pecific information on
long-term morbidity and mortality of highly toxic conventional
treatments for Hodgkin's lymphoma is - for some reason - hard to
come by where it should be given to you: doctor's office, hospitals,
and governmental health organizations. Is there something to hide
here? Read on, and decide for yourself.
It has to come as a surprise that there is no
complete, reliable database on longer-term mortality related to the standard
therapies for pediatric Hodgkin's. The National Cancer Institute
(NCI) still sticks to its figure of 91% 5-year survival rate based
on data from 1985-94 period, for "children under 20 years of age".
Granted, it may not
have much of a reason to hurry with the update, since that
rate ticked up only four percentage points vs. 1975-84 period.
Media - and medical journal articles - often report that the
"success rate" of conventional cytotoxic treatments for Hodgkin's has "dramatically" improved in the last
3-4 decades, making it reliable, near bullet-proof cure. Excuse me?
Someone's got something backwards here. What is dramatic about the whole thing is that
they - pharmaceutical industry and medical establishment - in the very beginning, decided to use a highly toxic treatment,
because they didn't know better. It is dramatic
- often tragic - that they were literally learning - and still do - on children what is too toxic to be used. No one sane
would call this highly toxic treatment,
with devastating immediate and
long-term health effects,
a "cure". It is simple the
lesser of two evils, becoming somewhat less bad measured by the
frequency of often horrible
side-effects it inflicts to children (and adults). Please,
glorify it as near-ultimate in medicine and healing.
We have already mentioned that Daniel's statistical chances of being
alive in 5 years with this treatment are probably within
But this statistics is for
Being forced to
it against his and his parent's will certainly doesn't make his
survival chances better - to the contrary. Without guessing how
detrimental it will be in Daniel's case, let's just conclude that Daniel and his
parents are forced to a therapy that gives him less than 1 in 8
chance - possibly significantly less - of being alive in 5 years.
That still should be better than no treatment, no?
What are his chances without treatment? The data is scarce, and
dated. Some 90 years ago, there is a report that untreated Hodgkin's
patients lived 18 months on average (Ewing, Neoplastic diseases,
1920). Some 70 years ago, Craft recorded that about 6% of untreated
Hodgkin's cases lived 5 years after diagnosis (Results with
Roentgen Ray Therapy in Hodgkins Disease, 1940). In 1956, Yue
et al study describes a man that lived 11 years without treatment after
being diagnosed with Hodgkin's (Miliary Tuberculosis and
Hodgkin's Disease), and may have died at least in part as a
result of his tuberculosis treatment.
This indicates that the chances of surviving 5 years or more without treatment, after being
diagnosed with Hodgkin's are likely less than one tenth of
those with the voluntary
no one is advocating "no treatment" option.
All that has been
learned about human health in general, and malignancies in
particular, since those days gives also realistic expectations that,
if patient would be actively pursuing an alternative treatment under
professional guidance, his chances to be alive in 5 years would
be significantly better than in those days. They could be comparable to that with the
conventional treatment, perhaps even better?
How do we ever get to
know if we don't give it a fair try?
Surviving the first 5 years is, of course, very important, but two
unavoidable questions are: (1) what are child's survival prospects after
that and (2) how the treatment affects its quality of life?
There is no specific official data on these two aspect of
the standard Hodgkin's treatments. One would expect that the
government should at least obtain - and present - that
about a treatment
before stepping in to enforce it by law.
Well, it did not. For some reason, the research on long term
mortality and quality of life after the standard Hodgkin's treatment
is limited in general, and particularly scarce when it comes to
children. But there is enough data from studies to date to put together a
Turns out, it is becoming worse as we
go further beyond that first 5-year post-treatment period. For research data, we
have to depend on a decade old study at the St. Jude Children's
Research Hospital (Hudson et al,
Increased Mortality After
Successful Treatment for Hodgkin's Disease, Journal of Clinical
Oncology 1998). Through four subsequent clinical
trials, the study followed a total of 387 children and adolescents
treated for Hodgkin's at St. Jude from 1968 to 1990. As of April
1997, with the median follow up period of 15.1 years, 316 were still
Most of the 71 who died died from Hodgkin's (36), followed by
second malignancy (14), infections (7), heart disease (6), accidents
(6), suicide (1) and asphyxiation (1). The risk of developing
disease was 12 times higher than in the general population for that
age group for second malignancies, 81 times for acute myeloid
leukemia, 11 times for solid tumors, 33 times for breast cancer. The
risk of dying from cardiac disease was 22 times higher, and 18
times higher for dying from infection.
Most children (66%) were treated by combined chemo/radiation, and
the rest either by radiation (30%) or chemo (4%) alone.
In order to broaden this single-study picture, we'll take a look
at two other late-effect studies that also include adults. One is a
2003 Dutch study on 1261 patients treated for Hodgkin's before age
41 (26% under age 20, median age at the start of treatment 26 years) between 1965 and 1988 (Aleman et al,
Long-Term Cause-Specific Mortality
of Patients Treated for Hodgkins Disease), and the other
is 1997 Stanford University study on 2498 patients treated between
1965 and 1995 (R.T. Hope, Hodgkin's disease: Complications of
therapy and excess mortality), which doesn't supply age data.
Graphs below summarize the results of these two studies.
Despite inevitable differences, there are striking similarities
in the big picture between these two studies. In both the rate of
dying from Hodgkin's lymphoma is by far the dominant cause of death in
approximately first 5 years after treatment, after which it declines
and nearly flattens after the 10-year mark. On the other hand, deaths
due to other causes are only a fraction of all deaths within the
first few years, but keep mounting at an accelerated rate as far as
30 years after treatment.
In fact, 30 years after treatment,
nearly 2/3 of all patients are dead
in the Dutch study: about 24% from Hodgkin's, and nearly 40% from
other causes (over 20% from other
malignancies, nearly 10% from cardiovascular diseases). The study reports 22% of the patients still
alive after 25 years, with the median survival estimated at 28.7
The Stanford study gives nearly identical prognosis: only about 30% of patients
is expected to be alive at the 30-year mark.
Comparing St. Jude's children study with these two, the most
significant difference is in the total mortality rate at 15 years
after treatment. In the St. Jude's study it is roughly one half of the
averaged mortality rate in the Dutch - still quite young with 26
years of age average at the time of treatment - and Stanford studies.
There is no factual basis for long-term mortality rate in
children treated for Hodgkin's to be so much lower than for the
general population. It is known that children are, in general, more
vulnerable to late effects of treatment toxicity (in the Dutch
the risk of dying from solid tumors, leukemia or heart
was the highest for those below 20 years of age
at the start
of treatment). Comparing St. Jude's data with those of the Late
Effects Study Group, we see that their respective rates of incidence
for mortality from secondary malignancy are 3.6% (15.1-year follow
up) and 10.4% (17-year follow up). While it can be expected that the
latter study has higher incidence, due to its period partly
extending into pre-60s, when more intense, single modality
treatments were used, the ratio of nearly 3 to 1 is unrealistically
There are also other studies that include adults coming up with
significantly higher mortality rate than the above mentioned Dutch
and Stanford studies. For instance, in a Spanish study on 477 patients treated for
Hodgkin's from 1967 to 1993, the overall survival rate at 15 years
after diagnosis was only 64%, with nearly equal proportion of
favorable and unfavorable cases (Provencio et al,
the long-term mortality in Hodgkin's disease patients with that of
the general population, 1999).
Going back to the Dutch study, it had as high as 50% rate of
salvage chemo treatments (additional treatment after the initial one
fails). This indicates that the initial treatment may have been made
deliberately less intensive - to minimize toxicity - failing to
either initiate response, or to produce remission. As a result, many
more salvage treatments were necessary, possibly making the therapy more, not
less toxic, and long-term prospects significantly less
On the other hand, in the St. Jude's children study, there was
only 67 remissions (17%), but those that have not responded, or have
only partly responded to treatments, were removed from the study.
That is hardly justifiable, since all the cases should be counted.
If child dies at any time after diagnosis because
therapy didn't work for it, that should certainly be included
in numbers indicating treatment efficacy and risks. Limiting the study
to children having complete or near-complete response to the
treatment had obviously produced
unrealisticaly high rate
of treatment's efficacy/safety.
"Technicalities" like these, that vary from one study to another, are
also part of the reason why their results differ, not seldom
significantly. But the information they supply is sufficient to get
the idea about the range of long-term mortality for children
conventionally treated for Hodgkin's disease.
The low point for 20-year mortality is 22% (St. Jude), and the
high point - omitting the Spanish study - is 52% (Netherlands Cancer
Institute). Since information available suggests that the former is
more optimistic, and the latter more pessimistic than what
underlying fundamentals suggest, our rough approximation lends at
their combined average, 36% or, rounded off, 1/3. In other words,
one out of three
children treated for Hodgkin's
with conventional therapy is likely to be dead
20 years after their treatment.
But it gets worse for Daniel. One reason is that his IIB
Hodgkin's stage is unfavorable
prognostic factor for the conventional treatment. The other is that the trauma of deeply disturbing
confrontation with authorities, of being forced to therapy against
his and his parents' will - on top of being traumatized by serious
illness - can have devastating consequences. No one knows how much
it will lessen his chances to be still alive 20 years from now - he
would be only 33 at that time - but
they may not be better than 1 in 2 - maybe not even that much.
And it is not only about survival. It matters very much to him
and his parents - and it should matter to everyone else - how good a
life Daniel will have. All of the facts that we have suggest that
not likely to have good life after conventional treatment
The above mortality data suggests very clearly that serious
chronic conditions are likely to be a part of child's life long
after its conventional treatment for Hodgkin's is over.
Again, there is no specific official data on the overall
morbidity resulting from conventional treatment for Hodgkin's, as
well as for conventional cancer treatments in general. But a few
studies examining post-treatment morbidity for conventional cancer
treatments (chemo/radiation) are fairly consistent in their results.
According to the largest of these studies, on 10,397 survivors of
childhood cancer treated with chemo and/or radiation between 1970
and 1986, about 2 in 3
report at least one chronic health condition, 1 in 3
report a serious or life-threatening disease - four times higher
incidence than in the general population - and 1 in 3 report multiple health conditions (Oeffinger
et al, Prevalence and severity of chronic diseases in adult
survivors of childhood cancer: a report from the Childhood Cancer
Survivor Study, 2005).
The study has found that those treated for Hodgkin's or brain
tumor are at highest risk from developing serious chronic diseases
down the road. This indicates that among children conventionally treated for Hodgkin's
MORE than 2 in
3 suffer from chronic health condition,
MORE than 1 in 3 have
serious or life-threatening disease, and MORE than 1 in 3 have multiple
by the time they averaged 26.6 years of
age, or so (the figure is for the entire study population).
Evidently, in addition to their life expectancy being severely
reduced, all but very few of the children subjected to the
conventional Hodgkin's treatments are bound to develop chronic
diseases, including those life-threatening, as a result of their
With these specific mortality and morbidity figures, the
conventional treatment for Hodgkin's is beginning to look as much less of a
"success" than in its typical official and media presentations.
Let's take another look at it.
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