Second Opinion Questions

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

Great Post!

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

hello, i'm having 2nd opinion issues my self. my 1st. diagnosis said i was GS 4+3=7, when i had my slides sent to epstein, he said my diagnosis is GS 3+3=6. everything is still contained within my prostate. that's a huge gap between the two diagnosis. to put the icing on the cake, my PSA went up from 11.9 last summer, to 18.67 last week. my RO says this places me in the unfav. risk category. so, he wants to add ADT to with a combination of HDR and EBRT. who do i believe? maybe i missed it, but what made you not listen to the first diagnosis and go with the choice you made?