. A PAP test or a DNA plodidy analysis could add some information. There could be other tests that a good oncoligist can recommend. Transition zone tumors are very difficult to operate on because getting a good margin is very difficult and takes an expert surgeon; this is according to Dr Sardino at Slone Kettering. I would have any surgeon explain how exactly why he thinks he can get it all without damaging the urethea.
I would also have a consult with a radiation oncologist to see what he thinks; the Danatolli Center is in Fla. and they have good scanning technology for PC.
The keys to a fovorable outcome:
Know the biology of your cancer by getting scans and tests that give you information about your individual situation.
Choose the treatment best suited to your cancer's biology.
Pick the absolute best expert to do the treatment.

It is very common to have PC in more than one area. Perineural invasion doesn't mean very much. Extra capsular extension and seminal vession invasion would be much more of a concern. A good DRE is a plus.
Good luck on your journey. You will get a lot of information and different opinions on this site, but in the end you have to make the best decision for yourself.
JohnT
Posted 8/9/2009 3:27 AM (GMT 0)
John T. thanks for the information.  Dr. Igel is the Chair of the urology dept at Mayo in Jacksonville and is listed as a Castle Connolly top Doctor.  Also, he is listed as one of the surgeons who does at least 30 rrp per year and puts him in top 25% nationally.  So I guess I have a competent surgeon and hopefully he can spare the urethea.  As far as other tests, what would they tell me?  

Posted 8/9/2009 4:58 PM (GMT 0)
Sailor,
The latest protocol for a Gleason 8 is a combination of therapies, HT and surgery, surgery and radiation, radiation and HT; this is recommended by the Prostate Cancer Research Institute and PAACT. PAP and DNA plodiy can indicate if the PC has spread, in which case surgery may not be the best option. An MRIS can see the peripheral zone and any possible extension. A color doppler ultrasound can see the transition zone and indicate tumor size and it it is near any structures that could make surgery difficult or impossible. Surgeons will always recommend surgery that's why it is important to get a 2nd opinion from an unbiased source that has no gain from the treatment choice. That would be a prostate oncologist. Dr Wheeler is in Sarasoata; he may not be the best oncologist in the US, but his knowledge of PC is far greater than that of any surgeon.
JohnT
Posted 8/9/2009 5:26 PM (GMT 0)
The suggestion that you see a prostate oncologist is a good one. Your case seems right on the edge when it comes to selecting a treatment or series of treatments so you need a doctor with the broadest range of
PC knowledge. You can take the suggestions about various tests to indicate that there is more that might be learned diagnostically and then put the choice in the hands of an oncologist.

One of the themes on this board is get more opinions and this is reinforced because we see members who benefit from that. We are not against surgeons or surgery -- that is the treatment that the majority of us chose. It may seem that we are complicating a decision which you have already made and we apologize for that. Please know that no matter what treatment you choose we are here to support you every step of the way.
Posted 8/9/2009 5:29 PM (GMT 0)

Dear Sailor:

Sorry you have to be here but we are all here to support you and answer any questions we can.  I cannot improve upon the info you received from JohnT and Geezer...you absolutely, positively owe it to yourself to get opinions from a prostate oncologist and a radiation oncologist in addition to your surgeon.

Good luck,

Tudpock

Posted 8/9/2009 6:35 PM (GMT 0)
Sailor,
Welcome here. With your stats, I feel you are a strong candidate for surgery, before it gets any worse inside your prostate, if it hasn't already. Getting the other opinions suggested is very valid, then when you go with your choice, you know you asked all the right questions to the right people, and you can live with your decision.

Please keep us posted in your PC travel.

David in SC
Posted 8/9/2009 11:53 PM (GMT 0)
Thanks for all the info and support.  I have received information from the Shands Hospital in Jacksonville which is only one of five doing proton beam radiation for PC.  Based on the biopsy report, and if I go with surgery,  I am preparing myself for adjuvant therapy etc. because of the two gleason 8 cores and I know that Shands does adjuvant and salvage with the proton beam therapy.   Sure is a big decision and I want to get it right.  The Old Sailor

Posted 8/10/2009 9:30 PM (GMT 0)
Whatever you decide, put skill of the doctor over the personal convenience and cost. If you can, go to the best doctor you can find, not the best local doctor. Look for docs who do only PCa treatments (especially if you decide on the surgery). Your outcome will greatly depend on the skill of the doc and less so on the modality of the treatment. Best of luck!
Posted 8/19/2009 12:53 AM (GMT 0)

I had the open prostatectomy last thursday, 13 August.  Pain on first day was about 6-7, on second, third, fourth about 9 of 10. Started to abate yesterday  I had total knee replacement last july that didn't hurt as much as the RPP. Pain was so excruiciating on day two that I was barely able to get out of bed without assistance of 3 persons - thank God for pain killers!!

Surgeon said a lot of scarring in prostate probably due to so many prior biopsies.

The pressure from the catheter is very intense and I have to have it in for 14 days, this is day 6.  Surgeon said all went well but we have not yet received the path report.

I may be a "sissy" or have low pain tolerance but I would have to rethink this if given another opportunity.

Couple of questions:  (1) how do you deal with the constipation and pressure on the scrotal area when defecating and can since I am only sleeping about 2 hours at  a time (when drugs wear off) any suggestions there.

