I always advise newly diagnosed men to get a second opinion on their biopsies from a very experienced person. That’s because Gleason scores are notoriously inaccurate. For example, dear husband’s biopsy slides were interpeted by three different pathologists and he was assigned three different Gleason scores. (First biopsy ordered by urologist, second done by hospital pathologist before surgery and finally, evaluation of the removed tissue itself.)
I thought the variation in Gleason scores was due in part to the ineptitude of the pathologists. But it turns out that interpreting prostate cancer slides is more of an art than a science. Here’s an explanation I got from a Johns Hopkins Health Alert bulletin, which presents a discussion with Dr. Jonathan Epstein of JH, a reknowned expert on PC biopsies:
Q. How difficult is it render a definitive diagnosis after reviewing a prostate biopsy slide?
Dr. Epstein. Looking at and diagnosing limited prostate cancer on biopsy is one of the most difficult diagnoses in pathology, for several reasons. For starters, prostate cancer is often very tiny on a needle biopsy. While some other cancers in the body are obvious in terms of their malignancy and how they appear under the microscope, the findings of malignant prostate cancer tend to be extremely subtle. Put these factors together and you can end up with problems interpreting the slides, with both under-diagnosis and over-diagnosis as possible outcomes.
To all the valiant women here, Happy Mother’s Day!
The Courage That My Mother Had
The courage that my mother had
Went with her, and is with her still:
Rock from New England quarried;
Now granite in a granite hill.
The golden brooch my mother wore
She left behind for me to wear;
I have no thing I treasure more:
Yet, it is something I could spare.
Oh, if instead she’d left to me
The thing she took into the grave!–
That courage like a rock, which she
Has no more need of, and I have.
Edna St. Vincent Millay
It’s time to be a little silly for a change.
North Carolina has been in the news a lot because of the Democratic primary that’s being held their today. The good thing about following the presidential campaign is that I’ve learned so much about states I’ve never been to. North Carolina sounds like a dreamy place to live. Except for this factoid: Greensboro, N.C. has been designated the “most impotent city in the US” by a men’s magazine.
Can you just imagine the pundits crunching the numbers about the “impotence vote”? For example, do impotent people vote as a bloc? How can a candidate capture this all-important segment of the population? One thing would be to offer free Viagra and to mandate insurance coverage for ED drugs to all Americans.
My guess is that the impotence vote will go for Hillary. That’s because she was praised at a steelworkers rally this week for her “testicular fortitude”. Whatever you think of the lady, I’ll give her that.
Now for the details of the story:
Men’s Health magazine has ranked U.S. cities according to their impotence rates using one criterion: how many ED drugs are sold in that particular city? In this survey, the “limpest” city award goes to Greensboro, N.C. and the top prize to San Francisco, C.A. If you want to have fun, you might just want to “Go west, young man”. (Would you believe that I read another study some months ago which said the impotence rates are highest in California? That’s because that study used a different measure: they looked at how many men had gone to therapists seeking help for ED. So don’t anybody get insulted too quick. You can cook the numbers anyway you want.)
But there is a serious message in this article. It states that smoking and obesity can cause (or aggravate) ED. I was not aware that obesity raises the risk of impotence by 79 percent! So many men complain of ED after treatment for prostate cancer, but the truth is many of them have other risk factors for this condition. So it’s worth paying attention to. Here’s the article from Men’s Health:
Impotence Hits Where You Live
In this month’s MetroGrades report, we find the cities where men are most likely to go limp
It doesn’t take a degree in marketing to recognize that sex sells cigarettes,what with nearly every ad being some variation on the smokin’-hot-woman-wants-heavy-smoking-man theme. There is, however, a basic flaw in the idea that nicotine equals nooky: Studies show that smoking raises the risk of erectile dysfunction. Witness the city of Greensboro, North Carolina, home of the third-largest tobacco manufacturer in the United States — and, based on our rankings, the nation’s limpest city. In fact, at last count, there were 53 percent more people lighting up in Greensboro than in San Francisco, where guys always rise and shine.We analyzed per-capita sales of the ED drugs Cialis, Levitra, and Viagra for each city, courtesy of NDC Health. And since obesity increases the odds of impotence by 79 percent, we also considered the fat factor, tapping stats from the Centers for Disease Control and Prevention. After the requisite number crunching, we had the hard data to pinpoint the Greensboros — and those cities that are more like bedroom communities.
