Archive for December, 2009

Cancer marketing

December 19, 2009

Just before leaving for University of Michigan  this morning for a second CT scan, I logged onto my computer to check the news headlines.

Top story on the New York Times website was this article, headlined “Cancer Center Ads Use Emotion More Than Fact” and with this as the money quote:  

“There seems to be a disconnect between the business end of the cancer treatment industrial complex and the physicians on the front lines treating patients,” said Dr. John D. Birkmeyer, a cancer outcomes researcher who is a professor of surgery at the University of Michigan Health System.

And, oh, by the way, the story was illustrated with a U-M ad promoting its success in treating skin cancer.

The gist of the story: Hospital marketing compaigns tend to focus on individual success stories coupled with hyperbole about the overall wonderfulness of their health system. But the ads tend to overreach, the story said. Another excerpt:

If a drug maker ran an ad for a cancer medicine, Food and Drug Administration regulations would require the company to be able to support any superiority claims with substantial evidence from rigorous clinical studies.

But federal agencies cannot limit the ad claims made by nonprofit medical centers about their ability to cure people of diseases like cancer, according to the government’s main ad regulator, the Federal Trade Commission.

Cancer experts interviewed for this article say there are no comprehensive statistics showing that any one elite medical center has better overall cancer success rates than its competitors.

Yet the advertising campaigns of prestigious cancer centers often use superlatives, promote the latest technologies, promise unique care or recount miraculous patient recoveries. Based on such ads, a consumer might reasonably assume that the medical profession has made more progress in the decades-long war on cancer than the more sobering facts would show.

At any rate, it was a very interesting read. And sort of ironic that I saw it on the same day that I was headed to one of the centers cited in the story.

The CT scan went fine, incidentally, although the solution I had to drink is still making me feel a little queasy tonight. Harold was a real dear and navigated the snowy roads for the 200-mile round trip.

Basically, I did this test on the assumption that U-M has a better CT scanner than here. Also, they did chest and pelvis as well as my abdomen, while the scan I had before was just the abdomen. I should find out the CT results in a week or so.

Trying to count my blessings

December 18, 2009

Turns out that having the port installed was a total piece of cake. My shoulder feels a tad achy, but I’ve had dental procedures that were far more traumatic. In fact, after I came home from hospital, I walked the dog and then went to Kat’s school conferences.

Up next: Tomorrow I go to Ann Arbor for the second CT scan and then I start chemo on Tuesday.

I’m feeling very, very grumpy about the whole chemo thing. I’m grouchy about the time commitment, the possible side effects, the overall disruptive, etc., etc., etc. The fact that I don’t have any symptoms or a dire prognosis — i.e., a tumor that needs to be zapped out — makes me even more cross (although having something show up on the CT scan would seriously bum me out– and I’d much rather be cross than depressed).

At any rate, I have been trying to figure out the silver lining here. To that end, here’s my Top 10 list of the possible positive consequences of having chemo, delivered in David Letterman fashion.

10. Six more months of playing the cancer card when I don’t want to cook dinner.

9. Someone else will have to walk the dog.

8. Have a valid excuse for not going out in the cold.

7. Have valid excuse for mid-winter vacation in warm climes.

6. Bought really cute boots to keep my feet warm this winter.

5. May encourage me to eat healthier.

4. Sources and angry phone callers may be nicer to me, especially if I work chemo into the conversation.

3. Understand they offer free foot and hand massages at the West Michigan Cancer Center.

2. Could lose weight.

1. To echo Gail Collins of the New York Times: I don’t believe that everything in life happens for a reason, but I absolutely believe everything happens for a column.

Off to the hospital again

December 17, 2009

Toledo is not exactly a top tourist site, but I’ve  spent the past two days here with my BFF Elaine, and we’ve had a fine time Christmas shopping and going out to eat, not to mention a movie and a visit to the Toledo art museum.

We picked Toledo as a convenient halfway point for a get-away — Elaine lives in Pittsburgh. We break camp this morning, and I’m heading straight to Bronson Methodist Hospital for outpatient surgery to have my Port-a-Cath installed.

