Archive for Doctor-Patient Relationship

NOTE: I ADDED INFORMATION TO THIS STORY AFTER I INITIALLY PUBLISHED IT.  PLEASE CONSIDER  THIS NEW INFORMATIONIT CAREFULLY.

The Wall Street Journal Health Blog entry today (Surgery for Prostate Cancer: Comparing Different Techniques, by Jacob Goldstein) concerns the results of a study recently reported in the Journal of the American Medical Association which compared the results of traditional, open radical prostatectomy (RP) with the newer minimally-invasive techniques such as laparascopic RP (LRP) and robotically assisted RP (RALP).

http://jama.ama-assn.org/cgi/content/short/302/14/1557?home

The new study did not address the comparative rates of “oncological efficacy” (i.e. cancer control), as determined by the rates of positive post-surgical margins in the two groups. But previous studies have found that cancer control is *worse* in patients who have minimally invasive RP, *unless the surgery is performed by an exceptionally skilled laparascopic surgeon* — part of an elite clique who have at least 500 surgeries under their belt (no pun intended). Obviously, for a cancer patient, NOTHING is more important than the actual results of his surgery, regardless of the technique used.

CORRECTION: The study found that cancer control was the same in both groups.

With regard to side effects, the study found that minimally invasive surgery resulted in shorter hospital stays and fewer transfusions. But the researchers also found that patients who underwent LRP or RALP had a higher incidence of incontinence and impotence than those who had open surgery. I was aware of previous findings of more “urinary bother” in men who had had minimally invasive RP, but this study went *even further* by adding the ED results to the picture.

[ADDED]

The disparity in reported side effects of genitourinary problems, incontinence and impotence was dramatic: only 2% of traditional RP patients reported persistent side effects versus 5% of MIRP patients.

The researchers stressed that the men who had minimally invasive surgery tended to be of a higher socio-economic class, so perhaps the increased rate of reported side effects had something to do with higher expectations, or maybe it’s that people who are better off complain more.

[ADDED]

Interestingly, there were differences in outcomes based on geographical areas and ethnic groups.  In spite of the fact that black men were far less likely than whites or Asians to have minimally invasive surgery, the struggling city of Detroit was at or near the top of the list.   My guess is this is because a famous minimally invasive prostate cancer surgeon practices in the Motor City, and  the patients are mostly “medical tourists”.

The ultimate meaning of this is that, if RP is in your future, ALWAYS CHOOSE THE MOST EXPERIENCED SURGEON YOU HAVE ACCESS TO, ONE WHO HAS HIGH LEVELS OF PATIENT SATISFACTION, REGARDLESS OF TECHNIQUE. THAT’S HOW YOU WILL ACHIEVE THE BEST RESULT. As Dr. Arnon Krongrad, a well-regarded laparascopic RP surgeon who also founded the New Prostate Cancer Infolink (www.prostatecancerinfolink.net) wrote in this blog, “Find your Tiger Woods and don’t micromanage the clubs.” So if the most experienced surgeon in your area happens to use the open technique, do not despair — in the hands of a competent surgeon it’s not the barbaric picture that some partisans portray it to be. A day or two extra at the hospital, at most.

[ADDED]

BASED ON NEW INFORMATION, I RECOMMEND RECONSIDERING MINIMALLY INVASIVE RP UNTIL MORE OR BETTER INFORMATION BECOMES AVAILABLE.

I know it’s hard to absorb the concept that the newest technology is not necessarily the best one for you. But as the authors of the above study put it, the adoption of the high-tech, minimally invasive approach to RP may just “be a reflection of a society and health care system enamored with new technology that . . . had yet to uniformly realize marketed or potential benefits during early adoption.”

To read the complete story from the WSJ blog, cut and paste the following URL:

http://blogs.wsj.com/health/2009/10/13/surgery-for-prostate-cancer-comparing-different-techniques/

Mar
20

“Prostate Cancer: Men Deserve Better”

Posted by: Leah | Comments (0)

I wholeheartedly agree with the sentiments expressed in the article Prostate Cancer: Men Deserve Better, European Association of Urology, March 17, 2009 (exerpts below). http://www.alphagalileo.org/ViewItem.aspx?ItemId=56307&CultureCode=en. But talk is cheap. The question is, how do we bring about real change (change we can believe in!)? That’s a lot to ask — but heck, we are worth it. We also need a system in which newly diagnosed PC patients are seen by a multidisciplinary team of doctors, consisting perhaps of a urologist, radiation oncologist and medical oncologist. Fortunately, we have such a model now. I received this article a few weeks ago about a new, “patient-centered” unit at UCLA: “Urologic Oncology Institute Launched To Offer Multi-Disciplinary Care, Personalized Treatments To Patients” (March 04, 2009). https://mail.google.com/mail/?source=navclient#search/multi/11fdd1625aa370e2

In this case, a group of urologists (and patients) are pointing out some shortcomings of current PC management, such as a lack of communication between doctor and patient. In order to truly give consent to a treatment such as surgery or radiotherapy, I believe a patient must have been informed of the risks and benefits of all the reasonably accepted treatments available.

