making progress-- but important question

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compiler
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Date Joined Nov 2009
Total Posts : 7269
   Posted 12/4/2009 2:22 PM (GMT -6)   
Well, after some phone tag, I finally got in touch with the scheduler for the so-called Umich "team." However it is basically an appointment on Monday, 12/14, with a surgery guy (I had her switch me to David Wood, as he is one of the names that seems to be coming up as an expert in the Da Vinci surgery), and then a radiation guy (I don't have the name yet).
 
Frankly, I am disappointed. I expected a TEAM. That is, a HT expert and especially a general urological oncologist expert. I'm thinking of calling them back and asking them to schedule me also with this kind of expert. I asked when we spoke but she seemed to indicate that at this time it wasn't necessary. Well, I'm thinking, then when is it necessary? It would seem I could use the opinion of an expert BEFORE making the big treatment decision.  I fully expect the surgery guy to push surgery (at least with my report) and the radiation guy to push his/her discipline (but maybe not).
 
On the good side, the scheduler was VERY nice and was willing to copy and paste my biopsy report into a WORD document and send it to me via email. So I should shortly have an electronic version. She is also making sure to send me the written report. Additionally, she is sending me the form to send my slides elsewhere for a second reading. I do plan to send it to Ford Hospital (Dr. Menon) at least. As I said elsewhere, I think they send it to Hopkins for another read. If not, I may request they send it to one of the places mentioned (Bostwyck or wherever).
 
I also have a call into Dr. Menon. I think they may have an opening on Wednesday, 12/16. So at least things will be moving on 12/14 and 12/16.
 
Folks, I realize the advice has been to sit back and examine the options. I am doing that. But I am also far from sanguine given my biopsy report. I am nervous about the 4+3. When I go to Umich I will also be asking about the Color Doppler and MRI and other tests to help confirm/deny that the cancer is not out of the organ.
 
I've appreciated this Board TREMENDOUSLY. The internet is a wonderful source of support and INFORMATION. In fact, between all the sites and my books, I am stopping for a day or two because I am getting information overload!
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

2 cores were 3+3 (I have to get the percentages) on one side

2 cores are 4+3 (5%)

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 12/4/2009 3:27 PM (GMT -6)   
Mel,
When I was diagnosed with my prostate cancer I did three in person visits with three different treatment options and then two phone interviews. I'm not sure if you can get a team approach unless you are at a major cancer center. I talked to regular surgeon (in person), DaVinci Surgeon (in Person), Proton Radiation (Via Phone), Seed Implant (in person), HIFU (phone). I settled on the Davinci. Pre surgery I had 3 cores at 4+3 (7) but after surgery and the complete path report I was slightly downgraded to an overall Gleason of 3+4 (7). So don't fret to much. I know that is hard to do because I tend to worry also!

Larry
Age 55 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
Final Path report:
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0


jxmuldoon
Regular Member


Date Joined Nov 2009
Total Posts : 43
   Posted 12/4/2009 3:58 PM (GMT -6)   
Please do let us know your sense of the perceived reliability of the various diagnostic devices, particularly color doppler.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 12/4/2009 4:32 PM (GMT -6)   
OK, HERE IS AN UPDATE:
 
I called back and the scheduler this time totally agreed with my request to be seen by a good medical urological oncologist. Here is my schedule for Monday the 14th:
 
8:30 AM -- surgeon -- Dr. David Wood
 
10:00 AM -- radiologist -- Dr. Hamstra
 
1:00 PM -- oncologist -- Dr. Hussain
 
The first and last person have come up as excellent doctors.
 
I will certainly be compiling questions to ask (you all know me well enough to count on that!). Color Doppler is already on the list. I half expect them to dismiss that technology, but maybe not.
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

2 cores were 3+3 (I have to get the percentages) on one side

2 cores are 4+3 (5%)

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 


coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 12/4/2009 5:36 PM (GMT -6)   
Compiler, I understand your concern with the "team" approach. My doctor is part of a "Team". Like you, I expected that the first doctor I met with would "push" his specialty on me. During my first post biopsy consultation, the doctor spoke to me about the various treatment options. He was very open and answered all of my questions. He was clear he woud let me "pick my poison" so to speak but offer his professional opinion on what he thought would offer me the best chance for success. This doctor's specialty was Cryo (spelling?) and open RP. When I told him I was leaning toward the Da Vinci Robot, he confirmed he felt that was the best option for me. He referred me to the Da Vinci specialist in practice . I then met with that doctor. Discussed pros / cons, other options, the doctor's experience / skill, outcomes etc. I felt good with my decision so went with it.
Age 51
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
da Vinci Prostatectomy 8/1/08
No issues with incontinence since day 1 after catheter removal
Mild ED. Levitra works well for me
PSA 0.00 at one year post op


