Living with brain cancer is a different experience for every person, but the positive news is that you still have control over how you will live your life after your diagnosis. Each patient may pursue a different direction than others, but here are five strategies you might find helpful in your battle with brain tumor or cancer.
We curated this list from renowned studies and support groups in the brain tumor community, as well as individuals who provided their personal accounts of what it’s like to live with brain cancer.
Gather Your Thoughts and Take A Deep Breath
Exact risk factors for brain tumors still remain to be known. However, there is a small percentage of the disease that is linked to genetic mutations. Environmental hazards and exposure to certain viruses and toxins may also be a likely culprit. Some brain tumors are found when a patient suffers a seizure. Most of the time though, symptoms are less urgent like headaches, vision problems, and difficulty thinking.
Most brain tumors do not need immediate treatment. It is possible that you still have several days or longer to look for the right medical team. If a local hospital has started intervening with the condition, consider reaching out to a different provider that specializes in caring for brain tumors.
Remember to take as much time as necessary to make an informed decision before diving right into treatment. Look at every detail, from dosage to side effects. Brain tumors are unpredictable, so if you were able to detect cancer at an early stage, you will have more time to think about your next steps.
Tell The People In Your Life That You Have Cancer
Cancer is such a difficult challenge to overcome by yourself. Do not be afraid to ask the help of your family, friends, doctors, and nurse advocates in this journey. We all know that breaking this news to your loved ones is hard, but having a support group will make the load easier to bear moving forward.
Be prepared for how people are going to react – some of them may be helpful, while others may withdraw. You might be put into situations where you are uncomfortable, especially if you are answering questions you don’t want to delve into. What’s important is you keep your closest friends and family and keep them up to date of your diagnosis and feeling. Not only are they’re there to provide a comfortable environment for you, but they might also be of help in many other ways.
Be Assertive With Your Treatment Plan
Lay out your goals and priorities to your healthcare team. Your treatment plan should tackle all aspects of physical, mental, and spiritual well-being. As informed as your neuro-oncologist may be, she may not have heard about a new combination therapy or clinical trial. Do your own research and be your own advocate. In addition, take advantage of nearby university libraries and reputable medical information online.
Common treatments for brain tumors include radiation, surgery, chemotherapy, or a combination of everything. However, these are not your only choices. You might also want to explore integrative medicine, hospice care, and other emerging technologies.
Think About Joining A Clinical Trial
Clinical trials allow patients access to promising therapies. This is where new medications are tested for the efficacy and safety. Though there is no guarantee that a drug in trial will be effective, it’s worth taking a chance if you think standard care isn’t working out for you.
Be sure to discuss your eligibility with your neuro-oncologist about specific trials that target your tumor type. Doctors from major research hospitals are more likely to encourage you to join one and may easily find a trial that fits your condition. Ask your doctor why she believes this trial might be of benefit.
It’s important to note that once you start radiation and chemotherapy, you might be ineligible for a significant number of trials. That is why it’s crucial to evaluate your clinical trial options before starting chemo and radiation.
Take Ownership Of Your Tumor Tissue
Knowing your tumor pathology is a vital step in determining the best treatments for your condition. Your tissue hold answers to the type of tumor you have, what genetic abnormalities it contains, and what grade it is. This knowledge will help you personalize your care plan, such as what clinical trials you are eligible for and the kind of chemotherapy that has a higher chance of working out for you.
Keep an eye on the informed consent forms prior to surgery and biopsy – even better if you have a lawyer to look at them. Do not hesitate to bring up to your medical team anything that doesn’t sound right to you. There have been lawsuits concerning who owns tissue, and most of the time, the judge rules in favor of the hospital because the patient failed to negotiate the terms with the health care provider in advance.
As noble as donating your tissue to science sounds, your health should still be your first priority. Entrust your tissue to a trustworthy medical center, so you can have it tested when you need it in the future. Having more tissues will immensely improve the accuracy of tests.
Facing a brain tumor diagnosis is challenging, but there are steps you can take to manage the situation and aim for the best possible outcome. No single solution is appropriate for everyone, so explore your options and look into current research and first-hand experiences of fellow brain tumor patients. Surround yourself with positive stories of survivorship and successful treatment while keeping statistics in perspective. These will be your weapon in fighting this harsh battle.
New Hope Unlimited is here as a friend and teammate to guide you through this emotional and scientifically complicated process. We offer holistic, non-invasive therapies to help you become a survivor. Talk to our team at 480-473-9808 to learn more about our programs. You may also fill out our online form for your inquiries.