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Second Opinion Questions

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

When people refer to "getting a second opinion" what are they typically referring to?
Are they suggesting getting another biopsy, having a biopsy that has already been done read by a different pathologist, or getting a different opinion on recommended treatment?

Do labs usually keep the biopsy slides? How long are they usually kept? Are labs likely to release the slides to another lab to be reviewed??

Thanks in advance for any answers!!!

David

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

No it not getting a second biopsy, but take the biopsy report to a second Doctor. Some doctor's want cut and buy their wife a new car. There are some will fight the monster without surgey. If I remember your gleason was 9. I think surgey is probably your direction

That one gleason 9 to another!

God Bless

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Thanks for the clarification. My Gleason was a 7 (3+4). One core with 5% involvement and one with 50% involvement and another with PIN. Still thinking my options.

Thanks again.

David

hopeful and opt...
Posts: 1282
Joined: Apr 2009

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's picture
cchqnetman
Posts: 97
Joined: Sep 2012

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

hopeful and opt...
Posts: 1282
Joined: Apr 2009

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's picture
cchqnetman
Posts: 97
Joined: Sep 2012

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

hopeful and opt...
Posts: 1282
Joined: Apr 2009

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.

dsm61
Posts: 1
Joined: Feb 2013

Is there a list of these world class pathology labs on here or can you tell me where I can look that up and find some names and addresses?I appreciate it.

newporter
Posts: 5
Joined: Jun 2012

Two second opinions needed:
1. Ask your doctor to send your biopsy slides to another lab, like Johns Hopkins to confirm that your Gleason is indeed 3+4 and not 4+3. Also, see if there are HG-PIN, or Atypical cells which could indicate more wide spread cancers.

2. Get a second opinion from another oncologist, primarily you want his opinion whether in his view, based on your medical history whether AS is still recommended. And in his practice seeing your type of cases, what is the likelihood cancer is no longer organ confined, and if he were you, would he continue AS.....

For a 62 year old male, normal life expectancy is 82. So, you like to be at least 'average", i.e., live for another 20 years. The 10 year cancer specific survival for organ confined prostate cancer, after treatment is >95%, for metastatic prostate cancer, 10 year survival after treatment is 10%. The challenge for AS is that it is hard to know when the cancer escapes the capsule. So, if I were you I would err on the conservative side and treat, if there is any doubt, however small that the cancer may try to escape the capsule and that is the most important second opinion questions you need to find answers to.

This is just my layperson's opinion.

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

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

newporter
Posts: 5
Joined: Jun 2012

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.

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

I found this information on 2nd opinions:\

Costs
The cost of a Johns Hopkins Urology Medical Second Opinion is $550.

•If a pathology interpretation is required, there is an additional cost of $250.
•If a radiology interpretation is required, there is an additional cost of $250.
Payment is due at the time of the request. Major credit cards (MasterCard, Visa, American Express and Discover) are the accepted means of payment. A receipt for services will be mailed to you approximately 5 business days after payment is received.

Things to consider:
•Medical second opinion is a self-pay service. At this time, most health plans do not cover a medical second opinion.
•Signed approval is required by your local physician before a consultation can be provided.
•Timeframe for turnaround is approximately 10 business days from receipt of all records and payment.
•If you decide that you would prefer a face-to-face appointment at any time during this process, please call 410-735-4872. Face-to-face appointments and telephone consultations are not included in the Medical Second Opinion Program but can be scheduled separately.

dwhite1031
Posts: 26
Joined: Jul 2012

Howdy from Texas!

When I was diagnosed here locally, we talked to my urologist and he had no issues with us getting a 2nd opinion. He talked to us about the treatment options available here and we then checked out The University of Texas MD Anderson Cancer Center in Houston. My wife called them and spoke with the contact listed on their web site for "make an appointment" and they told her to contact our PCP, not our urologist, for a referral, as our BCBS insurance required. We had an appointment set up for a couple weekes later by the end of the day after they received the faxed referral.

