In my last post I spoke more generally about the conference and one overall theme I found in specific to UCLA’s outlook on cancer treatment.
Today I thought I’d do just slightly more specific outlining (although still a quick overview) of Day 2’s sessions for any blog readers I might have who are brain tumor survivors, newly diagnosed, care givers, friends of those effected, or just curious and concerned.
1. Neuropsychology and Brain Tumors, Dr. Patricia Walshaw, Ph. D. – Dr. Walshaw gave a very basic overview of the brain and how it works, pointing out where the language areas, Broca’s and Wernicke’s areas, can be found.
She described the role of the neuropsychologist. The first is to do neurophysical evaluations dependent on which area of the brain is the area that is being questioned – IQ test, language, memory, motor, vision, attention. These tests will tell doctors which areas are effected, if there is hemisphrical lateralization, predictions for post-op, and how rehabilitation might be used.
The second role of the neurophsychologyist is to do the WADA procedure which tests for lateralization of memory as well as the assessment for post op deficits. There is an injection of a short acting drug to anesthetize one side of the brain for less than 10 minutes. Memory is then tested in the other half, and if the patient is unable to speak, the anesthetized side contains the language centers.
Next is the Functional MRI test. This is used mostly to locate actual language and motor areas and see how close they are to the tumor. The fMRI can provide a “map” of the brain function to help the surgeon minimize post-op deficits.
Finally, the Neuropsychologist helps during an awake crainiotomy with intraoperative mapping. The neuropsychologist will directly stimulate areas of the brain briefly while testing an awake patient with reading, naming, spelling, comprehension, etc. to map the brain and help guide the surgeon to avoid important areas during the surgery.
Most of this talk was very basic and very technical. But, one thing that really stood out to me was the emotional effect that she mentioned were found with those with Brain Tumors. “Studies show that around 50% of patients with brain tumors experience clinically significant levels of stress following diagnosis. This is a higher percentage than in other types of cancer. 38% of patients with brain tumors suffer from a psychiatric disorder within 3 months of diagnosis. Interestingly, 47% of partners also suffer from a psychiatric disorder during this time.” I found it particularly intriguing, especially the part where partners were effected almost 10% more than the brain tumor suffers themselves. As not only a brain tumor, and brain cancer, patient but also as someone who lost their mother to ovarian cancer, and having a bit of experience on both ends of the sword, I’d be curious to know what contributes to that statistic.
2. Understanding Language Impairments, Dr. Susan Brookheimer Ph. D. – While this wasn’t the next talk I went to, it is similar in nature, so I figured I’d summarize it next.
First Dr. Brookheimer talked specifically about Broca’s area, which is found in the left frontal lobe. When this area is affected by a tumor there are speech expression problems yet good comprehension, simplified syntax, word finding problems, reduced generation, struggles with expression, and writing and spelling problems.
Next is Wernicke’s area, in the left temporal lobe. When this area is affected there may be more difficulty with understanding language although the patient can usually speak. However there may be errors in the words spoken, creating “word salad”, sounds may be placed out of order, and the patient may be unaware of this.
Found in the left basal temporal lobe is the basal temporal language area deficits (how appropriate) including difficulty with naming objects and people, memory problems, however normal understanding. Parietal lobe deficits may include difficulty reading, trouble sounding out words, difficulty spelling, math impairment, trouble doing hand actions.
Dr. Brookheimer discussed the WADA, fMRI, and intraoperative corticography tests as well.
Some myths she put to rest-
Myth: If langage areas are removed, other brain areas can “relearn to speak”. Truth: Language cannot be “relearned”, most cases language deficits may improve with time, other brain areas can help compensate, especially with speech therapy, and in YOUNG children language can sometimes reorganize to the other hemisphere.
Myth: Left handers have language in their right brains. Truth: About 1/3 of left handers have language in the right brain, up the 1/3 have a mixed pattern, about 1/1000 right handers have language in the right brain.
Myth: The Right brain is passive; has no role in language. Truth: the right hemisphere also contributes to language through tone of voice, keeping track of context, emotional processing, some limited comprehension.
Myth: If a tumor is located near a language area, it is inoperable Truth: Many tumors can be safely removed that are very near language areas with proper mapping.
3. Integrative Psychosocial Support into Treatment “The Patient Active Approach”, Malcom Schultz, JD, MFT – This next session was one of my favorites and has the potential to have the most lasting effect on me from the entire weekend.
Composed of a panel of 4 brain tumor survivors, 2 of whom were young adults close to my age, they represented a larger group and community called the Cancer Support Community (although due to some in-group banter I got the impression that they may have recently changed their name). Each of the panelists shared their story and experience with their tumor and then, very briefly, the sessions they go to at the Center.
As a group, they seemed to have a rather positive outlook, and shared a viewpoint that I have been having, and put it in a way better than I can – that there is a secondary benefit of cancer and that is that you end up looking at what is important to you. You start to find and focus on your gifts.
