March 14 2008 post. 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.
July 28 2008 post (excerpt): On Friday night I had a particularly bad nightmare that startled me awake. In my dream, I was having some sort of heated discussion with someone (I don’t remember a lot of details, but I was not arguing with Stefano) when all of a sudden I burst into tears and began shrieking, in Italian: “What do I care about that? That’s not important! Don’t you understand that myeloma is killing me??? Myeloma is killing me!!!” Il mieloma mi sta uccidendo!!! I remember those words very clearly.
That sentence and my desperate dream sobs still echo in my mind. So much so that I decided to write about it today. I have reached the conclusion that a part of me is really scared. It’s a deep down, hidden part that has already surfaced on a few occasions…so I knew of its existence. But now, for the first time, I have begun to acknowledge that I may be split into two selves: the cheerful, confident, optimistic me & the frightened, anxious, “what if…!” me. Luckily, the former is dominant. Very much so!
I am strong, I am positive, I am determined. But, it would seem, on some level I am also frightened of what may lie ahead.
I guess I’m human, after all…
Posted a long time ago, I know! Just reading some of your earlier info Margaret, I take issue a little bit with this one. Cancer diagnosis, as I am sure you know can cause debilitation and panic for some time, often disbelief and determination to fight it whatever happens. Also for the wise amongst us ( I try to put myself in that bracket) a search for a non chemo way to deal with it.
Living Proof describes it very well, and for Michael the availability of money, good contacts and no need to work gave him time to have what seemed like a life of panic and desperation to not go down the treatment route. He became poorly, he had help and well educated friends and time to try treatments that were not in the standard medical book. In the end something worked for him, no one actually knows what, but he was an very lucky man. Most of us do not have those opportunities.
Looking at my own charts over the last 7 months, and using Curcumin and IP6 I can see some changes, mainly I think due to IP6, but not enough, both serum urea and serum calcium were happily increasing and haemaglobin happily decrceasing. No amount of unconventional therapy was changing that. Those three made me poorly and the CTD drugs I have now been taking for 5 weeks have made me better with very few side effects. I feel better than I have in 18 months.
What I am really saying is that yes it is ok to be scared, it is ok to research, it is ok to put off treatment until the last minute, and until you can say other ways do not work, but, my message, don’t put off treatment too long in lieu of another cure, once you are beyond smouldering myeloma, you need all the treatment you can get.