Respect is hard to win, easy to lose
One of the more important functions that goes with my “job” is reviewing medical histories of patients and providing them with guidance to the best of my ability. Over the years I have heard from thousands of you. Many times it may be no more than suggesting a good place to go for a second opinion, or translating lab report jargon into plain English so that the motivated patient can get a better handle on their situation. Sometimes I am the voice of validation that a patient needs, just a little encouragement that he is making the right decisions. But a few times it is my “bad cop” duty to administer a swift kick in the rear-end to patients who are obviously shooting themselves in the foot.
Often, patients send me their medical information because they are frustrated by the level of attention they are getting from their own doctors. I am only too willing to take their side in this battle. But just once in a while I can understand the frustration of the doctors involved. A patient came to me the other day. This was a lucky patient, with an admirably well behaved CLL smoldering along at a snail’s pace, terrific prognostic indicators. Unfortunately, patient also had a long track record of all sorts of skin cancer (melanoma, basal cell carcinoma, squamous cell carcinoma) and several other serious health issues (emphysema) besides. My empathic juices were flowing, I was all ready to become indignant about the heartless doctors who failed to go the extra mile and give this poor patient every bit of help humanly possible.
Then I saw the deal-killer, the single sentence in the patient’s medical history file that just about made me close it and quit wasting my time on a battle with foregone conclusion. This is the kiss-of-death sentence that sends an unmistakable message to doctors:
“Patient is a long term heavy smoker that continues to chain-smoke to this day”
If you do not care, why should anyone else?
No wonder this patient was getting little time and less sympathy and attention from doctors. That single sentence is like a “kick me” sign on her backside. I mean, why would anyone want to waste time on a case where the patient has clearly demonstrated no desire to be a part of the solution? Physicians are human beings too. We all like to invest in situations where there is a chance of winning, not when the game is rigged and our hands are tied behind our backs.
I have never smoked, so I do not know how hard it is to quit. I will accept that is very hard to do. But you should know the cost of what you choose to do. If you continue smoking even after a confirmed cancer diagnosis, be prepared to lose a very significant part of sympathy and empathy from your healthcare team. You go from the blameless cancer patient that tugs at heart strings to the wretch that has no one to blame but himself, more or less, in one fell swoop.
Respect is hard won, easy to lose. In my “job” I get to hear a lot of anecdotal stories, both from patients and their doctors. We are all familiar with the doctors from hell, the ones with no compassion and who think their white coat gives them an automatic right to arrogance, whether or not they actually have any competence to be arrogant about. How about the other side of the coin, the patient that is everyone’s least favorite patient? Do you ever wonder what you can do to get your doctor’s respect, develop a real solid working relationship with your medical team? Hypochondria is a real drag, as is a patient who latches on to every crazy fad diet and nonsense potion out there to “cure” his CLL, wasting his doctor’s time to boot. But a patient who is serious about doing what she / he can to improve his health is always appreciated. Your respect for your health and your body gets you back equal respect from your doctors.
One in three cancers may be preventable
Isn’t that a little after the fact, you might ask. After all, the members reading this website are here because they have CLL – I doubt too many others will bother spending time on this definitely not-for-frivolity-and-amusement site. So, why am I wasting your time and telling you about bolting the barn door after the horse has fled the county?
Because there is documented evidence for increased incidence of secondary cancers in CLL patients, second cancers that can quickly take center stage and become a lot more deadly than the good ol’ CLL, that’s why. It is these pesky second cancers that I would like you to think about, see what you can do to reduce your risks.
Skin cancer is the biggest of possible secondary cancers. I hope most of you are aware of this by now. I have preached the sermon often enough from this soap box. The other one might surprise you: aggressive lung cancer. I have lost good friends to both lung cancer and skin cancer, CLL patients that had enviable CLL prognostics but fell victims to a curve ball coming in from left field.
As the abstract below points out, CLL patients are more than twice as likely to get secondary cancers. And having a secondary cancer reduces your chances of getting deep and long lasting remissions. CLL response rates drop – on average – from 92% to 86% in patients with a second cancer. Only 70% of CLL patients with a second cancer were alive at the 5 year mark, compared to 82% who did not have this additional complication. That is a huge 12% difference between being alive and dead.
