Patient Reflections on Extrapleural Pneumonectomy in 2007

June Breit is a 57 year-old mesothelioma survivor, clinical nurse, and patient advocate who lives in Phoenixville, Pennsylvania. She was diagnosed with malignant pleural mesothelioma, epithelioid type, in early 2002, and underwent an extra-pleural pneumonectomy at Brigham and Womens Hospital in Boston on June 26, 2002. She also had radiation and chemotherapy. June now has a recurrence of the tumor in her remaining lung, and is re-examining the role of the EPP in the arsenal of treatments for mesothelioma.

June and her husband Howard

"I'm an exception in terms of EPP because I've experienced what they call 'extended survival.' When I decided to undergo the EPP in Boston, there was no Alimta, no IMRT, nothing else being offered on the East Coast. So I made my decision based on the best information available to me at the time."

June Breit says these words carefully, because in the five-plus years she's lived at the eye of the mesothelioma storm, she knows that hidden agendas are everywhere. "Looking at my surgery today and asking hard questions about it isn't a matter of going down that futile and depressing road of 'if only I'd done things differently.'

"Science only moves ahead when we evaluate past decisions in light of information available to us now, not so that we can beat ourselves up over what we did, but so that we can guide others facing the same choice today. If the good choice of five years ago qualifies as a bad choice today, so be it.

"And I can tell you that today I would not consent to an EPP as a first-line intervention."

The survivor's conundrum

"We all know that so many people with mesothelioma make it only a few months past diagnosis. So when I, as a five-year survivor who's really beaten the odds, raise questions about EPP, there's an unstated criticism from people whose loved one only lasted a year, or maybe even a month. 'What are you complaining about? You got five years. We only got one.'

"Put that in the context of any other illness and you'll see how far we have to go as mesothelioma patients," June says. "With other cancers, once you beat the statistical rate of recurrence, you're 'cured.' A cure in cancer means that your risk for the cancer has dropped so that it is no greater than that found in the general population. But since the prognosis for mesothelioma is so grim, and recurrence a virtual certainty, we learn to think of survivorship as 'extra time' - a postponement of death rather than a chance for life. They're not the same thing. There's a real difference that lies at the core of the current medical approach to mesothelioma.

"It can make you feel guilty to still be standing when so many others have fallen, but it doesn't make me want to live any less. You think five years is enough? I don't. That's nihilism: 'You only deserve five.' I think I deserve the same thing as anybody else: a shot at a future. That's the target I'm aiming at."

Death Or "Wuwu"

"You know the old joke about the three captive missionaries being made to choose between death and wuwu?" June says with a wry laugh. "Grateful to have an option other than certain death, the missionaries all choose the untranslatable wuwu, which in the end turns out to mean prolonged torture and then death. The context in which some surgeons discuss the EPP with a distraught and frantic patient is like that. 'Do you want death or the EPP?' It's just like 'death or wuwu?' You choose what you think is the alternative to dying, only to find out that you're still going to die, and on top of that, you're going to have to endure wuwu , too.

"Everyone in my graduating class of EPP is dead. I'm not seeing a statistical imperative for the surgery. Can anyone in the scientific community, including the doctor who did my surgery, run the numbers by me to show that my 'extra five years' were the result of the EPP? No. So if I were faced with the choice today, I would look first to less extreme interventions that left me with both a higher quality of life and the maximum physical resources for continuing to fight my disease."

The solution, June says, is moving away from the nihilism of using death as the baseline against which to compare different treatment options. "When asked to choose between death and an alternative, almost everyone will choose the alternative, even when it winds up being the unknown. But the baseline should be set higher than that. Much higher. The baseline should be informed by realistic hope and, most importantly, by facts. Mesothelioma patients want facts, not dreams that have been polished and dressed up in their Sunday-best. We don't want hope and optimism packaged and presented to favor a particular option. We want them as the natural outflow of facts."

Just the facts, sir

Mesothelioma patients find themselves afflicted with a cancer as strange to the ordinary person as it is hard to say. Its unfamiliarity, strangeness, and its own insular community heighten the patient's sense of worry and concern. Desperate families, struck out of the blue with this disease, enter a new world built on years of pessimism and scientific neglect. For more than fifty years, the knee-jerk reaction to a diagnosis of mesothelioma is that it represents certain death. In fact, the medical community did not even begin to recognize mesothelioma as separate from lung cancer or GI cancer until relatively recently. It is only in the last few years that physicians have begun to search for treatments instead of simply telling a patient to go home and die.

"In that emotional state, the EPP is often oversold, even misrepresented. Some doctors will tell you it's the only option when in fact it's one option of several. Others will tell you that you've got to do it now when in fact you have time to shop around. There are even physicians who will describe it as a cure.

"Whatever EPP is, it's not a cure." June lingers on that last word. "There is no cure."

She continues. "It's a momentous decision even with the best information. What information? Well, staging information for one. Patients aren't always told the correct staging of their tumor. We know that EPP, if it has any effect at all, only works with early staging, but many a patient with a stage IV tumor finds himself on the operating table. Some of that is because even with the best imaging mesothelioma can't always be accurately staged. But if over time, a physician repeatedly underestimates the staging, that's misrepresentation."

The cell type of the mesothelioma is vital as well. There are 3 types of mesothelioma (epithelioid, sarcomatoid, and biphasic) and each responds very differently to treatment. Patients with the sarcomatoid may need to take an entirely different treatment path than epithelial patients.

"Good doctors will tell you the whole picture with EPP. They'll lay out all the risks, the potential rewards, they'll discuss recurrence and clinical trials, quality of life, and most importantly they'll review everything-good and bad-that we've learned from EPP over the last several years. They'll help you see EPP as an option. That's 'an,' the indefinite article. Singular," June says.