This will be a semi-permanent intravaneous line near my collarbone that will save my hands from poked all to hell during chemotherapy.

My biggest problem right now:  Those drinks we had last night have led to a very dry mouth this morning, but I can’t drink or eat anything this morning because of the surgery. Serves me right, I guess ….

Remembering Audrey

December 15, 2009

It was a year ago today that my cousin Audrey died of colon cancer.

From what I’ve been told, she had been having abdominal pains for several months, but her doctor couldn’t figure out the cause. In late January 2008, the pain got so bad that her husband  Mike took her to the emergency room.

This time, the doctors did a more thorough check — and biopsied something in her liver that had been ignored before. It was cancer that had started in the colon and spread to the liver and lungs.

It was too much to cut out, and so she had chemo through the spring to shrink the tumors. It actually worked for a time — at the beginning of the summer, she was declared in remission. But a month later, the pain came back and it was clear the cancer was spreading once again. By fall, she went into a tailspin.

The day after Thanksgiving, she and Mike and their four young children went on a trip to Disney World, a community-paid Make A Wish sort of thing. Audrey was too sick to spend much time at the amusement park, and her sister Lori went along to keep Audrey company, while Mike took the kids around Disney. But at least they all had dinner together every night, and I’m told the kids had a good time.

When they returned to Michigan, Audrey went straight to the hospital, where she stayed until she died two weeks later.  She was 42 — she and I had the same birthday and she was exactly seven years younger than me.

Her four children were at the Layher Christmas party on Sunday. The two boys are in 10th and eighth grades this year. The two girls are in fourth and sixth.  They looked happy and healthy and in good spirits. It was a reminder that even when somebody dies, life goes on.

A Layher Christmas

December 13, 2009

Today was either the 51st or 52nd annual Layher family Christmas party in Jackson. (The aunts can’t remember if the first party at Aunt Bernie’s house was in 1957 or ’58).

At any rate, it started out as a holiday potluck for my mother and her six siblings and their significant others and has morphed into a grand holiday tradition. For years, it was held in somebody’s home (usually a paneled basement or the “rec” room, as they were called then.) Then as the 23 grandchildren became teenagers and, shall we say, became more rowdy, it moved to a banquet hall to provide more room and perhaps a sense of decorum. (I could be mistaken, but I think it was moved the year after we kids held a boys-versus-girls food fight in Aunt Nellie’s basement, in which we pelted each other with black olives.)

Much has changed over the years. Grandma Layher, the family matriach, died years ago and of the original seven siblings, only three are still alive, along three of their widows. Three of the 23 cousins in my generation also have passed away. Still, this year’s family directory lists  to 97 family members, including spouses and 45 cousins in my children’s generation, as well as the first member of the next generation — Serenity Renee, Aunt Bernie’s great-granddaughter.  (Serenity was among the no-shows Sunday — she and her parents live on an Army base in Colorado.)

But despite the membership changes, some things have stayed the same at the Layher Christmas party. We ate. We played Bingo. We sang Christmas carols. And, of course, Santa showed up as everybody sang, “Here Comes  Santa Claus”   and all the younger kids get a present and some personal face time with St. Nick.

What’s also stayed the same: No drama. The Layher Christmas party is famous for its civility. Nobody gets drunk. Grudges are not aired. Everybody gets along.

You may call it boring. I call it a reason that I really do love and appreciate being part of the Layher family.

Taking control, update

December 12, 2009

In my last post, I mentioned that a friend who had colon cancer in 1991 followed the doctor’s orders about chemo and “that was that.”

Not quite, he points out. His chemo treatment was prescribed for a year, and he stopped after four months, much to his doctors’ dismay. His oncologist told him he was making a big mistake, but my friend thought his body had had enough.

He turned out to be right. At the time he was diagnosed, he was given a 20 to 30 percent chance of surviving beyond five years. But the cancer never came back.

Taking control, sort of

December 12, 2009

My husband and I lunched with a friend today who had Stage III colon cancer in 1991. After I described my various chemo-related dilemmas, my husband asked the friend how he weighed the options in his own case.

