Getting a Second Opinion

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Tudpock18
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Date Joined Sep 2008
Total Posts : 4089
   Posted 7/2/2009 5:06 AM (GMT -6)   
The following is from Johns Hopkins...some very wise advice, IMHO.
 
Tudpock
 

 

 

Prostate cancer is usually not an emergency. By taking your time, learning about your illness, and exploring your options, you're likely to make an informed decision that's right for you. And since doctors don't always agree on prostate cancer treatment, many men find it helpful to get a second opinion.

Although most people don't realize it, doctors don't always agree on the "best" treatment for early-stage prostate cancer. A recent study presented at the American Society for Clinical Oncology meeting found that men with early prostate cancer who consult only a urologist -- the doctor who performs radical prostatectomy -- are likely to choose that procedure. But men who see a urologist and a radiation oncologist are more likely to choose radiation therapy. This means it's wise to consult with a urologist and a radiation oncologist to get a clear understanding of your options. Health insurers generally pay for second opinions, and some even require them before certain procedures.

Getting a second opinion. You might be reluctant to suggest getting another opinion for fear of offending your doctor or thinking that he or she may not want to involve another physician. But many doctors welcome such discussions. If yours doesn't, strongly consider changing doctors.

Your primary care doctor and the urologist who performed your biopsy are the best sources for referrals. Request that, if possible, they suggest a colleague affiliated with a different hospital. Although this is not absolutely necessary, the practice is prudent because doctors who work at the same institution often share similar views and may not want to contradict one another. The American Medical Association (www.ama-assn.org) and the American Urological Association (www.urologyhealth.org) offer referral services.

Before your appointment. Check to be sure the doctor you consult is board-certified in the appropriate specialty. Ask your doctor's office to send a written summary and test results to the doctor you'll be consulting with. Call his or her office before your appointment to be sure the records have arrived as it will be impossible for your evaluation to take place without them.

At your consultation. Ask the doctor to explain why he or she is recommending a certain treatment, and take notes. Or bring a trusted family member or friend to help you remember the discussion, take notes, or ask questions you may have forgotten. Ask the consulting doctor to send a written report containing the recommendations to you and your referring physician.

Still not sure? If the specialists you see don't agree, schedule a consultation with a medical oncologist -- a cancer treatment specialist who does not perform radiation or surgery. Another option is to meet with a second urologist or radiation oncologist -- or both).

If you're having trouble making a decision, ask your primary care doctor -- or another specialist -- to help you sort through the options. Or, consider seeking an opinion at a nationally recognized cancer center, such as one that is affiliated with the National Comprehensive Cancer Network (www.nccn.org). It might also help to talk to men who have been treated for prostate cancer.


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 7/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!

CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 7/2/2009 8:50 AM (GMT -6)   
I agree.  My urologist recommended a treatment and then recommended someone to go to for another opinion.  My surgeon also said he wouldn't be offended by a second opinion.  Good advice.  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


wiggyann
Regular Member


Date Joined Apr 2007
Total Posts : 171
   Posted 7/5/2009 2:06 AM (GMT -6)   
Thanks Tudpock for the excellent advice from John Hopkins on Prostrate Cancer
treatment options. My husband's urologist told told him that due to his age
(68 at the time of his diagnosois) that he would let him choose his own treatment. He said
if my husband had been younger he would have just put him into the hospital and removed his prostate. Then, he went through the different options, surgery, radiation both radiation treatments and the seed implant and he mentioned cryotherapy also.
He told my husband not to wait too long to make his decision because he had one core
that was a 3+4 which was close to the prostate capsule and he was concerned that it might leak through the capsule wall. My husband made an appointment with the radiation oncologist and his suggestion was both IMRT and a seed implant also, which is what he decided on and he has been happy with his decision. It wasn't until I began reading this forum that I realized that most men make their own decision on the kind of treatment they are going to have. If my husband had been younger, he would not have been given an option but his urologist would have just removed it. This is what happened to my husband's step brother and he has told my husband many times that if he had it to do over, he would have never had the surgery, but would have chosen another form of treatment. If the cancer is contained in the prostate, I believe each man should be able to chose his own form of treatment.

