On Saturday, March 23rd, I had the opportunity to attend the “Meet the Experts” event hosted by the Pediatric Brain Tumor Foundation. This event is put together by the California Chapter at least once a year to give parents with a child diagnosed with a brain tumor the chance to hear brain tumor experts, which may include pediatric neurosurgeons, neuropsychologists, nurse care managers, and special education consultants to address the topic and offer valuable information to assist with navigating this journey. Amongst these presenters are also a panel of veteran parents that are available for an open parent discussion. Who better to want to ask questions to than a parent who has already walked this journey?
It was a very informative event with the first half of the meeting presented by Dr. Josh Neman, PhD. on understanding the role of the brain’s micro-environment in pediatric brain tumors. Dr. Neman is an Assistant Professor of Neurosurgery and member of the Norris Comprehensive Cancer Center at the Keck School of Medicine of USC. Dr. Neman received his doctoral degree at UCLA David Geffen School of Medicine in neurobiology. He then went on to complete his cancer biology fellowship at the City of Hope’s Beckman Research Institute. He has published multiple studies and his current research at USC include pediatric brain tumors, with emphasis on Medulloblastoma.
Dr. Neman gave a comprehensive overview of what is cancer, the biology of cancer, how cancer is studied in the lab and the current research on Medulloblastoma (the most common type of malignant pediatric brain tumor). Which happens to be the brain tumor that our son was diagnosed with, so I am grateful to have been able to hear him speak and gather such vital information that I now share with you all as my personal take away from the event.
In learning what cancer is, a normal stem cell at any point of the cell’s path can mutate and go bad turning it into a cancer stem cell. Carcinogensis, “the process by which normal cells are transformed into cancer cells”, can occur from inhereted mutations in the genes affecting DNA repair, cell growth and cell death, as well as environmental agents that damage DNA such as exposure to chemicals, radiation and viruses. Inherited mutations in the genes, we have no control over however, environmental factors and other modifiable causes we can prevent or actively work towards reducing their risks.
Cancer is treated utilizing various methods, depending on the type of cancer, its location and patient’s age, as well as other factors. The most common treatments for treatable brain tumors, because unfortunately not all are operable or treatable, are surgery, chemotherapy, radiation, stem cell transplant and/or if all else fails immunotherapy. Cancer treatment can fail because of resistant cancer cells that remain dormant and can survive even in the harshest of environments (i.e. despite not having sugar to feed off of, it will continue to multiply but at a slower rate). Because these resistant cells are programmed to survive, you end up with a recurrent tumor. Unfortunately cancer treatment does not always kills every cancer cell. What I learned from Dr. Neman is that tumor cells have the ability to trick the body’s immune function to making it think that they are “good guys” so the body does not kill them. They have the ability to mask themselves and sometimes illicit the immune system to help them grow.
When cancer cells seep into the blood vessels, they now have the ability to travel to other organs and metastasize. They likely tend to spread due to nutrients being present in which allow them to multiply and grow. It was interesting to learn that when tumor cells metastasis to another locations, for example a tumor that started with its original origin in the breast and is now spread to the brain, it is still those original tumor cells from the breast that have traveled to the brain. It is not that the other organ affected, in this example the brain, has developed cancer on its own. So this person would have breast cancer that has mets to the brain, not breast cancer and brain cancer. According to Dr. Neman, it is unsure at exactly what point in time the metastasis actually happens. Tumor cells have the risk of spreading during treatment because tumor cells will naturally want to leave a “hostile environment” during which they are being attacked with chemotherapy, which will then cause them to spread to another location in the body.
