On New Years Eve, 2000 I got a call from my dear friend Janet Page. She was calling me from the emergency room at Lahey Clinic in Burlington, MA. She had just been told that she had stage 4 metastatic cancer. There were tumors throughout her body. The pain she had felt in her chest for the prior year was not “muscle strain, and nothing to worry about" as her primary care physician had told her. I left the new year's party I was at and headed to Lahey.
Janet had called me because I was her “MIT Scientist and engineer nerd friend", and she wanted someone to help her sort out what to do. Close friends are a priority in my life, and I would up setting aside my work for the next year or so to help Janet. I went with her to appointments with oncologists and other doctors. I evaluated hundreds of technical papers for her. I made sure procedures went right on the dozens of visits she made to hospitals over the year.
I don't have a miracle to share with you, but I learned some good stuff you should know about, and some bad stuff you should know about. Actually, you may not want to know about it. The normal reaction of most people when they find out they have cancer is hand all decisions over to a single doctor and just trust and pray. If that would be your style, this article is not for you, because this article is about what can be accomplished when you get actively involved and question people and get multiple opinions.
The first oncologist Janet saw was at the Dana Farber Cancer Center. He looked at her x-rays and MRI from Lahey and he told her that she had small-cell carcinoma and that she needed immediate radiation treatment to zap a tumor that was wrapped around her superior vena cava, and that she need immediate chemo to go after the rest of the tumors. Janet trusted him and went along with both recommendations. The radiation treatment did shrink the main tumor. The chemo did nothing. Actually that's not quite true. The chemo left Janet with serious nerve damage, permanent ringing in her ears, and did nothing to the tumors.
The oncologist told Janet she needed another round of chemo. I questioned whether he had correctly diagnosed what kind of cancer she had (given that the first round of chemo did nothing to the tumors). He staunchly defended his diagnosis and refused to order a tumor biopsy. We got another doctor to order the biopsy. The results of the biopsy analysis was that the first oncologist had indeed misdiagnosed the type of cancer Janet had. It was nothing like small-cell carcinoma. The local lab couldn't figure out what it was. So we went to New York to Sloan Kettering. They figured out that it was thymic cancer.
Around this time, Janet found a lab in California that claimed to be able to significantly improve the chances of finding the best chemo for a given cancer tumor. I began investigating them and was quite impressed. The name of the outfit is Rational Therapeutics. You send them a tumor sample and they break it apart into many different tiny groups of cells and test many chemo agents in the lab against those cells, all at the same time. They can not only pinpoint what the most effective chemo agents are, but they can also recommend the best *combinations* of agents. They do the experimenting in the lab so no “experimenting" needs to be done on the patient. The tests are reimbursable by insurance companies.
We had one of Janet's smell tumors removed and sent to Rational Therapeutics. Ten days later we had a report indicating the best Chemo to use. We went to the oncologist at Dana Farber and asked him to give Janet the chemo that Rational Therapeutics recommended. He refused. He said he trusted his own experience more. So far his wonderful expertise had misdiagnosed the cancer to begin with, prescribed a useless round of chemo that left Janet with nerve damage. Since he had refused to order the tests that showed that his original diagnosis was wrong, and he refused to go along with the chemo that Rational Therapeutics had shown in their labs to be effective, we fired him.
We found an oncologist at Mass General who had experience with thymic cancer, and who was willing to go along with the chemo recommendations from Rational Therapeutics. In the first round of that chemo, Janet got an 80% reduction in the size of her tumors. That probably gave her an extra year of life.
You might wonder how the Dana Farber oncologist could have the nerve or the ignorance to dismiss the possibility of following the recommendation of the most reputable in-vitro chemo-effectiveness testing lab in the country. Certainly arrogance was part of it, but it goes deeper than that into the nature of how the whole mainstream cancer-related medical establishment operates these days, and in particular it has to do with the channels through which medical students and doctors learn things.
The first stage of a doctor's education takes place in medical school. One can hope that medical schools are academically rigorous, commercially non-biased institutions. That might be arguable, but let's say for the moment that it's true. The job of medical school is to impart “general medical knowledge". There is so much medical knowledge these days that even 1000 people put together can't know it all, so it makes sense that much of a doctor's specialty-specific education in his or her chosen specialty occurs after graduation, during the doctor's residency (and fellowship if the doctor goes beyond residency).
Unfortunately, the part of a doctor's education that occurs after medical school takes place in hospitals where commercial interests have a heavy influence. When I asked Janet's Dana Farber oncologist why he didn't trust chemo-effectiveness-testing labs like Rational Therapeutics, he made some general proclamation about such labs being disreputable. Where would he hear such a thing? From the sales reps from the chemo pharmaceutical companies, that's where.
I actually met one of the sales reps from a chemo pharmaceutical company one day inn the oncology waiting room at Mass General. You can tell a pharmaceutical sales person a mile away in a hospital waiting room. I asked him what he knew about in-vitro chemo-effectiveness-testing labs. He answered me so fast that it was clear that is was a response he had been trained for. He said that “a lot of those firms are disreputable and in-vitro results (results obtained in a lab) are very different than in-vivo results (the results in a live human). It was a cleverly worded response.
It is true that in-vitro results are different than in-vivo results. Rational Therapeutics certainly agrees with that statement. What the chemo salesman didn't say was whether in-vitro results *correlate with* (and therefore can be used to predict) in-vivo results. They do correlate, and they can be used as a very accurate predictor.
I thought about that response from the chemo salesman for a while, and then I realized that if everyone used the services of Rational Therapeutics, very few patients would ever have a round of chemo that didn't work well, and the total sales of chemo drugs would drop by somewhere between 30% and 50%. That would be billions of dollars of lost revenue. While it may be in the financial interest of the chemo companies to help you beat cancer, it is not in their financial interest to help you the best they can on the first shot. The insurance companies, on the other hand, want to treat you at the lowest cost possible, so they like Rational Therapeutics and speak highly of them.
So you might ask who an oncology fellow is going to come in contact with more while being educated in his oncology specialty. The answer is that oncology residents and fellows come in contact way more often with pharmaceutical sales reps than they do with people from the insurance industry. They actually rarely (if ever) come in contact with people from the insurance industry. This unfortunate fact could (and probably has) cost someone you know some number f years of life.
If you or anyone you know will be undergoing chemotherapy for cancer, the single most life-prolonging thing I can recommend you do is to have Rational Therapeutics run tests on a tumor sample (or blood or lymph fluid sample, depending on the type of cancer). To me, it's like the difference between knowing, and guessing.
Lee Weinstein is an accomplished inventor and researcher. His better known inventions include the high-tech game Laser Tag, and Radio Fence dog collars. Lee is a registered patent agent with dozens of his own patents issued. He is also the inventor of the SleepGuard biofeedback headband (free 21-day trial available at http://StopGrinding.com ), which measures how much you clench and grind each night, and can be used with or without a mouth guard in a comprehensive program to help you kick the habit of tooth grinding and clenching. He is also a contributor to StopGrinding.org, a non-profit resource website which helps people who suffer from teeth grinding .