Don't Write Me Off

I originally wrote this piece in the fall of 2004, after the M.D. Anderson Cancer Center in Texas refused to see me for a second opinion. I submitted the story to Newsweek’s My Turn column, but Newsweek didn't run it, so it is appearing here for the first time.

One irony: If I had told the appointment-setter I first talked to at M.D. Anderson that I was considering going there for treatment, she would have made an appointment for me. She told me as much. But since I only wanted a second opinion, no room at the inn.

I also tipped off the Houston Chronicle about the situation at M.D. Anderson, and reporter Todd Ackerman wrote a story in which I was quoted. The story is mostly accurate, but Ackerman played down the financial reasons for M. D. Anderson's decision, even though he had off-the-record sources that told him, as they told me, that the major reason for the decision was financial: the cancer center doesn't make enough money off second opinions. Second opinions are a kind of "loss leader" intended to bring new patients into the center, to put the situation in business terms.

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When I was diagnosed with breast cancer six years ago, I got a second opinion, and then a third. And I've always been glad I did. The doctors I consulted for my third opinion, at the University of Washington Medical Center, confirmed my diagnosis, but they also offered me a surgical procedure—sentinel node biopsy—that was not available anywhere else in Seattle at the time.

Having this procedure (along with a mastectomy), in which only three lymph nodes were removed from my armpit for biopsy, spared me the lifelong complications of lymphedema, which can include swelling and risk of infection in the arm.

The UW doctors also offered me a multidisciplinary team approach that worked marvelously well—all the specialists I needed, including a surgeon, radiation oncologist, and medical oncologist, participated in my initial consultation and then worked closely together throughout my treatment. (This team approach, now common at major medical centers, was new in 1998.)

The same doctors have cared for me ever since, although they've moved from a windowless basement at the UW Medical Center to nicer digs a few miles south at the Seattle Cancer Care Alliance, where patients in the waiting rooms can watch float planes take off and land on Lake Union.

Despite the excellent medical care I've received, I've spent a lot of time watching those float planes. In 1998, at age 43, I had a mastectomy and chemotherapy. The following year, the cancer came back in the skin where my right breast had been, which meant more chemotherapy with radiation thrown in as a bonus.

In December 2001, cancer resurfaced in my bones, breaking my right arm, and I began treatment with a targeted therapy called Herceptin that mercifully lacks chemo’s typical side effects. I also had radiation therapy to treat the large tumor in my broken arm. Last fall [2002], a new Herceptin-resistant tumor appeared in a rib near my spine, and we added six months of chemotherapy to my regimen.

After completing chemotherapy for what was my fourth bout with cancer, I decided it was time again to seek another opinion. I know, and my doctors know, that it is only a matter of time before my cancer returns. Since it has metastasized, we no longer expect to cure it; only push it back into remission, hopefully time after time.

I have (mostly) come to terms with this, but I have children and I will pretty much do anything I have to in order to live as long as possible. (No "do not resuscitate" orders on my bedside table.)

Seeking a second opinion doesn't mean that I don't love and trust my doctors here in Seattle, in particular my medical oncologist, Dr. Robert Livingston, but I need to gather as much information as possible about my treatment options going forward. I have difficult decisions to make—and the wrong decision could cost me my life.

Should I undergo chemotherapy again? Should I look for a cancer vaccine clinical trial? What about T cell therapy—is that right for me?

After doing some research and talking to experts, the name of Dr. Gabriel Hortobagyi floated to the top of my list. He chairs the Department of Breast Medical Oncology and directs the Multidisciplinary Breast Cancer Research Program at M.D. Anderson Cancer Center in Houston, Texas. Dr. Hortobagyi is also a consultant to Genentech Inc., maker of Herceptin, which I've been taking for two and a half years now.

If anyone should be able to give me advice about what to do next, I thought, it is Dr. Hortobagyi. So I contacted M.D. Anderson and asked for an appointment to see him. But I was told that none of the breast cancer specialists at M.D. Anderson would see me for a second opinion.

Being a journalist, I demanded to know why. Second opinions are a routine part of the care offered by every major cancer center in the country. The researcher who had given me Dr. Hortobagyi's name, Dr. Nora Disis, said she had never heard of a cancer center refusing to see a patient for a second opinion.

