Positives of Patient Involvement

Patients should be involved in their treatment. Of course, they already are involved insofar as the are the object of said treatment. But my meaning is that patients should take a strong hand in the decisions about treatment for their cancer. In conversations with other victims of Multiple Myeloma where I assert involvement in the medical strategies, it’s not unusual to have people respond something to the effect “I leave it to my doctor. I don’t know anything about medicine.” I have also had doctors tell me the same thing, or essentially so, saying that I was not qualified to insert myself into the treatment choice process, and should just follow the directions of my doctor.

That’s a load of bovine effluence. People know a lot about themselves, but they rarely have occasion to assemble their knowledge in a way they can assess it. A cancer diagnosis is good cause to stop and think, especially within the context of proposed treatments. But first, a little bit of research is necessary. Fortunately, the Internet makes this a lot more possible than it would have been prior to its current ubiquity. Most people sit down in front of their computers, call up Google, and the first thing they search on is the name of their suggested therapy compound, followed by the words “side effects.” Ergo, an example might be “Velcade, side effects.” We all tend to get straight to the chase, wondering what chemotherapy is going to do to us.

But a better strategy is to type something like “How Velcade works,” or the same except substituting Revlimid, Doxorubicin, or whichever compound has been suggested. Many sites are oriented toward physicians and the explanations displayed may as well be in sanskrit. A lay person has no hope of understanding what is being said or the implications of the information. But a little perseverence will produce more simplistic explanations. For the “big three” available therapies, I can give you a simplistic explanation of their workings:

Velcade inhibits the generation of proteins. Unwanted proteins are a manifestation of standard form Multiple Myeloma, so inhibiting their creation inhibits the cancer.

Thalidomide inhibits the growth of blood vessels. Production of vessels is necessary to grow tumors and supply cancerous areas with nutrients, inhibiting the cancer.

Doxorubicin kills cells, especially active cells. Since cancer is the overproduction of cells, the compound directs the majority of its toxicity to the cancer, inhibiting its growth.

This is ultra simplistic, but it’s really all one needs to know to start comparing treatment suggestions to what people know about themselves and the form of Multiple Myeloma they developed and its diagnosed stage. There are mainly three manifestations of Multiple Myeloma: MGUS, which means smoldering. The cancer is on the verge of breaking out but hasn’t done so yet. This is most commonly a stage one situation. The next manifestation is the standard form of Multiple Myeloma and is evidenced by the production of unwanted proteins. The likelihood is that people with visible proteins in their blood and urine will be in stages two or three, depending on the progressed rate of the cancer. The last manifestation is non-secretory Multiple Myeloma, a type of the cancer which produces no proteins and is only detectable through PET scans and bone marrow biopsies or aspirations.

Your oncologist or hematologist will tell you what form of Multiple Myeloma you have, and will have determined its stage. This is the point at which you begin to compare what you know about yourself to what you have learned about the different agents available to combat your condition. Another viable tool in the arsenal is the stem cell transplant. Cancer only grows through the building mechanism of stem cells, so killing off all of the corrupted stem cells and replacing them with uncorrupted cells can, in a perfect world, remove the cancer from the body. We don’t live in a perfect world, and so remission, sometimes even in the long term is possible. There is no cure for Multiple Myeloma though, because we have so far not developed any therapies which can totally eradicate the cancer from the body. But before any of the available therapies are employed, some serious background information needs to be applied.

People tend to know their own weakness. They know if they’ve always had a propensity for bruising, catching infections, colds, flu viruses and so on. People tend to be aware of their strengths, like how quickly they heal in the face of medical issues, their general energy level and stamina. They will know these things much better than their physicians, who only know what they are told, and quite often they’re only given a picture of the problems faced which brought their patient to them. While medical histories are almost always collected, there is still a lot these histories don’t include. This consideration is the key to the requiring of patients to get involved with the planning and execution of their treatment. Good doctors relish and encourage patient participation. Those who don’t should be avoided and replaced as soon as their hubris is detected. A know-it-all attitude in a  physician can actually be a deadly prospect for someone suffering Multiple Myeloma. But so can a patient who doesn’t take every opportunity to inform their treatment specialists about themselves by participating hand in glove.

I’m not here to advocate that patients tell their doctors what to prescribe for them or to suggest that they should develop as much knowledge about their cancer and the tools to fight it as possessed by their doctors. What I am professing is that they should be involved, committee style, participating in the strategizing of their treatment vehicle(s) and scheduling. This is no difference than non-politicians involving themselves in political sterring committees to give insights that those focused on politics are likely to be ignorant of. Lay perspective can be invaluable because it fills in details that are exceptionally necessary in order to craft the very best approach to treatment.

The brochures and handouts delivered to patients are, for the most part, developed by those with a strong focus on treatment. There’s a good chance that they will be either terribly generic as to be too vague to be helpful, or so product centered that they imply no other considerations should apply. That’s why those diagnosed with Multiple Myeloma should avail themselves to the vast amounts of information about their condition, and the tools available to combat it. Then they should take a seat at the table and discuss their situation with their doctors and other team participants, using what they know of themselves and their cancer, to participate in the development of a strategy for health.