Constantly Questioning What We Think We Know

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.


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.

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