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/4/2009 6:05 PM (GMT -6)   
For all the talk about doctor's pushing their specialties, I never experienced any of that. My uro/surgeon was as open about available options as one could expect. The radiation doctors were the same way. I liked how when I needed SRT, the radiation oncologist from one practiced consulted with my uro, to make sure she understood the scope of my surgery, and what kind of issues and problems I had up to that point. My uro has talked to her several times since, to make sure that I was doing ok through that process, and was on standby in case he was needed to fix anything.

Perhaps there are doctors that are so biased and pushy, but with all my maladies, operations, and treatments over the years, never ran into one of those type. It also helps if you, as the patient, are informed to start with, and in touch with your ailments, so that you can communicate properly and fully to the doctors. THey are not mind readers, the more you can tell them exactly how you are feeling, or reacting to some treatment, the easier it for them to understand and make adjustments as needed.

I feel like we should put together a statement about patient responsibilities for all our new friends in this process.

Sounds like, Mel, you got a good panel of doctors to talk to. Take good notes, or tape record (though you have to disclose if you are taping). THen you can review it all after. Be even better if you have someone to go with you, i.e. spouse or friend, because an extra set of eyes and ears is useful.

I always see my doctors with a written check list in my hand, so that I dont fumble and forget things, and I dont let the doctor go till we have gone through all my questions and concerns.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/4/2009 7:29 PM (GMT -6)   
Why didn't you have your slides sent to an expert to begin with???? It might be real good to tell your uro-doc up front "I want my biopsy slides sent to...." (Bostwick, Epstein, Oppenheimer, Grignon) or some of the few known patho-doc experts. Why waste time on some local types that are still learning to become experts? (of course as close to as what is supposedly experts, but here it is crucial your whole treatment is based upon this data).

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/4/2009 10:43 PM (GMT -6)   
I certainly hope no one gets the idea that U of M cancer center is scond rate. They are a major center in this area. I'm nit sure why everyone wants to send their slides off to some more major cancer center, where some pathologist not known by anyone reads them.

Yes, we have seen some gleason scores change, by maybe 1 point. Some up, some down, but in the overall scheme of things, not going to effect strategy very much. Gleason scoring is somewat subjective, so one pathologist may feel it looks more like a 7 than a 6, or more like a six than a seven, but really, what different approaches will we take because of it.

By the way Mel, I am sure you will be impressed with Dr. Hussein. She is top notch.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/4/2009 10:52 PM (GMT -6)   
Mel,
I apologize for some of the condescending remarks here. While the pathologists that zufus lists are well known for their work in prostate cancer, there are many great pathologists who do a great job. My slides were sent to Epstein, who did not change the original analysis done at the City of Hope. I did get some peace of mind in doing the second check, but I also received the same information as I did before.

You have a great plan in place, so hang in there and as I always try to do ~ stay positive. A positive mindset will be very helpful...

Tony
Prostate Cancer Forum Co-Moderator


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 12/5/2009 12:28 AM (GMT -6)   
A second opinion is only any good if it agrees with the first one if it is different which one do you go with or do you get a third opinion and so on
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms lost one nerve bundle
Gleason upgraded to 3+3 Tumour not close to prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
First PSA Nov 2009 was 0.06 Continence 99% occasional stress dribbles no ED from first day after catheter removed


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/5/2009 7:36 AM (GMT -6)   
All well and good U of M is very good not saying their pathology guy(s) are all that bad either.
When you find out alot more about pathology, you will understand why you want the few experts in this arena looking at your biopsy slides(even if it is second opinion). Is is a life long art to become one of these few experts, it is not simply put those slides under a microscope and the cells hold up a flag with a gleason score on it (LOL). Probably the majority of pathologists would have a hard time telling you what type of PCa cancer you even have (12-14 variants) have been found thanks to those select patho-docs whom found such. Would it be important to know if you have a variant form of PCa??? They do not all respond the same, which is now known.

