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cas1955
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 7/2/2009 6:29 PM (GMT -6)   
OK, I just found out I am in the club.  I have read Dr Walsh's book from John Hopkins and I am convinced that open radical is for me.  I live in the DFW area.  Does anyone know a doctor in this area who you would recommend?  Or, should I go to John Hopkins or .......
 
PSA 4.1
Gleason 3+3 = 6
Found only one area with cancer from the biopsy
Age 54
 
Also, I got a raging infection/fever when the biopsy was done.  Fever went to 103.7.  Is that normal?

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25372
   Posted 7/2/2009 6:38 PM (GMT -6)   
Welcom to HW, cas1955. Sorry you have to be here, but this is a great place to be. You will be among friends and brothers of the PC soon enough.

I read Walsh's book about a year before my dx, have a lot of respect for him and his views, but there are many other good books on the subject.

The fever/infection would not be considered normal in direct association with the biopsy, but we are all different. What did you doctor say, the one that did the biopsy, did he make a connection?

With you PSA, your pre-treatment Gleason, and I assume you mean they only found one core of cancer, on the surface, it looks like you have at least for now, a low grade dose of Prostate Cancer. Perhaps you can post your full stats like the others, it helps us in directing you to specific resources or advice.

I am a vet of open surgery, and for me, it was the right choice, and because of surgical difficulties that were not encountered prior, it ended up being the right choice for the surgeon too.

I think we got some members in your area that could probably give you a name or two.

welcome again.

David in South Carolina, Land of Gov. Sanford who cheats on his wife but wants to fall back in love with her despite calling his girlfriend in Argintina his soul mate. Just had to say all that, lol.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10, 6/9 .11, July 13 - meet with radiation oncologist
 
 


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 7/2/2009 6:43 PM (GMT -6)   
CAS,
Welcome to the club that no one wants to be in. You will get experienced responses here. Regarding your decision, it is great that you read Dr. Walsh's book. Keep in mind that he is of the generation of docs that founded, perfected and performed many open surgeries so many believe his bias is in that direction. The next generation of surgeons have also perfected laproscopic and robotic techniques. The key, as Doctor Walsh states in his book is to find a surgeon with alot of experience in whatever technique he/she uses. Regarding where to go, there are many excellent centers around the country and we all went through the agony of deciding who and where. I ultimately wanted to be near home if there was a good surgeon locally, which there was. Some people travel to far from home places. One thing to consider is being close to where the surgery is performed during the recovery period.I have a friend who went out of state for the procedure and develped an infection when he got home. It created alot of tension for him and his family and the local docs did not know the history etc. I am certain that there are numerous excellent and experienced surgeons in your area. Ask your primary care doc and start from there.
Good luck...once you reseach and make these 2 decisions, who and where, things will calm down a bit in your head.
Ted
Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


CapnLarry
Regular Member


Date Joined Apr 2009
Total Posts : 75
   Posted 7/2/2009 7:02 PM (GMT -6)   
Let me add my unhappy welcome.

I went with laparoscopic/robotic, but could easily have gone with open. You will hear it time and again that the skill and experience of the practitioner you choose will trump the specific technology he (I assume gender) employs. All of the mainstream treatment modalities have roughly the same survival rates.

Dr Scardino's book has a memorable line, which I quote from memory, that if surgery is the best option for you, but you can only find mediocre surgeons but really good radiation guys (for example), go with the really good radiation guys (or whatever the choice is).

If you go with open, the top of the learning curve seems to come about 350-500 operations, no less than one per week. Remember that some surgeons don't learn from their mistakes, so quantity is no guarantee of quality, but inexperience increases the odds of problems. Ask the surgeon about how he tracks his outcomes, and what he's learning as he goes. If he's not still learning, watch out. My surgeon wants a fax of every followup PSA test.