When biopsies are taken from a tumor, they are grown in a petri dish in order to be able to study them and formulate a proper diagnosis. In order to grow the cancer cells they are fed sugar (yes, you read that right! cancer cells thrive off of sugar!), proteins, oxygen and carbon dioxide. They are then placed in an incubator under a sterile environment and allowed to grow. It was quite interesting to see a video presentation of cancer cells under a microscope dividing at a much faster rate when being fed high fructose corn syrup. Another reminder of how adequate nutrition, with a diet low in sugar intake, is an integral part of being healthy and one of the most important aspects of nothing only surviving but thriving through cancer. Most importantly within our own personal journey with our son, it is one of the key components of keeping him in remission and reducing the risk of any possible dormant cancer cells from being fed and reactivated.
Of course in the midst of the presentation, as parents we were all eager to learn of other possible factors that contribute to causes for cancer. Although it is not surprising, it serves as a reminder for all, that when it comes to cancer only about 5% of the causes are related to actual genetic predisposition. Certain subsets of people are more prone to cancer. But for the other 95% it has been ascertained, that the cause of cancer in children is not fully known. Doctors are researching factors such as stress, viruses, lack of sleep, too much sugar intake, exposure to toxins and chemicals, radiation, lack of oxygen or even an environment with too much oxygen can cause an imbalance in relatively dormant cancer cells causing them to become more active. All it may take is a threat or imbalance to a cell’s environment to cause this kind of activation to occur.
In listening to Dr. Neman speak, especially with targeted focus on Medulloblastoma, it was interesting to learn that the neurotransmitter, gaba, has been found to cause these type of tumors to grow and spread within the brain. About 80% of brain cells use gaba in order to communicate and unfortunately from my gathering, these cancer brain cells have also learned to grab a hold of this neurotransmitter, break it up and use it for their own energy.
It is relieving to learn that when looking at statistics, pediatric brain tumors in which are able to be treated have an average 5 year survival rate of 75%. Of course, this percentage varies depending on the exact type of brain tumor, the age of the child and the type of treatments they had to succumb to, amongst other factors. Younger children have a harder time enduring treatment and tend to have more long term effects due to their developing brains. It is for this reason that usually radiation is avoided if possible, in children under the age of 5 years old. It is devastating however, to know that central nervous system (brain and spinal cord) tumors are still the leading cause of cancer related morbidity in children.
Brain tumors, in relation to other cancers, are harder to treat due to the blood-brain barrier that is present where the brain tries to protect itself. In addition to that, there are three layers to the brain which make treatment such as chemotherapy, difficult to reach certain areas of the brain. Dr. Neman mentioned with new research, scientists are finding that there are back doors to get to the brain, such as via our nares which allow for inhalation of drugs and creating a direct pathway to the brain. This bypasses the blood system, which makes for a faster and better route at targeting the brain specifically. Because of this research is currently looking at delivering chemotherapy intranasally, which would be a huge advancement in treatment with perhaps less systemic side effects that the body in general would have to endure.
Another newer advancement, which is still being researched, is immunotherapy, which uses the body’s own immune system and turns it on itself. One of these targeted immunotherapies is Car T-Cell Therapy, where blood is removed from the patient to obtain the T-cells (the fighter cells in our immune system) programmed to bind to cancer cells and then infused back into the patient to go kill them. “In 2017, two CAR T-cell therapies were approved by the Food and Drug Administration (FDA), one for the treatment of children with acute lymphoblastic leukemia (ALL) and the other for adults with advanced lymphomas.”-National Institute of Health.
Dr. Neman shared there is a resource website for families to navigate, for not just cancer but any type of disease, called www.ClinicalTrials.gov. This is a database of privately and publicly funded clinical studies conducted around the world, which are not FDA approved yet and still within the research phases. On this website you are able to search the condition, check the status of the study, the eligibility criteria, the results if the study has been completed and who is was funded by.