Wiggyann

husband diagnosed 12-07-2006
psa 7.3, 8 out of 12 cores positive for andenocarcinoma
Gleason 7
Treatment 24 IMRT and a 90 seed implant
psa one year 0.5
psa two years 0.4

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 7/5/2009 6:23 AM (GMT -6)   
great information and I to think a second opinion is good at least for peace of mind.

peace to all
dale
My PSA at diagnosis was 16.3
age 47 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
Testosterone keeps rising, the current number is 156, up from 57 in May
T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%
 


John T
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Date Joined Nov 2008
Total Posts : 4188
   Posted 7/5/2009 11:45 AM (GMT -6)   
when getting a 2nd opinion it is very important to get an opinion from Doctors in different fields, surgery, radiation and oncology. Don't use a doctor that was recommended by your first opinion as there are some built in conflicts of interest and doctors who know one another may not be willing to contradict each other. Do your own reaearch and pick doctors that are not affliated with the same institutuon or who refer patients to one another.
A good example of this is a surgeon who refers you to a radiologist for a 2nd opinion. The surgeon refers all of his older patients and high risk patients to this radiologist for treatment. So the reality is that the surgeon is the radiologist's best customer. He may not be willing to contridict the opinion of his best customer.
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


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 7/5/2009 12:41 PM (GMT -6)   
I would agree on not going with you primary uros recs for second opinions, they are all pretty chummy from what I have seen.

What we did, we have a rich friend who travels with the big$ crowd, I told my wife to ask her cause she will know. Took a few phone calls but she had the answer in a few days.
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.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/5/2009 8:15 PM (GMT -6)   
Absolutely sound advice. A good doctor has no problem with your seeking second (and third etc.) opinions because that is one way that they learn to be better doctors. My uro spent time explaining why he thought I should talk to another uro who had done more robotic surgeries, he also recommended a radiologist who might give me a different perspective. Meanwhile, my internist has asked me to have every doctor I consult send a report to him.

I strongly agree that a good doctor has no problems with second opinions. When I saw my internist for my pre-surgical physical he said, "I'll see you in August when this cancer stuff is all over."
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Pathology report. Lymph nodes negative, Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight unpredictable leakage day/1 pad.


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 7/8/2009 7:12 AM (GMT -6)   
I second a second opinion! When my husband was diagnosed and we sat with his urologist/surgeon to discuss the options, the doctor was all for a second opinion. We live outside New York City so had many choices for second opinions at top hospitals. My husband opted to not have the second opinion - he's been with his urologist for years and trusts him. Surgery was our treatment of choice from the get go, and the urologist agreed. PCa can be a slippery devil and the diagnosis through biopsy is not complete. My husband's case is a good example of the importance of a surgical pathology report since his stage was updated to T3a due to capsular penetration. Thank God all other aspects of the pathology were negative.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage updated to T3a with one microscopic extension into but not through capsule. Surgical margins, bladder and SV negative for tumor. Gleason 3+4 (no change from biopsy). PSA of 0.0 every 3 months since surgery. Incontinence is very good to excellent. Making progress with ED.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/8/2009 8:01 AM (GMT -6)   
Great advice on second opinions and getting second opinions.
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
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 7/8/2009 11:06 AM (GMT -6)   
This is an example of the value of a 2nd opinion from a prostate oncologist vs a surgeon.
With the surgeon I had three pieces of information, Gleason 6, 5% in two cores of 26, one in right lobe, one in transition zone and PSA of 40.

Prostate Oncologist: No cancer in right lobe, Large transition zone tumor, Gleason 3+4 and 4+3, 18mm by 16mm, tumor location precisely mapped out and confirmed by T3 MRI. PCA3 of 41, PAP low, indicative of non agressive tumor. Base line color doppler images, and 1525 MRI images of lymphatic system showing clear, and anterior tranzition zone tumor. No indication of capsular penetration.

The 1st DX would indicate watchful waiting or surgery.
The 2nd opinion would indicate radiation, because of the tumor location and possibly HT in conjunction with radiation.

Which information would you rather have in considering treatment options?
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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/12/2009 5:42 AM (GMT -6)   

Yeap as John T pointed out in "real world" actual living case (his own scenario), this is the type of second opinion, valued information a patient can get or have. Might I add there is a world of difference in comparative information he just showed us as to making your better decision/judgement for possible treatments/protocols. Thus knowledge is power and could make a huge difference in your life, outcomes, side effects, costs, choices or non-choices.

