Mom recently diagnosed - looking for support

daughterofgbm
daughterofgbm Member Posts: 3
edited March 2014 in Brain Cancer #1
Hello. My mom was diagnosed with glioblastoma malforme 11 days ago. My entire family is distraught and lost. The initial pathology report said it is in Stage IV, and we're still waiting on the final pathology report, due back today. My mom had surgery last Thursday (a week ago) and the neurosurgeon removed all of the tumor (as far as he can tell). My mom is only 56 years old and the picture of health. She is small ( 5'2, 107 lbs) and bouncy and energetic. She watches what she eats and exercises daily. She had absolutly no symptoms until a series of seizures Saturday night while sleeping. Thank goodness her husband was there and called 911 immediately and she was rushed to the hospital. She went thru the typical series of tests: CAT scans, MRI's, EEG's, etc. The doctor suspected a GBM Stage IV immediately, based upon the shape, texture, ring around it, hole in center, etc.
I am devastated by this news. I am completely beside myself with worry, concern, and grief. I am looking for someone(s) who have been thru this and help me cope, or we can help each other. I would like to know how to talk to her about this. We have a very open relationship; she is my best friend. Her husband has told my brother and me that she knows everything - the good, the bad, and the ugly. However, she is talking about living another 10-20 years. From what the doctors have said and what I've read on the web, I understand that she has a maximum of 3 years or so, if she's a Medical Miracle. She also did not know until yesterday that it was considered a stage IV. I'm not sure if she heard it in her medicated fog and doesn't remember, or if she has not allowed herself to retain the negative facts, or if she had not indeed been told! I'm not sure how to handle it. I want her to know what she's facing, without destroying her positive outlook.
I would appreciate anyone responding who has some good news, fresh ideas, or suggestions. I'm totally grasping at straws right now, and I need someone who's gone thru this too.

Comments

  • Bridie
    Bridie Member Posts: 1
    #2
    Hi, my Mom has a GBM as well, it was diagnosed in March 2005. It was low grade at the time. They unfortunately did not operate because it was so deep in the brain so I can't tell you how it is for after brain surgery, but what I do know from what I have researched over the past 2 years is that you can expect quite some years, but research does vary very much on how long, but I have heard of more than one patient lasting 15 years. I hope that doesn't give you false hope. You should ask the surgeon or ask any of the specialist oncology nurses at whatever hospital she was treated at and they will tell you the truth if you ask straight out.

    Mom went from low grade to high grade very quickly in a matter of weeks beginning in November last year and I expect to loose her any day now. So I guess I'm not the most cheery of people to talk to. All I can say is that you are a very lucky daughter because she has a good chance now. Good luck to you and I wish you well.

    My advice regarding how to cope is that you should enjoy every moment that you have, be open and talk about it and allow her to be upset and let her know that you are worried and upset as well. Just let her know how important she is and that you love her and that you will fight this together as a family.

    Best wishes, Bridie
  • daughterofgbm
    daughterofgbm Member Posts: 3
    #3
    Bridie said:

    Hi, my Mom has a GBM as well, it was diagnosed in March 2005. It was low grade at the time. They unfortunately did not operate because it was so deep in the brain so I can't tell you how it is for after brain surgery, but what I do know from what I have researched over the past 2 years is that you can expect quite some years, but research does vary very much on how long, but I have heard of more than one patient lasting 15 years. I hope that doesn't give you false hope. You should ask the surgeon or ask any of the specialist oncology nurses at whatever hospital she was treated at and they will tell you the truth if you ask straight out.

    Mom went from low grade to high grade very quickly in a matter of weeks beginning in November last year and I expect to loose her any day now. So I guess I'm not the most cheery of people to talk to. All I can say is that you are a very lucky daughter because she has a good chance now. Good luck to you and I wish you well.

    My advice regarding how to cope is that you should enjoy every moment that you have, be open and talk about it and allow her to be upset and let her know that you are worried and upset as well. Just let her know how important she is and that you love her and that you will fight this together as a family.

    Best wishes, Bridie

    Bridie- Thank you so much for your response. I'm sorry you think your mom will pass soon. I can't imagine how hard that day will be, and I hope she's around for you much much longer.

    I am planning on documenting her life story thru journals, videotapes, and conversations. My son will definately remember her (he's 10), but my daughters may not (2 & 3 y/o). My mom is such a wonderful "Nana" and my kids absolultely adore her. I can't even think about her not being around for them.

