Over the last week, Mom and I convinced ourselves of certain things about our interaction

Mom Checks Email and Facebook in Bilbao

with Dr. Chutzpah, and I summarized that thinking in the post Paging Dr. Chutzpah.  However, the doctor, who I’ll now call Dr. Denver, phoned us back today and answered several of my questions.  In the process, I realized that some of her earlier explanations had been merely unclear or confusing, and some of the conclusions Mom and I had drawn needed to be revised.

I toyed with the idea of leaving the original up to dramatize how information gets distorted by our thinking, and our thinking by our emotions, but I felt the disadvantages of being incorrect and unfair to an unnamed person trumped the advantages (the interest of generations of historians).  So the post as written yesterday has been amended, and I’ll add the new information below.

First, we had not been made adequately aware that Dr. Denver’s decisions had come on the heels of consultations with a team of about a dozen experts in different fields in what I gather is a routine multi-disciplinary meeting to discuss difficult patient cases.  I view the results of that kind of discussion more favorably.  While the groupthink phenomenon is always a danger, and I have no way of knowing if other doctors at the meeting stood to profit from any decision for chemotherapy, the presence of numerous people from different fields does present less opportunity for a decision motivated even unconsciously by profit.

Second, while Mom and I both understood the doctor’s comments of last week as meaning that Mom’s mucinous tumor was as unlikely to respond to chemotherapy as most mucinous cancer cells, Dr. Denver appeared (now I must qualify everything, even though I took contemporaneous notes) to say that, because the tumor is a recurrence of her original ovarian cancer, it would likely respond as well to chemotherapy as that first cancer did.

Below are my notes from the recent conversation, expanded from memory and edited for clarity.

What is the primary cancer? 

I noted that a pathologist said a few months ago that the spot on her lung – removed last summer before the Camino — was lung cancer.  And that another doctor had deemed that nonsense, saying it had to be ovarian cancer.  Dr. Denver said the pathologist had noted in his report that the spot “looked different from her original cancer,” and added, “if they say it’s lung cancer, they’re definitive.”  The pathologists at her own hospital, in any event, had concurred that the lung spot was a separate cancer, lung cancer.

So what kind of cancer is in this largest tumor?  Ovarian?

“I have no doubt,” Dr. Denver said, emphatically.  The lung lesion had been quite small, while the cancerous lymph node in question is not in a place where lung cancer spreads to, but it is where ovarian spreads to.

Pelvic Spots

Proton therapy is based on high-tech particle acceleration, which, like pelvic spots, reminds me of the Sun

I said that we had contacted a proton therapy center in New Jersey last week and were told today that their radiation oncologist saw other areas of concern in the pelvis and sigmoid colon.  He said this meant the cancer was metastatic, or had spread, proton therapy would not be appropriate.  (However, I could not get, or did not understand, an explanation for why removal would not be better than nothing).

There is something in the pelvis, Dr. Denver said, but that’s “relatively easy to resect,” which is Medical Latin for to remove.

Are these stable unchanged nodules something of concern?

Dr. Denver said something about Mom’s “trend over the years” that I did not capture, and went on to say that Mom’s cancer was behaving more in “a low-grade, indolent fashion.  If this was a high-grade cancer, she likely would have died of it by now.  In that sense she’s fortunate.  But where it’s decided to cause trouble is in a spot that’s impossible to get out without significant risk of just bleeding to death.”

Those other two sites, the doctor said, are another reason Mom “should get systemic therapy” to see if it “shrinks down.”  (I now see ambiguity in that “it”  — to see if what shrinks down?  The cancer generally, or the difficult lymph node?  Once again, I see a real benefit in a super-clear written explanation by the doctors.)

Oh – by “systemic” she means chemotherapy.

How did you know the lymph cancer was mucinous?  

She didn’t have the reports in front of her (note to doc:  buy a tablet), she said, but said mucinous was the histology of her ovarian cancer.  “These tumors aren’t known for being chemo-responsive tumors,” she said.  I believe she said the histology doesn’t change.

