Cancer 2.0: The Sequel

The doctors never seem to like talking about the fatigue that lingers and lingers after chemotherapy. This last time I tried to find answers, I came across much info I knew, like long-term fatigue is a problem for up to half of cancer patients.

Yesterday, I came across some articles looking at elevated levels of something called “Cytokines” in those experiencing fatigue.

From what I understand from reading, cytokines are similar to hormones… they are proteins secreted by cells in one part of the body, that trigger a response somewhere else. For example, when the body detects blood sugar is too high, the pancreas will put insulin into the blood which instructs other parts of the body to absorb more sugar and store it for later use. Hormones are secreted by endocrine glands. Cytokines work in a similar way, by don’t need a special organ to send the message.

Cytokines may be divided into six groups: interleukins, colony-stimulating factors, interferons, tumor necrosis factor, growth factors, and chemokines. I’m not going to go into all the details of these terms, but many have to do with stimulating the immune system. My speculation is that with the immune system activated for colds, we feel tired… which may be why I feel so tired. What I’m feeling is close to how I am tired when I am sick.

Of the list of groups, the tumor necrosis factor (TNF) sounds interesting. The TNF activates lymphocytes (a type of white blood cell ) to attack cancerous cells resulting in apoptosis. Apoptosis, as you may recall, is a self-destruct mechanism for damaged cells. rather than just dying, these damaged cells first cut all the DNA into tiny pieces to make sure it cannot be reused.

There are another set of cytokines that promote cell growth, which may not be a good thing. The articles I’ve read have not made the distinction of which types of cytokines are involved in the fatigue.

Somehow this makes me feel better, that maybe the fatigue is my body working overtime, in case there are a few more cancer cells lurking in the shadows.

It is startling the number of specialists involved in cancer care. I saw this list with far more medical descriptions of the jobs in a newsletter from Sloan Kettering. I was even more amazed at the number of these specialists I’ve worked with during my treatment.

Medical Oncologist : This is main doctor who oversees your full treatment, in addition to be the specialist to prescribe chemotherapy and decide when tests are done.

Surgical Oncologist: This is a surgeon, specializing in a specific type of cancer surgery. In my experience they also take quite an active role in patient care and follow up.

Anesthesiologist: The one who knocks you out during surgery.

Pathologist: This is the doctor who looks at biopsies and surgical material to evaluate the cells. The reports describe all sorts of features of the cells.

Nurses: At my hospital, we are assigned an oncology nurse to call for questions, once we start chemo. This is someone to call when we have questions that need an immediate answers, especially to find out if we should be worried about something.

Radiation Oncologist: This is the doctor who decides the details of radiation therapy and someone you see before and during the procedure. There is usually only one followup with this oncologist unless there is a reason to see more of him or her.

Interventional Radiologist: I don’t know if this is a Sloan Kettering name or more widespread term for a doctor who does other treatments that require things like CT, ultrasound or MRI to get it right. The biopsy doctors often fall into this category.

Radiologist: This is the doctor who looks at x-rays, MRI, and other diagnostic tests to identify any abnormalities.

Nuclear Medicine Specialist: This doctor is responsible for tests that require radioactive materials for diagnosis – things like the bone scan or the PET/CT scan. There are also some new treatments where radioactive materials are placed in or near a tumor site that would also be under this specialty.

Medical Physicist: This is the specialist in appropriate amounts of radiation for a particular patient. They also supervise the radionuclides used in Nuclear Medicine tests.

Radiation Therapist: This is the person who you see everyday working the machines at radiation treatments.

Genetic Cancer Specialist: This doctor takes cell samples from you and looks for things like the BRCA-1 gene for breast cancer. This doctor can be involved in any sort of treatment plan that uses genetics.

Endocrinologist: Hormones are important factors in many cancers. This is the specialist on hormones.

Gastroenterologist: A lot of people have gastroenterologists as their family doctor – they specialize in everything in your abdomen or related to eating.

