Questions about cancer diagnosis

Margie- your info really scares me. I went from being fairly optimistic to really scared.

I'm getting a second opinon. Just off the phone with John's Hopkins. Have an appt. nov. 1 with Dr. Burnett. He supposed to be one of the best.

Dear Anxiety out the Roof:

I hear you. I lost 20 lbs just freting over the diagnosis before and after the biopsy. Do some reading. Since you are going to Hopkins get Walsh's book, Surviving Prostate Cancer. Amazon has it. It is in plain English and provides a lot of good info and some reassurance as well.

I think you will like Burnett. He seems very personable and friendly. Also take advantage of the Hopkins Urology website. Plug your biopsy numbers into the Partin Table. Yes, the same Alan Partin that Chris R used as his surgeon. He is the current head of the urology department. See where your Gleason, PSA and staging put you for chances of later problems because of the Pca may have escaped the prostate gland. I think you will find that the numbers in your case are pretty reassuring that your disease is organ confined and has not moved to the lymph or seminal vesicles.

Use your stats as well when visiting the Sloan Kettering Hospital site. They have a nomogram that does nearly the same thing but goes a bit further with some long range prediction of reoccurrance. Someone sarcastically said on a site that the success of modern prostate treatment and long term cures are built on the foundation of thousands of GS-6, low PSA and non-palpable men.

Don't do what I did and read all the darn articles on treatments because as Walsh points out in his book, so many of those studies were done in the PRE PSA era when men were diagnosed and treated after they had palpable prostate lumps or worse were complaining of classic Pca symptoms. Thankfully, we don't live in that era right now.

Hopkins put out an excellent paper within the last 3 years on surgical outcomes of Gleason 6, path T2 with PSA < 10 and as Chris R also stated the results of that study were outstanding. Recurrances were in percentages below 1 percent. The article is in the NIH library of archived articles and you might be able to download it. Many articles are by subscription only.

Again, use the nomograms to your advantage and look for all the positive articles and statements made by physicians treating this disease. Hope your Hopkins experience is as satisfying as mine was.

Mike S

Here is the number to Johns Hopkins.  410-955-6100.  Tell them you want to schedule an appt. to see Dr. Partin.

Read these articles, they will make you feel better.

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

This article is why I went to Johns Hopkins.  I gambled that if I stayed G6 that I should fare just as well as everyone in this study.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2603620/

Shorter version of same article.   Pay special attention to the part about "no deaths or distant metastasis" occured in any patient up to 15 years from treatment.

http://www.medicalnewstoday.com/articles/106167.php

This was a multi institutional study.

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confid=65&abstractid=33544

Anyway,  tell your uro. that you want your biopsy slides sent to Johns Hopkins for a second opinion.  After you get that back call and make an appt. to see Dr. Partin.

The only anexity you should have is a little concern about being upgraded after surgery.  We all had to go through that.  From the results of your biopsy you are off to a good start. 

I could not find any other published stats. about G6 survival results other then Johns Hopkins.  I am sure other places fare just as well.  I went to Johns Hopkins becuase if I stayed G6 then I would have a good idea of what my future held as far as prostate cancer was concerned.  It is not like other cancers.  It can be very benign in behavior or it can be very aggressive.  You will drive yourself nuts reading about all of the cases posted here and on other forums.  Just remember everyone is different, you included.

If you stay G6 after surgery, then in my opinion you are out of the woods.  You have less of a chance of dying from prostate cancer then your friends who still have their prostates, because you got rid of yours.  At 61 there are many other things on the list that might get you in the next 20 years and many of them you can control.  PCa won't be one of them.

I'm 44. I was Dx. at 42. I've got a long haul in front of me.  If I can stay clear for the next 20 years then I will consider myself cured.  Not many studies go beyond 20 years so who knows even what G6 will do after that amount of time.

Also, understand the G6 today is different then G6 from before 2005.  It is the least aggressive PCa you can have.  The scoring system was revised in 2005.  So the studies you read about from before on G6 survival might have had people who would not have been G6 today, so the survival might be better for G6 today then before 2005.  It was pretty good then anyway.  J.H. uses the post 2005 guidelines.

P.S.  I went with Partin because he was one of surgeons that had patients in the above studies.  He contributed to the good results.  I am sure all of their surgeons are held to the same standards at surgery.

