Living with Oligo

Medical Journey

Important Note:  The information on this page, and this website, is not written by neuro surgeons or neuro oncologists.  But, we do have a lot of exposure to the research and medical practice that Oligo survivors go through.  We have tried to make this both accurate and plain English.

Getting the Best Medical Advice and Care

While we wish the medical treatments and options for oligodendroglioma were a lot better than they are, it can still make a big difference where you are treated.  While competent and caring doctors can be found in any neuro-oncology dept., unless you are being seen at a leading brain cancer center there is a chance you may not be getting the best treatment for your situation.

The three main benefits of being with a top brain cancer center are:

Surgery

Surgery is the first treatment option in most cases and it is a critical issue to get all or as much of the tumor as possible without harming the patient.  Neurosurgical techniques continue to advance and you want to have the best technology, skill and experience working in your noggin.  For example, we have been contacted by people who have been told their tumor is inoperable, but when they were seen at leading institution, it was operable.   We also hear stories of people having to endure a second surgery just weeks after their first surgery because the surgeon “missed something.”  This is not something you want to go through.

Radiation

Radiation therapy is rarely the first treatment, but most Oligo survivors go through it at some point.  It is effective at killing the cancer cells, but also exposes a lot of healthy brain to radiation as well which can cause cognitive issues.  The goal should be to minimize the radiation exposure while hitting the treatment area with the desired dose.  The best brain cancer centers have the most advanced targeting technologies (IMRT, pencil beam, etc) and proton beam radiation.

Clinical Trials

Honestly, there aren’t currently many clinical trials for oligodendroglioma, but we are working to change that. In general, there are different types of trials, but most are available at only a handful of institutions and these tend to be the top places.  This may not seem like a big deal, but it can be if something better is becoming available or you or your loved one have exhausted the ‘standard of care.’

The Value of a Second Opinion

It is a wise move to get a second opinion on any serious medical decision.  This is doubly true for Oligo.  There are many hospitals and neuro oncology departments that have limited exposure to Oligo and even in the leading brain cancer centers there can be differing views of whether a tumor is operable or what treatments to pursue at any given time.  While there is in theory a ‘standard of care’ for Oligo, in practice there are different approaches within the surgery/radiation/chemo mix.

If you are going to get second opinion, we highly recommend you do so with one of the leading institutions. It may not be convenient, but it is worth the effort.

Know Your Cancer, Own Your Data

It is in your best interest to learn about oligodendroglioma and the specifics of your tumor since it can be important in the types of treatments that make sense for you—now and in the future. You should make it a policy to have your medical records (scans, pathology, genetic information) readily available so that you can easily consult with other doctors or takes steps to be included in a clinical trial.

Grades

Tumors have a grading system, Oligos are almost always grade 2 or 3.  Grade 2 means it is slower growing, Grade 3 (aka anaplastic oligodendroglioma) is faster growing.  Even Grade 3s are slower growing compared to grade 4 (Glioblastomas are Grade 4).  Grade 1 is considered benign, but unfortunately Oligos are never grade 1.

In the vast majority of cases, Grade 2s will become Grade 3s over time.  How long?  It is a wide spectrum, from a few years to 10 or more years.  Many Oligos are not diagnosed until they are Grade 3.  Grade 3s are typically when radiation followed by chemotherapy is recommended.

Genetic Mutations

Genetic mutations are essentially what lead our normal cells to become cancer.  The identification of these mutations plays a role in prognosis and, more importantly, treatment options.   (see Genetic Mutations link)

You should confirm (and insist) that your neuro oncologist will have this genetic analysis done.  It is common practice now at the leading brain cancer centers, but less so at other hospitals.  You absolutely need this information.  (A common standard is Foundation Medicine’s test.)

Prognosis

Oligodendroglioma is currently an incurable disease and the chances that it will recur and eventually progress are very high.  Some people have a recurrence in 2 years and some in 10.  A recurrence means the tumor is back or active again, but it doesn’t necessarily mean your Oligo has progressed to a higher grade.

Your prognosis and treatment plan can vary based on the grade and the mutations your tumor has.  It is true that Oligos (which have the 1p/19q co-deletions) grow more slowly and are somewhat more receptive to chemo and radiation…and that is a good thing. Grade 2 Oligos are often put on ‘watch and wait’ after surgery, though it is not uncommon to employ temodar post-surgery or if an apparent progression is noted.  Grade 3 are usually treated with surgery, followed by radiation and chemo—often a potent trio of agents known as PCV.

Life expectancy is a very difficult concept to even consider for all of us, but unfortunately our disease has one. Two things can be said about it:  it is relatively long as these things go.  And there are people who beat it by a lot.

Is it cancer?

Apparently, some neuro-oncologists tell their patients that their Grade 2 Oligo is not cancer.  In the grand scheme of things, it doesn’t matter what you call it so long as you understand what the diagnosis means and how the disease is likely to behave in the future. We checked with the head of the brain tumor division at the National Cancer Institute and he confirmed that Grade 2s and 3s are cancer.

(In our experience, neuro-oncologist are a truly amazing group of doctors that exhibit uncommon empathy and humanity.  At the same time, there can a tendency to carefully regulate how much of the ‘whole story’ they share with newly diagnosed patients and families. This is understandable, but not necessarily the best approach.)