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    Brain cancer, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Brain cancer, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    6 Answers from the Community

    6 answers
    • Fusionera's Avatar

      In my 18-year journey fighting a Grade III Oligoastrocytoma, my support network has been crucial in myriad ways. I strongly urge newly diagnosed patients to let people help you. They may feel otherwise powerless in your cancer battle, as they want to take on that cancer for you but know they can't. Whether it's a meal, a ride to an appointment, or a shoulder to cry on, people love you and really do want to help. Know too that there may be people who disappear from your life during this crucial time. My supposed best friend left me in the lurch when I was diagnosed, and it told me a lot about her character (or rather, lack of it). Don't be surprised if certain "friends" back away - it is a reflection on them, not on you!

      There is also nothing like a brain cancer diagnosis to make you reconsider your spiritual life and to question God about His role in all of this. I myself have had to come to the realization that while God does not guarantee us a life without pain, He does promise to be there with us through it all. The excellent care I've received from my medical team, and the love of my friends and family, are all proof of that.

      I advise that you actively include a social worker from your treatment center on your care team, because he/she can help you with issues you may not have the energy to consider at such a difficult time. This person can help you find and apply for financial resources such as state and Social Security Disability to help you while you're in treatment, or can connect you with support groups and other resources.

      As a high-information person, I found it extremely helpful to join a local brain cancer support group. I learned from others how they coped with the physical and emotional challenges they faced with their diagnosis and subsequent treatment. These groups will also sometimes feature guest speakers on topics relevant to this disease.

      There are some amazing sites out there now that offer support to brain tumor patients and their families, the best one in the US being the American Brain Tumor Association (www.abta.org). This is a great place to start if you're seeking patient and/or caregiver services and information. It is also always worthwhile to inquire about clinical trials for which you may be eligible; I wouldn't be here now had I not participated in the clinical trial of Temozolomide in the mid-90s, and that drug (now marketed as Temodar) is the gold standard for treating my tumor type. WWW.virtualtrials.com is one of many sites useful in locating clinical trials.

      I also somehow managed in all of this to develop a really twisted sense of humor about my disease. I even created a Frequent Scanner Miles Card to account for the dozens of MRI scans I've had. Since I have now hit 67 scans, I am on my second punch-out card. I have to laugh about these things or else I would cry all day. I don't need more wrinkles, so I find laughter is the best medicine. My social media page specifies my job as "Tumor Humor Specialist" at "Professional Survivor." It is the only job I can take on at the moment as I begin battle number five with my "naughty child". That nasty P word (prognosis) is not allowed in my vocabulary. I'm still here, aren't I?

      over 3 years ago
    • jREINHARDT's Avatar

      I was diagnosed with Glioblastoma Multiforme (Grade IV) just over a year ago, and i can say the first year sucked, not only because of cancer, but because i truely found out who was by my side and who was not willing to go the journey with me.

      The first person I would expect to be my main person of support, my wife, filed for divorce exactly 60 days after my diagnosis. Oh well, it was just too much for her to handle. My second option for support was my parents, who while up there in age, have been a rock on my care team, and also through my divorce. I aslo have two little girls, age 2 and 4, that make getting through each day worth it.

      I have also found support in some unlikely places. First, to my surprise, the Oncologist running the trial i signed up for is a buddy i grew up with 3 doors away from me. It is nice to have a Dr. that knows you personally and I feel like he actually has some skin in the game. It is good that he knew me from before as well, he can more accuratly guage the effects of the disease on me both physically and mentally.

      Second place i was surprised to find support was from my work family. One of my initial fears when i was diagnosed was where will the money come from? How am i going to pay for this? Work made sure that i never missed a paycheck, never had my benefits dropped, and never had to worry about not being able to return to my job. (FMLA didnt apply to me since i was only there for 8 months before diagnosis) They also were some of my only visitors I allowed during my first year, I hated people seeing this former soldier, athlete, and macho man reduced to a crumpled mess. This will be the last place i ever work!!!!

      Being a very introverted person I didnt expect a ton of support from a tight knit group of friends, but i have begun to develop that tight knit group of other cancer warriors.