So, I said, are you saying that because Mom’s cancer, 11 years ago, was mucinous, and the histology doesn’t change, that this cancer must also be mucinous?  I believe she said yes, but she was on to a discussion that to my lay mind seemed unrelated, and hard to follow.

She said that chemo 11 years ago should have been done after Mom had had “everything visible cut out?”  I asked what she meant by “everything visible” (after all, Mom’s heart and other organs were “visible,” so surely she meant something more specific).  By “everything,” did she mean everything that looked problematic? That was my understanding.  I said that the original surgeon had spotted the lymph, but had left it there because he deemed it inoperable.  This is Mom’s memory, and she believes it’s in her diary, but one of her local doctors said the spotting of the lymph wasn’t in the surgical notes).

Dr. Denver pointed out that she couldn’t know what the doctor may have been referring to.

Should We Get Surgery to Remove as Much as Possible?

If we left some of the tumor behind, Dr. Denver said, “we’re not accomplishing much.  It will be all scarred in, it will grow back, and any attempt to resect will be even harder.”  As I did many times on the call, I restated this to her in different words to ensure I had understood it.  She went on:  “When you operate and disturb the natural tissue plain, you create more scarring.  If you have to go back in there again, it’s worse.”

“So you’re saying,” I said, “that if you go right up to the border of where you can cut safely, then when you are done that border will become scar tissue that’s harder to operate on in the future?  And that you’ll have scar tissue immediately adjacent to the aortic veins?”

“That’s right,” she said.

I asked about something called Insulin Potentiation Therapy, a form of chemo that uses a far smaller quantity of chemotherapeutic chemicals.  It’s also called “soft chemo”.

Insulin Potentiation Therapy

During my research, I had liked the idea of IPT (as Mom did), as it’s also called, but was not impressed with the dearth of science.  The idea:

It consists of giving a patient a dose of insulin followed by a tiny dose of chemotherapy.

Cancer cells have 15 times more insulin receptors than normal cells. The insulin dose helps to target chemotherapy into cancer cells because they have so many more insulin receptors. So small doses of chemotherapy can be used that cause little harm to normal cells. With Stage 1 or 2 cancer, IPT is, I read, about 80% successful, mixed results for more serious cancers.

I contacted a company called EuroMed and a doctor there got back to me this morning.  Ovarian cancer is very sensitive to IPT, he said – it’s the most sensitive of all cancers to chemo, but difficult to keep in remission.  It can get aggressive and resistant to treatment.  Almost every patient on IPT will go into remission, he said.  They frequently take patients in Stage IV, already sent to hospice care by their oncologists, who are now surviving five to seven years later.

The most important element for a patient’s prognosis is the clinical picture, he said.  He said it was very good that Mom felt well.  If she feels well with no symptoms, he said, she’ll do better with IPT.  “The way out [of cancer] is through a strong immune system, and that’s the key difference between IPT,” which aims to preserve the immune system, and conventional chemotherapy, which many say destroys it.

After Mom went into remission, he said, she would have her blood drawn monthly and be brought back for another “zap” in the case of “a flare”.  She’d be given unspecified oral supplements along the way.

Science, Alternative Therapies, and Follow-the-Money

What about scientific studies?  I’d been unable to find any original studies on the web, and only scant reference to any studies.  I heard from the EuroMed doctor a variation of the argument I see a lot these days when people discuss alternative therapies.  The arguments sometimes carry a conspiracy flavor that I find distasteful even if I can imagine them, in this case, being true.  They go like this:

IPT [or insert other potential cure] is opposed by big pharmaceutical companies (who are now people for purposes of lobbying, per the Supreme Court’s decision in Citizens United).  There is no money to be made in therapies that aren’t conducive to being patented.  If something can’t be patented (e.g., a plant essence), it can’t be sold at a high profit margin because others can sell it too, at low prices.  In the case of IPT, it’s not an entirely different therapy, but the small amount of chemicals used means little profit for pharmaceutical companies.

So big pharma, which allegedly (I have not confirmed this myself) funds the research hospitals that do all the studies, will not fund studies to prove the efficacy of competing, unprotectable technologies.  Doing studies properly costs a lot of money.  IPT [or other potential cure] providers lack the funding to do such studies themselves, and get no cooperation from university hospitals.  And doctors like the one from EuroMed, who do IPT, are oriented toward clinical work, not research, in their limited time.