“I didn’t,” the friend said, because no options presented. The doctors said what they were going to do. The friend did it. That was that.

It wasn’t that my friend was an unusually passive patient. In fact, he’s a very bright guy — and a medical journalist, to boot. But that was a time when doctors ran the show and patients had minimal input.

Times have changed.

Certainly, I’m seeing now how medical care has become more patient-driven. Patient records, for instance, were once treated like state secrets as far as the patient was concerned. By contrast, my surgeon handed me Xeroxed copies of my pathology reports and I was given my CT scan on a disc, if I care to look at it. Compared to my friend, I’ve also been given a menu (albeit somewhat limited) on treatment options.

On one hand, there’s no question that I feel like I’m in over my hand in making these decisions — how do I know any better than a doctor? On the other hand, it underscores that medicine is as much art as science, and there’s often not a definitive “right” answer.

Here’s an example. I recovered from my colon resection surgery much quicker than expected, and my sister Marcia has speculated that one reason was the surgeon’s very aggressive stance on post-surgery pain control. For several days, I was hooked up to an epidural that pretty much left me pain free — and because I wasn’t experiencing pain, I was much more willing to leave the bed and walk around, things that contribute to a quick recovery.

But the post-surgical epidural is not standard treatment. It’s a choice left to the surgeon, and many don’t go that route because in some cases it can complicate recovery.  (For instance, it can make the legs so numb that sitting up or walking becomes impossible.) So I got  lucky: I happen to get a surgeon who prescribed the epidural, and I happened to be one of those patients where it works like a charm.

On my chemo, I’m sure there would be broad consensus among oncologists that I should have it done, that the benefits outweight the risks. And the protocol seems to be pretty standard — six months involving certain drugs. But there are variations on a theme within those broad strokes, and different doctors have different preferences. My challenge now is to make sure the chemo works out as smoothly as the surgery — that my doctor’s preferences line up with my own needs, and so I’m spending a lot of time on the Internet, reading everything I can find on the colon cancer chemotherapy.

For the surgery, I got lucky.  For chemo,  I’m not just leaving it up to luck.

No snow day for cancer

December 10, 2009

The wind chill was below zero, the roads fit the classic definition of “snow-covered and slippery” and Kat’s school was canceled, but I still ventured out today on various medical errands.

In the morning, I had an appointment with my surgeon for a consult on implanting the Port-a-Cath, which will be the entryway for the chemo drugs. (After living for decades with minimal contact with the medical profession, at least professionally, it seems weird to have “my” surgeon, “my” gastroentrologist, “my” oncologist, etc.) The explanation of the Port-a-Cath procedure  took about two minutes, and I spent the bulk of the appointment briefing him on what the two oncologists had to say earlier this week. 

I asked him his opinion about the PET vs. CT scan dilemma, and he sided with the University of Michigan doc that a CT scan would be  more valuable. (“I can guarantee” that the PET scan isn’t going to show anything new or different, he said.) I also mentioned that the U-M doc suggested that I high-tail it to Ann Arbor for treatment if cancer spreads to my liver or lungs. “Oh, I agree with that,” the surgeon said. “In fact, I believe that so strongly that I’d drive you there myself.”

In the afternoon, I want to my family doctor’s office for a H1N1 shot and then to the Borgess VNA for a seasonal flu shot — the family doc had run out of seasonal flu vaccines and the VNA doesn’t stock H1N1 shots. Between long waits and crappy roads, that pretty much shot my afternoon.

I also got some more feedback on Eloxatin, the chemo drug that causes the neuropathy and cold sensitivity. This the drug that the U-M doc warned me about, and today I got similar warnings from someone who had chemo several years ago (she ended up not taking Eloxatin at all) and the widower of my cousin Audrey, who said she suffered from Eloxatin-induced nearopathy  right up until she died. It’s not hard to find similar stories on colon-cancer websites, of people who stuck with Eloxatin despite experiencing side effects because they were so fearful of the cancer — and while they got their cure, they ended up with excrutiating pain in the hands and feet long after the chemo treatments.

