6. Create a Treatment Plan with Your Doctor

It is important to understand your treatment options today and in the future based on your tumor imaging, surgery, and pathology. The plan should include care that promotes your physical, mental, and spiritual well-being.

Lay out your goals and priorities to your cancer care team. Tell them what is important to you and how you want to handle this. Work with your doctors to come up with a course of action that works for you.

Be your own best advocate. As smart as your neuro-oncologist may be, she may not have had time to read about a new clinical trial or combination therapy. She may have too much pride to refer you to someone else’s care when something is outside their range of expertise. Do your own research, taking advantage of nearby university libraries and medical information available online.

Keep a treatment calendar. Record on a calendar when you start and stop various treatments, how you feel, and what your test results show. This will help you see what improvements or lapses in your health might be caused by.

You will most likely be recommended a course that includes multiple kinds of treatments, most commonly a combination of surgery, radiation, and chemotherapy. The first step in treating a glioblastoma is usually surgery to make a diagnosis and relieve pressure inside the skull.[1] Following surgery, the standard treatment usually involves radiation therapy, and temodar, a type of chemotherapy. However, this is not the only choice you have. The following is a more comprehensive look at your medical treatment options.

Surgery

Surgery for brain cancer attempts to remove amost or all of the tumor. It is extremely common in brain cancer patients, except for cases where the tumor is in an inoperable part of the brain. If surgery is recommended, talk to your neuro-surgeon about how much tumor she believes she will be able to extract. Aggressive surgeries are riskier, but may benefit in a longer survival period.

Because these tumor cells have octopus-like tentacles, there are no clear edges to glioblastomas. This feature makes them very difficult to remove completely. If the tumor is located near important structures such as the language center or motor area, the ability to remove most of the tumor may be further limited.[2] Keep in mind, even the best surgeons in the business have a really hard time deciphering brain tissue from tumor tissue since it looks nearly identical.  Awake surgery is a technique that has become more common, especially when dealing with sensitive areas of the brain. The cooperation of the patient can help the surgeon map the brain to best preserve healthy tissue. You will likely be sedated during the initial part of the surgery and then woken back up. You won’t feel pain during the surgery, because you don’t have nerve endings in the brain and because you will be on pain medication.[3]

Before surgery, discuss your tissue with your neuro-surgeon. You will want pathology reports on the tissue to learn more about the tumor, and to save any remaining tissue not need for pathology in case you need it in the future.

Before surgery, you will have another MRI and/or other imaging scans to give your surgeon the best idea of the geography of the tumor. A part of your hair is shaved and you will receive an anesthetic.

Always ask your doctor about the immediate and long-term side effects of your surgery. Surgery inherently comes with risk of infection and other minor risks associated with undergoing general anesthesia. Additionally, the removal of a brain tumor runs the risk of removing healthy brain tissue. Many brain surgery patients take time to re-gain their cognitive and motor functions, such as memory, talking, walking, and balance. Some patients return to normal function quickly, while some never regain some functions—this all depends on the nature of the surgery and the patient, and are important things to discuss with your neurosurgeon.

Chemotherapy

Chemotherapy agents deter cell division, thereby limiting the ability of cancer cells to multiply and spread. The disadvantage of these drugs is that they also interfere with the division of normal cells, which can lead to unwanted toxicities.[4] They may be given in an outpatient part of the hospital, at the doctor's office, or at home. Rarely, you may need to stay in the hospital during chemo treatment.[5]

Chemotherapy for brain tumor patients is most commonly administered intravenously, but can occasionally come in an oral form. Intravenous chemo can be administered through an IV line, or through a surgically implanted port. Intravenous chemo can be a long and boring process. Bring a good book or movie with you to the appointments.

Temozolomide/temodar is currently the standard of care for glioblastomas, and is commonly given after surgery in conjunction with radiation therapy. It works by breaking strands of DNA inside tumor cells. When DNA strands are broken, the cells are not able to reproduce as well, slowing tumor growth.[6] This is one of the few chemotherapy agents specifically approved for brain tumors, in part because of its unique ability to traverse the blood-brain barrier. It is taken in pill form.