Hematologist and Hematologic Oncologist: These are doctors who work primarily with blood – either in diagnosis or treatment.

Neurologist, Neuro-Oncologist, and Neurosurgeon: In charge of all things related to Nerves.

Physiatrist: This was a new one for me. This is a medical doctor specialized in physical impairments that are associated with cancer treatment or therapy. This doctor helps diagnose things for a physical therapy plan.

Pulmonologist: doctor of all things related to the lungs

Genetic Counselor: This is more the social worker/psychologist person who helps you understand and work through the results of genetic tests.

Nutritionist; helps you figure out what’s best to eat for health or if you are having problems eating during treatment.

Then even more social workers, psychiatrists, psychologists, physical and occupational therapists and more.

Adapted this from the Sloan-Kettering Newsletter, Dec 2010

This morning I did some medical reading – one looking at more detail on cancer treatment, the other on physiotherapy.

Most of the cancer book was highly technical, with lots of explanation on things happening on the genetic or molecular level which I skimmed over, looking for something that seemed to give  summaries of how this  all works.  It seems, at least on the over-view, I have a decent understanding of the types of things that currently affect treatment.

The book mentioned that although any tumor that has reached a blood or lymph vessel will shed off many millions of cells each day, only a very small portion of them ever attach elsewhere in the body.   I found this sort of creepy – the potential danger, yet somewhat counterbalanced by the information that most are disposed of by the body.

So much of medical treatment is based on statistics, there is still so much that is not fully understood on what actually stops the disease and allows us to return to healthy lives.   For each level of disease, there are always a few “miracle” cases, where no matter how awful the prognosis, a few survive.  There are too many factors to scientifically guess what makes the difference.

Over lunch I mentioned to my husband that I’d looked also at a book on physiotherapy.  He started laughing and said, “That explains a lot!”   On lazy, weekend mornings, we sit facing each other at the dining room table, each at our portable computers reading what interests us.

Apparently,  Philippe had noticed me reading – but making odd, large gestures as I read – both arms extended to the sides with hands toward the ceiling – as if I were invoking the heavens in some dramatic way.  He didn’t mention it to me at the time, but was relieved to hear I was testing movements described in the physiotherapy book.   It had not occurred to me that he might be watching, wondering what on earth I was doing.

I’m glad that got explained.  I do enough crazy stuff, I like have sane explanations sometimes.

The interesting part of the physiotherapy book told the importance of each step in healing a muscle or joint problem. Every problem can be involved in overall body posture – either a cause or side effect of some other issue.  Then there is range of movement at any particular joint – to assess which muscles are involved, and finally a test of strength of the muscles having trouble.

In physiotherapy, treatment begins by retraining the muscles to work together. The longer you wait to get treatment, the more you have all sorts of other muscles compensating for the ones that are not working right.  If we jump ahead to just strengthening a weak muscle, then it may make things worse.  The first step involves slow, very specific movements so that you can consciously be aware of which muscles are moving.   This builds the right habits of movement – just as if you were learning some sport or to play a musical instrument. Start slow, precise and later, it just flows.   This phase is usually the most painful, since it involves using and stretching tissue that you’d rather protect due to pain.

The second step is stabilizing.  This is a bigger movement, that requires the body to counterbalance the movement.  The point is to make sure that once you have weight and motion, the rest of your body is ready to do its part.

The third step is the obvious, building strength in the muscles that were weakened.

The final step improves power – the closest to normal movements  that require both strength and motion.

Too often, we just to work on gym equipment ( step 3) or an aerobics class or yoga (step 4) without doing the repair work of the first two steps.  This too often leads to pain, frustration and quitting exercise.

The book gave more insight into the exercises my surgeon gave me and other exercises I’ve had for my shoulder after previous surgery.   I really want to get full motion back.

So I’ve learned a bit this morning – feels good.