    Thanks again for your kind words and I, too, wish you the best and your mom is in my thoughts.
  • randeewillard
    randeewillard Member Posts: 1
    #4
    I know how you are feeling. I was dignosed with brane Cancer last May. I have already had my sergry and it was a great sucess. I am only 24 and I have a son that is 2, a sone that is 4 and an incredible husband. I can only imagine how they felt. It sound like your mom has great support fom you, and I encourage you to keep it up. The tumor that I had was a stage II astrocytomas, so it sound like your mom has it a little harder that I do. I am so sorry! Right now, I am going through Rehab for speech therapy. I have had to learn how to walk,talk, and try to get things done around the hous. Im also starting to see a phycologist for depression and therapy( probably, with everything we have gone through). I am not exactly sure what your mom symptoms are but the only I can tell you, is to just be there for her. I know that there are time when it will be hard to see what she is going through and some time she may not show it, but being somewhat in her shoes, it is all that matters. Again, I am very sorry.
  • janinemah
    janinemah Member Posts: 53
    #5
    I'm very sorry you are facing this. My mom has been fighting this battle for alittle over a year now. She was dx on Jan 4th 2006. Its been a long hard road with alot of trials. She's a fighter. She's had 3 surgeries, chemo, rad, chemo waffers (twice), been one the scorpion venom trial and now she has a new growth in a different lobe. this time she can not have surgery so she is fighting it with chemo. Mom has known all along about how hard this is to fight but has wanted to fight it all the way. This last time she did not want to know much about it. until a couple of days ago, (it showed up in an MRI on Jan 2nd)....Moms is very aggressive, Not all are as aggressive. It depends on the person. I hope your mom has it easier. A friend of ours has the a GBM IV also and he has been doing ok for 2 years now. You just never know. Hang in there and try to find hope and hold it close.....spend as much time with her as you can.

    Again so sorry to hear about your mom...
    I understand! my mom is my best friend also, this is the hardest things I've ever had to go through...my mom is 65 and I am 44..

    Hang in there, Janinemah
  • Sabrina01
    Sabrina01 Member Posts: 2
    #6
    Hello, My Husband was just diagnosed with the same thing as your Mother. He had surgery to remove a tumor on 1/31/07. His was also Stage IV. My Husband refused Chemo & Radiation because it would only extend his life to about a year. During that time he would be in bed most of the time and sick. What the Doctors don't tell you is that patient can die from the chemo and radiation alone.

    I am a firm believer in Natural Medicine because of the miracles it performed in my life and the testimony of others. So I began with the book "Fear Cancer No More" by author Mauris L. Emeka. His wife was dying from Pancreatic Cancer when he began to do this research. By the time he found the answer, it was too late...she had already passed away. He decided to pass this information to the general public in order to help others who are diagnosed with cancer. My Husband has started the treatments that he recommends plus we sought the help of a Natural Health Consultant who has spent the past 30 years treating people with cancer (including brain cancer). Not one of his patients have died...10-20 years later they are still alive! Have you ever heard of that kind of success with Chemo or Radiation? No! My Husband began to follow these treatment plans right after his surgery. His condition has improved...NO MORE HEADACHES! Continue your search for help for your mother, look up Naturopaths in your area, Health Consultants and also the Web. Please see www.flaxoflife.com for another success story! He is a Glioblastoma Multiforme survival story, too.

    Our prayers will be with you.
  • tommyd
    tommyd Member Posts: 3
    #7
    hi, my wife is a very siilar case to your mom but we are at a later stage. I wont lie to you hun this is a very tough diagnosis but i will give you one piecce of advise , slow down and take it one step at a time. This is too much to handle all at once. You mind is racing forward to all scenarios and you need to stop and gather your strength. Your mom will hear it in her own time. Thats how my wife was and if she is anyting like my wife she might astonish you with her strength but thats down the road hun.Dont get caught up in the stats right now, just help her recover from surgery and give her your support. You are all in very early stages. Just a small piece of advise dont take **** from the doctors and if something desnt make sense to you challenge it. Its so hard hun but it sounds like you have a good solid family there so lean on each other and show her all the love and support you can. sincerely, tommy
  • drpoundsign
    drpoundsign Member Posts: 52
    #8
    tommyd said:

    hi, my wife is a very siilar case to your mom but we are at a later stage. I wont lie to you hun this is a very tough diagnosis but i will give you one piecce of advise , slow down and take it one step at a time. This is too much to handle all at once. You mind is racing forward to all scenarios and you need to stop and gather your strength. Your mom will hear it in her own time. Thats how my wife was and if she is anyting like my wife she might astonish you with her strength but thats down the road hun.Dont get caught up in the stats right now, just help her recover from surgery and give her your support. You are all in very early stages. Just a small piece of advise dont take **** from the doctors and if something desnt make sense to you challenge it. Its so hard hun but it sounds like you have a good solid family there so lean on each other and show her all the love and support you can. sincerely, tommy

    I am an Internist. Tetrathiomolybdate chelates copper out of the body, should stop the tumor from growing. There was a human study at U Michigan that proved this. God Bless

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