The lesson here, I think, is that with chemo, there really is a risk-benefit analysis. My intention is to try the Eloxatin, but be willing to dial it back or heave it overboard if it causes too many problems. According to the U-M doc, it’s the less important of the drugs in the chemo cocktail and by far the most toxic.

One thing to remember is this: For every six people with Stage II colon cancer,  only one actually benefits from the chemo. Four of the six actually don’t need the chemo because surgery removed all the cancer; one of the six will have a reoccurrence regardless of  chemo, and than there’s the one person where chemo does prevent reoccurrence. The problem is there’s no way to tell now which category a patient is in: Are they part of the already-cured group? The person where chemo won’t do the trick? Or the person where chemo makes the difference?

Preparing for Round Two

December 9, 2009

This was suppose to be a lazy day, punctuated by lunch with Marcia.

The lunch outing was the highlight of my day. But instead of spending the rest of it on the couch watching season three of “The Wire,” I spent literally hours preparing for the next chapter of my medical travails.

Checked off on today’s to-do list:

— Called Aetna to find out of they would pay for a second CT scan at University of Michigan, as suggested by the U-M doc. Turns out I’m pretty much golden on the insurance front: No limit on CT scans whatsoever, and since I’ve hit my deductible, they’ll pay 100 percent.

— Made arrangements for outpatient surgery next Thursday to implant a Port-a-Cath in my shoulder to provide a semi-permanent entryway for the intravaneous drugs I’ll give during chemo. (I had thought it would be a quicky procedure in the doctor’s office. Turns out it has to be done at the hospital, and will almost take as long as the colon resection.)

— Arranged to get seasonal flu and H1N1 shots on Thursday, before I start chemo and my immune system gets all compromised. Because of vaccine shortages, I actually have to go to two different sites for the shots.

— Had long talk with West Michigan Cancer Center oncology nurse about the chemo details. Sounds like it will start the week of Christmas or New Year’s.

— Talked with one of my editors about how I can fit chemo into my work schedule. I have to say that the Gazette has been nothing but hugely supportive, encouraging and flexible. The idea now is that I’ll work the Sunday shift on the weeks I have chemo to free up some time during the week for me to get the treatment and recuperate.

— Polled various friends and family members on the big dilemma that I need to resolve by tomorrow: PET scan or CT scan?

The dilemma is this: The K’zoo cancer doc scheduled a PET scan for Tuesday. But the Ann Arbor doc expressed major skepticism about PET scans and suggested a second CT scan, but at University of Michigan, which has a CT machine with top-quality resolution. 

The point of either test is to see if there’s any more small tumors floating around. I need to have one of those tests done quickly, so that it can be used as a baseline for comparison after chemo. And you can’t mix or match methodologies or machines; whatever I have done this month needs to be repeated in the summer or sooner for accurate comparison. 

The local doc still wants the PET scan; he argues that it shows some things that don’t show up on CT scans and would provide some new and different info. But the U-M guy, to me, makes a convincing argument: The downside of PET scans is a lot of false-postives and a top-quality CT scan will show smaller tumors than a PET scan, he says. One thing that especially made sense about the U-M guy’s argument is that it’s as much about the quality of machine as the methodology.

One option is to do both. But that seems a waste of Aetna’s money. (Each test is thousands of dollars.) It also is unhealthy, considering both develop a wallop of radiation — about the equivalent of 15 chest X-rays.

 So I need to choose.

My inclination is to go with a second CT scan. I was convinced by the Ann Arbor guy’s arguments. Also, if the cancer progresses, I’ll end up at U-M anyway and having those high-resolution CT scans might come in handy.

On the other hand, I don’t want to piss off the local doc — the person I’ll actually be working with for the next six months. In addition, since he’s the overseeing the case for now, part of me says he should get to choose what tests should be done. I really don’t want to tie his hands.

What to do, what to do ….

Visit with the cancer doc, Part II

December 8, 2009

Monday, I saw an oncologist in Kalamazoo to chat about where I go from here. Today, I saw an oncologist at the University of Michigan Cancer Center, William Ensminger, for a second opinion.

