42yr old sister diagnosed with Glioma

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AAhope
AAhope Member Posts: 3 Member
edited December 2023 in Brain Cancer #1

My sister was diagnosed with a glioma a few weeks ago. She had brain surgery within 2 days and all was removed. Her prognosis, as you know, is 12-18 months.

I am up and I am down. Life is more precious than it even was before. I can’t fix this for her. I am so sad I burst out crying without even knowing I was going to…. I can handle my grief… but am feeling so sorry for my sister. So sad she has to face this and be worried on a daily basis about the inevitable. I am someone who thinks positively and I know she can beat the odds. But I am so sad. Does anyone have experience helping a close family member through this… how do I start?

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  • mick67
    mick67 Member Posts: 4 Member
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    Hello, I’m so sorry for your sisters diagnosis.

    I have a relative that was diagnosed at 35 w/2 kids under 4.

    it hasn’t been easy, but she’s still with us and doing ok 4.5 yrs later.

    It’s a cliche, but finding her new purpose and trying to enjoy the beauty in every day is important.

    Shes lucky to have you for support. Just being there for her and encouraging her little victories, as well as helping her find joy is important.

    best of luck to both of you-

  • AAhope
    AAhope Member Posts: 3 Member
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    I appreciate your words so much. I’m so glad your family is still here and well. I find myself scouring for hope.

  • JoeBoronat
    JoeBoronat Member Posts: 1 Member
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  • AmyES
    AmyES Member Posts: 13 Member
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    Hi! How’s your sister doing?

    I was diagnosed 10 years ago with an anaplastic astrocytoma grade 3, so very similar tumor to your sister’s tumor. The prognosis was not much better. I was 29, and now I am 39.

    The first thing I did when I got home from learning about my prognosis was to get on the Internet and look specifically for survivors. typically doctors will tell you not to get on the Internet but you’ve already heard the worst news, so what more could Google do?! I found them on this website. They exist! I needed to know to I had a fighting chance. That hope is out there. People have gone on to live lives well beyond what the doctors told their patients what was possible.

    I myself went on to have two more children. I was one week postpartum when I was 29 years old when I had a grand mal seizure and was put in the hospital and had my brain surgery, the fact that they got all the tumor out of your sister is a great thing! I lived in fear for a long time, but decided to start living the life I wanted to live, and that led to the extra children that I didn’t think were possible when I learned my prognosis.

    It is right to grieve, because this is a loss of health and normality, and for me personally, I lost dexterity in my right hand permanently, so I’ve had to learn to live with that.

  • AmyES
    AmyES Member Posts: 13 Member
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    I also give a lot of credit to God, my doctors, and my family and my friends! If her doctor is not giving her any hope, find a new doctor! I went all the way to Duke with their fancy brain tumor clinic, and the doctor told me I was definitely going to have a recurrence it was coming back it’s just a matter of time . I don’t go to Duke anymore because of that! My oncologist is also my biggest cheerleader! I love her. Let your sister feel know how loved and supported she is!!

  • AAhope
    AAhope Member Posts: 3 Member
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    AmES - wow.. thank you so much for writing to me. I haven't been on this site in quite some time. My sister lives on the other side of the country from me. She is not communicating much with my brother and I. Only with my folks once a week. She knows it would kill them otherwise. None of us have been able to see her since February. It's complicated and sucks. I'm crushed that I'm not part of her journey. She was my "twin" most our lives as we are only 23 months apart. She is not in an environment that promotes optimism. In some ways, she has just accepted this as her fate. It makes me sick, heartbroken... helpless. I think of her beautiful face and how strong she is and how connected we are spiritually and in our gut. I send her strength through my thoughts and mind. It's all I can do.

    I was so inspired to read your message about your experience and journey. You sound like my kinda 'gal! Life is so precious.. this has changed my perspective on time and dimension. None of know our end date.. and I now understand what a gift that is. But it breaks my heart to see my sister think hers is very near.

    I wish you strength and hope your optimism, spirit and sense of power permeate the ethos and help so many millions suffering.

    Bending the topic a bit... since my sister found the tumor this past Feb, I have since had multiple people tell me they have a close friend, or friend-of-friend that has discovered a brain tumor and glioma just as my sisters. WHen I started researching earlier in the year I read how very rare this cancer is. But now, have people popping up here and there telling me they know someone... WTF? Do you have any insight? Early on my sister said something about always having her cell phone to ear... she was in the medical field and always fielding calls...

    Thank you for sharing your words and your spirit with me. This was a total suprise and such a beautiful connection you made!

    XOXO AAhope

  • AmyES
    AmyES Member Posts: 13 Member
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    I hope for the best for your sister!

    I thought about the cell phone up to my ear for years also, but I think brain tumors existed long before cell phones did. I was pregnant leading up to the time I was diagnosed, and a lot of people think that my pregnancy caused the brain tumor, but it didn’t! It was just coincidence.

    I also noticed hearing more about brain cancer after I was diagnosed. I’m sure there’s a word for it, but I think you’re just more in tune to hearing it than you were before. Now that it effects us personally, our ears perked up when we hear it on the news or when a celebrity has it or a friend of a friend. I think information about brain tumors I have always been in the news with politicians being diagnosed and celebrities. Being diagnosed, we just didn’t have a connection to it at the time so it went in one ear and out the other. Where as now we pay more attention.

  • Research101
    Research101 Member Posts: 6 Member
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    What I can recommend is be proactive. She will most likely get Standard of care for treatment. This will include Temodar and radiation. Make sure she has a detailed DNA sequencing on the tumor. There are many new trials and they are very targeted. Some are very specific to the DNA results. Remember we do not have expiration dates like yogurt. So don't pay attention to the doctor who says 15 months. Everyone is different. Do your homework and start looking at trials. NIH sure is a good place to start. If she is in the US I suggest reaching out to Cancer Commons. They are incredibly knowledgeable and can guide you. I wish your sister all the best.