Gliadel wafers/carmustine implants are chemotherapy wafers implanted directly into the resected cavity after a tumor is surgically removed from the brain. Gliadel wafers contain an alkylating agent, carmustin or BCNU, that is released gradually after implantation to control and eliminate the growth of any remaining tumor cells within the tumor cavity. This localized therapy may be advantageous because it bypasses the blood brain barrier and there are none of the systemic toxicities associated with BCNU administered through an IV.[7]

BCNU/Carmustine and CCNU/Lomustine are the oldest chemo methods and the first approved for brain tumors. They are very similar, but BCNU is given intravenously and CCNU is usually given orally. A major side effect can be pulmonary fibrosis.[8]

Avastin/Bevacizumab shrinks tumors by stopping the formation of new blood vessels that feed tumors and supply them with oxygen.[9] It is most commonly used for recurrent glioblastoma.

Tamoxifen is approved to prevent recurrence of breast cancer but is used in much higher doses for the treatment of brain tumors. Only a small percentage of brain tumor patients respond to this agent, but when they do, it can sometimes work miracles. This oral drug has relatively minor side effects, such as a small increased chance of blood clots, but it does put women into menopause immediately because it is a type of antiestrogen. Some doctors add tamoxifen to other treatments so no opportunity is lost. Others use tamoxifen as a last resort.[10]

While chemo is intended to target cancer cells, it also impacts healthy cells. The most common immediate side effects are fatigue, pain in muscles, stomach and head, digestive problems such as appetite loss, nausea, diarrhea, constipation and vomiting, weakness, thinking and memory problems (“chemo brain”), sexual function and fertility problems, and hair loss. Chemo also has long-term effects due to the damage it does to the heart, lung, liver, kidneys, and reproductive system. It also affects bone marrow activity, decreasing formation of red and white blood cells, resulting in anemia, blood clotting, and increased risk of infection.[11] Consider freezing eggs and sperm before chemo if you still have child-bearing years ahead of you.

“After learning about my tumor, I was most concerned about being able to have a child. I was told that chemo could affect my fertility, and I was scared that I wouldn’t be able to conceive. I reached out to my clinical social worker who put me in contact with fertility preservation specialists. I had such a narrow window between surgery and chemotherapy that if I hadn’t received this information right away, I would have missed the chance to preserve my eggs. My social worker turned my fear into confidence with knowledge that empowered me to make quick decisions.” –Monika Allen, brain tumor fighter

Radiation

In this form of treatment, the area around the original tumor is subjected to an external beam of protons, which kills remaining tumor cells. Following tumor resection, most patients undergo six weeks of external beam radiation five times per week. Each session only takes a few minutes, and each appointment is usually less than an hour.[12]

Radiation therapy affects mostly replicating cells and therefore causes more damage to tumor cells than to normal brain cells (most cells in the brain are not actively dividing).[13] Because radiation is a cumulative treatment, side effects will get worse throughout treatment. People often feel no side effects after most appointments. Fatigue is common, as well as headaches caused by swelling, and nausea. Radiation can also cause hair loss in the affected area.[14]

  • External radiation therapy is the most normal or standard form of radiation therapy.
  • Intensity modulated radiation therapy (IMRT) uses computers to more closely target the brain tumor and lessen the damage to healthy tissue.[15]
  • Internal radiation therapy/Brachytherapy is a form of radiation that embeds radioactive material into the tumor bed.[16]
  • Stereotactic radiosurgery/cyberknife is a form of radiation that is extremely strong, but is not actually a surgery or a knife. It uses gamma rays rather than x-rays.[17]
  • Proton radiation can better target a specific area, making it a good option for tumors in sensitive areas of the brain and for children. It uses hydrogen proton particles, not x-rays or gamma rays.[18]

Targeted Therapies are agents that inhibit specific molecular targets involved in signaling pathways (cascades of biochemical events that regulate cellular development and behavior) that have been identified as abnormal and shown to play a key role in the development and/or survival of tumor cells.[19]

A tumor treatment field is an electric field applied to the head of the patient. These fields stop the growth of tumor cells by interfering with the cell division process. The geometrical shape and scattering of the electrical charges within the dividing tumor cells allows TTF electrical fields to physically break up the tumor cell membrane.[20]

Immunotherapies are therapeutic strategies that stimulate a patient’s immune response to attack and destroy tumor cells. In the context of tumor cells, the immune system can naturally identify and eliminate some of these cells based on antigen expression; however, tumors are sophisticated and can change the expression of some of their surface antigens to resemble non-foreign cells.[21] There are both personalized vaccines and stock vaccines. For the most part, these therapies are in clinical trials.[22]