I have witnessed other patients(various forums over the years) whom had their slides re-read as per in Strums books, too. Their scores and stats came back (usually) higher in gleasons or other information 'perinueral invasion' and such. Sometimes it was a lower gleasons score. So, if one is analyzing all this data as to nomograms, Partin tables, Bluestein and such.....it could change everything and maybe this is just that important. Seems Dr. Strum and other leading PCa people say it is worthy. Distance has nothing to do with this parameter., unless you personally believe so.

My guess is the local patho-docs most likely spend alot of time analyzing all kinds of cancers and often, these other (reknown) experts specialize in PCa although they may do others. There are only a handful of these types that are highly recommended, I believe it is with good reasons.

But, hey we can all do our own thing,
 

Post Edited (zufus) : 12/5/2009 6:01:13 AM (GMT-7)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/5/2009 1:38 PM (GMT -6)   
While they may change a pathology, changing a Gleason, or other information won't necessarily change a treatment option. If Compiler had his Gleason upgraded to 8 or 9, per se, there would still not be enough information to change starting with a local therapy of some kind. His pathology is clearly one that will not benefit from active surveillance.

Also if you want a pathology read by another pathologist, I would ask the office of the new pathologist to arrange getting your slides. Telling your doctor that you want him to send the slides to another pathologist isn't the best way to arrange it. You have to have the new pathologists confirm your insurance coverage, and they can contact your doctors office and make all the arrangements to get the slides. That's how Epstein did it for me.

Tony
Prostate Cancer Forum Co-Moderator

Post Edited (TC-LasVegas) : 12/5/2009 11:47:16 AM (GMT-7)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/5/2009 4:14 PM (GMT -6)   
TC- All good brother could look to discuss the first reply sentence(above thread) as that is always debatable stuff, but will not debate either side of that and say Merry Xmas to you and it is all about the X and brotherhood. Arranging the slides to be sent as you said above is good for new people to know. If one does not have insurance you can find about fees, likely pathology (general test) $350-500 range, plodity testing likely $200-400 more(I had this written down somewhere at one time 2002-2003 era).

John T
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Date Joined Nov 2008
Total Posts : 4268
   Posted 12/6/2009 5:34 PM (GMT -6)   
Mel,
I'm not a big fan of the "Team Approach". These Doctor's are all collegues and most likely won't disagree on your treatment recommendation.
My Oncologist told me to never get a 2nd opinion from a doctor that was referred by your 1st opinion doctor, because he will rarely disagree.
This makes sense, because the doctor's real "customer" is the other doctor that will keep refering patients, not you that will be seeing him only one time. It's just a built in conflict of interest that can easily be avoided by getting a 2nd opinion from a different institution or a doctor that has no relationship to you doctor.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 12/6/2009 5:34 PM (GMT -6)   
Mel,
I'm not a big fan of the "Team Approach". These Doctor's are all collegues and most likely won't disagree on your treatment recommendation.
My Oncologist told me to never get a 2nd opinion from a doctor that was referred by your 1st opinion doctor, because he will rarely disagree.
This makes sense, because the doctor's real "customer" is the other doctor that will keep refering patients, not you that will be seeing him only one time. It's just a built in conflict of interest that can easily be avoided by getting a 2nd opinion from a different institution or a doctor that has no relationship to you doctor.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/6/2009 5:47 PM (GMT -6)   
Totally agree John, and witnessed it both the referral to uro-docs (franchised too) other location, as my uro did not have the guts to do my surgery to a non-cureable patient, but figured his pal did. The buddy boy network thing, this referral doc wrote down and handed it to me on paper with the words 'curative and 1% chance of incontinence'....naturally I questioned that meeting. The next day went to see Dr. Menon whom after checking out my scenario...said flattly I will not do surgery on you!!!! Slightly different take on this situation, beware of agendas and even liars, verify and get mulitple opinions or informations.

Later I had the quantity quorum thing with 3 docs from another branch (suburbs Detroit-Henry Ford Hospital group). I could smell the pressure to sign me up and the onco-doc probably knew that with my high stats, it won't be long and I will have your _ss as a patient, too. So, I walked on and on, got a totall of 8 face to face opinions and by email or letter from RCOG, Dattoli and such. Finally found my best treatment, and that the doc never mislead me or mentioned cure and had the potent protocol that would likely give me my best controll or shot at this. Surgery would have been for nothing in my scenario, as Don Cooley quoted to me 'you would have failed surgery before you got off the table' (he founded www.prostate-help.com a knowledgable man).

Jungle-twilight zone (yes).