Other pluses from second opinions:   you can compare what docs actually say to you...."totally curative" (???), or this is better than this other treatment (because..????), chances of incontiency  (1% or less...????).  You may actually see gross bias and agendas (I know I did when getting mulitple opinions), see sugar coated sales pitches (possibly), I had couple docs whom were literally trying to snag me as 'their" patient on the spot (close the sale , today), saw some straightforward non-sugar coated and non-guaranteed information that most people prefer to be handed to them (my best guess, maybe people prefer b.s. as long as it makes them feel good-??) Anyway, after seeing this type of thing first hand you get a huge grasp as to the system, the land of bizarre in PCa and treatments and multitude of possible choices, including choices for the same type of docs (even that varies alot).

People wondered (wrongly) why I got so many opinions (8)+, not that I was searching for the dude whom said "cured", I heard that from the 1st doc I went to for possible surgery. (that particular doc...wrote it on paper "curative and 1% chance of incontinence"..and handed the paper to me!!!) Back then I knew close to zero at age 52 (2002-then) and did not even know that I was not a realistic candidate for successful surgery, found that out along the way. The second surgeon (more reknown) gave me his opinion...'I will not do surgery on you', bluntly I had no chance for a reasonable outcome for curative.  (but..but..but, doc A yesterday said curative and wrote it down???). Then I got further opinions from radiologists, oncologists, surgeons. What an eye opener, comparatively the education you cannot buy. Proceeded into the PCa jungle now with clearer eyes and able to make likely better decisions on fighting this dragon. My stats will explain why surgery is riduculous in my case (being a newbie back in 2002....I knew zero) I knew I had a thing between legs is about all I knew (then). smilewinkgrin

Dx-2002  (bPsa  46.6  total urinary blockage-emergency room, biopsies 12/12 all PCa 75-95% in all, gleasons found 7,8,9's  ct and bone scans showing clear).  Have you seen anybody with those types of stats that has successful surgery even 5 yrs. out???? I cannot say that I have, but...but...but  surgeon A said curative to me (sounded great....agenda-b.s.-sales pitch????)  I wonder how many closed deals surgeon A has done, without relapsed patients????


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/12/2009 9:02 AM (GMT -6)   
Bro Zufus, with your stats, I couldn't imagine any legitimate surgeon agreeing to do PC surgery on you, not if he/she wanted to hold onto their licencse. It would be totally irresponsible, and yes, you are right, there would be zero, zip, nil, nada, chance of either a cure or containment.

Men in similar high PSA, high % of cancer cores from biopsies, etc, need to realize that before they ever agree to any primary treatment plan that has no chance of working from the get go.

Good advice. Thanks.
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
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/12/2009 1:46 PM (GMT -6)   

Thanks, my brother Purg---  I have tried to hammer this home about the real Jungle that is facing every newbie and even all us 'oldies' whom already been in the thick of the PCa Jungle a while. Let us use repellent on those nasty bugs and and snakes, that are lurking on the innocent patients. Pull out the machette and clear away the obstacles and make a path that is visible and walk out of there as non-captives of PCa.

Anybody want the name or a referral of doc A-whom guaranteed cure and 1% chance of incontinence???? He says he can do lapro (without the robot, cause he did not have access to one back in 2002), I mentioned Da Vinci system in Detroit that had just opened back then, so his reply was yes I can do lapro. I am glad I was not the sucker-o to hook up with him. Don't be afraid to walk or cancel on anybody is decent advice.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/12/2009 2:33 PM (GMT -6)   
Zufas, I hear you. I was needing a spinal tap a few years back, the neurogist was an ass clown in every way, a real egomaniac. I kept getting bad feelings about him. My wife went with me for the procedure, and she (a nurse) got bad feelings, and as he was about to insert the needle, I aborted it and never looked back. Later, same dr, paralyzed a patient for life from the same type of procedure. You got to trust your gut at times. I am a very compliant patient, but I am not a fool.

With tommorows visit to the Rad. Oncology people, I have no intention of getting slammed into Radiation treatment just because. I will have to be convinced it is needed, convinced I have true reaccurance, etc. I only agreed to meet and talk, and by now, they would have consulted with my urologist/surgeon, who is supposed to have explained the difficulties he encountered operating on me.

We all have to be pro-active ourselves about ourselves. It's the one time when thinking about number one first, is ok in my book.

Best to you

David in SC
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
 
 

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