      The first year was a rough one, but it could of always been worse.

      over 3 years ago
    • KarenEsta's Avatar

      I had my first tumor at the age of 15. The doctor found it when I went for my two week check up after having my eardrum replaced. He took this long metal shishkabob looking thing and punctured it while my mother laid across me to hold me still. Then at age 23 I was blacking out with severe migraines. So they ran tests and found 2 tumors. I went back a couple of months later and they found 3 more. One measured 3.5 cm by 6.5 cm. I called my church and had myself put on the prayer list. I had my friends and family do the same at their churches. I would be at the store looking at cereal or whatever and be praying at the same time. The tumors were inoperable so I was on medication for the pain and other symptoms for 4.5 years. I just kept thinking if I gave up my Mama and all my nieces and nephews would be sad. And I wondered if I did give up if that was considered suicide in God's eyes. And I didn't want to go to XXX if it was. My neurologist put me on a radiation pill. I had to take it twice a day for 7.5 months. It made me sick and my hair fell out. I even had our Medicine Man pray over me. I had a CT scan on October 12, 2009 and my tumors were gone. I hugged that technician and cried tears of joy. Whenever I felt bad I would reread the book of Job in The Bible. I can't tell you how many times I read it. I hope this inspires you to never give up and that you will win your fight too. God bless.

      over 3 years ago
    • reginak's Avatar

      When I was 39 I was diagnosed with stage 4 hemangioparisytoma in my frontal lobes. I had gone through 2-3 years of agonizing, confusing and scary personality changes prior to the official diagnosis which occurred in an ER in Hawaii. I was lucky because I was a military dependent and the hospital, Trippler Army Medical Center is expert in the Pacific for treating brain tumors. The army gave my husband a month off to care for me in the hospital, but he wasn't there much. He said he was there during the surgeries, but not for the times I was afraid and scared in the middle of the night. The nurses and medics were really my best support network during the month I spent in the hospital. Chaplains came to visit regularly, and volunteers brought therapy dogs by my room occasionally. My medical team was wonderful, but I didn't really have much say in choosing them. I was admitted from the ER and those were the team available. The radiation oncologist was exceptionally helpful. He explained why radiation was good for fighting cancer but bad in other circumstances and freely admitted that he had never treated my type of tumor before and gave me information about 3 hospitals in the mainland that had.
      I ended up choosing UCSF and they had an exceptional care team. It included support groups, massage, nuero-oncology psychologists, and complete care team meetings.
      My true and honest support team was my cat (which made my now ex husband more jealous), and my parents and friends. I had leave HI and my husband before I could get to people who would care for me. I now have a great neuro-oncologist who is very smart, explains things clearly and has no issue with providing me with medical research regarding my type of cancer and honest assessments of chance of recurrence and life expectancy rates.
      I am a high-information person, and the lack of information about this type of HPC is very frustrating. I have chased down every single link or report I can get my hands on.
      I don't know if I am a survivor since I did survive the initial re-section and radiation, but there is a 54% chance it will recur in the next 6-10 years. As someone who is newly single with two young children this is scary to me.
      I have become much closer to God and pray to St. Peregrine twice daily.

      over 3 years ago
    • Chilitat's Avatar

      I was diagnosed with a brain tumor going on 6 years now. They say it is inoperable. I had a very hard time dealing with it. I was in denial. Mindfulness classes really helped me. So far the tumor is dormant, stage 2. They tell me it will grow and I have learned that I need to live life and not worry about this so much. It is a hard journey, one that let me get to know myself. I choose to stay off Chemo as long as it does not grow. I was on it the first year. Kepra made me angry and very depressed. They changed my medication. My question is always "Can I live to be old". Is it possible?

      over 3 years ago
    • Fusionera's Avatar

      I certainly believe that you will. I have been dealing with my Grade III Oligoastrocytoma for 19+ years. My "naughty child", as my mother calls it, periodically rears its ugly head, as it has several times. I had 2 recurrences in 2013 alone and am in chemotherapy right now for the second one. I was diagnosed at 26, and I just had my 45th birthday. Keep looking forward, and don't freak out about potential future recurrences. There is nothing you can do about it at present. Additionally, there are always new treatments coming down the pipeline.

      over 2 years ago

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