Tag Archive for: brain tumor

July 2022 Digital Health Roundup

This July, healthcare providers partner up with technology to give cancer patients a better outcome. Gamma Knife technology, a knife-free approach, helps to treat brain and neck cancers. Radiologists use artificial intelligence (AI) to help them catch more cancers on mammograms, leading to increased survivability. The United Kingdom is using technology, in the form of drones, to deliver chemotherapy to cancer patients in isolated areas.

Gamma Knife Technology Treats Brain Tumors Without Surgery

Despite the name, there is no cutting or incisions involved in the Gamma Knife method; instead, radiation and computer-guided planning are used to treat abnormalities in the brain reports TheBlade.com. This technique treats metastatic cancer, malignancies, benign tumors, lesions, and malformations in the head and neck area. The use of gamma rays to the affected area is precise and helps to keep the surrounding tissue healthy. The Gamma Knife is a way to get surgery without using a knife. There is no pain, no anesthesia, the only requirement is that the patient must lay still. This technique is a good choice for people who are unable to undergo surgery, underwent prior brain surgery, or have tumors located in hard-to-reach places. Cancer patients that go through this procedure, have follow-up MRIs to check the status of the area treated. Find more information here.

Doctors Using AI Catch Breast Cancer More Often Than Either Does Alone

Radiologists assisted by an AI screen for breast cancer more successfully than they do when they work alone, according to new research. That same AI produces more accurate results in the hands of radiologists than it does when operating solo reports MITtechnologyreview.com. This artificial intelligence (AI) is called Vara and has been fed data from over 360,000 mammograms with the notes and assessments from the radiologists. It is being used in Germany and Mexico. This AI saves lives by analyzing mammograms and categorizes them as normal or abnormal, the not normal ones are flagged for the radiologist to review. There is a shortage of specialists, and this can help the radiologists free up more time to spend with patients. Radiologists alone can miss catching some of the cancer on the mammograms due to working long hours and being tired. Radiologists review everything the AI interprets and together cancer patients are getting better diagnosis and treatment. Find more information here.

UK Tries Cancer Meds by Drone

The UK’s National Health Service (NHS) has launched the world’s first trial to deliver chemotherapy via drone – a move that could make receiving cancer treatment cheaper, more convenient and less taxing on patients and the environment reports Freethink.com. Some patients must travel several hours using different modes of transportation to get their chemotherapy. The drone can deliver the medication in a matter of minutes to a hospital or doctor office that is closer to the patient. This delivery method cuts transportation costs to the patient and lowers carbon emissions, impacting the environment. The UK is creating drone corridors to hospitals. Recently, drones have been used to deliver medical supplies in war zones, coronavirus tests to labs, and delivered transplant organs. Find more information here.

How to Save Your Life in a Complex Health Care System

Health care systems are complex and overburdened. This is not unique to certain developed or developing countries – it’s a global challenge. Being able to provide optimal health care at a cost-effective price, without doing harm, is a daunting task for any country, government or organization.

This is not only because of the complexity of health care systems and the human bodies they interact with, but because we are dealing with human lives.

I came face-to-face with the challenge of complex health care systems when I was diagnosed with a non-malignant brain tumor.

I was no longer a ‘routine patient’. I had multiple specialists, multiple appointments and multiple medications. Life and health care became far more complex. Feelings of uncertainty, powerlessness and being afraid were very real.

As a manager at work who dealt with multiple projects, timelines and teams, my immediate response was to look at my health care as a manager. I knew that teams became effective with good management – surely the same could be true for my health care?

I came up with a simple approach to help me navigate the complex waters of the health care system. I called it my T.E.A.M Approach (Track, Educate, Ask, Manage). My family, support group, and doctors were a critical part of this T.E.A.M. Having an ‘approach’ to help me manage my diagnosis, made me feel less powerless, afraid and uncertain.

I never realized the true importance of being an activated patient and having a T.E.A.M Approach until it saved my life – when I was misdiagnosed.

It dawned on me how simple actions by patients and care partners might save a life. I wanted to share this message so it might help other patients, care partners and health care professionals – connect, communicate and collaborate – in our complex health care systems. Over the past decade, there has definitely been a shift from passive to activated patients as patients and health care professionals recognize the benefits. In general, activated patients have better clinical outcomes, better patient experiences, tend to seek preventative care sooner and have lower costs.

This inspired me to speak at TEDx on How to Save your Life in a Complex Health Care System and write a book: ACTIVATE – How to Save your Life in a Complex Health Care System.

My book discusses the challenges faced within health care systems and how patients can be more proactive participants in their health care management. It’s a quick reference guide for patients, care partners and health care professionals looking for guidance and solutions on how to put one’s health in one’s own hands and collaborate with health care teams.

If you are inspired to learn more and help spread this important message, ACTIVATE will be available for FREE on Amazon for 5 days only from 26 – 30 April 2018. Click here.

Put your health in your own hands – you might save a life – yours or someone you love.


Read more about Claire and her story here.

Introducing Claire Snyman: An Empowered Patient

“Change is the only constant” rings true in my life.

In 2010, I was diagnosed with a rare non-malignant brain tumor after the onset of vertigo and migraines. My son was only four at the time. During my patient journey, I had differing opinions and changes in treatment from the standard of care and realized a few important things. How critical it was to partner with my medical team, how important it was to be active in my health care and be my own advocate and how important it was to keep asking and get a second (or third) opinion if needed.

I started keeping track of all my medical records, educated myself on my condition so I could have informed discussions with my medical team, made a list of questions before each appointment and started to manage my medications and appointments – it was like a full time job!

