need advice for carer from patients perspective

concerned_carer
concerned_carer Member Posts: 1
in Breast Cancer #1

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.

Comments

  • Elaine_wi
    Elaine_wi Member Posts: 124 Member
    #2
    Advice

    I received excellent support from a mentor from an organization called ABCD (after breast cancer diagnosos). Here's their website: https://www.abcdbreastcancersupport.org/

    They will match your family member up with someone who has gone through a simlar situation. I got a second opinion and more imaging done from a different hospital system after my diagnosis. I liked the second team much better. They were more compassionate and more thorough.

    I did a lot of research on the internet about my cancer. I do not leave my healthcare decisions up to my doctors. I want to know exactly what is going on within my body. After educating myself, I felt confident proceeding with my treatment options.

    I needed a lot of emotional support along the way. I had a lot of ups and downs. Sometimes I just needed someone to listen without giving advice. Sometimes I just needed someone to hold me while I cried.

    I'm very glad you found this forum. Keep us posted. There a many people here who really understand. My prayers are with you and your family member. Just take one day at a time.

  • Apaugh
    Apaugh Member Posts: 850 Member
    #3
    Prayers going up for you and your family member.

    First of all, it is wonderful you have jumped in and decided to be a help to your family member get through this battle.  There is no question off limits, someone on here will answer it the best they can.  While we are all different in our journeys with this horrid disease, we are also simular and bounce things off of ea. other all the time and we even have days we gripe.  I KNOW, you can do that here!  We are here because we care. 

    I think it is always best to get a second opinion with something as serious as this.  All that you are looking for confirmation in the diagnosis and treatment plan.  I listened to my doc and gathered my info, got copies of my test results and I went to another doc and said, Hey, what is your opinion on this?  He concurred and it gave me comfort knowing this.   

    I know at times, I questioned my doc and we had discussions and I told him many times, I dont understand can you break that down more and he did.  And this site gives so much info and there are other sites to go to as well.  Some are way out in the rafters and you have to take it all with a grain of salt.  There were times when I said no doc I cant take this and he came up with something else or he said, well this is what I think is best, give it a try.  Sometimes, it did not work and so we tried something else.  There will be lots of ups and downs and many times you question your choice.  Just dont stop fighting and beleive me, it is one hell of a fight. 

    Your family member needs as many people in their corner as possible.  Compassion, understanding, patience will be needed and appriciated.  It is so hard, frustrating, and scary and it is not fair at all!  You must be a fighter and sometimes that can be a walk in the park and other times it takes every ounce of energy just to get out of the bed.  But you gotta do it and having someone there to encourage you, to let you gripe, let you cry is a blessing.

    There is a section here that is devoted to the caregivers, because along this journey you yourself will need support and talking with other caregivers that know what your feeling is just as important.  I do hope you look at both this site and that one. 

    Keeping you and your family member in my prayers for positive outcomes,

    Hugs,

    Annie

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