Friend has Brain Cancer Glioblastoma: What are the next steps?

Hello @susan159. Oh golly, this news of your friend’s brain cancer has to be quite a shock. Glioblastoma is a very aggressive form of cancer. While it’s challenging, there can be options with surgery, proton radiation and chemotherapy.

Your friend’s next step should be to reach out to a larger medical institution such as Mayo Clinic or a university/teaching hospital soon! ER doctors are not the ones to make the treatment options for her.

Here’s the link to Mayo Clinic if she’d like to make an appoint at any one of the 3 sites in Rochester, Jacksonville FL or Phoenix. The link takes you to Mayo’s home page where you’ll see the phone numbers for each clinic.
http://mayocl.in/1mtmR63

I’d also encourage you or your friend to read this Connect discussion:

@otis123's story here:
– My Husband's journey with Glioblastoma https://connect.mayoclinic.org/discussion/my-husbands-journey-with-glioblastoma/
~~~
Here is the link to the Brain Tumor group with other members who have gone through this or have loved once with Glioblastoma. https://connect.mayoclinic.org/group/brain-tumor-support-group/

Susan, does your friend, Jane, have any family living nearby?

Thanks for the response. I'm sending it on to Jane's daughter so she can decide about Jane reading it. Jane does have a daughtre who lives nearby (single working mom), but no partner. She's very concerned about maybe not being able to live alone or being able to drive. Right now she's thinking she doesn't want to undergo any type of treatment, but I'm hoping that when she's seen by cancer specialists she will at least entertain the thought of treatment. If she reads some of this blog, maybe she'll change her mind....

I hope she changes her mind! It’s sad to just ‘throw in the towel’ without even trying. It’s way too soon to make that type of decision without having seen an oncologist. She has a daughter and friends who would miss her terribly and it’s certainly not worth giving up this early in the game.
You’re a wonderful friend and Jane’s very lucky to have you in her corner. Maybe between you and her daughter you’ll have some positive impact. 🙂
Keep me posted, ok?

I was misdiagnosed with a benign brain tumor but I wanted a 2nd opinion and asked to be referred to Mayo. I am eternally grateful for an accurate diagnosis (not the gioblastoma but at least it’s accurate) and the urgency and wholistic team approach at Mayo. Because of Mayo I have hope!

Susan,
I am so sorry to hear about your friend Jane's diagnosis.
Glioblastoma comes without warning on so many occasions as my wife, Deborah, experienced.
The options do depend on how the tumours have progressed and how tired Jane is from the symptoms. It could involve an operation, radiotherapy and/or chemotherapy.
The outcome for us was that, after eight months after the diagnosis, Deborah went to be with Jesus; but I must emphasise that every situation is different so it could be that Jane could live for many more years.
I hope that her prognosis and treatment goes well with a positive outcome.
Andrew

Hi @susan159, I just wanted to make sure you see this special reply from @andrew172. How is your friend doing?

Andrew, thank you for sharing your wife’s story with us. I’m
so very sorry that she passed away. It’s never easy losing our loved ones and I know the adjustment is so difficult.
How long ago was this? Do you have family and friends nearby for support?

Hi Lori,
Thank you for your lovely response.
Deborah went to be with Jesus on 15th December last year, so less than three months ago. I am so fortunate to be supported by family (both Deborah's and mine) and friends (including church and neighbours).
With something like glioblastoma, it was such a shock because often there are no symptoms - in fact, the only indication was that Deborah had problems with the laptop keyboard on the day before her diagnosis. She was a teacher with specialist knowledge of religious education and was the most influential person that I know, so it is part of the comfort that the legacy of her work continues.
It is also a privilege to be part of this community.
Andrew

Oh gosh, that’s still very recent, Andrew. Your wife sounds like such a wonderful woman. While I’m profoundly sorry for your loss, she has certainly left a positive impact on everyone whose lives and hearts she’s touched. That is an inspirational legacy.

I’m happy you’re part of this community too. We are very much a large family, always ready with a shoulder for support. I know you have focused, rightfully so, on the gliobastoma group. We have over 70+ other discussion groups in the forum as well. One in particular which might be helpful is the Loss & Grief support group, though it sounds like you have a really good supportive system around you already. But if the need arises, we’re here.

Again, thank you for sharing your wife’s story and don’t be a stranger, ok?

Andrew, I am so sorry for your loss. I'm sure you know that your love for her was probably a big part of Deborah's willingness to take on the battle as long as she did. I hate the thought of leaving this life, but I REALLY can't abide the thought of leaving my husband alone. (We've been married 43 years). I know I would want him to fight if our roles were reversed. I feel very blessed to have someone in my life who is encouraging me and standing right behind me in this ugly battle and I'm sure Deborah felt the same way. I do hope you are doing OK and that you are able to find some happiness and peace going forward. I'll keep you in my prayers. And please accept my deepest condolences. Sue

@susan159 the best things my friends did for me to help me cope with a category 3 brain tumor included:

Initial Diagnosis:
1.) Told me this whole thing was "just shitty" and that they could understand why I would be so angry.
2.) Organized and filed in a cabinet the over-load of treatment and education handouts that I received.
3.) Attended doctor appointments with me, kept a notebook with doctor, date, discussions, decisions, and action items.
4.) Helped me develop tips, tricks, and tools to tackle this new, huge mission for survival. New phone with shared calendar and phone apps such as Lumosity, mayo portal, Lyft.
5.) Assistance with applying for Social Security Disability Insurance (SSDI)
6.) Assistance applying for disabled public transportation from house to hospital, doctor appointments, therapy appointments, grocery store, wherever needed in your municipality.

Treatment:
1.) Set up meal train to deliver delicious and healthy meals for the whole family throughout treatment which can be many weeks long.
2.) Set up prayer train to call at a specific time each day for 3-5 minutes to bless and pray over them. It is not necessary for them to pray with you or feel like praying, just ask for consent to give them a blessing and if there is any specific thing they want or need so you can pray for it over them.
3.) Set up school train. If a child goes to school, set up a chain to have someone take them and bring them home. Buy trinkets and give them to the child when you take them home. Reassure them that there are good people in this world and that caring people are all around them.
4.) *** Reasure them that no matter what crazy, angry, unusual, out of the blue thing they feel or do, You will always be their friend and understand that you can't really understand what they are experiencing with and without drug side effects. Tell them you love them and although that may be hard to understand it is a gift God gives friends of those He loves.

Recovery: