The "Pop" Report
This is an update from Pop, Forester’s Charleston grandfather (Whitney's Dad). He has been on hand for briefings from doctors and our friends who are medical professionals, and has done considerable research online.
As most of you know, Forester’s tumor was a medulloblastoma, a single tumor attached to the brain stem, beneath the cerebellum. The result of the surgery was a “gross total resection,” which translates to “they got it all.”
The following, as well as other material I will quote, comes from a brochure on medulloblastoma published by the American Brain Tumor Association, the most comprehensive consumer reference I have found.
Removing as much tumor as possible is the most
important step in treating medulloblastoma. The
neurosurgeon has three goals for the surgery: To
relieve cerebrospinal ﬂuid buildup caused by
tumor or swelling; to conﬁrm the diagnosis by
obtaining a tissue sample; and to remove as much
tumor as possible with minimal neurological
damage. Several studies have shown the best
chance for long-term tumor control is when all of
the medulloblastoma visible to the
neurosurgeon’s eye can be removed safely.
We were briefed on a range of side effects which could appear after surgery and caused by the surgery itself, including difficulties with visual and verbal processing. Fortunately, we have seen none of these with Forester. He is still drowsy and fatigued, but that’s normal. He can talk and read and remember and laugh just as he did before.
Medulloblastoma tumors are classified by “M stage,” a medical way of indicating the degree of metastasis (tumor spread) if any.
M0 means no evidence of metastasis has been
found — the tumor appears to be limited to
the area in which it grew.
M1 means there are tumor cells in the spinal
M2 means the tumor has spread within the
M3 means the tumor has spread into the spine.
M4 means tumor spread away from the brain or
spine (for example, in the very rare situation in
which the medulloblastoma spreads to chest or bones)
MRI testing shows no spread of Forester’s tumor into the spine or other parts of the brain (and so not to the chest or bones). Forester had a spinal tap and no abnormal cells were found in the spine. Regardless, his radiation would include the spine as well as the cranium.
Children are considered at “average-risk” of
recurrence if they are diagnosed after age 3; if all,
or nearly all, of the tumor is surgically removed;
and if there is no evidence of metastases or tumor
All other pediatric medulloblastomas are considered to be at “high-risk” of recurrence. High-risk patients include those under age 3; if more than 1.5 cm (about 1/2 inch) of tumor volume remains following surgery; or if there is
any evidence that the disease has spread.
Forester is obviously considered average risk. The pathology on his tumor shows an “anaplastic” submolecular structure, which is not the least fastest growing nor is it the fastest growing.
This week, we meet with Forester’s oncologist who will brief us on is treatment plan. We do know it will include both radiation and chemotherapy.
Following surgery, medulloblastoma is usually
treated with radiation therapy. It is an important
“next-step” because microscopic tumor cells can
remain in the surrounding brain tissue even after
surgery has successfully removed the entire visible
tumor. Since these remaining cells can lead to
tumor regrowth, the goal of radiation therapy is to
reduce the number of left-over cells.
Chemotherapy is now a standard part of treatment
for children with medulloblastoma. For children with medulloblastoma, chemotherapy is used to reduce the risk of tumor cells spreading through the spinal ﬂuid.
Most children are treated in clinical trials — organized studies that are helping determine which treatments are
most effective. Clinical trials also offer a formal
way to test new therapies against existing
therapies to learn which is better.
In children at average-risk of recurrence, current
studies are exploring the use of chemotherapy as a
way to reduce the total amount of craniospinal
How well a patient responds to treatment is
affected by their age at the time of diagnosis (7 is very good); the size and extent of the tumor (average size, limited to the brain stem); the amount of mass that can be removed safely (all); and the M Stage (so far, M0).
With current therapies,70% – 80% of children
with average-risk medulloblastoma can be
expected to be alive and free of disease ﬁve years
from diagnosis. Even in those children with high-
risk disease, effective therapy is possible and
results in long-term disease control in as high as
60% – 65% of patients.
Our doctors have told us that the above figures are based on 10- and 15-year studies, and that recent outcomes are even more positive.
Forester’s treatment protocol will probably have months of radiation and chemotherapy, so he has a tough road ahead of him. This is what the brochure said about side effects:
In the short-term, fatigue, lack of appetite, nausea, sore throat, difficulty swallowing, and hair loss in the path of the radiation beams are the most common acute effects of this treatment. Adults seem to experience these temporary, short-
term effects to a greater degree than children.
Children do run the risk of longer term effects, including learning disabilities and attention deficit disorder. However, those under 3 are most at risk and the older the child, the less likely he or she will have long-term effects. Further, the work of radiation therapy is now being accomplished with ever lower levels of radiation.
Forester appears to be one of the fortunate ones who has a strong chance of a long-term cure. He is especially fortunate to have so many friends who care about him and are praying for him.
5 weeks ago