1. San Francisco, CA A+
2. Colorado Springs, CO A+
3. Denver, CO A+
4. Boise, ID A
5. Oakland, CA A
6. Portland, OR A
7. Providence, RI A
8. Lincoln, NE A
9. San Diego, CA: A
10. Laredo, TX: A
11. New York, NY: A
12. Bakersfield, CA: A
13. Miami, FL: A-
14. Spokane, WA: A-
15. Riverside, CA: A-
16. Stockton, CA: A-
17. El Paso, TX: A-
18. Sacramento, CA: A-
19. Long Beach, CA: B+
20. Los Angeles, CA: B+
21. Tacoma, WA: B+
22. Anaheim, CA: B+
23. Mesa, AZ: B+
24. Phoenix, AZ: B+
25. Austin, TX: B+
Here is some good news on the doctor-patient relationship front. Research has shown that gifts from drug companies influence doctors prescribing habits.
New York Times, May 6, 2008
To the Editor:
The Association of American Medical Colleges should be applauded for its proposal to prohibit companies from offering free food, gifts and other perks to doctors, staff members and students at medical colleges.
The Permanente Medical Group is the country’s largest medical group, with more than 6,000 physicians. We are committed to the principle that the doctor-patient relationship is sacred, and that any decisions about prescriptions must be made without the undue influence of pharmaceutical companies.
Two years ago, we established a policy that prohibits our physicians from accepting any gifts from pharmaceutical representatives — including attending dinners or conferences — because we recognize that the tactics used by the drug companies inappropriately influence which medications are prescribed for patients.
We encourage all doctors to join with us and refuse to be involved in the subtle strategies of the pharmaceutical companies. These strategies have little do with improving education and everything to do with maximizing their profit.
Robert Pearl
Oakland, Calif., April 29, 2008
The writer, a physician, is chief executive of the Permanente Medical Group.
A Huntsman Petrochemical employee is suing the company doctor, claiming the physician ignored warning signs of his enlarging prostate.
Now suffering from cancer, David K. Ray alleges Dr. Lawrence W. Sanders could have helped to halt the disease before it spread, if only he had “recognized the dangers associated with increasing PSA levels.”
According to Ray’s petition, during his employment with Huntsman he underwent yearly physicals, many of which were provided by Dr. Sanders. As part of the physicals, Ray submitted to diagnostic testing of his blood, including testing for his PSA levels.
From 1998 through 2005, Ray’s PSA levels ranged from 1.3 to 1.7. However, in February 2006, Dr. Sanderson performed another physical on Ray and noted his PSA level was 3.0 - more than double the 2005 level, the suit states.
“Despite this alarming increase in Ray’s PSA level, Dr. Sanderson failed to take any further action related to his PSA results,” the suit says. “In fact, Dr. Sanderson misled Ray by ultimately stating to him that the two-fold increase was ‘normal.’”
In June of 2007, Ray was diagnosed with an enlarged prostate and his PSA level was 66.4. He was referred to MD Anderson and learned he had prostatic adenocarcinoma. Since then, Ray has undergone aggressive cancer treatment “and continues to suffer problems as a result of his cancer,” the suit says.
“Dr. Sanders failed to exercise the ordinary care and diligence exercised by other medical providers in the same or similar circumstances, and was negligent … for failing to recognize the danger signs associated with the significant increase in Plaintiff’s PSA levels,” the suit says.