Again, welcome. Breathe deep. You almost certainly have time to make the decision come out the way you want it to--don't rush it.
Larry Shick
Personal homepage incl. PCa story: www.sv-moira.com.
01/09: Diagnosed (age 60) biopsy PSA 4.4, free PSA 9%, T2c stage, Gleason 7 (3+4), 7 of 14 cores; 6'2", 200 lbs.
03/09: Robotic surgery (Dr. Kawachi, City of Hope) 47 gms, 10% involved, staging/Gleason unchanged (pT2cNXMX), margins clear, no ECE/sem ves involvement, fully continent from day 1, some success w/Viagra 50mg/day.
Followup: 05/09 0.006


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4203
   Posted 7/2/2009 7:35 PM (GMT -6)   
Cas,
With a G6 and only one core you are making a pretty rash decision without getting more information. The Prostate Cancer Research Institute recommends "no immediate treatment" for this type of cancer. There is a very good chance that it could be indolant and never hurt you.
This type of PC is often overtreated with side affects that can affect the rest of your life.
Get a 2nd opinion from a good prostate oncologist as it may save you a lot of grief.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DX BPH and continue to get biopsies yearly. Positive Biopsy in 10-08, 2 cores of 25, G6 less than 5%. Scheduled Surgery as recommended.

2nd Opinion from Dr Sholtz, an Oncologist said DX wrong, path shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G 4+3 approx 2.5cm diameter.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and burining urination. Daily activities resumed day after implants.

Scheduled for 5 weeks IMRT in July

JohnT


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 7/2/2009 11:55 PM (GMT -6)   
Hi Cas,

I'd like to add my welcome too. Based on your biopsy results, you should have some number of months to make your final decision. My two cents worth is to take a deep breath and do some more studying.

At you age, if you decide to be treated, you'd like to go for a treatment that has a good track record for curative results.

As others have suggested, you may wish to keep reading and find a couple of more health care professionals to interview about your biopsy results and your personal leanings.

Kind regards,

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


cas1955
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 7/3/2009 8:42 AM (GMT -6)   

Thanks to everyone for replying.  Being new to this, I want to let you know how comforting it is to hear from other men who have the same thoughts, fears, anger, denial..... as I do.  I must say that I am terrified but confident that things will be ok.

I mentioned my infection problem because I have wondered if it is related to my one biopsy sample out of 12 coming back positive.  It appears that I have had prostatitis and that when the biopsy was done, the infection got out.  I am now on antibiotics and they seem to help.  Should I wait and see how the antibiotics work and then decide?  Should I have another set of biopsies done or have the original ones re-examined?

I have an appt to see my urologist at the end of this month (23rd).  I plan on asking him all these questions and more but any insight would be appreciated.  This time I plan on not being in shock when I see him as I was the last time when he told me I have PC.  I am also talking to a surgeon on 7/13.  I was referred to him by my Urologist for the open radical prost.

Does anyone know about the Athermal technique or the AIR process being done in New Jersey?


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/3/2009 9:04 AM (GMT -6)   

Welcome to the jungle (new person of PCa world), you mentioned "new to the game".

Exactly- it can be like a game, just go and get 4+ opinions from different types of specialists on PCa, then compare, review, reflect on what is told to you (along with your questions you should consider asking) or tape the interviews, as you are actually hiring someone and they are selling you a service. Kind of like auto repairs and bringing your car into an unknown shop. It is alot about money today, altruistic and virtue might be a by-product along the way as a bonus, but it is the selling of a modality/treatment as job #1.

My own experience with 8+ opinions from various types of docs, I saw it clearly and it included: huge bias, agendas, even lying or heavy duty b.s. from 1 in particular, and along with some sound reasonable and frankness with some others, some are wonderful and some are not, the jungle....you get to try and figure that out.

Sure Walsh's book is good, I read it too along with many others. Suggest you read Dr. Strums book (asap) A Primer on Prostate Cancer-The Empowered Patients Guide. As John T has correctly mentioned you might end up doing alot more home work and thinking about treatment at this juncture. My brother has basically the same parameters you are mentioning, has done nothing to treat at this time, psa never went up in 4-5 yrs. now. He can still do whatever treatment and is totally enjoying being a normal man. You risk continency, impotency and other factors....that are totally real. Ok, I hear the voices that you risk death by not jumping into surgery tommorrow morning.....also there is never a guarantee of cure with PCa at any stage (your odds would be best with low parameters, this is also why Walsh does not do surgery on Gleason 7 and higher patients). Hey it is your call don't leave it to the first sales pitch you hear, see an oncologist get his 2 cents also.

There are patients whom fail treatment on PCa, although looking clear for 5-10 yrs even, after treatment....thus...the non-guarantee of this jungle. Just learn all you can before hand is decent advice.  Best to you in whatever you decide or best to you in whatever doc xyz prescribes.