Got to go lay down now - the Old Sailor

Posted 8/19/2009 1:12 AM (GMT 0)
Sailor, never make apologies about pain. Every one has a different level of tolerance, and pain is a very subjective thing. I had open surgery, and it was rough for pain the whole 4 days I was in the hospital, abated some the first week at home, then progressively lessened over time.

The constipation issue, use lots of stool softeners, only use real laxatives on your doctors advise, that is what I was told.

The pressure on the catheter end, if it gets bad, ask for some ditropan, generic drug, cheap, will help ease that pressure feeling up there from the cath, and help if you have experienced any bladder spasms.

You are almost halfway through the 14 days, I know its tough, but it will help you heal better, sure that is what your doctor is thinking. If it makes you hurt any less, I was on one for 63 days after surgery. Long story.

Hope you feel better brother, when you get your pathology report from the surgery and its good and clean, the pain will be worth it to you.

Use your pain meds as needed, it will help your body heal faster and with less stress.

David in SC
Posted 8/19/2009 2:14 AM (GMT 0)

David, the Urologist did say that he felt the longer the catheter was in the better the outcome for incontinent and other problems. I am going to try to get the ditropan.  How in the world did you tolerate the cath for 63 days??

Someone suggested Miralax which is a very mild laxative - are you aware of it?

On Friday, the doctor is going to remove the bolster (sp)??  It feels like a big ball of cloth. Do you know what this is?

I do sincerely appreciate your positive attitude and willingness to listen and offer advice.  I'll keep you posted.  The Old Sailor.

Posted 8/19/2009 2:42 AM (GMT 0)

Hi Old Sailor,

I hope that the pain and discomfort that you are having this side of surgery gets better soon.  In the next few days you should be noticing some improvement.  In the mean time, use the pain meds if you must, keep with the stool softeners and the laxative at the ready.  Do whatever you need to do to be as comfortable as you can get.  I hope you have someone to help you with your recovery. 

Keep healing,

Dan 

Keep us posted with your stats when you get a chance.

Posted 8/19/2009 2:49 AM (GMT 0)
Old Sailor: I used Miralax started on Day 2 after surgery. It helped a lot. I was also on ditropan for bladder spasems. Both helped a great deal. I do hope you start feeling better. Walking also helped. If you have any other questions do not hesitate to ask. Welcome to the other side.


Jeff T
Posted 8/19/2009 2:58 AM (GMT 0)
Old Sailor I had open Surgery on the 27 Aug I was very lucky on the pain side walking without pain on day 5 but this seems to be PC nobody is the same My doctor had the same feelings about the catheter I had mine in for 12 days I am nearly continent after 12 days (first pad free day yesterday) so I have to agree with my doctor about the catheter I hope you recovery is has good and quick
Posted 8/19/2009 11:48 AM (GMT 0)
Greetings, Old Sailor.  Glad things are going fairly well - it will only get better from this point forward.  I took those stool softeners for about a month after surgery.  You want to be able to go without too much strain.  As others have said, pain is different for everybody.  I am one not to even want to take an advil but my nurse wife convinced me that I needed to manage my pain.  There is no need to suffer when there are drugs available to help.  I did get off the prescription pain meds fairly quickly but took the non prescription ones for some time and they worked.  Don't be afraid to take the meds.  We'll look forward to your membership in the zero club in a few weeks.  Let us know when you get your path report - we'll look forward to hearing of a good one. David

Posted 8/19/2009 7:53 PM (GMT 0)

Feeling a little better today but catheter still bothering me quite a bit.I have been having a little bit of blood spotting coming out end of penis around catheter (no pain) during defecation.  No blood clots in urine which has been clear and plentiful from the get go!!  Also no bladder spasms.   Has anyone else had this experience with blood spotting on pressure??The Old Sailor

Posted 8/20/2009 1:26 AM (GMT 0)
This is all very normal. If your pain permits, start moving around. It helps the healing process and allows you to take your mind away from discomfort. Best of luck.
Posted 8/20/2009 2:24 AM (GMT 0)
Welcome Old Sailor, your in a great place for help.

I too had my catheter in for 14 days and now don't regret it. However during that time I was very uncomfortable. In the end though, I think it is helping me get control faster. There is a comment in another post that is very true,"by the time you get used to the catheter, its time to get it out". Walk, and walk some more. Do as much as you can handle, it really helps. Everything you have experienced, I did too. You're doing great, just keep it up. I would walk down my street at all hours, usually in shorts with the tube hanging out the leg and the bag hooked on my waist band. I didn't want to take the time to switch to the leg bag and its too hot to have plastic that close to the skin. Who cares what the neighbors think, you're a survivor. Besides its a great conversation starter.

Craig
Posted 8/20/2009 2:35 AM (GMT 0)

 Don't know if I could ever get used to having a catheter in place. Right now 7 down and 7 to go!!

 I have been walking quite a bit and it definitely helps with the catheter pressure, so does stretching out in a lazy boy or on the bed.  Sitting in kitchen chair is not comfortable at all.

Have only been able to sleep about 2 hours at a time because of pain return and discomfort.  Taking one percoset about every six hours.

Posted 8/20/2009 3:05 AM (GMT 0)
Like everyone else has said, pain is an individual thing. Take the drugs if you need to, thats what they're for. I wanted to get off them as soon as possible because of the constipation and my pain really wasn't too bad. I was able to control it mostly with Tylenol. For sleep I would take Tylenol PM. I wouldn't mix that with the percoset though.

Don't forget to drink a lot of water, too. This helps both with the pain and the bladder/catheter.


Craig
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