In any event, the doctor asked for her biopsy report; her recent bloodwork (her CA-125 is currently a very low 52); and a recent scan.

Dr. Denver on IPT and Chemotherapy

I had just gotten the words “Insulin Potentiation Therapy” out of my mouth when Dr. Denver said, “Chemotherapy.  Anything else is just investigational.  She can do that, but it’s way outside the norm for what we would do for a recurrence of this cancer.”

When would IPT be appropriate? I asked.

“I don’t know what it is,” she said.  “It’s not something that would be used for ovarian recurrence.”

It’s clearly an alternative therapy, I allowed.  That she hadn’t even heard of it proved that much.  It was her job, of course, to focus on therapies with some research behind them.

“You’ve got to assume she will respond to chemo,” the doctor said.  She also said, of Mom, “She’s got multi-focal disease and is not a candidate for surgery”:  the systemic assault of chemotherapy was the solution to such a case.

Biopsy

What about doing the surgery in part to get out some of the tumor for a biopsy?

Surgery for the purpose of getting a tissue sample would be too invasive, she said.

But would you test a sample if you had one?

Sure, she said, for a chemotherapy-sensitivity assay.  There are a variety of them in use; some are good and some are not.  The University of Colorado Medical Center uses one called CARIS.

But you need a core biopsy, she said.  A certain amount of tissue.  And she was doubtful you could do that safely.  She concluded:  “I wouldn’t operate on her because it’s too much risk and there’s not an adequately identifiable benefit.”  This is the kind of language I look for.  It suggests she’s weighing both costs and benefits, and comparing them to one another.

She asked an oncologist in Grand Junction to contact us.  We’re going to set up an appointment with the Huntsman Cancer Institute at the University of Utah.

I came to Colorado near the end of February because my mother’s Denver surgeon had

What I brought from Oregon

said, unequivocally, that surgery on the last of Mom’s tumors would take place “at the end of February or in early March.”  Once I was already in Colorado, the doctor, whom Mom had told I would be flying in for the scheduled surgery, told us removal of the entire tumor would be risky, and was not viable.

Still, I’m glad I am here now to sort out this curious breed of people they call doctors, and to help Mom reason her way through important medical decisions.  I am finding that being a patient-advocate means being a very patient advocate.  Here I am, calling the proton therapy center in Loma Linda, California:

Me:  What do you mean you can’t take people with Stage IV cancer?  Why not?

Bureaucrat (not her actual name or title):  We only do the proton therapy on Stage I and II.

Me:  She’s not symptomatic.  Another proton therapy center thought that made a difference.  No?

Burcrat:  We only do I and II.

Me:  So is there some distinction, as regards proton therapy, that makes Stage I and II different from Stage IV without symptoms?  Or could it be a distinction without a difference?

Burcrat:  Stage IV is the stage we don’t do proton therapy on.

Me (trying another tack):  Can you tell me why that is?

Burcrat:  That’s our policy.

Kafka Was Lucky

The works of Kafka became famous for situations that make more sense than talking to someone who doesn’t know why her organization does what it does.  If only the woman had uttered one of my favorite lines from The Trial, in which two mysterious men materialize in Joseph K.’s apartment and are unresponsive to his queries, the day would have been at least aesthetically perfect.  In The Trial, Joseph K. eventually tries to leave his apartment, but the men tell him:  “You can’t go out, you are arrested.”

“So it seems,” K. replies. “But for what?”

“We are not authorized to tell you that,” he is told.  “Go to your room and wait there. Proceedings have been instituted against you, and you will be informed of everything in due course.”  And then the hilarious line:  “I am exceeding my instructions in speaking freely to you like this.”

K. tells himself this must all be a practical joke, or at least a mistake, for he lives in “a country with a legal constitution.”  But no.  K. is now in the surreal, irrational world that would come to be called Kafkaesque.

And I am in the world of American medicine, the bloated, inefficient thing we find ourselves stuck with in 2012.  I’m an advocate for my mother in a different kind of trial.  And one of the lesser trials is of our patience.