We took our reports from my urologist, bone and ct scans on DVD, and reports and "films" from any other doctors I had seen in the past year for anything, as requested. MD Anderson then requested the slides from the lab my urologist used and they were assessed by their pathologists in the Genitourinary Cancer Center. This is the clinic where all us prostate pilots go that are patients at MDACC. :-)

I am a Gleason 9 with all cores at 5+4 except one at 4+5 from the origianl patholgy lab. The MD Anderson guys and gals concurred with all except the one 4+5 and their report listed it as 5+4.

In my case it's academic, 4+5, 5+4, ying and yang, yadda yadda yadda..... but it shows how a pathologist that sees biopsy samples of genitournary cases exclusively may see something different than a pathologist that sees a variety each day.

And also, my insurance paid for all of my second opinion stuff. I am currently undergoing my treatment with MD Anderson.

Hope this helps!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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's picture
cchqnetman
Posts: 97
Joined: Sep 2012

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!!!

VascodaGama's picture
VascodaGama
Posts: 1517
Joined: Nov 2010

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's picture
Kongo
Posts: 1167
Joined: Mar 2010

would be wonderful. Thanks!

jwoodie
Posts: 21
Joined: Feb 2013

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?

 

 

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Woodie,

You pose a tough question.  While we are all unique with our various cancers your case poses a particularly vexing situation in my lay opinion.  With negative biopsies but a positive hit from a TURP I would think that your cancer is less aggressive rather than more so.  I saw that because it is my understanding that a TURP takes away prostate mass from areas that are more toward the center of the prostate where BPH tends to grow, pushing inward and accounting for many of the symtoms that large prostates can cause.  The rather high PSA seems greater than what could be attributed to BPH alone yet your many negative biopsies have failed to uncover anything.

I would choose to consult with an oncologist the specializes in prostate cancer, a radiation oncologist, and a respected urologist and compare their opinions.  I would also seek a telephone consultation with Doctor Anthony Horan who is in Fresno, CA and the author of an excellent book about the business of prostate cancer.

Good luck and I hope you keep us updated.

 

K

VascodaGama's picture
VascodaGama
Posts: 1517
Joined: Nov 2010

DSM61

Recommended Labs for prostate cancer biopsy anylises;

Dr Bostwick at Bostwick Labs or Dr Epstein at Johns Hopkins

Best

VG

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi David,

I was browsing around the boards and came across your post. I have Head and Neck Cancer and I'm being treated at Johns Hopkins because of a 2nd opinion. My cancer is rare in that the primary site is unknown. It accounts for only 1-2% of Headand Neck cancers. 

I live about two hours from Baltimore in Virginia. I started my journey visiting local doctors and oncologists. After meeting with them, I just didn't feel comfotable. There was no "Team" approach and it seemed as if one hand didn't know what the other was doing. After researching their facilities I found they were not even an accredited cancer center and their rating was 24.7 out of 100 in survival! My partner and caregiver felt the same way. She along with many others urged me to get a 2nd opinion. I'm glad I did! Johns Hopkins is 3rd in the nation and #1 in Head and Neck cancer. 

I called and spoke with a very nice woman who helped me get the appropriate paperwork together and submit the request to my insurance company. They acquired all the slides, CAT and PET scan images and everything they needed to assess my situation. When I arrived I was checked in, weighed, BP taken etc. and taken to an exam room. within minutes a "Team" entered the room. A Medical Oncologist, Radiation Oncologist, Surgical/ENT Oncologist, Speech and Language Pathologist, Cancer Nurse Manager Praticioner and the Coordinator of the Sidney Kimmel Cancer Center. I was poked, prodded and examined more in 25 minutes than I had been in the several weeks I was seeing the physicians back home.

Everyone there was on the same page and knew the pathology and test results. Their assessment and approach was totally different than the original treatment plan. They were totally up front and were confident they could successfuly treat me. I decided the seek treatment there and I'm very glad I did. I had surgery to remove the cancer and I start treatment (radiation and chemo) in two weeks. The surgery was successful and my surgeon is confident he removed all of the cancer. Treatment is basically a follow up to be sure we get any rouge cancer cells that might have escaped. 

Having confidence in your "Team" is vital to your success in beating the beast. It's your life we're talking about and a 2nd opinion is not only logical but warranted if even to affirm your current situation.

Good luck in your journey!

"T"

 

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