Survivor(2002)-7 yrs.+ so far-(total urinary blockage-emergency room)= bPsa 46.7  12/12 cores all 75-95% PCa, gleasons found 7,8,9's; ct and bone scans showing clear (doesn't mean clear for certainty)....unique protocols and hormone therapies so far working well.

 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 7/3/2009 9:33 AM (GMT -6)   

Greetings, Cas1955.  First, let me welcome you to this group.  Although all of us would prefer to be somewhere else, you are among friends who will always shoot straight with you.  As is evident, we don't all agree on what to do or what is best but that is ok - you need to know what all the options are.  Also, keep in mind that while we have informed opinions based on very personal experiences, we are not medical professionals (at least most of us aren't).  So for what it's worth, here are my 2 cents.

I was very close to your age (I had been 55 for about 2 months).  I also had a fairly low PSA at 3.2.  My urologist told me I had plenty of time to make a decision and in fact whatever I chose I couldn't do anything for at least 6 weeks after the biopsy because of the healing needed after the biopsy.  While I haven't heard of an infection, I could definitely see how someone could get one from the biopsy.  I can't remember for sure, but I think my doc may have given me an antibiotic before the procedure as a preventive measure. 

While you have time and may be able to do what is called "watchful waiting" that is something that you will have to decide.  For me, I couldn't stand the thought of having cancer in my body and not doing anything about it.  I realize some guys can do that, but I couldn't.  It doesn't happen to everybody, but in my case, after my surgery the pathology was upgraded to a more agressive 4 + 3 rather than the 3 + 3 that was indicated from the biopsy.  I was glad that I had made the decision to have the surgery and get it out of there. 

As to open or robotic, I agree with those who have said go with the doctor you have confidence in and what his specialty is.  In my case, my urologist referred me to a surgeon who did open surgeries.  I established a rapport with him and came to have great confidence in him.  He told me that he thought robotic was the wave of the future and there was a lot of good things happening on that front, but that he wasn't there yet.  He is in his late 40s and said that he anticipated in the future he would be doing mainly robotic surgeries, but for him, just not yet.  I appreciated his openness and honesty.  He indicated that he liked to get in to the surgery and be able to feel around and look around. In fact during my surgery he marked a spot, did the prostatectomy, went back to the spot and took it out and sent it to the lab.  It turned out to be benign, but I was glad he had an opportunity to look around.

I also appreciated about him the fact that he told me right up front that he monitored his patients for ED and incontinence.  He told me to expect issues for 2 years.  As it turned out, I haven't had a lot of issues with either.  I have been continent right from the start after catheter removal.  I use the ADC version of cialis and levitra but don't have real issues with ED. 

My urologist - not my surgeon - was the one who recommended surgery for me.  He said at my age I was better off getting rid of the cancer and surgery was the best way to insure you get rid of it.  There are other effective treatments as you will hear about here, but at my age he recommended I have surgery and get rid of it.  I then went to a surgeon and learned more about the surgery. 

My surgeon calls me his star patient because I have done better than most of his other patients and he attributes most of my good progress to the fact that I am relatively young.  I am convinced that for me, I made the right choice.  One other factor that I considered as I made my decision for surgery was the fact that you can have surgery and then follow-up radiation if needed but it doesn't work the other way.  You can't have radiation and then take out the prostate (some have tried but there are some pretty horrible stories about the results).  I just wanted to take the route that gave me the most long-term options.

Sorry you have to be here but trust you will find help here.  I appreciate all my brothers - and sisters - on this board even if we don't always agree.  Please keep us posted on how things are going.  David


Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 7/3/2009 1:35 PM (GMT -6)   
Also pretty close to your numbers, I put it off for a year than concluded it was going happen at some point, so just get it over with. Went with davinci, and I am about 10 days out and feel amazingly good except for the urinary and ed issues, but we improve everyday. Biggest thing to keep in mind is there is no rush, if it is not a good time or you are undecided just wait. Also go with the best surgeon possible, don't just automatically go with your Uros guy, check around.
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings.
DaVinci on 6/24/09  UCI Med Center  Dr Ahlering, long surgery based on size and location
Final was 5% one side all clear, but had a huge 90 grm prostate
Now we work on pee control, ok at night but sitting is a big problem.

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