Unlike Vemuri, the Kalamazoo doc, who handles all types of cancer patients, Ensminger specializes in gastrointerestinal cancer. So while Vemuri has certainly seen his share of colon patients — colon being one of the most common cancers around — this is Ensminger’s specialty, and he also benefits from working at one of the preeminent cancer hospitals in the nation.

It was worth the drive.

Where Vemuri is very personable, Ensminger is gruff and curmudgeonly. But I liked them both, and it was interesting to hear another perspective.

Ensminger asked about Vemuri’s recommendation, and made several observation.

The gist: Chances are excellent that I’ll survive the cancer, so my bigger issue now is making sure that the cure isn’t worse than the disease — i.e., the recommended chemo treatment can have some “devastating” side effects, he warned.

Specifically, the neurotherapy in the hands and feet caused by one of  the main drugs, Eloxatin, can be crippling and permanent, he said. He recently treated a teacher who had to retired after her chemo because she lost use of her hands.

The way to avoid that scenario, he said, is to closely monitor the tingling in the hands and feet. It’s a common side effect for several days after the drug is administered, but it should go away at some point between treatments. If the tingling lasts more than four or five days, he said, than Eloxatin should be pulled entirely from my chemo cocktail because my body can’t handle it.

He said that Fluorouracil is the most important drug in the mix anyway, and provides about 80 percent of the benefit from the chemo treatment. When everything is said and done, he added, Eloxatin lowers the risk of cancer reoccurrence about 5 percent — adding that’s not worth permanent disability.

Ensminger’s other points:

— He advised against taking the Fluorouracil in pill form because it seems to heighten the side effects. Better to take that drug intravaneously along with the Eloxatin. (Incidentally, I misunderstood Vemuri yesterday. The intravaneous part would happen in once a half-day every two weeks, not every three, over a six-month period.)

— Ensminger seemed very, very skeptical about the benefit of getting a PET scan. From his standpoint, PET scans are a perfect example of why American health care is so expensive — somebody invents an expensive test and everybody else feels the need to use it. He said that CT scans are more precise in finding tumors, and PET scans generate too many false-positives. He also threw in the observation that the quality of CT scans can vary a lot, but that U-M’s CT machine is so clear “that people come here from Boston to use it.” Rather than get a PET scan in Kalamazoo, he said, it would be better to get a CT scan at U-M  — if I can convince Aetna to pay for another CT scan this soon after the one done in October.

— Although it was clear that Ensminger views U-M as a superior facility, he said that my case was standard enough that getting treated at the West Michigan Cancer Center should be fine. However, if the cancer reoccurs, than I should hightail it to U-M.

He also said that I should know “sooner rather than later” if the cancer was going to spread. If I have a clean bill of health in eight months, he said, there was a pretty good chance that I’m cured. What does that clean bill of health entail? A clear CT scan and low numbers on the CEA blood test.

Incidentally, Ensminger retrieved the results of my CEA blood test from Monday. (This test is one marker that cancer is somewhere in the body.) Before he made that phone call, he said the number should be below 3. Above 5 is “worrisome,” he said, and above 10 “you should be really worried.” My number: 1.5.

Finally, Ensminger offered some perspective on how quickly colon cancer treatments have evolved and improved. If I been diagnosed with Stage III cancer at the beginning of this decade, he said, “we would have told you that you have a 50-50 chance “of being alive after five years. By mid-decade, that had improved to about an 80 percent five-year survival rate, assuming chemotherapy. But for someone like me who is diagnosed now, he said, “I’d say you have about a 5 percent chance” of dying.  (He pointed out that official mortality rates by necessity lag medical advances; the numbers quoted to me on Monday by Vemuri are based on people first diagnosed at least five years ago.)

One reason is not just better strategies in preventing reoccurance, but also  better treatments for those who have a reoccurrence in the liver and/or lungs and move into Stage IV. “That used to be a death sentence,” Ensminger said, but U-M is now doing a new bioradiation treatment that seems to be doing a remarkably effective job at zapping out those liver/lung spots if caught early enough.

Bottom line: Even if my cancer moves into the liver or lungs, I shouldn’t call hospice — instead, I should call the University of Michigan Cancer Center ASAP.