Cherry Picking

"A number of doctors think we can't handle reality, so they cherry-pick their cases in order to encourage us to undergo surgery. If there's one thing mesothelioma patients can handle, it's reality. We live in the here and now more than any group of people alive, precisely because our hold is so tenuous. Still, it's understandable-unacceptable, but understandable-that we're sometimes underestimated. However difficult it may be to deliver an unpalatable truth, it's what we require from the physicians we trust to help us make the best decision.

"I find it unconscionable that there are surgeons who cherry-pick simply so that they can obscure the big picture of EPP's surgical record. They select the most successful patients to be spokespeople for the procedure rather than providing an unvarnished view of the unsuccessful, pain-ridden, struggling outcomes as well as the ones who are doing great. I know people who were told that they'd be out on the links in six weeks. Aside from the fact that I've never met one of those six-week golfers, for every one they cite I can point you to dozens whose outcomes weren't anywhere near as rosy. We want facts, not theater. Leave the sugar coating in the box of cereal where it belongs."

The best question is the one you asked

A good doctor will provide extensive information about EPP. But according to June, you have to be prepared to ask questions, get second opinions, and use your own judgment about the quality of information your doctor is providing.

June Breit

"The first rule of mesothelioma is, 'Get thee to an expert.' The second rule is 'Get thee to another expert.' Look at the surgeries that are available. Get a video disc from hospital so that you can see what the surgery entails. Talk to people who have had different treatment modalities, and above all, move heaven and earth to get the cancer staged appropriately. After your decision, take a deep, deep breath. This is your most important moment in a string of life-altering moments: after you've taken that breath, start over from scratch.

"Re-talk it, think it through again, and re-trace every step. Why? Because you are vulnerable, and at some point along the way you may have made an emotional choice that's steering you down a path you wouldn't otherwise have taken were you not so desperate. When you've been swept up to Oz in a terrible tornado, you'll want to buy whatever the wizard is selling. But you shouldn't be automatically enticed. Reconsider the pros and cons, and then you'll be able to say that you did the best you could."

Advocating fairly

June's approach to EPP surgery for mesothelioma, her activities as an advocate, and her experiences with the medical community put her in regular contact with patients. Understanding that EPP surgery is a viable option with good outcomes for some patients, and advocating the power of information for those who have been recently diagnosed, she continues to recommend patients to a variety of doctors, including Dr. Eric Vallières of the Swedish Cancer Institute in Seattle who routinely performs the EPP. "We have to consider all the options," she says "with eyes wide open. In my discussions with patients and their families about EPP, I've heard many say they owe their lives to the surgery. For them, the decision was right."

*June Breit frequently posts messages to the ACOR listserv, an e-mail discussion board dedicated to discussions about mesothelioma, and to the discussion board of the Mesothelioma Applied Research Foundation. Her email address is junellen@netscape.com.

*** POSTED NOVEMBER 5, 2007 ***

December 26, 2007

This past week I've been through a diagnostic whirlwind that seemed at times to be an Abbott & Costello routine, but has left me with serious issues to ponder in the New Year. As some of you know, I've been having increasing difficulty breathing that has gotten worse with each chemo cycle. This last cycle, I found I could barely move without my oxygen levels plummeting to the basement. Any exertion left me gasping like a fish on dry land. It felt to me like I was back at the beginning of things, 6 years ago, and I insisted on a chest xray to see if I had any fluid accumulated that might explain the problem.

Had the xray on Tuesday, and was told that there was "a bit of fluid there". Asked my pulmonologist to arrange for it to be drained - he called me that night saying that the xrays showed no drainable pocket of fluid, but instead "massive pulmonary fibrosis, scattered fluid pockets, and incredible amounts of scarring". Apparently nothing I was doing was working, and it was time to consider palliative care. Needless to say, my first reaction was to meltdown....

Good thing I had a second reaction. After I'd gotten myself together, I called back and had him take another look at the xray. Well, it turns out that he and the radiologist had been looking at the LEFT chest, where there is no lung, and where there has been scarring and fluid and fibrosis since the surgery in 2002! Ok, nothing like reading the xray backwards......so what did the RIGHT side look like? He seemed to feel it was "basically unchanged" from when I started chemo nearly 3 months ago. He seemed unimpressed by my intuition that there was fluid there, but agreed to see me for further evaluation when I pressed for a solution.

Thursday I saw the pulmonologist in his office. He percussed my chest, and decided that it "sure sounds like there's fluid there". He agreed to schedule drainage under ultra sound by the Interventional Radiologist, and told me they might get "a couple hundred cc's" which might make me feel better. I had to press for a pathology examination on the fluid once it was drained.

Finally, on Friday, I had the drainage done. They got over 1600cc of cloudy fluid! My grateful lung is still expanding, and I feel tons better, of course. Now the question is why so much fluid, and what is causing it? Is it irritation from the chemo? Lack of effectiveness of the chemo? Whatever, it would seem that something is not going as rosily as I had hoped. I will see my oncologist as planned on 12/26. We'll get a CAT scan and check the fluid pathology report to see if we can determine what's happening, then proceed from there. I still have some different chemo combinations to try, and will be looking into immune factors as well. Failing all that, well, I'm running out of things to throw at this disease (rocks? pointed sticks?).

I'm determined that from now on, only those who know my history may read my xrays, and only those who support my desire for proactive threatment will be involved in my care. I'll follow with my oncologist, and the mesothelioma specialist at U of P in the future. Right now, I'm going to concentrate on the good news, which is, with nearly 2 quarts of fluid removed from my chest, I feel damn chipper and all set to enjoy the Holidays!

I think the moral of the story continues to be: listen to your body and your instincts, and not to others. You know yourself better than anyone - don't be afraid to speak out, and loudly!

June Breit