The burden is on the urologist to do this, because these doctors are almost always the “first stop” (and usually only stop) for newly diagnosed PC patients. There is an issue of time here, as the doctor can’t spend the whole day discussing PC with the patient, but one advocate has suggested that urologists provide patients with written materials about PC that they then could use for discussion. I think this is a good idea.

Also, the authors lament the poor quality of life that can ensue after prostate cancer treatment. But the comparison with breast cancer treatment is not a good one. Women who are treated for BC may have a better quality of life than men treated for PC for an obvious reason — their urinary and sexual functions have not been interfered with.

What we need is new treatments, applied sparingly, with fewer side effects.

Finally, I want to add a word about two neglected areas in PC treatment. We need to do more to diagnose and treat mood disorders and other psychological issues which may occur in PC patients. Second, we need to draw in a spouse or significant other (if there is one) into the discussion of PC options, and also monitor the partner’s well-being over time.
————————————————————–

“Prostate Cancer: Men Deserve Better”

    “Vast improvements in prostate cancer recognition, management and treatment are needed, according to major prostate cancer groups speaking at the European Association of Urology’s 24th Annual Congress today.

    “… The group’s overarching concern is a lack of clear and consistent information, particularly in areas that affect a man’s quality of life and that of his family. Prostate cancer and its treatments impact on all elements of a man’s life and not just his physical being. Many men experience urinary incontinence and impotence which can severely compromise their sense of masculinity and day-to-day quality of life, affecting their work, social activity and love life. The charter asks for practices to be put into place to better inform and educate men, their families and all those involved in prostate cancer care of the far-reaching effects of the disease and to encourage a more open, communicative and holistic approach to its treatment and management.

    “Tom Hudson, Chairman of Europa Uomo, explains, ‘Our charter highlights the shortcomings in the current management of men with this condition but from a very practical viewpoint. For example, maintaining key relationships, love life and intimacy throughout prostate cancer is incredibly important but can often be overlooked. Many men feel uncomfortable discussing these issues and avoid them altogether. It is an area which is absolutely key to men’s quality of life and there needs to be a cultural shift in the way it is approached and managed’.

    “Louis Denis, Secretary of Europa Uomo, adds “There is still much room for improvement in the management of prostate cancer and the fight against the disease is far from over. Prostate cancer does not receive anywhere near the level of interest and funding it warrants and this must be addressed. With the right holistic approach, men diagnosed with prostate cancer can live long and fulfilled lives. This approach has been taken very successfully to women with breast cancer and we believe that men deserve to be treated in the same way. At the moment, quality of life for men with prostate cancer can be very low, and steps must be taken to recognise and treat the whole person behind the disease, not just the disease itself.”

    http://www.europa-uomo.org/

    http://www.eaustockholm2009.org

Aug
23

How to Find a Good Doctor

Posted by: Leah | Comments (0)

I would like to share with you some general tips for finding/researching doctors which I have accumulated in the last two years based on my experiences with my husband’s illness. (Note that resources vary from state to state.)

*Ama-assn.org — basic info about doctors

*Castle Connolly’s “America’s Best Doctors for Cancer”. Second edition came out recently. The best thing since sliced bread. Lists 2,000 docs in 16 sub-specialties. Go to castleconnolly.com or you can find it in the library.

* Also check out “America’s Top Doctors” (castleconnolly.com, local editions avail. for NY and Chicago.)

* There is also checkbook.org, website of Consumer’s Union, a nonprofit group which publishes books of recommended doctors and hospitals.

** Sometimes local newspapers will publish doctor reviews. (Here, NY Mag. does a yearly feature on this. Search “best doctors” and your area). I have found this method to be extremely helpful. I just used it to find docs in Columbus, OH and Kansas City.

* Try to find a doctor who is associated with a good teaching
hospital.

* Check local PC advocacy orgs. You might want to ask if they know any docs.

* Check your state’s Health Department (state.gov), specifically its division of Professional Licensing, to find out about the doctor’s status, malpractice history, etc. Often the listing will offer you a doctor profile (see below).

* State Physician Profile. Provides extensive info about a particular doctor. This is mandated by law in certain states, such as NY.

