Bernadette's Story

Awhile back, I wrote about an old high-school friend of mine, Bernadette. You might remember...she is the one who is a mother of 5 and who was diagnosed with stage 4 lung cancer at the age of 38? Well, she has been undergoing aggressive chemo treatment in her hometown of York, PA since last November, but to no avail -- the cancer was not responding. In desperation, she and her husband packed their bags a few weeks ago and headed south to John Hopkins Medical Center (in Baltimore, MD) to consult with a renowned lung cancer expert there. After reviewing her medical records and treatment history, the doctor suggested to Bern that she take part in a clinical trial since her situation was so dire (Note: Since clinical trials can be risky, in most cases, the people who agree to participate are the ones who feel they have nothing to lose.) In order to participate, however, the doctor told her that she first needed to undergo a number of scans and test so that they would have a very clear picture of her current state. Well, all I can say is THANK GOD for this doctor!! As it turns out, Bern learned that she does not have lung cancer; she has BREAST cancer. The doctors in York completely and utterly messed up. Not only did they misdiagnose her, but they then treated the wrong disease for 6 months!!! Hmmm...do you think that maybe this is why her cancer was not responding?

There were two thoughts that came to mind when I read Bern's email:

1) The NY Times article that I mentioned in my blog entry last weekend spoke at length about the varying degrees of expertise for cancer treatment that exist in different parts of the country. I think that Bernadette's case speaks volumes about this very point. York Pennsylvania is a small town (population is about 40K). The nearest big town is Philadelphia, but that is almost 2 hours away. I can understand why Bernadette, with 5 children (one of whom was a newborn baby when she was first diagnosed,) chose to be treated at a local hospital. I cannot imagine driving 4 hours round-trip every day for appointments when there are children left at home to care for -- and I only have two! But it's especially hard to imagine making a 4-hour trip when the benefits of traveling that far are not totally clear. Which leads me to my next point...

2) The average person has no clue how to evaluate the differences in medical care that exist in this country. In fact, the average person (e.g., Bern and myself) doesn't even realize that there ARE differences. This is why I am so eternally grateful to Jeremy and Shannon who relentlessly and adamantly refused to allow me to be treated at the local community hospital here in Marin without at least getting a second opinion from doctors at UCSF. Jeremy and Shannon both did their medical training and worked at Northwestern University in Chicago and so they are intimately familiar with the level of expertise that is gained in these high-volume teaching universities. When I was first diagnosed, I had no clue which direction to turn. As far as I could tell, the doctors here in Marin were as good as any. They seemed to know what they were doing and the thought of seeking second opinions was overwhelming to both Pete and I. Do we really need a second opinion -- the doctors here seem so confident in their recommendations? Where should we go to get it? Is UCSF a "top cancer center" or should we consider someplace like MD Anderson in Houston? Shouldn't I just start treatment as quickly as possible? I feel like I have a ticking time bomb inside of me!!

But Jeremy and Shannon did not give in. In almost every conversation that we had (and we had hundreds in the couple weeks after I was diagnosed!) they absolutely insisted that I seek a second opinion at UCSF and I am so glad that they did. As it turns out, the Marin doctors that I have had (Dr Poen and Dr Gullion) have both been wonderful. They are clearly on the cutting edge of treatment and have been in complete agreement with the doctors at UCSF. But I think that my situation is probably unique relative to other parts of the country. We live very close to two top-notch universities (UCSF is 10 miles away and Stanford is about 40 miles) and so many of the doctors who come to Marin hark from these top teaching centers (Dr Gullion worked at UCSF for 20 years and Dr Poen headed up Stanford's radiation oncology group.) I am sure that the same is not true for most other small towns in America. If nothing else, doctors in a small town or in a community hospital setting, by definition, do not see the same number of cases that doctors at a high-volume center see. That is why I so adamantly wanted my surgery to be done by my surgeon at UCSF. Dr Garcia-Aguilar has performed literally hundreds of my exact surgery, whereas the surgeons in Marin see only a fraction of this. As my friend, Michael, told me, "The skill of the surgeon can make or break whether you survive this cancer or not." And there is only one way for a surgeon to become skilled at surgery: practice, practice, practice.

Needless to say, Bern has "fired" her York doctors and is now scrambling to find top breast cancer experts (if you know of any, please shoot me an email!) In the meantime, she is being treated at John Hopkins and has a whole new outlook on life. As you may or may not know, breast cancer (even stage 4 as Bern's is) is much more treatable than lung cancer. There are woman who live for years and years with metastatic breast cancer, but the same is not true for lung cancer. And so I can sense that her fighting spirit is back with full-force and she is embracing life as never before.

The moral of this whole story is that if you or someone you love receives a cancer diagnosis, the single best thing you can do is to be seen by doctors at a top cancer center, even if only to get a second opinion. When you are dealing with a matter of life or death, there is absolutely no substitute for a proper diagnosis and the latest and greatest cancer knowledge. I was soooo lucky that I had Jeremy and Shannon as my "guardian angels" because I never would have recognized or understood this point without them. And I know that right now they are probably opening a bottle of wine, pouring themselves a glass, shouting "Hallelujah!" and toasting the fact that this point finally sunk into my thick, stubborn head. I can hear their glasses clinking all the way from here! :)