Straight Talk for the Newly Diagnosed

Have much catching up to do with you all.  I received the following from Johns Hopkins health alerts (you can subscribe for free @johnshopkinshealthalerts.com).  This is critical reading for the newbies and “validation” for the oldies.  You can trust Hopkins:  According to usnews.com, which ranks hospitals, JH is the best hospital in the country overall (have to double-check) and it also has the top-ranked Urology Department.
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Prostate Disorders Special Report

When the Diagnosis Is Prostate Cancer — Seeking a Second (or Third or Fourth) Opinion

Getting a balanced view of all your options for prostate cancer may involve consulting with several specialists.
Determining a course of treatment for prostate cancer is one of the most harrowing decisions in modern medicine. Not only do treatments such as surgery and radiation therapy have troubling side effects, but doctors can’t agree on which treatments work best-and are more likely to recommend the option that they specialize in. Hence, to be in the best position for making decisions about your own treatment for
prostate cancer, it’s vital to get more than one opinion.

Three Types of Prostate Cancer Specialists

In an often-cited study published in the Journal of the American Medical Association in 2000, researchers asked more than 1,000 specialists what treatment they would recommend for a man with early-stage prostate cancer who was expected to live at least 10 more years. Nearly all the urologists (93%)-who perform surgery-chose surgery as the preferred treatment for prostate cancer, while most of the radiation oncologists (72%) responded that radiation therapy and surgery were equally effective treatments for prostate cancer.

The study authors’ conclusion? Patients should schedule a consultation with a member of each specialty before making a decision on their prostate cancer treatment. If these specialists don’t agree on your prostate cancer treatment, one option is to schedule a consultation with a medical oncologist, a specialist in cancer treatment who does not perform radiation or surgery. Another option is to see a second urologist or radiation oncologist. Doctors of the same specialty often have different approaches to treatment: For example, some radiation oncologists will recommend external beam radiation therapy; others, brachytherapy; and still others, a combination.

The Importance of the Pathologist for Your Prostate Cancer Diagnosis

A final but not-to-be-overlooked reason to seek a second opinion for prostate cancer is that if done at a center that specializes in prostate cancer treatments, it involves having another pathologist review the slides from your biopsy specimen. An accurate pathology reading is essential because it forms the basis for prostate cancer treatment decisions.

**Unfortunately, spotting cancerous cells and determining how abnormal they appear are difficult, and pathologists sometimes make errors. In one study, pathologists at Johns Hopkins reviewed biopsy samples of 535 men who had been referred for radical prostatectomy and reclassified 7 (1.3%) as benign. Upon subsequent clinical workup, 6 of 7 men were considered not to have prostate cancer, and their prostate cancer surgery was canceled. Getting an incorrect reading can limit your treatment options-or lead to having treatments that you don’t need.**

How To Get a Second Opinion on Your Prostate Cancer Diagnosis

Some patients are reluctant to bring up the matter of second opinions, thinking that their doctor may not be receptive to involving another physician. Today, however, doctors in step with current medical standards welcome such discussions and support their patients’ desire for additional information whenever appropriate. Health insurers generally pay for second opinions, and some even require them before certain procedures.

Your primary care doctor and the urologist who performed the biopsy are the best sources for referrals. You should 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 be reluctant to contradict one another.

Also check to be certain the consultant is board certified in the appropriate specialty. The American Medical Association (www.ama-assn.org) and the American Urological Association, www.urologyhealth.org) offer referral services. Hospitals, local health departments, family, and friends are other possible resources.

If your referring doctor is unwilling to discuss the possibility of a second opinion or makes you feel uncomfortable about the matter, strongly consider changing doctors.

Before meeting with you, the consultant will require all relevant medical records. The first doctor’s office can send written reports and test results directly to the consultant. Be sure to call before your appointment to confirm their arrival, as it will be impossible to proceed without proper documentation; you can also choose to collect the records and deliver them personally.

During the consultation, the doctor will review the information and may perform a physical examination or order more tests. Recommendations made in a written report will be sent to the referring physician-and also to you if you request them.

Sorting Out the Differences

Be sure that the specialists address all treatment options for prostate cancer-surgery, radiation therapy, and watchful waiting-and discuss the advantages and disadvantages of each. If your doctors don’t agree and you don’t know what to do, one or more of the following approaches can help you reach a decision:

Have the specialists explain to you why they came to their respective conclusions.

Suggest that the specialists discuss the matter with each other; sometimes such conversations produce an acceptable consensus.

Ask your general practitioner-or, if you wish, another specialist-to help you sort through the options.

Consider seeking an opinion at a nationally recognized cancer center, such as one affiliated with the National Comprehensive Cancer Network (www.nccn.org).

Try talking to other men who have been treated for prostate cancer.

Don’t panic if you’re having trouble making a decision. Prostate cancer is generally a slow-growing malignancy, which means that most people can safely spend up to three months learning about the disease and consulting with the appropriate specialists.

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2 Comments

  1. Jan November 6, 2009 at 12:29 am

    My husband was recently diagnosed w/prostate cancer and immediately contacted another specialist in another city. We are having a difficult time getting the diagnosing doctor to release his records. Any advice?

  2. Leah November 6, 2009 at 12:03 pm

    I’m sorry about this but it sounds awfully familiar. By all means go through with your plans for a second opinion. Do you know what the problem is? Is the doctor’s office disorganized or do you think they are stalling for some reason? Are they returning your calls? One thing people suggested to me is just showing up at the doc’s office and not leaving ’til you get the records, but for us this wasn’t feasible.

    I can give you some legalese to put in a letter if you want to sound like you mean business, but I’m not sure this would help and might alienate the doc if you need him in the future. This would be my last resort. In fact, I would make it clear to the doctor in question that you are happy with his services, that it’s nothing personal, you are just following suggestions from fellow patients and other sources to see as many PC docs as you can. Make it as *unthreatening* as possible.

    One thing I tried is asking the specialist at the other end to summon the records, but they said they don’t do that sort of thing.

    Also, what state does the doctor practice in? I’d be interested to know what the laws are with regard to patient access to medical records.

    If this doesn’t help I will consult with a patient advocate I know who might have some ideas.

    Let us know what happens.

    Leah

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