Also, they mention this counterintuitive feeling that non-patients might not understand when you have been in chemo/radiation treatment and then stop. And I think this is something TheLizArmy mentions in her blog. While you were in treatment, you had an active way to fight the tumor and felt like you were taking control. And when you stop, not only are you loosing the nurses and doctors and caregivers and support system you saw on a regular basis, but you’re loosing a sense of fighting. You’re left feeling like, what do I do? And while I consider myself lucky enough to not even need to START chemo or radiation at this point, and just wait & watch, just coming off of my surgery, this was a feeling I’ve had. Now what? How do I fight?
And I think the way I’ve found to do my fighting is to connect with others and to work on bringing awareness to the Brain Tumor/Cancer cause and to Young Adult Cancer. So this was a really great session that connected me with people and to a group that I’m going to get to know more about.
4. Mindful Meditation, Lisa Kring, LCSW – With my work getting my masters in Dance/Movement Therapy I’ve dabbled a bit in meditation and its been something I’ve really enjoyed, so when I saw meditation on the session list I was very excited.
Lisa discussed how many times a cancer diagnosis can overwhelm the mind of a patient. And this can disrupt the connection of the mind with the body. But it is this connection of the mind with the body that is the KEY to wellbeing. It has been shown in clinical research that meditation, for as little as 3 minutes each day, can increase cancer wellness.
She mentioned that its been found that for 50% of the time in our lives we spend our time “mind wandering”, so this is time that we are alive, but not really living, and therefore our level of happiness and wellbeing goes down. But it has been shown that when the mind and body is connected, and the mind is present , even if the experience it is present for is unpleasant, the overall level of happiness and wellbeing of the person goes up.
In addition, it has been shown that the brain changes physically in 8 weeks when taking a meditation class. It has also been seen that the immune system is enhanced and restored.
During the session we did a 10 minute meditation experience. While I have done meditation in the past and really enjoy it (and this has reminded me to make it a larger part of my every day life) I had quite a bizarre experience. I’m not sure if it was seizure related or anxiety related or what, I’m speaking with my doctors about it, but it was very interesting and imagery related and *might* get its very own art infused blog post. But either way, paying attention to it did keep me in the present and focused on my body, so maybe I was being a model meditator.
For more information on Lisa and meditation you can visit:
5. Oligodendrogliomas & Low Grade Tumors, Dr. Albert Lai, MD, Ph. D. – Finally we have my last session, the one about low grade tumors. Personally, I got my pathology report back, and it was inconclusive.
They’re unsure which type of cancer I have, but they do know its low grade, so I’m at least happy with that. Dr. Lai was a great speaker and repeated what my doctor, Dr. Cloughesy, had told me when we were discussing my personal treatment, but it was nice to hear all of this when I was in a more relaxed setting, not freaking out about what I was going to do.
Recently there has been the discovery of the 1p19Q oligodendroglioma marker, which is found by the FISH test. It tells whether the 1st and 19th chromosomes are missing or not.
In addition, it has been found that IDH1 mutations initiate low grade gliomas. The discovery of this has become exciting in that it might be possible that this is the Achilles heel of low grade gliomas. If, as some point, science is able to figure out how to target IDH1, we might be able to slow, stop or prevent low grade gliomas which would be a game changer. BUT we’re not there yet. We’re hoping for some sort of IDH1 therapy soon though.
According to Dr. Lai, one particular thing about low grade gliomas is that they often mean there is more input in terms of treatment from the patient. There is no step wise standard of care. In the best case scenario, the surgeon can remove the whole tumor. Often, Dr. Lai will look at post operative scans to see if an additional more extensive surgery might be helpful. Then, his preference is to wait and watch.
But if the residual cancer is particularly aggressive, or if the patient has a preference for treatment, then there are two options – radiation, or chemotherapy.
Radiation – Takes around 4 or 5 weeks of continuous treatment, then you watch. Its potentially more effective than chemo, but may have more long term side effects, such as white matter changes, cognitive slowing, and memory problems. It is best used with the target tumor area is small.
Chemo – A major positive is that its NOT radiation. But with low grade tumors treatment time is often at least a year, if not two. Side effects of exhaustion, constipation, appetite loss, nausea, can be very difficult to deal with for that period of time. Better to use with larger tumor areas.
Once again, Dr. Lai emphasized that research is bringing us closer to closing the circle between having the biomarkers, the biomarkers telling us what the do, and us being able to respond to that.
He also mentioned that low grade tumors are almost ALWAYS found in young adults in their 20s and 30s.
Soooooooo……….. that was a REALLLLLLLLLYYYYYY long blog post. Get up. Move around. Do a dance!!!
I anticipate my next post to be a little less school like and little more exciting, but I think all that information is important, interesting, and not always easily searchable on the world wide web, so hopefully its found some of you that are looking for it. And if you have a specific question, ask away, I didn’t include EVERYTHING, although I’m NOT a doctor, so I don’t know everything, just what I took notes on.
Happy almost Tuesday!