• Survival rates

    Asked by bbr54 on Saturday, March 2, 2013

    Survival rates

    I would love to hear from anyone who has survived 3 or more years past their glioblastoma diagnosis. Please share your story with me. I am newly diagnosed and feeling very hopeless right now.

    Thank you

    17 Answers from the Community

    17 answers
    • Peroll's Avatar
      Peroll

      I can't speak directly to your cancer as I have colon cancer not glioblastoma; however, I can speak to survival rate staatistics as they are used. The survival rates you have seen or been told by your Drs are, as with all cancer stastistics at least 5 years old and with advances in treatments things are most certainly better than they sound. Also remember that if the average survival rate is 3 years that means half the patients survive more then three years and some much more than three years. I personally have hit the 5% end of the probability 5 times in a row so it casn and does happen. Any csancer can be beat and people do it every day. You can do it if you follow the treatments and keep as positive as possible about doing so. Good Luck and let us know how it goes.

      almost 4 years ago
    • carm's Avatar
      carm

      Ben54,
      Hi my name is Carm and I am an oncology nurse, let me give you a link to Ben Williams website. it is www.virtualtrials.com/Williams.cfm. He is a 17 year survivor of GBM. He wrote a book on it and disclosed how he did it. The book was a great read. Also watch the documentary called Hannah's Anecdote. You can see it for free on documentary.com. I think between the documentary and Ben Williams story you will find the hope you need. Best of luck, Carm.

      almost 4 years ago
    • carm's Avatar
      carm

      Sorry, darn incorrect, that was www.documentary.com.

      almost 4 years ago
    • carm's Avatar
      carm

      TOP DOCUMENTARY.COM

      almost 4 years ago
    • cherlind's Avatar
      cherlind

      Good Morning to you. I can't speak to your specific diagnosis, either. I was diagnosed with a different type of brain tumor, an ependymoma. There are no chemo protocols for that. I just completed my 6 weeks of radiation. But, I wanted to tell you if you ever need someone to talk to who has at least gone through some of what you're going through, let me know. I live in Elk River.

      almost 4 years ago
    • CAS1's Avatar
      CAS1

      glioblastoma is having a number of really great breakthroughs in clinical trials. There is more activity in the last year than I have seen in the last 10 so its really moving very quickly.

      almost 4 years ago
    • PhillieG's Avatar
      PhillieG

      Sorry to hear of your cancer diagnosis. I have stage IV CC so we'd be comparing apples & oranges BUT when it comes to stats and survival rates, it's similar in the sense of it being a generalization based on many factors. When I was diagnosed 9 years ago the 5 yr survival rate was well under 10%. But that number takes everyone into consideration so the 90 yr old with a bad heart who doesn't survive often gets viewed as dying from cancer.
      See how the data can be skewed? The Internet can be great for gathering information but sometimes the data's outdated (2 years is a long time in cancer research, many advances CAN be made in 2 years...) and other times it can be just inaccurate. There are no checks and balances to make sure that accurate info is on the Internet.
      The way that I've always viewed my cancer has been "Someone has to be in that group that survives. Why not ME?"
      I ask, "Why not YOU?"
      -phil

      almost 4 years ago
    • KiVier2011's Avatar
      KiVier2011

      My son was 16 when he was diagnosed with anaplastic Meningioma - which means his was cancerous. He went through major surgery and radiation. That was last year. Although the survival rate for his particular cancer is very low, we have chosen to let him simply live his life- meaning we eat well, exercise, and he's about to finish up high school. We make sure to follow all the doctors' advice, but we don't get bogged down with the research- it's just too depressing. I am constantly keeping him looking to the future, making long- and short-term plans, talking about the what nexts not the what ifs. . Your cancer is not your definition- you still define yourself. Take a break once a month to see what's happening with research, print up or journal what's new and keep it in a notebook, then put it away and live on. We also were terribly overwhelmed at first, and still are at times, but making sure you have the best available doctors and that you are listening to them and following their advice- along with keeping a positive outlook are the best things you can do to give yourself the long-term chance. Best wishes, & I'll be happy to cheer you on too! -Kim

      almost 4 years ago
    • FuzzyGirl's Avatar
      FuzzyGirl

      I am a 3.5 year survivor of an Anaplastic Astrocytoma Grade III. I know lots of other brain tumor survivors, several of whom are GBM survivors. Don't let the statistics get you down. My friend Beth has been kicking her GBM's butt for 3 years. She is hiking in Arizona as we speak! While it is true that some people pass quickly, many others live on year after year. Hang in there because hope is around the corner. Check out all the clinical trials that look promising. Stay positive!

      almost 4 years ago
    • CAS1's Avatar
      CAS1

      Well I have a little more to add: My husband is a former Professor of Economics..He taught University level statistics courses. He is down right angry over the material and data used in the calculation of cancer statistics. What he will say and even to my Doctor in jest " Folks you really need to teach a few statistics classes in Medical School-maybe more than a few now that I think about it".