The second half of the presentation was conducted by one of the neuro-oncology nurse practitioners and social workers from Children’s Hospital of Los Angeles on navigating survivorship. An important take away that I gathered in which is important for parents and patients alike to know, is that plan for survivorship starts the day of diagnosis. There are several transitions a child with cancer will go through: diagnosis, treatment, treatment completion, expectant observation (this is the period between end of treatment and transition over to survivorship clinic in which a patient will be monitored with MRIs to ensure brain tumor has not returned and followed closely by other ancillary specialty areas such as endocrinology, dietician, audiologist, neuropsychologist and ophthalmology to name a few) and then finally transition over to survivorship clinic once the oncology team feels like the patient is in the clear and the risk of the tumor returning is minimal. This time frame varies for every patient and will usually occur around the time the oncologist has started to monitor the patient only once a year. Once a patient enters the survivorship clinic they meet with an integrative team consisting of a physician, nurse practitioner and social worker. A detailed and individualized care plan will be established and revised as needed at every meeting identifying potential future problems and monitoring plans.
During the presentation they spoke on factors influencing long-term side effects which include:
- age (the younger the patient, the higher the risk due to developing brain)
- hydrocephalus (if not resolved can require a permanent shunt)
- tumor location
- surgical resection
- chemotherapy agents
- radiation (very damaging long term)
- focal (directed at the site of the tumor)
- cranial-spinal (more damaging as it gives radiation to entire brain and spine)
- posterior fossa syndrome (mutism, speech problems which pose a higher risk of cognitive issues long term)
- difficulty walking (neuropathy, foot drop related to chemotherapy)
Treatment related long-term side effects:
- eyes (vision problems)
- ears (hearing loss secondary to platinum based chemotherapy agents. most of the loss occurs during treatment and then stabilizes after treatment, although there is still a risk of decline after and must protect hearing. Normal age related hearing loss may occur at earlier ages in this population of patients; hearing loss that may have normally started to occur at age 70 might begin as early as age 40-50 years old.
- teeth (cavities, missing adult teeth)
- internal organs
- musculoskeletal (curvature in spine)
- endocrine system (abnormal thyroid function, fertility problems, declined growth)
- physical appearance
- secondary malignancies (these are usually related to radiation)
- cognitive (memory problems: hard to acquire new information post radiation, processing speed of information delayed, delayed visual processing, impaired focus and attention span and difficulty executing functions)
It was rather frightening to learn that there is an annual incidence of 90-150 new brain tumor cases each year seen at Children’s Hospital of Los Angeles alone. Overall looking at nationwide statistics, there are about 15,000 cases of childhood cancer diagnosed each year. Yet looking at these numbers a lot of people still like to think that childhood cancer is rare. Well, let me tell you from personal experience, now being in the inner group of that cancer population is truly is not rare. This is why it is important that we donate to pediatric cancer research and take active interest in learning how to mitigate cancer risks, then making those modifiable changes in our lives. Our children are our future and we as parents, caregivers and a community as a whole are responsible for educating ourselves and doing our part within our capacity and resources we have to ensure they not only survive but thrive in the process.
Surviving cancer, is not just about staying alive. There are a lot of things that you actual “survive” both the child and the parents or family in general, which include:
- medical trauma (everything from the moment of diagnosis, treatment, side effects and late effects)
- vicarious trauma (the trauma endured from the parents or outsiders caring for child)
- grief and loss (even though a child survives cancer, they are still never truly the same person they were prior to diagnosis, so there is a grieving part that comes from missing who that person used to be and potentially who they could have become in the future)
- strain and interpersonally relationships (everyone copes with these situations differently and not everyone has the same ability to adapt to the situation)
- missing out (there is a sense of grief and sadness in everything the child misses out on as a result of treatment, side effects, etc)
- financial stress (the financial means to put someone through cancer treatment, even with insurance, is very high and it is costly long term with all the lifetime care and follow-up that is still needed even after end of treatment)
A lot of the times we focus on the things that we can see, as those are things that we are constantly reminded of and/or have to handle at the moment. Often we forget about what also occurs on the inside, with the emotional and psychological late effects that are seen in survivors. The presenters touched on aspects that while you are going through the motions of cancer treatment, you may not even had time to think about. The aftermath of cancer, can leave children (even those almost transitioning into adulthood) with anxiety, scanxiety (the fear that comes with every MRI follow-up of possible recurrence of the tumor), depression, PTSD (post traumatic stress disorder), survivors guilt (they may feel guilty that they survived cancer versus their fellow cancer warrior friends that they may have met), grief (loss of peers, loss of not having a “normal life”), low self esteem, relationship challenges and so much more.
