Newly diagnosed

m396tth
m396tth Member Posts: 1 Member
edited June 21 in Brain Cancer #1

I’m newly diagnosed with a brain tumor. I don’t know what to expect and the idea of surgery is terrifying to me. How do I get the neurosurgeon on my case to slow down and walk me through it? Why is my doctor so impatient with my questions? How do I ask about decision making…if/when it comes time to make those calls?

I’m an orphan and unmarried - what are my options for POA? I don’t even know how to bring up these topics with a doctor, the idea of trying to tell the people who know me is even scarier…

Comments

  • maria90
    maria90 Member Posts: 7 Member
    #2

    It's crucial to have a dedicated appointment where you can ask your neurosurgeon to explain everything in detail. Don't hesitate to request more time and ask all your questions—it's their job to ensure you understand and feel comfortable.

  • KLJ57
    KLJ57 Member Posts: 2 Member
    #3

    Hi, I know its scary and daunting and there is so much new information to learn and decisions to make.

    One of the most helpful people to start with may be the social worker or discharge planner at the hospital where you will have surgery. Another helpful person would be the nurse practitioner who works with the surgeon or another nurse who is in that department. Depending on the state you live in there should be assistance from the city or state for elderly or other vulnerable adults.

    Here in California there are both public and private groups that can help you through the process and many other states have similar programs. Adult Protective Services, Division on Aging, the Public Guardian or Public Administrator in your county, will all have access to different types of services that may help you. If you need an attorney to help you there is Legal Services for Seniors. You dont have to be a "Senior" to get information from these resources. Your local YMCA or Senior Center or local places of worship may also have help for you. Its alot to take on alone, and there are caring strangers who are vetted, capable and willing to help.

  • CJ1962
    CJ1962 Member Posts: 2 Member
    #4
    https://csn.cancer.org/discussion/328176/newly-diagnosed
    https://csn.cancer.org/discussion/328176/newly-diagnosed

    The truth is they really don’t know . I had my brain surgery in 2009 . My sister asked the doctor is she gonna be able to talk is she going to know who we are ? The doctor told her they just didn’t know so they really don’t know until you wake up and see how you are. They’ve made a lot of progress with brain cancer. I personally went. To Duke in Durham NC They have a really good group there. . Never lose hope . Stay positive . Lots of survivors out here . I’m 15 year out Anaplastic Oligodendroglioma . Praying for you . Stay strong . The brain is a difficult organ . Good luck . Don’t worry about anything . Pray about everything 🙏🙏🙏

  • MsAmelia
    MsAmelia Member Posts: 2 Member
    #5

    ask any and all your questions. Over and over if you need to. Try and take one decision at a time with your end goal in mind. And although I don’t know you, please know that I am praying for you and your recovery. My dad was just diagnosed yesterday with a brain tumor. We are terrified and heart broken. But trying to stay positive for him.

  • andreacan
    andreacan Member Posts: 3 Member
    #6

    You may feel that you are alone in this, I did at first. And brain surgery is scary. But, if you have the right doctor and surgeon, all of your questions will be answered to the best of their knowledge. The truth is that everybody's journey is different.

    I started a Facebook group that friends and family could join to get updates on my journey. This was very helpful for me. It made me feel like I had a team of supporters following me. Not every one of your friends will participate, and that is fine.

    There are also groups of patients and caregivers who are happy to help by sharing their experiences. I relied on these a lot. Don't be shy or embarrassed to ask all of your questions.

    I often took lists of questions with me to appointments so that I wouldn't forget to ask.

    My sister devised a system for me to keep all of my medications straight. That, pill sorters, calendars, and alarms helped me tremendously.

    I am happy to help, just ask!

  • andreacan
    andreacan Member Posts: 3 Member
    #7

    Also, try to stay positive AND optimistic.

    It may be difficult, but it certainly helped me!

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