 

Post Edited (ChrisR) : 10/1/2010 1:13:27 PM (GMT-6)

ChrisR said...
MikeS24,

My surgery was 58 min. No transfusion was required either. My wife thought Partin was coming out to give her and update after 1 hour, but it was to say I was done and they had gift rapped me and she could pick me up at the front desk on the way out. LOL I was discharged the next day as well and beside what they give you in the hospital the only pain killers I had was Tylenol and not for that long either. I went back to work a week later. I also took my own cath. out. J.H. tells you they want you to do it. I have had no ED issues but it did take about 2 years to become completely pad free. I really did not work on kegels that hard though.

thanks ChrisR- you have been more comfort than you can imagine.

Chris R and Anxiety out the Roof:

Thanks for the reference to that paper again. I have a hard copy but you found it again on line. When I spoke to Dr. Carter about that study he told me they were publishing a newer one soon with even more supportive data.

Anxiety: I thought you had an appointment with Dr. Burnett? As Chris R mentioned you can see if Partin will be available. However, they are busy and getting an appointment is sometimes a bit difficult. Also you don't have to have surgery with the person you have the initial appointment with. If you are leaning toward open surgery you will want to make sure you are picking the doctor who does them. Partin, Carter and Walsh do open surgery. It appears that Burnett does open surgery. I believe Shaffer, Han and Pavlovich do robotic . Han does both. Pavlovich works out at Bayview Hopkins facility.

Let me know if you need any other information. Between Chris R and myself, we can cover a lot of ground.

Mike/Chris/Others: As between very experienced surgeons at the same facility who do the same type of surgery (open, for example), how do you go about selecting? How do you go about selecting, say, Dr. Partin versus Dr. Carter versus Dr. Walsh?

Also, is it true that Hopkins tells its patients not to use the ultra-sensitive psa test, after surgery?  Did they give you a reason?  Did you guys who went there adhere to that recommendation?

Post Edited (medved) : 10/1/2010 4:38:08 PM (GMT-6)

I read the paper a few moments ago. From the paper, it is interesting to see Johns Hopkins' definition of candidates suitable for AS:

"We also determined the number of men who would be considered to be the safest candidates for expectant management with curative intent (EMCI). As described by Warlick et al, men 65 years or older with clinical T1c disease, PSA density <0.15 ng/mL/cm3, and favorable biopsy characteristics per the Epstein criteria (biopsy Gleason score ≤6, no more than 2 positive cores, and no more than 50% involvement of any single core)14 are the safest candidates for EMCI.15 Only 35 men (1.4%) in our patient cohort met all of these criteria."

It is also interesting that they exclude patients with tertiary Gleason grade 4 in the pathology report, which is what I had. They also exclude patients that had been upstage in the post surgery pathology report.

"How do you go about selecting, say, Dr. Partin versus Dr. Carter versus Dr. Walsh?"

You don't select them...They select you..These guys usually have gatekeepers who are expert in the pre-selection process..

Fairwind, Chris R and others:

 My first appointment was with Schaffer and scheduled for 4 weeks after my initial PSA test scare.  I called Hopkins Urology back again and found that Carter was free sooner.  So, you really do get to pick a doctor.  Nobody to my knowledge is prescreened or told to go elsewhere.  People come from all over the world to visit Hopkins for consults or surgery.  Partin, Carter, Walsh, and a few others all have 3,000+ prostatectomies under their belts.  So it is not a crap shoot when picking one of the surgeons.   A lot of my insight about Hopkins comes from personally knowing people who work at the hospital.  The "Hopkins way" is indicated by the studies they do, the success they have with procedures, the research they conduct and the successful treatments performed.  We in the US are lucky to have Hopkins, Cleveland Clinic, Mayo, UCLA Med Center, Boston and a few others as academic centers of excelence.

Funny, but my settling in on having H. Ballentine Carter do my surgery was not his bio or the video clips he did for the Hopkins website, it came from Dr. Peter Pinto a one time resident at Hopkins who is now at the National Institute of Health in Bethesda, MD.  A colleague told me to call Pinto because he does Tesla 3 MRI imaging to determine spread of Pc tumors and as part of expectant management.  I told Pinto I was not interested in expectant management and said I was leaning toward open RP with Carter at Hopkins.  He said why not wait and get Walsh to do it.  Not wanting to wait, Pinto then said, to go with Carter and no matter how long it takes, it isworth it to employ his outstanding surgical skills.

Cost and Insurance:  Just as Chirs R experienced, the high end surgeons at Hopkins are not Blue Cross participants.  You do have to pay up front.  My 7/2010 surgical fee was 6,200.  If I opted for Schaffer who does robotic it would have been 11,000.  Still fighting B Cross to get something back from the surgical fee.  The rest was nearly covered by BC/BS for the hospital stay and anasthesia, etc.  Oddly, Schaffer became backup assistant surgeon so he got a piece of the B Cross payment.   So as Chris R said, to get a great path report as I did as well was worth every penny.  You can read some horror stories on various websites as to the botch job some inexperienced surgeons have done. 