** Hospital — critical decision. Don’t just go to the nearest one.
Be wary of small community hospitals. *Look at the US News
(usnews.com) or other hospital rankings. Try to go to a center of
excellence for Urology (or if you have PC, cancer) even if it means travelling somewhere. You can go to usnews.com and look up the details. Don’t rely on your general impression of a hospital. One may be good for one thing and bad for another. Example: MSK and NY Presb are both first-rate hospitals in NYC. However, MSK is rated #1 in the country for the treatment of cancer; NY Presb is #24.

** Convenience should not be too high on your list of priorities. Your goal is getting the best treatment for the illness you have.

** With PC: Don’t fixate on any single option such as robotic surgery (which seems to be robotically prescribed for everybody, regardless of the situation). Do not rule out open surgery or any other treatment before you have found out more about it. Research the pros and cons carefully.

*You might want to consult a medical oncologist for a different viewpoint (e.g., radiation, hormone therapy). Urologists
mostly recommend surgery

** Go see the best general-purpose urologist in your area, somebody who has absolutely no use for you. By that I mean he/she doesn’t need your money, to practice on you, to accumulate another statistic or to add another surgery to the list. A person with many years of experience and an established reputation. Such a doctor is more likely to give you the truth. If you can, go see several. If you have to pay out-of-pocket it’s worth it if you can afford it.

* Don’t just go to the people your doctor refers you to. They are probably his golfing buddies.

* Go to prostate-help.org and read the chapter for the “Newly
Diagnosed.” Pay special attn to the part about selecting docs. It’s like boot camp, but it’s worth it.

* For general info about a doctor you can do a basic google search. Personal details can make a difference. Once I chose a gyn because he was listed online as giving a lot of money to a particular charity (was a tie-breaker).

*For info about a doctor’s scholarly output, try googlescholar.com.

* Many people here admire Dr. Stephen Strum for his long-time
dedication to the PC community, even though some of his ideas are not mainstream. I would go to pcri.org and have a look at Dr. Strum’s list of recommended doctors.

* Read Scardino’s “Prostate Book”. Also Strum’s “Primer on Prostate Cancer”, the most detailed book ever written about this subject (but keep in mind the caveat above). Both are available on Amazon.

* For excellent, objective info on PC, go to endotext.org. This site has comprehensive info for practicing doctors but it is also
understandable to laypeople. Has won awards for quality of content and clarity.

*Ask for recommendations from people in online forums such as this (I belong to 10 PC ones) and from people you know.

*If you have a general practitioner you trust absolutely, ask him or her for some names.

*For patient referrals, search the archives of PC groups for accumulated wisdom.

Aug
10

The “Kiss of Life”

Posted by: Leah | Comments (1)

There is something that’s been on my mind for a long time.  But it’s part of a larger issue.  Let me explain.

About six months ago I heard a commercial on the radio about a state-of-the-art treatment for prostate cancer called “Cyberknife.”  It was being offered at a hospital in Long Island (a suburb of NY) that I had never heard of. 

Well, I sat up straight, and to quote Anatole Broyard, “my mind became immediately erect.”  But my gut reaction was negative: concern, even fear.  I thought, not knowing anything at all about the “Cyberknife,” that folks in the PC community were going to fall for it in a big way regardless of its merits.  That’s because anything healthcare-related that has the word “cyber” in it is “sexy” these days. Same for “robot”.  If you’re a clever marketer, you’re going to find a way to slip those words into your promotional materials

Then it occurred to me, if this Cyberknife is so good, why is it not being introduced by a top-notch hospital?  There are loads of them here in New York.  I did a brief search online and came up with very little info about Cyberknife, none of which suggested that it was superior to current PC treatments.  Seemed that it was indicated for brain tumors.

Recently a friend sent me an article about a robot making rounds for a particular doctor when he is unable to be at the hospital in person.  So the next time you go for a check-up, you may hear the words:

 ”Have a seat.  The robot will see you soon.”

And that would be too bad.  My friend Hughie, who is on ADT and  about to have palliative radiation, told me that his long-time doctor (GP) embraced him the last time they met.  And it wasn’t the first time:  Hughie had once suffered a heart attack in the doctor’s presence, and it was he who gave Hughie mouth-to-mouth rescucitation — the “Kiss of Life,” as he calls it.  And then the doc took Hughie to the hospital in his own car.  

It just happens that the last time I saw my own internist and told him all about dear husband’s, he also gave me a (chaste) kiss on the way out.  It was for me, like for Hughie, “The Kiss of Life.

Now show me a robot who could do that.

Moral is: The best thing you can do for your health is find a doctor who really cares about you.  And it ain’t easy.  I am going to talk a lot more about the doc-patient relationship, because it is so critical to our health.  Please chime in.

Leah