I received a letter from Dr. Thomas Burke at M.D. Anderson explaining that the cancer center no longer has the "capacity" to see breast cancer patients who seek this service. This unannounced change of policy occurred earlier this year [2004], although the breast cancer section of the M.D. Anderson Web site still touts the advantages of getting a second opinion, and of getting it at M.D. Anderson.

Initially, I thought the change of policy was probably a "bean-counter" decision, like so many bad decisions in health care these days, but the reality was much more chilling. In a telephone interview, Dr. Hortobagyi said that that his department was turning away between 30 and 60 new patients a month before it began rationing care by refusing to see women seeking second opinions.

"In that case," he said, "it is preferable to limit access to a group of patients we are most likely to benefit—individuals who have received no prior treatment, or minimum prior treatment."

He continued, "The efficacy of treatment is inversely proportionate to the extent of prior treatment. If a woman has had chemotherapy before, we can prolong the life of that patient for about a year. If she has had two treatment regimens before, the response rate is about 20 percent or less. …For women who have had four to five regimens, we start reaching the limits of futility." Brrr.

As a woman who has had four regimens of cancer treatment and still works and enjoys a good quality of life, it freezes my soul to hear that one of the best-known oncologists in the country thinks that advising me about my future treatment would be "reaching the limits of futility."

This attitude is especially shocking because Dr. Hortobagyi is a consultant to the maker of Herceptin, which (outside of clinical trials) is only approved to treat women with metastatic breast cancer. So he knows a lot of women like me. [This information about Herceptin was true at the time I wrote this piece, but the drug is now used to treat women whose breast cancer has not metastasized.]

I've learned a lot about cancer research and statistics during my six years of living with, and writing about, this disease. No one explains these statistics better than Stephen Jay Gould, who wrote "The Median Isn't the Message" after he was diagnosed with a rare form of cancer in 1982 and told he had only eight months to live. (Gould survived for 20 years, and you can read his essay online.)

So I know that statistics (such as, for example, the statistic that only 25 percent of women with metastatic breast cancer will still be alive five years after their disease metastasizes) cannot predict the fate of any individual woman.

I asked Dr. Hortobagyi if M.D. Anderson had considered making decisions about which women to see on a case-by-case basis.

"Too time-consuming," he responded.

He added that the staff at M.D. Anderson who talk to potential patients do not have medical training, and much of the information they gather is "incomplete and inaccurate." Rather than come to him for a second opinion, women with advanced disease should do research on the Internet, he suggested.

We have a different attitude here in Seattle, where my doctors at SCCA tell me that metastatic breast cancer is a chronic illness that can be managed with periods of treatment, periods of remission, and fairly good quality of life throughout.

Second opinion? I think I'll just stay home.

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Fall 2006 update: I reread Dr. Hortobagyi’s comments just now, and I am still shocked that he would say these things to me. He knew before the interview that he was talking with a woman who was both a journalist and someone living with metastatic breast cancer. But, while his comments are still chilling, and you couldn't pay me enough to put myself in the same room with him, two years later I am still alive and still doing well, and I feel like thumbing my nose in the direction of Texas and Dr. Hortobagyi—"Nyahh, nyahh…you were wrong. I'm still here." Childish, I know, but rather satisfying.

Another note: I no longer receive my cancer care at SCCA. With the departure of my medical oncologist Dr. Robert Livingston for a new position in Tucson, I have changed both doctors and cancer centers.

Read the Houston Chronicle story: Center will stop giving 2nd opinions on cancer / M.D. Anderson says it'll serve only those breast cancer patients who get treatment there

@ Jeanne Sather 2006

Comments

[Anthony Tippett]

You've done a lot for all of us that read peoples blogs and search for hope.

PS. your blog was emailed to me from a google alert (http://google.com/alerts) on "herceptin"

Thanks,
Anthony

[Lynne Dahlborg]

As someone with cancer (gallbladder in my case), and considering getting a second opinion on the original diagnosis and treatment so far, this is very chilling indeed. And for the thousands of women diagnosed with breast cancer, this has got to be especially painful. And where is all of this cancer coming from, that cancer centers are turning away so many prospective patients? Great article, Jeanne. Thanks!

[Jeanne]

Lynne--where are you thinking of going for a second opinion? I'm happy to share any info I have about the cancer center. Also, I'd like to hear about your experience. I'll be writing more about this issue soon.