Ray is suing for past and future medical expenses, pain, mental anguish, impairment and disfigurement, plus all court related costs.
Here’s the headline you’ve all been waiting for. And the news comes from a prestigious source: Duke University. Read on:
Exercise may lead to faster prostate tumor growth
DURHAM, N.C. — Prostate tumors grew more quickly in mice who exercised than in those who did not, leading to speculation that exercise may increase blood flow to tumors, according to a new study by researchers in the Duke Comprehensive Cancer Center (DCCC) and the Duke Prostate Center.
“Our study showed that exercise led to significantly greater tumor growth than a more sedentary lifestyle did, in this mouse model,” said Lee Jones, Ph.D., a researcher in the DCCC and senior investigator on this study. “Our thought is that we may, in the future, be able to use this finding to design better drug delivery models to more effectively treat prostate cancer patients, and those with other types of cancer as well.”
Are all you folks applauding yet? Get off the treadmill and park the bike in the garage.
Tomorrow we will find out that ice cream, french fries and hot dogs are a cure for PC. Better than eating flaxseed, isn’t it? Or soy?
I want to share with you a little story that relates to this. I was oh so-o-o prescient.
Last June, Memorial Sloan-Kettering sponsored a rally for cancer survivors. Ted and I went and had a nice time, but what stands out in my mind is what I was thinking at the time. Here’s what I wrote back then:
The Survivor event started out with a 5-mile “Walk for Cancer”. Because Ted is in good shape I thought it would be nice to show the world what a 55-year old cancer patient really looks like. So I suggested to him that he do the Walk.
He replied:
”Why should I walk for Cancer when I can get it by doing nothing?”
Why indeed. Then what really freaked me out was the following thought: DH has had 2 cancers (melanoma, PC) plus a recurrence. But he has *not* been sitting around. He goes to the gym 4x/wk and has been doing this for a long time. IS IT POSSIBLE THAT DH GOT THE CANCER FROM EXERCISING? Wouldn’t surprise me.
Now I find out I was right.
The comedian Redd Foxx once said that people should enjoy themselves, indulge in all their bad habits, because when they die at least they’ll know WHY.
With T. I didn’t know. But maybe now I do.
I have to ask myself, isn’t this all so silly? What is the utility of publishing a study which suggests that exercise worsens prostate cancer? Should a man give up the benefits of keeping in shape just because a bunch of very active mice got aggressive PC? I don’t think so. And there have been other studies that suggested that *being sedentary* is the kiss of death for PC.
My dear husband gets a lot of emotional relief from exercising. When he is not working (in the office), he is working out. At one point I was concerned about him — I thought maybe he was exercising too much. I have a theory: that spouse sees the gym is a sort of sanctuary. He feels that the Angel of Death can’t get him there! I’m convinced of it. And I hope he’s right. (And I will see to it that the Angel of Death doesn’t get him anywhere.)
Bottom line is, spouse will continue to work out.
Because he’s a man, not a mouse.
[For an introduction to this article, please read the previous posting.]
Sandwich Generation caregivers
Minnesota Public Radio, April 17, 2008 by Nanci Olesen
“I can hold her hand and you can feel that there’s something much deeper than words can ever express, so that’s how we communicate. But she’s slipping away.”
Mary Louise Clary is describing what it feels like to be with her mom. Her mother has had Alzheimer’s disease for more than 6 years. She still recognizes Clary, and they spend time together every day, holding hands.
Several years ago, Clary helped her mom and dad move from their home on Cape Cod back to Minnesota. Soon after that, she found a nursing home for her mom and helped her dad start his solo life at a townhouse across the yard from Clary’s home.
Clary has a son in high school and one in college. She’s recovering from breast cancer. She quit her job so that she could attend to her parents and be there for her boys. She’s trying to take care of everyone and yet let them have their independence too.
