It seems a strange question to ask; surely everybody with cancer needs treating? Let me tell you a story about prostate cancer. This has suddenly got a lot commoner than it was. In the US it about 6 times as common as it was 30 years ago and in the UK about twice as common. The reason, of course, is prostate specific antigen (PSA) testing. Not everybody with a raised PSA has prostate cancer; in fact two thirds of men with a raised PSA don’t have prostate cancer. But the only was to be sure of that is to do a prostatic biopsy.
Said quickly that sounds simple. In practice it is most off-putting. A plastic probe one centimeter in diameter and nine inches long is covered in KY jelly and inserted through the anus. When positioned correctly by ultrasound guidance it is pressed against the front of the rectum and a biopsy needle fired. It feels like a dull thud hitting the prostate gland, but it doesn’t hurt exactly, unless it happens to catch a nerve. If it does then it causes an eye watering pain extending from the prostate down to the tip of the penis. When this has subsided, the operator does it again. Nine times.
You get the result a week or so later. Likely it will be benign, but if it shows cancer you then have the agonizing decision of whether to have surgery or just watch and wait. If you choose surgery you’d better choose your surgeon and carefully scrutinize his complication rate. For among the complications of successful surgery are incontinence and impotence. I remember a featured article in Reader’s Digest. The author was so grateful that he had a PSA test. He made a point of stressing how much his wife sympathized with him over his impotence.
Prostate cancer is currently three times as common in the US as in the UK. But the death rates in the two countries are exactly the same. Better surgeons in the US? Or better case selection in the UK?
With CLL the CBC is the screening test and people get one, not because they are looking for CLL, but for any and every other reason. Three-quarters of patients diagnosed with CLL have no symptoms referable to CLL when they have that first blood test.
In 1999 a large meta-analysis of several trials with 10 years of follow-up proved that there was no advantage for early treatment over waiting until symptoms began. Indeed in 1995, after 6 years of follow-up there was a possibility that those treated early did worse.
The problem with this analysis was that the treatment offered was old fashioned chlorambucil. Not only that, but the trial took in all comers; had they selected only those with bad prognostic markers the outcome might have been different, especially had they used one of the more recent treatment that give more complete remissions. This is a question still waiting to be answered, but trials are going on now in Europe to try and answer it.
In the meantime we are all signed up not to treat until the NCI guidelines are fulfilled. These are the NCI guidelines:
One of the items on the following list must be present:
1] Weight loss of more than 10% of body weight in the previous 6 months;
2] Extreme fatigue so that the patient cannot work of perform usual activities;
3] Fevers of greater than 100.5°F for at least 2 weeks without evidence of infection;
4] Night sweats without evidence of infection. They have to be severe.
5] Evidence of bone marrow failure shown by the development of, or worsening of, anemia or thrombocytopenia.
6] Autoimmune hemolytic anemia and/or thrombocytopenia poorly responsive to corticosteroids.
7] Massive splenomegaly (>2.5 inches below the ribcage).
8] Massive lymph nodes or clusters of nodes (>4 inches in longest diameter).
9] Increase in lymphocyte count by >50% over two months or an anticipated doubling time of <6 months.
However, a high lymphocyte count is not in itself an indication for treatment. For everybody else it is wait and worry or join one of those European trials of early treatment, or find a physician who likes to bend the rules a bit.
4 comments:
I don't understand what you are trying to say. Do you think those of us on watch and wait should be treated in one of the early clinical trials? What about our quality of life? If we have no symptoms and still manage the same as we did before diagnosis why should we submit ourselves to the side effects of treatement?
People tell me to forget about Cll and go on with my life. Which is hard to do once you know your are living with a ticking time bomb especially if you have some agressive prognostic indicators.
I will also post this on the cll listserve for comments.
Those who have poor prognostic indicators currently have to wait for symptoms to appear before starting treatment. But that advice dates from a time when it was impossible to recognise who had poor indicators and the best treatment on offer was chlorambucil. Early treatment might have been no better than watch and wait because patients who would never need treatment were treated unnecessarily and the only treatment given to those who could benefit from treatment was not good enough to cure them. What if something like fludarabine plus cyclophosphamide followed by Campath to eliminate MRD could cure CLL, but only if used very early in the disease when there was very little there? The only way to answer that question is with a randomized trial. Such trials are taking place in Europe, and one day the answer will be available for everybody in this position.
Terry, Thanks for writing. Your thoughtful comments are very helpful in making my decisions. Carolyn Swift
I had felt generally ill for about a year before seeking help from my GP - (I thought it was the onset of diabetes which is prevelant in my family)was then diagnosed with CLL. My main problem then and still is gross fatigue and frequent chest infections. Over the past six months I have gradually developed a great deal of discomfort/pain in my long bones and even after a nights rest I wake up with pains in the bones of my upper arms and to a lesser degree in my upper legs the pain improves after gentle exercise but never goes away completely. My last blood count jumped from 70 to 120000 over a three month period, I wil now be 'considered' for treatment at my next appointment but that is not until end of November. I have not read anywhere that people with CLL have these symptoms of aching long bones. Does this happen with CLL and if so what is happening inside my bones? I am about to engage in a program of swimming three times a week and regular distance walking (five miles)twice a week as I have found that when I was recovering from sickness in the past this helped me to recover more quickly. Thanks for your blog site and sharing your thoughts on so many subjects. Several years ago I was introduced to the John Main tradition of meditating - this has become an enormously important part of my life especially during the past year. Christian or other ways of meditating can indeed help through all that life throws up at us. Thank you Jan.
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