My Personal Cancer Journey — Barbara & I, #6

The topic of this post, the last in my series about Barbara, is realistic expectations. When Barbara & I consulted with physicians in Boston to get second opinions about our cancers, we received very different prognoses.

Barbara went to Dana-Farber, perhaps the most prestigious hospital in New England for cancer. The doctor she saw, when asked about life expectancy, told Barbara that estimates of lifetimes with Stage 4 Lung Cancer range from 6 months to 10 years. He said further that, because she was so healthy, she should expect to be on the longer side of the range, perhaps 5 years or more. How could he have been so wrong? How could she have died in less than 17 weeks? More importantly, we, her family & friends, believed him and thought that we had plenty of time with Barbara before she approached death. We did not take her situation seriously enough at the beginning of her treatments and therefore, did not appreciate the urgency of Barbara’s situation.

On the other hand, when I went to Mass General (after our very negative experience with Dana-Farber, I decided that I would never go there), I was given a more optimisitic prognosis than my original expectation — 3 years versus 15-16 months — but somehow the Mass General estimate seems much more realistic. Of course, no one really knows; it is certainly possible that I will not survive longer than 15 months, but my health situation at this point suggests much longer.

So how could estimates from two very distinguished and respected hospitals be so different? How could one be so wrong and other seem so right? Perhaps doctors should not give estimates at all. Certainly they should make every effort to give a realistic life expectancy rather than try to placate patients by giving them false hope. False hope leads to complacency and high expectations and can prevent people from taking their death sentence seriously.

Lastly, lest my readers get the wrong impression. I am not saying here that Dana-Farber is a bad hospital, not at all. All I am pointing out in the post is that ONE DOCTOR at Dana-Farber appears to have given a very unrealistic estimate of life expectancy to ONE CANCER PATIENT. Hopefully, this sort of thing doesn’t happen very often.

To sum up, what are the lessons one should learn from Barbara’s experience compared to mine? I think the following are important things to consider with terminal cancer:

1. There should be one (1) and only one (1) doctor in charge of the entire treatment. A corollary to this rule is that family and friends should be told to offer POSITIVE SUPPORT ONLY, no contradictions of the doctor-in-charge.

2. Time is of the essence in terminal cancer. Every effort should be made to begin and to continue treatment as quickly as possible.

3. Managing pain is the single most important consideration with the treatment plan. Pain changes everything, so must be controlled.

4. When considering a second opinion, insist that the consultation be brutally honest — no placating for the benefit of people’s feelings.

5. Once a terminal diagnosis has been received, this is not the time to change diet, begin taking vitamin supplements, etc. Concentrate on making the cancer patient’s last months the most stress-free, the most pleasant possible.


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