Although she doesn’t want to interfere with her dad’s privacy every minute, Clary needs to know that he’s okay. He gets Meals on Wheels every day. The meals come to a cooler that her dad puts out by his back step each morning. Clary can see the back door of her dad’s townhouse from her kitchen window.
“So every morning I look out to see if the cooler’s out there to see if he’s okay so that I don’t impose on him by constantly calling saying ‘Dad, are you all right? Did you get up this morning?’ But the cooler is the message,” says Clary, “I know if the cooler’s out, he’s okay.”
There are often tough decisions that caregivers need to make, while trying to help their parents feel like they’re still in charge. Women like Mary Louise Clary are called Sandwich Generation caregivers. They are women in their forties and fifties, who are sandwiched between caring for their own kids, caring for their elderly parents, and often holding a full time job.
It’s mostly women who are “sandwiched,” according to Kathryn Ringham, a caregiver coach for the Wilder Foundation’s Caregiver Services.
“Even when men are involved it’s the women who tend to do the most challenging tasks related to caregiving,” says Ringham, “The men typically get involved with the finances. They may be in the position to do some of the care coordination, whereas women are doing the dressing, the feeding and the more challenging personal care tasks.”
Ann Romanczuk was reluctant to become a caregiver.
“My mother has always been kind of a difficult woman, always kind of prickly,” says Romanczuk, “She’s always had a little bit of paranoid energy and so has just been a very hard person to deal with. So for me to have to assume a caregiving role at the beginning was very hard. I had invested a lot of money in therapy to not be taking care of my mom and so to know that this is what I need to do at this stage of my mom’s life required a whole paradigm shift for me and a lot of work to forgive her for who she was not able to be in my life.”
Romanczuk was surprised to realize how helpful it was to talk to others who are caring for their parents. But Romanczuk didn’t feel like she had time to meet with others. She has a full time job. She has a teenage daughter. But she started meeting casually with friends who were also caring for their aging parents. Soon the group had a consistent weekly meeting.
“We’re all at different points on this journey and it’s sort of like we’re helping each other pick our way through the wilderness together,” she says. “Whatever anybody’s going through somebody either anticipates going through it, or has gone through it. So we are able to be a touchstone for one another.”
When people start caring for their parents, they often underestimate how long the commitment will last. Kathryn Ringham says that many people imagine it will just be a year or two that they’ll be helping their parents. But often it’s four years, or eight years, or more.
In order to manage the extra time and energy involved in caring for elderly parents, social workers and professionals who work with caregivers want sandwich generation caregivers to seek out the resources that they need to stay healthy.
One of the strongest issues that’s emerging is just the physical and emotional long-term consequences of being a caregiver,” says Kathryn Ringham, “Caregivers have a higher percentage of alcoholism, of use of psychotropic drugs and medications. They experience higher anxiety, higher stress.”
Ringham wants caregivers to know that they can find help with many of the physical needs that their parents have: a home health care nurse, or Meals on Wheels. They can also get counseling and support for themselves AND for their parents. They can get help with their parents’ finances. Many of these services are based on ability to pay.
Within the next twenty years, one in five Americans will be 65 or older. And they will need care. 80% of care to elders is provided by family and friends, according to The National Alliance for Caregiving.
According to The National Institute on Aging, the U.S. will need a 40% increase - 20,000 additional - social workers who are trained in the needs of elders and their caregivers.
Professionals recommend that each family devise a caregiving plan. They say the conversation can begin casually, at the next family gathering, or by email.
And they say that caregivers need to recognize that they need help.
