Second Opinion Questions

second opinion
The slides are kept indefinitely. Simply call your doctors office and have them sent to a center of excellence so that you are not under or over treated. I had mentioned a couple of centers of excellence in a previous post to you.

It is very important to know where you stand in determining treatment; having a second opinion on the results of your biopsy is one important diagnostic test.

Another test, as I had mentioned, is an MRI with an endocrectal coil using a 3.0 tesla magnet done by an expert in the field...yes there are differences in accuracy between those who do MRI's. This will show if there is extracapsular extension and suspecious lesions....the amount and volume of suspecious lesions as well as extracapsular extension will help you make the right decision for treatment.

cchqnetman said:

Thanks
Thanks. I talked to my doctor and he wants to wait 3 months to see what my PSA is doing before doing any further tests. Since this is as far as it has gotten since being initally diagnosed in 1999 I think that is reasonable. I still might have the slides read somewhere else but then I will be left with the question of what lab do I believe (if the results are different). No easy answers, I guess.

Thanks again.

David

Acually a pretty easy answer
If you use a "world class" expert pathologist who specializes in analyzing biopsies for the prostate, this it the opinion that you will use. When the results of the biopsy are low aggressive as yours, any change in reading would very highly influence your treatment decision.

The PSA is an indicator only, the gleason score from the biopsy is the critical information. You need to make sure that it is right. confirming the biopsy results is mutually exclusive from tracking the psa. There is no reason why is should not be done now.

The same holds true for the MRI, although not as concrete as the biopsy, it is a vastly better indicator than the psa.

In my opinion, by your doctor telling you to wait another 3 months for confirmation of the biopsy results, and telling to to wait three months for an MRI diagnostic test, instead of ordering it now, is doing you a diservice. I question his motives and competency.

Additionally you do not need your doctors approval to get a second opinion on your biopsy.

cchqnetman said:

Who Pays for 2nd opinion and how much
Reference your suggestion to get a second opinion - how do you arrange this? Do you ask the lab that has the slides to send them or do you ask the new lab to request them. Also, who pays for this and how much is it likely to cost?? Has anyone used the Air Force Institute of Pathology for second opinions??

Thanks

David

2nd opinion
Simply call the doctors office, they will instruct the personnel at the lab or wherever the slides are to pack the slides and send them to your designated lab. This will be sent overnight delivery which the new lab will pays for. After the 2nd opinion lab analyzes the slides, the slides will be sent back to the original lab. The lab analyzes will be sent to your doctor, who will give you a copy of the report.

I have never heard of the Air Force Institute of Pathology, not saying that they are not competent. The institute is not on the list that I have as a "World Class" pathology labs.

Payment......I don't how the VA works...there is an outside possibility that they might pay...ask them

If you have medical coverage, this is a valid procedure, and should be paid by your insurer, otherwise it should cost approximately 300 dollars. SwingshiftWorker had a second opinion that he paid for, I think that he mentioned a dollar amount in the 300 dollar range.

cchqnetman said:

Who Pays
Reference your suggestion to get a second opinion at John Hopkins - how do you arrange this? Do you ask the lab that has the slides to send them or do you ask John Hopkins to request them. Also, who pays for this and how much is it likely to cost?? Has anyone used the Air Force Institute of Pathology for second opinions??

Thanks

David

Who Pays
David,

Most insurance will pay for second opinions for a disease as serious as prostate cancer. They might not pay for out of network lab, if so and you do not want to pay out of pocket, ask for an in-network pathologist/radiologist. If the Air Force Institute is in network and is familiar with prostate cancer, they should be OK. I had second opinions done for both biopsy and treatment options.

Good luck.

The value of second opinions
David,

As others have noted, a second opinion is more than having your biopsy slides reviewed by a prostate cancer expert at a leading institution such as Johns Hopkins. It also involves talking to experts in different treatment specialties and getting their frank and candid opinion about the best course of action to address your diagnosis.

In my own case I not only had my slides read by Epstein at Johns Hopkins (they confirmed the original diagnosis with no changes) but I also met with another urologist who specialized in surgery both DaVinci and open, two different oncologists (one was a telephone consultation), proton radiation, and two different radiation specialists.

In my opinion, these consultations were the most important thing I did in figuring out what to do after I was initially diagnosed with a 3+3 Gleason, a single positive core at 15% involvement, a PSA of 4.2, no physical symptoms, normal DRE, and no known history of prostate cancer in either side of my family.

While I was going through this two month period of meeting with different experts I also read about a dozen books about prostate cancer written by both doctors and patients.

The reason I feel that these second opinions are so important is that I had a chance to compare recommended treatment strategies side-by-side from distinguished experts who were all looking at the same information. Frankly, I was shocked at the wide range of earnest, informed recommendations by these experts.

