questions from support givers perspective

concerned_carer

Hi,

I have a family member who has very recently been diagnosed with stage 3 breast cancer - i don't know the exact in's and out's in terms of location etc but i do know i will likely be their primary support person. My understanding so far is neoadjuvant chemo has been discussed with view to surgery though i will be getting a proper update later when we meet face to face. My main thinking is apart from the obvious role in listening, i should also be there to help think critically and help act as an advocate so there is a lot i feel needs to be asked.

I understand this is going to be very different depending on where in the world you are but things that seem important to know right now are:

-how open has your medical oncologist been about prognosis?

-how do you know if your oncologist and their team are any good? Is this just something you get a feel for? over how long? what if they are not?

-do people go for second opinions on treatment plans or just trust the team knows what they are doing? or to put another way what would prompt a second opinion on treatment if anyone has had one

-how much support psychologically should be expected along the way?

-how much education / advice have you had on treatment options / what should be expected?

-how much of a say have you had in treatment?

-anything else missing that i should be thinking about?

I feel like these are the important things that will need to be discussed at some point and want to prepare as much as i can.

Very grateful for any advice anyone can give, also fully respect everyone here for sharing their experiences and staying strong through tough times. Ive spent the past couple of days reading through peoples experiences and some of the stuff has made me feel very sad but also very inspired with how brave you guys are.

Traveltext

Being. Good care giver is important, but being your patient's advocate could mean the difference between successful treatment and continuing poor health. So, ask lots of questions, research the cancer stage and types thoroughly, ask for copies of all reports and store them in file, share information with others, and get on a site like this to learn from others.

how open has your medical oncologist been about prognosis?

Don't dwell on prognosis at this stage. These only have meaning once you are down the track with treatment.

-how do you know if your oncologist and their team are any good? Is this just something you get a feel for? over how long? what if they are not?

Choose wisely at the start. Research the team, ask questions here.

-do people go for second opinions on treatment plans or just trust the team knows what they are doing? or to put another way what would prompt a second opinion on treatment if anyone has had one

Second opinions are fine, especially is the diagnosis is complicated and the treatment plans have options.

-how much support psychologically should be expected along the way?

ThT depends on the patient.

-how much education / advice have you had on treatment options / what should be expected?

This is up to you, but learn as much as you can from reputable sources online.

-how much of a say have you had in treatment?

Not much.

-anything else missing that i should be thinking about?

Try to exude confidence so that your patient feels at ease with the decisions being made.

Good luck.

Moderators

Hi concerned_carer,

Welcome to the boards.

We're sorry to hear that one of your family members has been affected by this disease but it sounds like you are doing all you can to be the best support to them that you can.

You've asked some really important questions and answers here will be a great help to others who are in a similar situation.

Also, you may like to check out the forum here for caregivers in the link below:

Caregivers, Families, and Friends

Sending hugs to you and your family