An important part of survivorship that they touched on is learning how to cope: learning how to acknowledge the diagnosis at hand, accepting the situation, being a part of support groups (no one else will understand how you feel more than someone who has already walked in your journey, trust me I know that first hand and highly recommend you reach out to other cancer parents), making sure to engage in self care with adequate rest, sleep, nutrition, exercise and taking part in things that help you cope or promote relaxation (one thing I have learned in the process that will hold true to any parent or caregiver on this journey is that you cannot take care of someone else, unless you take care of yourself first. You will wear yourself thin; know when to take breaks and ask for help). They noted that it is very important to keep notes, ask questions, read journals and blogs, attend seminars/workshops and I cannot tell you how much this is true and will help you along the journey. Staying organized will also be as important.
Out of all bad things, some good things do come. One of the topics of presentation was on post traumatic growth: “it is a positive change experienced as a result of the struggle with a major life crisis or a traumatic event.” Once you hear the words “your child has cancer” it will change your life forever, obviously in a devastating way but there is also positive things that will come as a result of everything your child and you as parents have endured. You will meet so many people along the way that will be a huge support system to you, your bond and relationship with others will usually strengthen as a result of experiencing first hand how fragile life is, you will gain a greater appreciate for life in general as you more than anyone else know how life can change in an instance, it will deepen or possibly change your spiritual belief, you will learn to face adversity and learn to look for the silver linings in situations. Not only will your child be a survivor, but you as well.
There will be many factors that will determine survivorship but some of the key things they emphasized are making sure to stay in survivorship care (this team will ensure your child has the best outcome), maintain regular annual appointment with primary care physician, make sure to maintain insurance coverage to ensure there is no lapse in care, as the child survivor it is encouraged that they obtain the highest level of education possible as this will open doors for a better future and help their cognitive development, find fulling employment, exercise, eat right (decreased sugar intake), get enough rest and sleep, learn how to cope and manage stress and engage in social support (no one fights alone and you truly cannot get through life alone!). This advice notated here can be applied towards any individual, not just a child or adult with cancer. There are so many resources available out there for children with cancer, please take the time to research them or ask others, especially the social worker who is a vital resource tool.
Lastly as part of the presentation was the panel of parents and a brain tumor cancer survivor who spoke on their journeys through cancer and provided some insight to the journey after end of treatment, as well as looking back on what their treatment was like and what advice they give others now. One of the comments made by one of that fathers, resonates so much with me in that he said you have to truly learn to live in the moment. He mentioned that it wasn’t until much later in life after his son’s cancer treatment was over (his son is a 26 year brain tumor surviver) that he started to grieve the loss of the son he had prior to diagnosis and mourn the person that his son could have become, to later realize that the son he has here today is just as much of a great person despite all the challenges he has had to face. The brain tumor cancer survivor when asked what she would state is something her parents have done that has annoyed her or she wishes they would do and she said to try to solve her problems. As parents, especially those now with children who have been diagnosed with cancer, it is in our innate nature to want to help our children as much as we can but this survivor made a good point that she wants to be able to just vent about life and figure it out on her own now that she is an adult. Again, this is something that can be applied to any parent-child relationship.
To conclude, everything noted within this blog is my own personal take away from the information gathered at the presentations and is in no way meant to serve as medical advice. I do highly encourage you to attend one of the “Meet the Experts” meetings in the future, if you are a parent/caregiver or even a brain tumor cancer patient/survivor. There was a lot of vital information presented and the ability to be able to ask questions from such experts, including other veteran parents and patients is invaluable. For more information on future events and resources, please visit their website at: http://www.curethekids.org