I have heard some people say negative things about Hopkins.  I suppose it turns to economic class warfare when faced with having to pay for the surgeon up front and in full.  However, one woman commenting on another website said it would be worth taking a second mortgage to pay for the surgeon if he or she were that good, especially if you are still working and expect to for a number of years.  I can earn back the 6,200 in short order but not if I remain ill.    What is really funny is that Pinto would have done a robotic RP on me for absolute NO COST AT ALL.  That is what NIH is all about.  Research and study and practice so they, as part of a federal health care research division do not charge for procedures.  I still opted to pay and go to Hopkins.  I thought they were that good.

So, Anxiety (I wish you had a better name!!!)  Both Chris R and me could not recommend Hopkins with any more enthusiasm than we are doing now, short of driving you there ourselves.  The studies speak for themselves.  Walsh was the "father" of nerve sparing surgery (and yes, he does very few surgical procedures these days so the wait is rather long) and Partin created the Partin Tables a mainstay of nearly every urologist's bag of tools.  Carter did the famous longitudinal study and rising PSA research.  Epstein, the pathologist is world renound with folks sending him samples to examine from all over the planet.  Han created a remarkable set of prognosis tables.   That kind of stuff is not happening in every hospital in the country.  Lucky it is happening somewhere and that somewhere is close to a major population center and fairly easily accessible.

By all accounts you have a very treatable cancer that, God willing, will provide you with a pathology report that makes you cry with joy.  It did for me.  Carter told me I would have to find something else to worry about.   Plug your data into the Hopkins Urology website Partin Tables and get some reassurance.  Do the same with the nomograms at Sloan Ketterings website.  Do your appointments at Hopkins and put your trust in their hands.  Try not to freak out.  Eat well, rest and put the rest in God's hands.  I will pray for you and everyone else as I do. 

Mike S

Anx, I traveled almost that far for my surgery. My Uro admitted to having done only 40 robotic surgeries, so I knew I would have to leave him for a more experienced surgeon, especially since I was a G7. If your Uro has done 3,000 surgeries, I would think he has more experience than necessary to take care of you.

I repeat my earlier suggestion for you to try to relax and slow down with the decision making. All PCa treatments have potential serious side effects that you have to consider carefully. AS is something you should really look into with your numbers. Good luck with your research, your decision making, and your PCa.

peace

Anx:

WE STAYED in an apartment on the hospital campus, provided by Ford Hospital to patients for a reasonable fee. We actually stayed there a week until the catheter was removed (and then 1 more day).

The hospital is 2 1/2 hours from my house.

So, perhaps there is some housing available?

Perhaps provided by the hospital? Ask them.

Mel

Anxiety: Patients coming to Hopkins are advised to stay at local hotels in the Baltimore area. Most are only a few minutes away from the hospital. Yes, it seems rather odd to be discharged and proceed to a hotel to recooperate from surgery. Living only a half hour away from Hopkins, I did not think abou that issue. However, with my surgery, when I went home, the only thing I did for the first few days was drink water like a fish, empty my catheter and take a shower each day. I could have done those things in an average hotel room. Food: Well, you have room service (assuming you don't stay at a Motel 6) and if you plan ahead, you can bring food with you, especially things like snacks or favorite items that room service does not have. So, you might want to be in a hotel that provides a small refrigerator in each room. However, you won't feel much like eating upon discharge and you will be somewhat restricted in food items for the first day or so. Remembeing that it was about 2 days since eating after my surgery, I was told to take it very slowly in reintroducing solid food. They will tell you what to do and the discharge paperwork will spell all of that out.

What city are you coming from? I seems like you are living in Philadelphia if you have a uro who has done 3000 RP surgical procedures. If that is the case and you like the urologist you have been seeing, as Red Nighthalk said, slow down a bit and do some reading such as the Walsh book. It will provide you with questions to ask any surgeon. I would keep my appointment with Burnett and do a comparison with what he says and your own urologist. As I got from the Walsh book, ask about how many patients your surgeon treats have positive margins? How many recover urinary and ED issues. Lots more questions to ask. Those were just 2 of many. Great surgeons keep statistics on all the patients they treat and can tell you how successful they are in treating Pca. You might even schedule an appointment with a radiologist to ask about that path of treatment. For me surgery was the only option I wanted to consider because: 1, I wanted the cancer out of my body and 2, I did not like the long term side effects of radiation therapy. I have had family experience with radiation for prostate cancer and both my relatives had nasty lingering side effects that impacted on daily living.

Let me know if you need any other Baltimore resources. I can try to find them for you.

Mike