What do I ask oncologist re: brain tumor? What would YOU do?

Nurses General Nursing

Published

I have been working as a Patient Support Tech for two years and am in nursing school. This last week a friend of ours was diagnosed with glioblastoma bilaterally at the thalamus, already a high grade/stage. They know this is deadly. However, they are consulting with a Neuro-Oncologist this week to discuss the only treatment available that they know of -- radiation and chemo. She asked me to come to the appt since I at least have some more understanding of the language and topics involved in this meeting.

My question is - what would YOU ask a Neuro-Oncologist about potential treatments? This is at a research center so my personal concern is that they would encourage some treatments in hopes of making an advance in this terrible disease, but at the cost of whatever little time they have left.

My friend is a straight-shooter type of gal - she wants to know the real deal. Doesn't want false hope or hope of extending his life if the quality will be horrendous anyway. She doesn't want an extra week b/c of treatment -- She needs to know what the side effects are and what type of extension they are hoping for by doing it.

I would love to hear your opinions of what to ask and how you would weigh the benefits/drawbacks of treatment or no treatment.

Thanks,

gillian

himilayaneyes

493 Posts

Specializes in Critical Care/Coronary Care Unit,.

Ask about benefits vs. risks. What exactly would the treatment entail? How often? What's the survival rate for the disease with treatment? What quality of life would she have? Ask your friend if she has a living will....if not, she needs to get one asap. At the end of the day, support your friend in whatever decision she makes regarding her care.

allnurses Guide

nursel56

7,078 Posts

Specializes in Peds/outpatient FP,derm,allergy/private duty.

The treatment of a brain tumor is a steep learning curve for the patient and the patient's family. Heck it's hard for onc nurses to know every single option for every single tumor and there are many! What I would do is facilitate the family's ability to grasp the large and overwhelming amount of info about scans, radiation, possible debulking surgery, etc.

The neuro-oncologist normally will be the supplier of the details and options, and you could act as sort of a scribe for them and note any questions they have that aren't answered or notice if their body language seems to indicate they are overwhelmed and lost. You could ask them before the appointment what their list of questions is or areas of unclear understanding. Honestly just being a person who has willing hands to help with phone calls and the like is really comforting to people. This is some scary, scary stuff. Best wishes to you!

Most oncology centers have a Nurse Practitioner or liaison for the patients to help them navigate the baffling array of new things they must assimilate.

Home Health Columnist / Guide

NRSKarenRN, BSN, RN

10 Articles; 18,306 Posts

Specializes in Vents, Telemetry, Home Care, Home infusion.

nerdtonurse?, BSN, RN

1 Article; 2,043 Posts

Specializes in ICU, Telemetry.

To be blunt, I'd ask what options gave me the best quality of life for the longest time; don't keep me here for the sake of one more week if I'm sick and miserable. I'd focus on the quality of life side of the house, and that means asking if the patient accepts treatment A, what does the record show? It's scary when you look at the statistics about how little some treatments actually give a person with certain types of cancer. My dad has lung cancer; luckily, it's the kind treated with surgery and careful watching for mets. Had he had the small cell variety, my research showed every trick in the book only bought the patient an average of 10 extra days if they had a non-surgical case, and they spent that week sick from chemo. So that's what I'd look at.

You and your friend will be in my prayers. Treatment isn't a sprint, it's a marathon...there's a lot of hurry up and wait. So take a book and a bucket of patience.

MCYICURN

12 Posts

Specializes in ICU.

First of all ,my thoughts and prayers go out to your friends. When I was reading your post something stood out:

"My friend is a straight-shooter type of gal - she wants to know the real deal. Doesn't want false hope or hope of extending his life if the quality will be horrendous anyway."

I was just curious what "he" wanted. Sometimes, people will go along with different treatments to help their loved ones cope.

jjensen

149 Posts

Specializes in Cardiac, Hospice, Float pool, Med/Peds.

My first husband died of this brain tumor 6 years ago; he was 30... Our neuro-oncologist was wonderful. We understood that all treatments were to prolong his life; not cure it... He did debulking surgery twice with chemo waffers the last time and also did radiation treatments for about three months... He tried oral chemo and did this until he got too sick to enjoy what time he had left...

Then we went the hospice route and he lived 6 more months being able to eat, sleep and make memories with me and our children.

I am sorry for the diagnosis and it is going to be a hard long road of many MRI's to see how the tumor has advanced or if it did not grow the past month...

That was the hardest, longest and saddest 18 months of my life... I would not have traded them for anything, however. Once you know that you are going to die; you get a different look on life.

I now work with cancer patients and have lots to offer them and use my personal experience with my husband dying...

Good luck and remember to "Live each day like you were dying..."

leslie :-D

11,191 Posts

i would ask your friend, if she favors quality over quantity of life.

her personal feelings will greatly influence her course of treatment.

leslie

RNMarykay

32 Posts

Thanks everyone, I appreciate the thoughts and good wishes.

MCYICURN - The situation is peculiar in terms of what the actual patient wants to do. Sadly, either from the ICP or the surgery to put in the shunt or biopsy his short term memory has a severe deficit. For example, we were able to get him out to his teenage son's last football game of the season two days ago, but when I asked him about it this morning he does not remember that he went to the game. He doesn't remember from day to day that he has a brain tumor at all or completely understand what is happening though he seems to understand he is not well. So his wishes in this situation are somewhat unclear, but his wife thought that they should have a full understanding of the options before proceeding with what she believes he would want based on their 18 years together thus far.

I appreciate everyone's help and insight. I have the feeling this will be quite a road to travel.

Gillian

MCYICURN

12 Posts

Specializes in ICU.
Thanks everyone, I appreciate the thoughts and good wishes.

MCYICURN - The situation is peculiar in terms of what the actual patient wants to do. Sadly, either from the ICP or the surgery to put in the shunt or biopsy his short term memory has a severe deficit. For example, we were able to get him out to his teenage son's last football game of the season two days ago, but when I asked him about it this morning he does not remember that he went to the game. He doesn't remember from day to day that he has a brain tumor at all or completely understand what is happening though he seems to understand he is not well. So his wishes in this situation are somewhat unclear, but his wife thought that they should have a full understanding of the options before proceeding with what she believes he would want based on their 18 years together thus far.

I appreciate everyone's help and insight. I have the feeling this will be quite a road to travel.

Gillian

This makes sense. So sad, they are blessed to have you as a friend.

+ Add a Comment