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/6/2009 5:56 PM (GMT -6)   
So zufas, how did you have the time and the money to seek out so many opinions? Are you self-insured, or under a very good healh care plan? Most insurances would never allow that many opinions regardless of the circumstances.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 12/6/2009 6:06 PM (GMT -6)   

Zufus:

You said Dr. Menon indicated that surgery would not be advisable. Why? (I don't see a signature for you here-- otherwise I'd probably figure it out!)

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/6/2009 7:26 PM (GMT -6)   
David -(Purg)Wife works for Blue Cross(back then I was self employed by choice) and I am amazed they paid for everything, even when I fired docs, switched hospitals and had multiple blood testings and many multiple opinions, maybe they knew my stats and said this sob will be lucky to make 1-2 yrs. (LOL) My radiation protocol(no idea maybe $60K) and pre-scans (bone & ct)($$$) 2 yrs. of ADT3 ($13K per year approx.), and multiple opinons, maybe it cost $100,000. I have been saving Blue Cross $13000 per year for the last 5-6 yrs. cause I dropped ADT3, of which my uro-doc would have had me on for life. I m I pleased with Blue Cross....exceeded my expectations, seldom does that happen for the little guy.

Compiler, you apparently have not seen all my posts even the ones I sent to you but here are my "found" stats, plus I started with total urinary blockage in emergency room (that prognosis for high stats PCa is ominious...one the books I read showed a guy who lasted 1-2 yrs. with such beginning). You can do the Partin tables and math if you wish, Dr. Menon is righteous enough to not take your money for about zero chance of cure. Guys with much-much lower stats are failing surgery.

Dx-2002 bpsa 46.6 12/12 biopsies all 75-95% in everyone, Gleasons 7,8,9's (two sets about identical in findings too), ct and bone scan clear (not defintive enough anyway), had some perineural invasion on a few of the biopsies too.

Post Edited (zufus) : 12/6/2009 5:33:45 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/6/2009 7:38 PM (GMT -6)   
zufas, hope you didnt think i was being a smart a*** with my question, it was an honest one. when i started my pc journey i was on blue cross here in SC, and they got touchy with me wanting anything other than a brief second opinion, i am sure each state regulates what the insurance company can and cant do. when i was laid off 7-2008, my boss, not being large enough for cobra, paid my premiums from july through december of 2008, knowing that i had a pc dx and would be undergoing expensive surgery. will always be thankful to him for that, because he was under no legal obligtion here in sc to do anything. my good fortune, when my blue cross was finally going to end, period, and they refused to offer me a policy at any price even if i were willing to pay, my wife's employment place had open enrollment, and since there was no laspe in my coverage with blue cross, they picked me up with all pre-existing in place. her insurance has paid for all my corrective surgeries and my recent salvage radiation job. so i too, feel fortunate, it could have been very ugly had i not had some breaks. yeah, i have had great luck with my medical team, but i am not stupid, they love the insurance more than they actually love me. if i didnt have it, they wouldnt give me the time of day.

glad to hear that you got the good break working with blue cross, i just wondered with your diverse journey, how you pulleld off all the opinions. for all i knew, you were a close millionaire, lol.

keep on keeping on brother

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 12/6/2009 7:57 PM (GMT -6)   

Zufus:

 

Thanks for repeating the info. Sometimes it is hard to remember who has what stats-- that's why the sig. line is always a good reminder. I am currently on information overload!!

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/6/2009 9:21 PM (GMT -6)   
Thanks David & Mel and others, hey I might have wondered too being in your shoes looking at this. I did not have any mentors other than the internet (back then it was far from what you can find now on PCa, but had some good answers especially at www.prostate-help.com). I felt like it was hand to hand combat trying to find atleast truthful answers or prognosis's, I finally found some truthful and helpful people and it has made all the difference in this journey.

I monitored my psa's outside of my onco-doc also, go to Crittenton Hosp.-Rochester, Michigan has walkin psa testing $15 M-F 7-6pm Sat. 8-12 pm anybody can walkin, mailed results. I still go there even though I see onco-doc 4 times a year and compare his psa testings too. I don't wait to see psa's I go and get them and luckily have monitored (closely)as I went back on DES after a 2 yr. break of no drugs(psa rise), and otherwise have been going intermittently, unless psa level moves up then I go back on continous. Amazingly has worked a number of times(dropping psa number) on this protocol, thus far.(like 4 yrs. total). It is a walk on the wild side.

Post Edited (zufus) : 12/7/2009 8:19:57 AM (GMT-7)

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