My diagnosing urologist and the two others I met with were unhesitating in their strong and urgent recommendation to undergo prostate removal to treat my relatively low risk prostate cancer. In fact, they used almost the exact wording to describe the benefits of this treatment which included: "we can get it all," "if you do radiation first you can't do surgery later," and "surgery is the only way to know exactly what is going on inside your prostate," and "you are young enough to recover nicely from this." None of them said a word about potential penile atrophy, ED, incontinence, or other potential side effects until I pressed them with specific questions which I only knew about because I had taken the time to read some books before the visit. Knowing what I know now, I also believe that all of these urgent and dire warnings to have surgery were knowingly incorrect and misleading on the part of the doctors. The funny thing is that I personally liked all of these men and one woman. I don't think they woke up in the morning with the conscious thought to go out and lie to patients to get business. I just think they drank so much of their own Kool-Aid that on some levels they came to believe it.

Of the two oncologists I spoke with, one recommended surgery and the other active surveillance. The oncologist who recommended surgery quipped, when asked about the liklihood of ending up with significantly reduced genitilia after surgery, "you have enough that you can afford to lose some without worrying about it." Now, this brought a smile but it isn't really true. None of us have enough in that department that we would volunteer to give any of it up. The other oncologist (he was the author of one of the books I read) told me flat out that prostate cancer was not going to kill me so beware of any treatment.

The proton therapy consultation was thorough and the doctor took pains to go over all potential treatment methods in great detail. Then he proceeded to dismiss them all as inferior to his chosen field of proton therapy and shrugged off technical questions about adjusting the Bragg peak and potential damage to surrounding tissue.

The two radiation oncologists I met with were, in my lay opinion, the most thorough, objective, and most open in discussing the risk/reward aspects of the various treatment methods. Both of these doctors told me that almost any treatment I chose would likely take care of the prostate cancer. The question I needed to answer was how much risk did I want to take with respect to quality of life. In the end I ended up choosing one of them and I consider myself lucky to have been diagnosed with a cancer that gave me multiple good treatment choices.

As another poster pointed out, second opinions are not free and usually not explicitly covered under most insurance plans. But in my own case, I was using Tricare (retired military) and while every treatment method was fully covered, I did need to meet my annual decuctables so I was going to pay a few thousand out of pocket whether or not I had a second opinion or not. So I chose to meet my out-0f-pocket deductible expenses with second opinions. I think in retrospect that is was a smart investment. I was also, fortunately, in a position to self pay for just about any treatment I chose even if it wasn't covered so my only focus was on making the smartest choice for my individual case. I feel fortunate in that respect.

I know that some men may not have the financial means for multiple second opinions. As I recall, the average cost of each consultation was somewhere between $700-800. While this isn't cheap, it's fairly doable for most and many doctors will reduce their fees for patients with financial hardship. If the transmission fell out of the car we drive most of us would figure out a way to pay for it so we could get back on the road. I view the cost of these second opinions in the same way. They aren't a luxury.

Before we can make an intelligent decision about what is best for us, we have to know the facts. Reading, participating in forums like this, and consulting with experts are, in my opinion, the only way to get this.

I fear that most men only do what their diagnosing doctor tells them to do. I stronly feel that our health care and Medicare laws should allow for at least another second opinion by a qualified, non-diagnosing doctor chosen by the patient. But in the meantime I believe we should figure out a way to pay for it ourself.

I've gone on too long about second opinions but I do strongly urge you to get them. Get as many as you can until you feel you have enough information that you trust to make a truly informed decision.

Best to you,

K

cchqnetman said:

"I've gone on too long" Nope!!!!!
Thanks!! I read every word of your post and appreciate it. One thing the military taught me was to disbeliev half of what I hear and suspect the rest. I will definitely be looking at 2nd opinions. I am not in a hurry to let someone cut me. I am on TriCare Prime so I have that option.

Thanks again for the advice!

David

PS Love the monkey!!!

Thanks Kongo for posting
Concise and very well described. I hope guys here read your post and follow suit before committing to any.

Thanks for the post.

(Should I send a bottle of Martini or Madeira Port would satisfy you?)

VG

Kongo said:

The value of second opinions
David,

As others have noted, a second opinion is more than having your biopsy slides reviewed by a prostate cancer expert at a leading institution such as Johns Hopkins. It also involves talking to experts in different treatment specialties and getting their frank and candid opinion about the best course of action to address your diagnosis.

In my own case I not only had my slides read by Epstein at Johns Hopkins (they confirmed the original diagnosis with no changes) but I also met with another urologist who specialized in surgery both DaVinci and open, two different oncologists (one was a telephone consultation), proton radiation, and two different radiation specialists.