J Clin Oncol. 2009 Feb 20;27(6):904-10. Epub 2008 Dec 29.
Other malignancies in chronic lymphocytic leukemia/small lymphocytic lymphoma.
Tsimberidou AM, Wen S, McLaughlin P, O’Brien S, Wierda WG, Lerner S, Strom S, Freireich EJ, Medeiros LJ, Kantarjian HM, Keating MJ.
Department of Leukemia, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Blvd, Unit 455, Houston, TX 77030, USA. firstname.lastname@example.org
PURPOSE: Other malignancies have been reported to occur with increased frequency in chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL). The aim of this study was to determine the frequency, outcomes, and factors associated with other cancers in patients with CLL/SLL.
PATIENTS AND METHODS: We reviewed the records of consecutive patients with previously untreated CLL/SLL seen at The University of Texas M. D. Anderson Cancer Center from 1985 to 2005. The number of second cancers observed was compared with the number expected from the Surveillance, Epidemiology, and End Results database.
RESULTS: Among 2,028 patients, 324 (16%) had a history of other cancers and 227 (11.2%) developed other malignancies during the follow-up period. Overall, 625 cancers were observed in 551 patients, including skin (30%), prostate (13%), breast (9%), melanoma (8%), lymphoma (8%), gastrointestinal (9%), lung (6%), and other cancers (17%). The risk of a second cancer was 2.2 times higher than the expected risk. The response rates in patients with and without a history of other cancers were 86% and 92%, respectively (P = .04), and the 5-year survival rates were 70% and 82%, respectively (P < .001). In Cox analysis, independent factors predicting development of new cancers were older age, male sex, and elevated levels of beta2-microglobulin, lactate dehydrogenase, and creatinine. In patients who were treated for CLL/SLL, the treatment regimen did not affect the risk of subsequent cancer (P = .49).
CONCLUSION: Patients with CLL/SLL have more than twice the risk of developing a second cancer and an increased frequency of certain cancer types. Awareness of risk factors could permit early detection.
So, is there anything we can do to reduce our risk of second cancers? Please remember, I am not talking about eliminating risk, just reducing it to the best of our ability. Sometimes the best we can do is not good enough. But sometimes it is, and that is what I want you to focus on.
Below is a list from an article in WebMD, citing two reputable organizations giving us their take on the percentage of preventable cancers in this country and else where. According to their estimation, about a third of adult cancers may be prevented by paying attention to diet, physical activity and avoiding obesity. That is not even counting smoking, the single biggest risk factor for lung cancer and a host of other cancers as well.
• 38% of breast cancers
• 45% of colorectal cancers
• 36% of lung cancers
• 39% of pancreatic cancers
• 47% of stomach cancers
• 69% of esophageal cancers
• 63% of cancers of the mouth, pharynx, or larynx
• 70% of endometrial cancers
• 24% of kidney cancers
• 21% of gallbladder cancers
• 15% of liver cancers
• 11% of prostate cancers
Controlling the things that are within our control
Many things in life are not within your control. I doubt you “did” anything to become the proud owner of CLL. Perhaps it was baked in your genes, a case of familial CLL that your parents surely did not want you to inherit. Perhaps it had something to do with that bad case of infectious mononucleosis that had you flat on your back all through senior year in high school. Perhaps it is truly a case of “sporadic CLL”, you were unlucky enough to win this particular happenstance lottery.
Whatever the reason, the fact of your CLL diagnosis makes some other aspects of your health come into sharper focus. Infections are always a huge issue for CLL patients. After all, CLL is a cancer of the very immune system that is supposed to protect you against infections. The response to pathogens is either so over the top that it is dangerous by its own self (as in exaggerated response to bug bites) or so wimpy that infections are allowed to dig in and make a nice home for themselves without meeting any resistance. A nice, well balanced and effective response to pathogens is not often in the cards for CLL patients.
Winter flu season is approaching. How many of you have had your flu shot? Even more important, how many of you are strongly encouraging your family and friends to get the flu shot, so that you get some level of “herd immunity” from the flu bug this year? How many of you practice “social distancing” as appropriate to protect yourself during this holiday season?
Since your immune system is not exactly up to speed, it is important that your brain gives it an assist. New year is approaching, along with the traditional time for making fresh starts. The life you save may be your own.