      So thats it from the Horses mouth so to speak.

      Have a nice day!

      almost 4 years ago
    • SouthernMom's Avatar
      SouthernMom

      I can't speak to your specific type of cancer, but one of the things my oncologist said to me was that no one has an expiration date on them any where. I don't know your religious affiliation, but I have seen amazing things happen, just on my short journey. Don't loose hope! I will definitely help cheer you on!

      almost 4 years ago
    • Rainbowkdm's Avatar
      Rainbowkdm

      I can speak to your cancer. My husband was diagnosed with GBM 2 1/2 years ago. Although the initial tumor took his ability to move his left arm and has affected his left leg, we are one month from his most recent good MRI report. Absolutely no growth since 3 months ago. Yes, this diagnosis is devastating, yes, we feel hopeless many times. But he should have died in 2010 and now we have been blessed to make it 2 more years and even got to celebrate our 10th wedding anniversary. We live every day like it's the last one we will spend together. I wish you luck. Keep your head up and keep fighting. Trust in God. He will bless you.

      almost 4 years ago
    • melee_me's Avatar
      melee_me

      My 25yr old daughter is 4yrs 9mths post GBM diagnosis and doing really well. Her surgery went well with 90%+ tumor removal, she had radiation X 6wks & chemo X 9mths and has had clear MRIs for past 3yrs.
      DON'T BELIEVE the stats, you aren't a statistic. Everyone's tumor is different and so is their body's response to treatment…
      I agree with Carm below Ben Williams was an inspiration and lifeline to us when my daughter was first diagnosed. Apart from his incredible 17yr survival story, he wrote & updates guides on brain cancer treatment, including natural healing foods. These are available online free from the site listed in Carm's post below….
      My daughter has daily cancer fighting smoothy with blue berries (frozen organic are best), banana, flaxseed meal, and milk. She also takes Omega3+6 & melatonin capsules & eats heaps of broccoli, tomatoes (cooked is better for releasing the cancer-fighting enzymes), and heaps of fresh fruit & veg…
      It's still early days for you, try to live each day to the fullest, but remember to go easy on your body as it is recovering & fighting the tumor….
      In the early days, I heard of a woman who when told the dire prognosis by her doctors, said "that's unacceptable" - that's been my mantra ever since. Try it, it seems to set your mind to a more positive place….
      I highly recommend mindfulness for you and anyone close to you who may be doing it a bit rough now. Here is an online guide (free) to mindfulness exercises for relaxation. http://www.helpguide.org/mental/stress_relief_meditation_yoga_relaxation.htm ….
      Email me on [email redacted] if you want to ask any questions.
      Best of luck

      almost 4 years ago
    • melee_me's Avatar
      melee_me

      You'll find some more people living with Glioblastoma (GBM) every Thursday on #BrainTumorThursday on twitter. I find a lot of support & hope there from survivors, families and carers.

      almost 4 years ago
    • CAS1's Avatar
      CAS1

      Meele....

      I love that mantra "This is just unacceptable" I will be using this too...Love this...This should be the rally call for cancer becuase of the low amount of government funding for certian cancers..

      "THIS IS JUST UNACCEPTABLE" Love this..

      almost 4 years ago
    • tervin's Avatar
      tervin

      I am coming up on 1 year of my grade IV GBM diagnosis and doing well with no regrowth as of November. When the tumors were found I was knocking on Heaven's door. Luckily they were found and 100% resected. I agree with the person who posted that you are not a statistic. That is the main thing my oncologist kept telling me. Best of luck to you.

      almost 4 years ago
    • Suzy-q's Avatar
      Suzy-q

      I am a 5 year survivor (in October) of an Anaplastic Astrocytoma Grade III. My tumor was on the right front parietal lobe, effecting my speech & thought processes, and some days basic motor skills usually by the end of the day, or when I'm worn down. My balance has bad days as well...Think of a pin ball :) that's me in a door way...I used to get so mad at that, now I laugh! But I am doing so much better than my surgeon expected!

      over 2 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more high-grade astrocytoma (also called glioblastoma) questions.  Also, don't forget to check out our High-Grade Astrocytoma (also called Glioblastoma) page.