As I have mentioned on previous occasions, I subscribe to the Cancer Compass newsletter where I frequently come across items of interest. I read one such item yesterday, titled “A patient’s perception of peril can cloud treatment decisions.” It discusses the feelings surrounding a cancer diagnosis, feelings such as fear that can sometimes lead us to make mistakes.
An excerpt (you can read the full text here: http://tinyurl.com/344rsl): often, a patient’s perception of peril – whether before a screening test or upon a definitive diagnosis – exceeds the genuine risk and can cloud treatment decisions. The fear is a reflection, in many respects, of what science has wrought in recent decades: More cancers than ever are being diagnosed, and they’re being found earlier and earlier. Tumors that would have gone unnoticed and untreated in an earlier era are now identified and addressed, even when the benefits aren’t fully clear.
"We’ve exaggerated the efficacy of our treatment and prevention at the same time we’ve spread fear of cancer," said Dr. Robert A. Aronowitz of the University of Pennsylvania, who has studied the history of cancer extensively. "And it’s led to a lot of individual and policy level mistakes.”
The benefits aren’t fully clear?…We’ve exaggerated the efficacy of our treatment and prevention? Whoa!!!
This reminded me of when my former haematologist was pushing me to begin Velcade in the fall of 2005, and had introduced the possibility of chemotherapy even earlier that year. He told me that we shouldn’t wait until I began having symptoms (bone lesions and whatnot). Well, today I ask myself: where would I be now if I had been overcome by fear and followed his advice? I don’t mean to sound judgmental of those who choose conventional treatments, oh no, quite the opposite!…what I mean is that sometimes, or even frequently, as Dr. Aronowitz admits, our doctors tend to scare us…perhaps (!) unnecessarily…into making hasty decisions. Remember the case of Michael Gearin-Tosh? (see the link here on the right, under "MM blogs/sites.")
Cancer is still seen by many as a death sentence, so it’s natural to be scared. I have been scared, too. And, heck, I still have some fear on an occasional basis, in spite of my incurable () optimism. I have already written a bit about my reaction to finding out that I had benign MGUS (I burst into tears in my car) and, many years later, myeloma (a few more tears, soon replaced by determination). But, luckily for me, I was, still am, in an early stage, and had time to think and do research. I sought other medical opinions (Dr. Robert Kyle was one of the myeloma specialists who confirmed I was right to wait, by the way). If you are diagnosed with MGUS, SMM or MM (at any stage, but an early stage in particular), I urge you to read Michael Gearin-Tosh’s book, "Living Proof." He writes, if you are diagnosed with cancer, you need time to think. So true. Thinking is not enough, though. There are other things you can do. As follows.
We (patients) can ease the fear of cancer, according to the Cancer Compass article, by being informed. Find out everything that you possibly can about your type of cancer. A recent study found that men’s concerns about prostate cancer eased – once they received information via a sophisticated Internet program. Bingo!
Information, say cancer specialists, “is not only power. It can also forge hope. That’s exactly what happened when parents whose children were gravely ill with cancer received a more detailed description of how the disease might progress. The families getting the most information reported the greatest degree of hope, even in the face of a grim prognosis. And, even though such matters are not mentioned in this article (quelle surprise!), don’t forget to research, and speak to your healthcare provider about, diet and supplements.
When I was first diagnosed with myeloma, some of Stefano’s relatives became concerned that I was doing so much research online. "It is better for her not to know," they whispered to him. Well, today I feel vindicated: it is better to KNOW.
The Cancer Compass article mentions something that I have experienced, too. That I still experience, in fact! Whenever I get an unfamiliar or odd ache or pain, the first thing that pops into my mind is “oh bother, is this the myeloma, is this a bone lesion?” (Okay, so I use much stronger words than "bother"! ). Apparently, that’s a normal reaction (phew). So what do I do about it? Well, I simply tell myself not to be silly, shrug my shoulders and forget about it. The pain goes away.
I’d like to end today’s post with the following excerpt from "Living Proof": Even if you find it difficult to go so far in your own thinking, active involvement in your therapy may lead to your consciousness and subconscious to trigger complex biological creativities, a presence in you of ‘decisions of endless creation’ that may help to fight a terrible disease.
Thank you, Michael.
How very true, Margaret; and how very wise your comments.
Well said. Thank you, once again, Margaret.
This is so true…I was told by half of my friends and family to stay “off the internet” because I had, in fact, diagnosed my own MM when I received results on kidney tests. My research made it clear that the M-protein in my urinalysis could only come from MM. Fortunately (?), this allowed me to forgo a scheduled kidney biopsy, and when I called to ask if I shouldn’t just have a bone marrow biopsy instead they agreed. I think that everyone who reads your blog, or joins the MM listserv, does it to stay more informed. I truly feel it is the only way to proceed intelligently in helping choose the proper treatment. I love my doctors, but never just take what they tell me at face value. I research EVERYTHING. And this empowers me in my personal battle against the beast.
Thanks for sharing this; you and I are of like minds.
I agree with you 100% Margaret. Paul