Resources:
Help Starts Here: from The National Association of Social Workers–(includes resource directory)
National Alliance for Caregiving
National Alliance for Caregiving: resource page
Wilder Foundation Senior Outreach
Family Caregiving Center: University of Minnesota
AARP: Family Caregiving
Survey of Social Workers Finds Families Ill-Prepared for Care of Parents
The work of taking care of family produces stress on time, finances and emotions: Kate Hughes/ The Independent
Generation juggles children, parents: essay by Anne McGraw Reeves: Newhouse News Service: March 4, 2008
Working Couples Caring for Children and Aging Parents: Effects on Work and Well-Being
Caring for Your Parents: a PBS documentary (April 2008)
Studies have shown that wives of PC survivors are often under a lot of emotional strain. And the wife’s mental state apparently affects the health of the man. So I asked myself, “Why are we ladies so stressed out”? Often because we are what one article I came across (Minnesota Public Radio, April 17, 2008 by Nanci Olesen ) refers to as “sandwiched-in caregivers.” These are “women in their forties and fifties, who are “sandwiched” between caring for their own kids, caring for their elderly parents, and often holding a full time job.”
[Please read the article, “Sandwiched-In Caregivers”. I am posting it in its entirety in the entry following this.]
I can totally relate to this article because I’m in my forties and, although my husband had a stage-3 melanoma some years ago and has had a recurrence of PC, by far the hardest thing I have ever had to do is care for my elderly mother.
I’ll start at the beginning. My father had a severe stroke on his 80th birthday four years ago, and he spent a year in a hospital (mostly in ICU) before he died. He was in very bad shape, tethered to a ventilator, but unfortunately for him, conscious and aware of his situation.
Because the care he got in the hospital was substandard, my family decided that we would have somebody staying with Dad *at all times*, 24-hours a day, seven days a week. So I spent a lot of time sleeping on chairs.
But it was worth it. Caring for someone you really love can be a really good experience, you develop a sort of holy communion with the person. I sometimes replay in my mind simple gestures I did for my father like putting a wet cloth on his feverish forehead. It gives me pleasure to think that I was able to alleviate a little of his pain.
The problem was that, after my father died, my very intelligent, charming mother, who speaks 8 languages, fell to pieces. She was afraid to be by herself for a moment. Add to that that character traits tend to get more prounounced as a person ages, and my mother just became a bit more paranoid and argumentative. Keep in mind that I really love this woman, but I have also said to myself many times, as sad and ironic as it is, that my mother is going to be the one to finally do me in. I know there are words for children killing their parents, like parricide and matricide, but what do you call it when a mother destroys an adult child? Not infanticide, obviously. I don’t know.
Once about 2 years ago, Mom was at my house having an argument with me. She wanted me to do something that was impossible for me to do. Namely, to drop everything, take time off from work and go stay with her in a country cottage my cousin had lent her. We don’t even have a car, and it cost about $300/day to rent one. In any case, my mother wouldn’t let up. If I said, “white”, she said “black”. Then suddenly, in middle of this conversation, I got a fearsome headache and went to my bedroom to lie down. It turned out that this was my very first migraine.
Originally, I didn’t know what was wrong with me, I had pain around my eye, but after seeing many doctors, two neurologists said I had classic migraines. The doctor was cautious however, because he said it’s very unusual to develop migraines in your 40s, especially where there’s no family history. I told him simply, “You don’t know my mother”. It turned out that he was right because the brain scans ruled out anything else.
Some time ago, one of my readers wrote me a letter asking, “What’s a man with PC to do when there’s no woman in his life to comfort him?” I actually responded (with the Henny Youngman line), “Take my mother, please”. Then I got serious.
If you think it’s easy to talk about this, you are wrong. I feel so guilty, I’m convinced the sky is going to fall in on me any minute. But this is my reality. And maybe yours.
Fortunately, my mother’s story had a happy ending. We arranged for her to have a full-time home attendant and somebody to sleep over at night and that helped enormously. It gave her companionship and a feeling of security.
My mother is healthy as far as I know, but like her neurologist told me, “She’s not 21″. In fact, she’s 84 and she makes perfect sense but she often forgets words. She is failing in small ways, and as a child, it is very painful for me to observe this.
Well, that’s my story. I’m going to provide you with the entire ”Sandwich Generation Caregivers” article as it appeared on Minnesota Public Radio, but I am going to do it in a separate post. You might recognize yourself in those stories. It also lists numerous resources for caregivers.