Gene Therapy: The insertion of a gene into the cells (usually using a virus) to replace a defective gene or to install a new gene that causes the cell to produce a protein that fights the tumor.[23] Toca 511 is a gene therapy that is in clinical trials, which injects a virus into brain tumor cells and changes the genetics to become toxic to cancer cells.[24]

Drugs to Treat Your Symptoms

Your doctor will likely discuss drugs that are meant to fight your symptoms in addition to the treatments to fight your cancer. These include medications for pain, seizures, swelling, and depression, as well as a myriad of other possibilities.

Because many people with brain tumors experience seizures, antiepileptic drugs are often prescribed to limit the electrical signals in the brain.[25] The new standard of treatment waits to prescribe them until a patient has had a seizure, because using them preventively can often do more harm than good.

Steroids are often prescribed because of the swelling and pressure in your brain. Some of the side effects are changes in appetite, weight gain, mood changes, muscle weakness, increased blood sugar, acne, increased risk of infection, and gastrointestinal bleeding.[26] It is especially important to not abruptly stop taking steroids. If you do not taper off them as prescribed by your doctor, your body will not be able to start naturally producing the hormones again immediately, which can result in death.[27]

Side Effects

Understand side effects and long-term health effects of your disease and treatment. Ask your doctor about both immediate and long-term side effects.

Brain tumors and treatments can affect a patient’s personality. Sometimes a patient can become more sentimental, or sometimes more standoffish. Be aware that these changes can occur and make sure close friends and family are aware as well. Oftentimes this doesn’t happen; it all depends on which part of the brain is affected.

Depression and anxiety are common in cancer patients. About ¼ of patients experience depression during treatment, while anxiety is more common after recovery or while waiting for test results. Ask your medical team about support for these problems. You may experience normal sadness during your treatment, but if you become depressed you may need to see a psychologist or get medications. 

Seizures happen in 25-40% of brain tumor patients. For many this is the first sign that they have a brain tumor. These can be due to the brain tumor, surgery from the brain tumor, or could also be due to unrelated causes like head injuries or medication withdrawals. Seizures are abnormal electrical activities in the brain. “For some, jerky shaking and trembling may be the first thing you see. Other times, a seizure may be as simple as someone appearing to be ‘far away.’”[28] When someone has recurring seizures, they have epilepsy. People will start to figure out warning signs, or “auras,” that a seizure is about to happen, such as headache, dizziness, smells, or muscle twitch. If your seizures are chronic, you may need to take medication for them and take precautions such as not driving, swimming, or using sharp objects.

Many aspects of cancer and treatment can cause cognitive problems, making your mind cloudy and your memory poor. Some ways to combat this are writing down lists in a journal, setting up reminders on your phone, using a pill organizer so you remember if you’ve taken your medications that day or not, and doing crossword puzzles or Sudoku.

Anemia is a low level of red blood cells, which provide oxygen to the body. The most common symptom is fatigue or light-headedness. Your doctor may prescribe a drug for this or may suggest an iron supplement. Treatments take a while to take effect, so if your anemia is severe you may need a blood transfusion.[29]

A low level of platelets, which are responsible for blood clotting, can lead to excessive bleeding and bruising. Avoid activities where you could get bruised or cut, like sports or flossing teeth. If your platelet levels are severely low your doctor may suggest a blood transfusion.[30]

Infections are common when your immune system is compromised, when you have surgery, and when you’re spending a lot of time in the hospital. Chemo and steroids can leave your immune system very vulnerable. Be especially careful to get flu shots, wash your hands, brush your teeth, fully cook your food, and avoid crowds of people or sick friends.[31]

Nausea, loss of appetite, and change in taste are common effects of cancer and treatment. Your doctor may prescribe medications for these problems. Some things you can do are eat small meals, bland foods and liquids, limit the amount of fluid so that you don’t over-extend your stomach by drinking in intervals instead of all at once, avoid fried or greasy foods, avoid foods with strong odors or spices, avoid caffeine and alcohol, and drinking peppermint or ginger teas.[32]

Blood clots are not a direct side effect, but for unknown reasons are much more common in brain tumor patients. Signs are pain, swelling, or discoloration in legs, or chest pain and shortness of breath. You may be prescribed blood thinners to prevent blood clots.[33]

Level of sexuality is likely to change during cancer treatment. This is partly due to the fatigue and sickness that people feel, and can also be impacted by self-image as people lose their hair or gain weight due to treatments.[34] Find a doctor who you are comfortable with to discuss this issue.