Witness our experience with the Denver-based gynecological surgeon and oncologist we met above.  We’ve taken to calling her Dr. Chutzpah.

Dr. Chutzpah:  Part I

Nearly two years ago, Dr. Chutzpah told my mother that she, Dr. Chutzpah, would not perform surgery on the tumor now in question unless my mother underwent chemotherapy afterward.  (Yes, afterward.  As if she could legally bind my mother’s post-surgery conduct).  My mother told the doctor that she couldn’t go through another round of chemotherapy.  The doctor said she would not operate without chemotherapy.

Last Monday, Dr. Chutzpah told us that the tumor is now too wound up with veins from the aorta to allow for a safe operation.  She also said that Mom has a mucinous tumor, and that such tumors are usually not responsive to chemotherapy.

Dr. Chutzpah to a White Paging Telephone, Please

So Mom and I unpacked that as best we could.

In order to perform critical surgery, two years ago, that could have prevented the further growth of the tumor, had she required a likely waste of time, my mother’s scarce money, your taxpayer money (Medicare), and, not least, a great deal of statistically unnecessary suffering?

So what should we do now? we asked, two years later.

Dr. Chutzpah suggested that Mom should go through chemotherapy, just in case it worked.

Mom and I were perplexed.  Hadn’t she just said this tumor was unlikely to respond to chemotherapy?

Dr. Chutzpah: Part II

In mid-January, Dr. Chutzpah told Mom to get another $8000 PET scan.  Mom had just had a PET scan in mid-November.

Dr. Chutzpah then had Mom and her friends drive over the Continental Divide, in January, to Denver, for a pre-op procedure – and then sent her home, saying the hospital in Grand Junction had failed to send the critically necessary PET scan.  Once Mom had arrived back home $400 lighter, Dr. Chutzpah’s office located the PET scan.  It had been in her office all along.

But then Dr. Chutzpah said the $8000 PET scan that she had ordered, and which was necessary to the $400, two-day trip to Denver, didn’t show the right information.  She called it “blurry”.  Then Dr. Chutzpah did an interesting thing.  She told my mother to get a CAT scan.

Now, you would think that if a PET scan had been the best choice all along, Dr. Chutzpah would have ordered another one.  Or, if PET scans had a tendency to be “blurry” or to be unlikely to show the object in question, Dr. Chutzpah would have known that and ordered the CAT scan the first time around.

So far, two PET scans and a CAT scan in 60 days.  Who absorbs this cost?  We do.

In any event, Mom, her immune system struggling with the fearful thoughts this confusing process was causing her, immediately went to St. Mary’s Hospital in Grand Junction and underwent a $4000 CAT scan (thank you, readers!).  The hospital again sent the doctor the CD.  Then we heard nothing for several weeks.  How to explain the time-sensitivity that says a November PET scan may not be current enough — but surgery can wait for several weeks after the third scan?  Maybe there is an explanation, but if Mom was given one, she didn’t realize it.

Mom’s nerves were fraying.  She wasn’t sleeping well.

Finally, Dr. Chutzpah left a message last Saturday saying she’d call Mom on Sunday.  On the appointed day, Mom chained herself to her phone and did not go out all day.  There was no call.

Late on Monday, Dr. Chutzpah reached Mom, said she’d called both of us earlier in the day (a curious fib in the age of missed-call lists), and said she hadn’t called on Sunday because, she said, “I thought you might be in church.”

When Mom (who does not go to church) got off the phone, she was incredulous.  “Did she think I’d be in church all day?”

This, too, affected Mom’s sense of trust, and well-being.

Dr. Chutzpah:  Part III — Primum non nocere, or First, do no harm

I watch these things with the eye of a consultant, a coach, a businessperson.  (And a comic, sadly).  I have been passionate about best practices and efficient systems since before I knew their names.  I’ve devised the best ways of doing things, used them, recommended them, helped others build them for my entire career.  And I too am incredulous — at the avoidable waste, inefficiency, and poor service I see in medicine.

