Sharing lessons learned from my cancer journey.

This is a scary time! And you are probably overwhelmed with emotions. There is so much information given to you all at once. Trust me, I know. I have pulled together a list of resources for patients with newly diagnosed malignant brain tumors.

 

Start here as you begin your voyage:

Initial Pathology Report

I recommend getting a second opinion, first and foremost to confirm your tumor type. You may even opt for a third opinion if the second does not match the first. ADVOCATE for yourself and know that many errors and flaws happen with science and medicine, especially under these conditions!

Call the Brain Tumor Network (BTN)

OFFICE: 904-395-5220; WEBSITE: braintumornetwork.org

Provides FREE and personalized navigation services and information for individuals diagnosed with a brain tumor. BEGIN HERE - it will save you so much time and energy as they will do a personalized search for you. This includes everything from clinical trials, to fertility clinics, to nutrition, to drug interactions, etc., while incorporating advice about your particular insurance policies' coverage or other financial assistance options.

Questions to ask your navigator after making initial contact with BTN:

  • Clinical trials available

  • Combating/coping with side effects of chemo (i.e. hair loss, fatigue, constipation, etc.)

  • Fertility options and pricing (if desired)

  • Insurance benefits (if applicable)

  • Financial assistance available

  • Alternatives to chemo/radiation (diet/lifestyle changes; managing stress; etc.)

    • Healing Strong

    • Chris Beat Cancer: The SQUARE ONE Healing Cancer Coaching Program

    • https://medericenter.org/

      1. well known in the integrative / functional medicine world for Glioblastoma support

    • Functional Health Coaches

      • Richmond, VA: Missy Bane, FDN-P (804.909.2764)

        • She is a wonderful resource and knows about amazing supplements to support and nourish what your body is going through. Plus, she also knows how to make some delicious smoothies! And is an angel.

    • Dieticians may also be a good resource on how to support your body during this time. Speak with your doctor about dieticians near you.

    • https://www.drfuhrman.com/get-started/health-concerns/26/cancer

    • https://www.hayhouse.com/the-truth-about-cancer-paperback

Establish a neuro-oncologist

This may be at a hospital where a trial is available to you, or somewhere more local. If you have insurance, keep in mind the processes you may have to go to for out-of-network coverage and/or preauthorization. Your neuro-oncologist may suggest additional testing for your tumor type, such as molecular testing or mgmt testing/DNA methylation testing. If not, ask if this would be beneficial for you!

Start early with self-care

Know you are not alone and allow others to help you. You will need help and getting a strong support system is vital.  You are NOT a burden. Reach out to counseling resources, meditate, journal, or get creative with ways to center and find balance. This can be a stressful process. Again, you are not alone.

Other resources for you:

  • National Brain Tumor Society (NBTS): 877-769-4812

  • American Cancer Society: 1-800-227-2345

  • Cancerlink: free consult with Client Services Attorney

Encouraging Stories:

Things to keep in mind

This is the MOST important time to make diet, exercise, and lifestyle a priority. Chemotherapy has very damaging effects to the body and it is important to research foods/natural remedies to keep certain organs intact, and especially the LIVER!

  • Constipation: Talk to your doctor about medications and diet recommendations. May be appropriate to seek out a dietitian or functional health coach.

  • Hair loss: Consider a cranial prosthesis (wig) however determine insurance coverage

    • RVA Local Contacts:

      • Planet Hair Inc: Explore options/insurance eligibility

      • VCU Massey Cancer Center-1 free wig a year regardless if in-network/insurance policy (2020)

I hope this helps!! I have been in your shoes and it is not easy. Remember, this is the start of a new journey. Please feel free to contact me with any questions and I can help guide you through.

Love always, Hannah

Disclaimer: this is not medical advice. Consult your doctor about a treatment plan that makes sense for you.

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