Bad drug interactions can happen when you’re taking medications for your cancer, medications for your side effects, and seeing different doctors. Always tell doctors what drugs and supplements you’re already taking. Try to fill all your prescriptions at one pharmacy so they can help you avoid harmful interactions. You can also use an online tool to check for interactions.

You will likely experience hair loss during chemotherapy, and sometimes during radiation as well. Many people shave their hair before treatment so that it doesn’t fall out. If you don’t want to be bald, you can consider wigs, hats, or head wraps.

Patients who undergo surgery will often need rehabilitation and physical therapy to regain cognitive function and motor skills. This can be done at a residential rehabilitation center, through outpatient appointments, or home visits.

For children, the late effects of their cancer treatment can be especially pronounced since it impacts their development. Common lifelong consequences for childhood brain cancer patients include:

  • Learning disabilities
  • Hormonal problems that affect growth and development
  • Loss of fertility
  • Higher chances of second cancers
  • Hearing and vision problems
  • Damage to internal organs
  • Emotional problems
  • Physical disabilities
  • Seizures and neurological problems

Fully understand your doctor’s thinking on your diagnosis and treatment plan. Ask “why?” about each aspect of their suggested treatment. Make sure you and your Agent in Charge take notes during this discussion. It is completely routine to get second opinions before moving forward. If you have any hesitations at all, address them before starting your treatment course.

Consider alternative approaches. If it is important to you, ask your neurosurgeon if they take an integrative care approach. You may also want to consider palliative care, which focuses on managing pain and other symptoms with the goal of achieving comfort and good quality of life.[35]

After all other options have been exhausted, hospice care focuses on psychological needs, pain management, and comfort. This can be done in the patient’s home or in a nursing home, and typically includes a team of hospice caregivers. Getting hospice care does not mean you are giving up—patients can still receive treatment throughout hospice, and can leave hospice care if their condition improves.  Many patients wait to long to access the advice and benefits of hospice.

Remember that although you need to be focused on fighting your tumor, you have a whole body to take care of. Think about how many side effects and risks you can really tolerate and for how long.

Links

Chemo side effects

National Center for Complementary and Alternative Medicine

Jeannine Walston on Integrative Cancer Care

Wigs & hair loss

Continue Reading

10 Steps: Living with Brain Cancer

Sources

[1] “About Brain Tumors,” American Brain Tumor Association, 2012.

[2] “About Brain Tumors,” American Brain Tumor Association, 2012.

[3] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[4] “Glioblastoma Multiforme,” Faster Cures, 2012.

[5] “Brain Tumor Facts,” Accelerate Brain Cancer Cure, http://abc2.org/get-informed/brain-tumor-facts.

[6] “About Brain Tumors,” American Brain Tumor Association, 2012.

[7] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[8] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[9] “Bevacizumab (Avastin),” American Brain Tumor Association, http://www.abta.org/secure/resource-one-sheets/bevacizumab.pdf.

[10] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[11] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[12] “Glioblastoma Multiforme,” Faster Cures, 2012.

[13] “About Brain Tumors,” American Brain Tumor Association, 2012.

[14] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[15] “Brain Tumor Facts,” Accelerate Brain Cancer Cure, http://abc2.org/get-informed/brain-tumor-facts.

[16] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[17] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[18] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[19] “Glioblastoma Multiforme,” Faster Cures, 2012.

[20] “Glioblastoma Multiforme,” Faster Cures, 2012.

[21] “Glioblastoma Multiforme,” Faster Cures, 2012.

[22] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[23] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[24] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[25] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[26] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[27] “Brain Tumor Guide for the Newly Diagnosed,” Musella Foundation, 2013.

[28] “About Brain Tumors,” American Brain Tumor Association, 2012.

[29] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[30] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[31] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[32] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[33] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[34] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[35] “What is Palliative Care?”, Get Palliative Care, http://getpalliativecare.org/whatis/