Dr. Chutzpah, for example, does not have in place the fundamental operating policies a competently-run business has in place to make a real effort to respect clients’ time, money, and emotional energy (which is, or may as well be, the immune system).  Leaving aside the possibly wasteful scans, here are just a few policies Dr. Chutzpah could implement as easily as creating checklists for them:

• Waste no patient money, I.  Establish a procedure to ensure that a patient does not even cross town, much less the state, unless the doctor possesses all the tools and information the appointment requires, including a PET scan.
• Waste no patient money, II. Establish a procedure to ensure that a patient does not expend the time and money to come to an appointment unless all tools are in working order, such as clear PET scans.
• Take responsibility. If doctor’s office does cause a patient to foreseeably waste time and money, the patient’s overall bill should be reduced to compensate for the increased expense caused by office’s negligence.
• Pay attention to foreseeable consequences. If you know that a patient is making plans based on what you say, pay attention to what you say.  For example, if you haven’t yet reviewed the CAT scan that would alone tell you if surgery was or was not possible, do not set a date for surgery that others will rely on at their expense.
• Do not substitute authority for evidence. When you do recommend courses of action, explain why.  Cite a scientific basis for a recommendation.  For example, if chemotherapy doesn’t “usually” work for a particular situation, give the patient, at a minimum, statistics for your interpretation of “usually.”  Better yet, provide the actual studies you are referring to.  Otherwise we have to wonder how cutting-edge your knowledge is, how good your memory, and how well you interpret data.  And because you’re a human being and I’ve read the research on medical errors when doctors don’t implement good systems, I don’t want to rely on you alone.
• Have the courage to talk about ideas you disfavor. Please address those actions you do not recommend, even if you think they are absurdly alternative.  Because we are going to find out about them, and we will want to know the scientific bases for your dismissal of them.  We’re probably going to ask you anyway; why not be thorough and streamline things in advance?  (Another doctor inspired this addition:  When you are asked about alternative therapies, discuss them rationally and unemotionally, rather than with anger and contempt.  The latter is about your ego.  The former is about your patient).
• Better yet, write it all down.  It is madness to expect a terrified person to hold in her head everything you tell her, or to take flawless notes.  The mind screams:  What are you thinking?

Dr. Chutzpah’s Last Ride?

Because no doctor had clearly laid out the options for my mother, nor written anything down for her, we were left with a raft of questions.  I called Dr. Chutzpah’s office and left a voice mail saying we had questions.  I asked for her email address.  I said that we would not rent, sell, or barter the email address, but if the doctor was concerned about getting inundated with emails, I could put the questions on a web page and they could view them there.

I mean, right?

Dr. Chutzpah’s nurse called, several days later, to say that I should leave the questions on their answering machine.  Twice she stressed that I should not be worried about leaving “a long message”.  In fact, I was quite brief.  I read off these questions:

1. What is the primary cancer here?  We have heard ovarian and lung.
2. How was the stage defined?  What does it mean to be in Stage IV without symptoms?  Is such a Stage IV not qualitatively or quantitatively different from more symptomatic Stage IVs?
3. Is this tumor metastatic (spreading) from the primary?
4. Why was chemo required 2 years ago when she’s saying now that Mom’s type of cancer typically doesn’t respond to chemo?
5. Why not do a chemo compatibility test?
6. What are your thoughts on partial removal of the tumor first?
7. Can a biopsy be done without surgery, or in this case is a biopsy about the same procedure as surgery?  If the latter, does it not make sense to do the surgery in order to learn what kind of mass it is?

The next day, the nurse called us back.

“Dr. Chutzpah,” she said, “said that if you have so many questions you will need to make an appointment to see her.”

No, Seriously

“I’m disappointed to hear that,” I told the nurse, “because I think we shouldn’t have that many questions.  Their answers should have been included in a well-thought-out presentation.  And if there’s not going to be any medical exam, it doesn’t make any sense to travel all that way for a conversation that can be done by phone.  Does it?”

Eliminating the only remaining reasonable objection, I added, “We’d be happy to pay her for her time on the phone, but it makes no sense to drive four or more hours to Denver when there won’t even be a physical examination.”

“I will communicate your views to Dr. Chutzpah,” the nurse said.