I got a letter from Allegra Poggio, an advocate with the Men’s Health Network (MHN), who asked me to pass on the following very important information to you and ask you to sign a petition on behalf of men with prostate cancer who are receiving hormone therapy. This treatment is difficult enough without having the government decide which medications a patient should take, based on cost – but that’s what Medicare is doing right now, interfering with the doctor-patient relationship. Hormone therapy for prostate cancer is no place to cut corners. Waste can be eliminated elsewhere.
Please everybody, educate yourself about this issue and sign this petition:
Click on http;//www.menshealthpolicy.com/advocacy/lcaPetition.php
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I also want to mention that Malecare, my sponsoring organization, has a petition circulating requesting that the government give parity in funding for breast cancer and prostate cancer. So while you’re at it, sign that one as well. Ask the government to make prostate cancer a national priority.
Click on http://www.prostatecancerpetition.org/
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Message from the Men’s Health Network:
One of the important policy issues highlighted on the MHPC website is the issue of access to vital drugs for prostate cancer patients on Medicare. . .
Right now, Medicare applies a practice called “least costly alternative” (LCA) to one and only one class of drugs - hormonal drugs - which are used by prostate cancer patients to fight this disease. This policy allows the Centers for Medicare and Medicaid Services to deny payment for the additional cost of a more expensive prostate cancer drug therapy if a comparable therapy costs less.
MPHC recently began a petition to US Congress to demand that Medicare repeal the LCA policy for prostate cancer drug therapies. Withdrawing Medicare’s LCA policy is needed to ensure patients have equitable access to “Vital Prostate Cancer Drug Therapies” and also because:
* A full range of approved drug therapies are currently available to treat prostate cancer
* Medicare’s LCA policy allows the government to interfere with prostate cancer patients’ access to those approved therapies solely due to cost
* LCA policy unfairly singles out prostate cancer patients, disproportionately affects low-income patients, and does not apply to other conditions
* The government should not interfere with treatment decisions made between prostate cancer patients and their physicians
I am including part of a conversation with Theresa Morrow, Director, Marketing and External Affairs Men’s Health Network:
“LCA is very problematic because it targets prostate cancer therapy alone, and it assumes that all prostate cancer patients and hormonal drugs are the same. In fact, these patients’ needs vary greatly, and the drugs have never been determined to be equivalent by the Food and Drug Administration. Essentially, you have the government dictating which drug a doctor can use with a very sick patient—it’s a one-size, fits-all mandate based on cost.
“Q: What are some of the detrimental effects of LCA on prostate cancer patients?
“A:. Unfortunately, there are several serious downsides to LCA. For one, these hormonal drugs are available in different size needles, they are administered differently, and they have different dosing regimens (monthly, yearly etc). Prostate cancer patients can be very frail, be in pain, or may bleed easily due to blood thinning agents. A patient may have trouble getting to his physician’s office. A patient and his physician may feel strongly about needle size, length of therapy, or whether an injection or an implant is preferable. Medicare’s use of LCA can steer a physician toward a choice that is not clinically appropriate for a particular patient.”
“To obtain a non-LCA drug, the patient will have to pay the difference in cost plus his usual copayment. This means that many low-income patients will be disadvantaged, creating a “haves and have nots” scenario.
If you have not already signed the petition, go to:
A vigilant reader sent me a copy of this notice. There are still a few days to take advantage. Urge all your acquaintances to get tested. And congratulations to the Chicago Sun-Times for offering this life-saving service.
The prostate cancer-detecting PSA blood test, which measures levels of prostate-specific antigen, will be offered for free throughout the Chicago area April 21-26 by the Sun-Times, the National Prostate Cancer Coalition and several local hospitals. Find your nearest location by clicking here. http://jump.suntimes.com/list.cfm?tag=prostate No appointment is necessary. Walk-ins are welcome at every location.