In 2012, I became acutely ill with vertigo and migraines. I knew something was wrong even after the specialists and the ER doctor sent me home. Because I was active in my health care and educated about my condition, I kept asking questions. It was finally confirmed that my brain tumor had doubled in size. My brain was swollen and I needed brain surgery to survive. I am forever grateful that my husband and I kept on asking questions – it saved my life.

This experience highlighted the importance to me of being your own advocate, putting your health in your own hands and not being a passive participant in your health care. It’s also important to connect, communicate and collaborate with your medical team – in the interests of a better outcome.

After my recovery, I looked for various ways to use my patient journey constructively.

– I co-authored a collaborative study between patients and neurosurgeons at Johns Hopkins University to help increase collaboration between patients and health care teams and get more information in the public domain.

–  I am passionate about inspiring people to put their health in their own hands, having personally seen the impact it can make to a person’s life.  I developed The TEAM Approach for Empowering patients  (Track, Educate, Ask, Manage) – a simple and easy-to-remember tool to help individual’s transition to being an active participant in their health care.

I recently spoke at TEDxStanleyPark 2018 on “Your health is in your hands” and how it might save your life – hoping this message will activate others to become proactive in their health care.

I’m a firm believer than when something in life is no longer an option, when a door closes, another door opens. It may be different to what you expected, but if you are open to looking for it – you will find it. That is definitely true for this chapter in my life!

Patient Profile: Cali Trepkowski

In March 2015, 8 year old Cali Trepkowski vomited on the way to school. She stayed home from school that day, but she seemed to be fine as the day progressed. A few weeks later she vomited again. This happened three more times so her mom Carrie called the pediatrician who determined it was allergies and put Cali on an allergy medicine. But the vomiting continued. The pediatrician said Cali might be lactose intolerant and advised Carrie to take all dairy out of Cali’s diet. But still Cali vomited. In June the pediatrician said to remove all the sugar from Cali’s diet, but the vomiting continued. By July Cali was vomiting every three days. A visit to the emergency room resulted in a gastric diagnosis and a follow up with a gastroenterologist. The gastroenterologist scheduled Cali for an endoscopy on August 14th, but by August 1st she was sleeping all the time and still vomiting so they went to the ER again and Carrie, who was no longer willing to wait to get results, insisted the endoscopy be performed immediately. The endoscopy didn’t provide answers so the ER doctor scheduled a brain MRI for August 14, the original date for the endoscopy. The morning of the MRI Cali woke up and stumbled into a wall. “Her gait was off,” says Carrie who had become increasingly worried about her daughter. The scan revealed that Cali had a 4.5 by 5 centimeter tumor in the back of her brain right up against the brain stem. Cali had cancer — Medulloblastoma, the most common form of malignant brain tumor in children.

Cali was immediately transported to a hospital in Miami, Florida where her surgeon put a drain in her brain to reduce the swelling. It was the swelling that was causing Cali to vomit. On August 17th Cali’s surgeon was able to remove the entire tumor. It was very literally not a day too soon. The surgeon told Carrie that miracles do happen and if they had waited one more day they would very likely have lost Cali.

Four weeks after surgery Cali underwent proton radiation — which Carrie learned is a type of radiation that causes less tissue damage. She says that with traditional radiation all of Cali’s major organs would have been vulnerable but with proton radiation only the top of her kidneys were affected. Then Cali had nine rounds of chemotherapy over 11 months and more than 20 transfusions. In addition, she began speech, occupational, and physical therapies and therapy with the Special Equestrians that helped Cali recover her strength and helped with her balance.

“She truly is a miracle,” says Carrie of her daughter who has some lasting side effects such as slow processing speed, and abstract learning, attention, and balance issues, but overall has had a remarkable recovery. “In the cancer world we’re the lucky ones,” says Carrie who is all too aware of how easily it could have gone the other way for them. “Once it becomes part of your world you see it everywhere. You have to give hope to others going through it.” she says. “I am very adamant about sharing her story and helping others.” Carrie stresses how important it is for parents and patients to press for answers from their doctors. “I knew something wasn’t right,” she says. “I don’t care what a doctor tells you. demand the testing. Don’t wait. Just because they are doctors doesn’t mean they are all knowing.” In Cali’s case so many of her symptoms were overlooked because the doctors she was seeing were not familiar with her type of cancer and because it doesn’t show up in normal blood work. Carrie now knows that when a child throws up in the morning, if it’s not a flu or other virus, it’s a sign of a brain tumor and she wants other parents to know that too.

Cali is 10 now. She’ll be 11 in February. She has an MRI every three months and while she currently has no evidence of disease, the highest chance of relapse is two years post treatment. After five years with no relapse Cali will be “cured” and will have a brain scan once a year for the rest of her life.

Going forward, Carrie says Cali will see an endocrinologist to address the hormonal side effects that accompany treatment. Carrie, who is very proactive in her daughter’s care, suspects a growth issue. “She hasn’t had much growth in two years,” she says. “Children will stop growing when there’s a brain tumor.” Carrie is concerned that without supplemental growth hormone Cali won’t reach a height of five feet. “Your whole world becomes taking care of your child and finding the best treatment,” she says. “I just want her to feel normal.”

As for the rest of the family, things are starting to become what Carrie calls a new normal. Carrie is extremely dedicated to supporting other families in the cancer community, and raising money for cancer research and the Make a Wish Foundation. She and her husband are both teachers and have three other children who Carrie says “didn’t have a mom” while Cali was undergoing treatment and Carrie was focused on caring for her. “I’m finally starting to be able to enjoy things again and I have these other kids here who need their mom,” says Carrie.“We do things differently now. We are building memories. Making as many memories as we can. We do as much as we can and enjoy it. We enjoy life.”