Jeanne

[Teresa Hartman]

I have been reading your entire blog with relish, Jeanne. I have my second follow-up with the head & neck guys next Tuesday, and need all the assertiveness I can gather! (Still wondering why I see those surgeons 4 times a year, yet the best chance for mets is lung, bone, liver...). Thank you so much for your writing skills - I am so lucky to have found your words.

[Maria Martonyi]

I was treated for stage IIIA breast cancer at the MD Anderson at age 43, years 1987-88 by Dr Hortobagyi and his team. I have only praise and thanks. I received chemo cocktail (Baxter pump 24 hours flow 4 days), surgery, chemo coktail (diferent from first), electron beam radiation twice a day 4 hours apart for 6 weeks.
Dr. Hortobagyi is a most humane and kind person plus top notch physician.

[debutaunt]

I was treated at MD Anderson for ALL and had my stem cell transplant there.

Initially I was (mis)diagnosed at a regional clinic, but was transferred that same night to MDA and started chemo 3 days later.

From what I've been told about MDA is that sadly they end up turning down more people than they can treat. That they generally don't treat cancers that other hospitals handle. That they also treat patients with rapidly spreading cancer, or rare cancers or cancers / protocols that they are studying. I fell into 2 of the 3 categories.

But when I got there, it was really a huge process. I spent hours waiting for labs, for appointments for referrals. I once waited 9 hours just to get a room for a chemo treatment.

But I will also say that my MDA team were the best of the best (with 1 or 2 exceptions). I am now being followed up in San Antonio, and I thank God I had all my real treatment done in Houston. They really know their stuff.

Sorry you weren't able to get in there for a 2nd opinion. Especially because they really have a very generous financial aid program.

(sorry for all the comments today, but I'm catching up on some topics. I wish you had a syndicated column)

[Kathy Martin]

Thanks for the info about MD Anderson's procedures. I had thyroid cancer removed in March 2007 (not one doctor in the past ten years that saw me for thyroid problems sent me for a biopsy for the knot on my neck - the HEART doctor did!)

Now, inspite pain & swelling in my neck area the doctors said "come back in six months for follow up." (I don't have insurance or large sums of money.)

Any suggestions as how to get seen by MD Anderson without money?

Thanks! Kathy

[jeanne]

Kathy--your situation is different, because you have a different kind of cancer. The breast cancer program there is overloaded, so they don't see patients for second opinions unless the patients are planning to go there for treatment.

I would say, just call and ask to make an appt. If/when they ask you about insurance, tell them you don't have any, and ask about applying for Charity Care.

(I know, it's an awful term, but that's what most places call it. I think they do that to prevent people from asking for it. )

Please let me know what happens.

Jeanne

[Beth L. Gainer]

Hi there Jeanne,

First of all, good for you to be your own best advocate. I cannot stomach the kind of rhetoric M D Anderson gave you. I also enjoy your excellent writing and empowering messages that you give to others.

I mean, isn't it ridiculous for a hospital to deem a case as hopeless?

I'm also a journalist, and I am a breast cancer survivor, who was told by a second-opinion oncologist that I'd be dead in a year.

Please visit my blog on patient self-advocacy. Like you, I stand up for myself and fire the wrong doctors.

You might find the following interesting:
http://bethlgainer.blogspot.com/2009/04/say-no-to-thugs.html

[Mauraid]

I am an MD Anderson patient for colorectal cancer and the medical skill and treatment there is great. But the bureaucracy is horrible. I am constantly fighting with them over appointment times, reasons for tests, etc. My surgeon's Physician Asst. and my surgeon have written in my official record that I am "abusive"! Well, tough for them. I'm starting on presurgery radiation at an MD Anderson satellite facility and oral chemo. 16% of patients who receive this treatment have 100% reduction in the size of their tumor. My MDA-assigned social worker says I need to adjust to my "new lifestyle" of practically living at MDA. Not this chick - while MD Anderson's goal may be to operate on me and make the big bucks from my surgery, my goal is 100% tumor reduction. However, should I still need surgery it certainly won't be from the nitwit surgeon I was assigned who chose to side with his young PA when I complained.

But I think often about the people who are not like me (cocky Jersey Girl). When I go to MDA I see them sitting around like little sheep -- they have let MD Anderson patienthood become their life. BTW, the Patient Advocate department should be renamed the Medical Staff Defense Against Intelligent Patients Dept.

Keep up the good work -- people need to know they don't have to sit silently and lose control of their humanity just because they become ill.