In my opinion, these consultations were the most important thing I did in figuring out what to do after I was initially diagnosed with a 3+3 Gleason, a single positive core at 15% involvement, a PSA of 4.2, no physical symptoms, normal DRE, and no known history of prostate cancer in either side of my family.

While I was going through this two month period of meeting with different experts I also read about a dozen books about prostate cancer written by both doctors and patients.

The reason I feel that these second opinions are so important is that I had a chance to compare recommended treatment strategies side-by-side from distinguished experts who were all looking at the same information. Frankly, I was shocked at the wide range of earnest, informed recommendations by these experts.

My diagnosing urologist and the two others I met with were unhesitating in their strong and urgent recommendation to undergo prostate removal to treat my relatively low risk prostate cancer. In fact, they used almost the exact wording to describe the benefits of this treatment which included: "we can get it all," "if you do radiation first you can't do surgery later," and "surgery is the only way to know exactly what is going on inside your prostate," and "you are young enough to recover nicely from this." None of them said a word about potential penile atrophy, ED, incontinence, or other potential side effects until I pressed them with specific questions which I only knew about because I had taken the time to read some books before the visit. Knowing what I know now, I also believe that all of these urgent and dire warnings to have surgery were knowingly incorrect and misleading on the part of the doctors. The funny thing is that I personally liked all of these men and one woman. I don't think they woke up in the morning with the conscious thought to go out and lie to patients to get business. I just think they drank so much of their own Kool-Aid that on some levels they came to believe it.

Of the two oncologists I spoke with, one recommended surgery and the other active surveillance. The oncologist who recommended surgery quipped, when asked about the liklihood of ending up with significantly reduced genitilia after surgery, "you have enough that you can afford to lose some without worrying about it." Now, this brought a smile but it isn't really true. None of us have enough in that department that we would volunteer to give any of it up. The other oncologist (he was the author of one of the books I read) told me flat out that prostate cancer was not going to kill me so beware of any treatment.

The proton therapy consultation was thorough and the doctor took pains to go over all potential treatment methods in great detail. Then he proceeded to dismiss them all as inferior to his chosen field of proton therapy and shrugged off technical questions about adjusting the Bragg peak and potential damage to surrounding tissue.

The two radiation oncologists I met with were, in my lay opinion, the most thorough, objective, and most open in discussing the risk/reward aspects of the various treatment methods. Both of these doctors told me that almost any treatment I chose would likely take care of the prostate cancer. The question I needed to answer was how much risk did I want to take with respect to quality of life. In the end I ended up choosing one of them and I consider myself lucky to have been diagnosed with a cancer that gave me multiple good treatment choices.

As another poster pointed out, second opinions are not free and usually not explicitly covered under most insurance plans. But in my own case, I was using Tricare (retired military) and while every treatment method was fully covered, I did need to meet my annual decuctables so I was going to pay a few thousand out of pocket whether or not I had a second opinion or not. So I chose to meet my out-0f-pocket deductible expenses with second opinions. I think in retrospect that is was a smart investment. I was also, fortunately, in a position to self pay for just about any treatment I chose even if it wasn't covered so my only focus was on making the smartest choice for my individual case. I feel fortunate in that respect.

I know that some men may not have the financial means for multiple second opinions. As I recall, the average cost of each consultation was somewhere between $700-800. While this isn't cheap, it's fairly doable for most and many doctors will reduce their fees for patients with financial hardship. If the transmission fell out of the car we drive most of us would figure out a way to pay for it so we could get back on the road. I view the cost of these second opinions in the same way. They aren't a luxury.

Before we can make an intelligent decision about what is best for us, we have to know the facts. Reading, participating in forums like this, and consulting with experts are, in my opinion, the only way to get this.

I fear that most men only do what their diagnosing doctor tells them to do. I stronly feel that our health care and Medicare laws should allow for at least another second opinion by a qualified, non-diagnosing doctor chosen by the patient. But in the meantime I believe we should figure out a way to pay for it ourself.

I've gone on too long about second opinions but I do strongly urge you to get them. Get as many as you can until you feel you have enough information that you trust to make a truly informed decision.

Best to you,

K

Second Opinion

Great information, Kongo, but it still leaves me wondering if there is such a thing as an "expert" in all PC therapies, as opposed to an "expert" in a particular therapy.  I am considered an "anomaly" by every doctor with whom I have consulted, due to a single (on one of five chips) small G3+4 transition zone tumor (disovered by TURP after many negative needle core biposies), clear CT and bone scans, and a PSA of 60 ( but with a three year doubling time history over 10 years).  As a result, I don't fit in any recognized category for the purpose of determing appropriate treatment.  Any suggestions on who I should talk to or what I should do?

 

 

DSM61

Recommended Labs for prostate cancer biopsy anylises;

Dr Bostwick at Bostwick Labs or Dr Epstein at Johns Hopkins

Best

VG