Questions to ask

bettysgirl

I go to my onco this week following up on the bone biopsy of my hip that confirmed the Mets. Still no idea if the spot on the liver is it not. My mind is going 1000 directions. My request of you ladies is simply this: what are the questions that I should focus on for this appointment? My husband will be with me but I seem to almost always lose my brain when I there and my mind doesn't come up with the 1000 questions that have been in my head. Given the fact that she is a straight shooter, not overly"chatty" just to the point, what should I focus on? Thanks!

Elderberry

bettysgirl: you are so overwhelmed right now your brain has just gone somewhere else. Make yourself a list from your head's questions - even if they seem silly or dumb. Nothing you think is silly or dumb. and have your husband make notes when you get there. I had a girlfriend with me because I figured my DH would get overwhelmed and his brain and emotions would go off into space. All I heard was "mets' and "blah, blah, blah" and treatments "blah, blah blah until they stop working" From your profile it appears your are not Triple Negative and that is a good thing.

I am sure others will chime in.

bettysgirl

The path report from the bone biopsy indicates er/pr + HER2- just like my original dx. It says something about the ER/ PR being weak(?) With an existing heart condition that was not present in my first dx it seems to complicate matters. Since my first cancer I have had a heart attack with stent, a DVT, and have congestive heart failure. I also have developed a mitral valve leak/ regurge and was being monitored by the structural heart clinic for the mitral clip. That's out now. It's not clear to me what direction she will want to go with the liver spot.

Esther01

Morning Bettysgirl,

Elderberry, that's so funny and wise. My own brain tends to do what your husband's does, so I have to type my questions and bring the sheet with me. I still forget things on my sheet, even at that!

Bettysgirl, I'm so glad your husband is going with you.

If it were me, if they recommend chemo (again), I would ask, what is the % success it is expected to have? You've been through it and know how tough chemo is. If it's going to bring a hit to your immune system without yielding a significantly high % benefit, there may be better options that don't involve chemo.

I would also ask if they have a connection or referral to any trusted integrative treatment modalities that you might add this time around, to complement your care. Some large centers do refer (I'm thinking of one in Seattle) but many will have no idea and will discourage you from doing anything outside of their own care center.

Blessings,

Esther

Esther01

Oops! Sorry, I didn't realize I wasn't supposed to post in this forum. Please forgive me for not seeing that

I know you'll get very helpful advice and I'm praying for you!

Blessings,Esther

exbrnxgrl

“Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.“

Thank you for respecting the mods request, Esther. Stage IV is a very different ball of wax than lower stages.

exbrnxgrl

bettysgirl,

Elderberry had a great suggestion. Start writing down your questions as soon as they pop into your head. You can also ask your mo permission to let you record the visit. I found this very helpful as it allowed me to review all the answers/information I was given because it can hard to absorb everything in the moment. The information you receive may likely lead to more questions after your visit so write those down too and follow up with emails to your doc as needed.

Everything will not be clear, or remembered, after this first visit. The learning curve with mbc can be steep so don’t be upset if some things are still unclear. It sounds cliche but take it one day at a time. Take care.

bettysgirl

Thanks for the response. I am going to begin a list today and add to it as it comes.

jensgotthis

Hi Betty,

I would want her to give you more detail on your receptor status. If you are weakly Er/Pr+ and Her2-, will she first try an antihormonal with a CDK 4/6 inhibitor which has become the first line for MBC. This would mean a combo like Letrozole + Ibrance (there are a couple of other meds in this group). Or, is she going to treat as though you are triple negative?

I would also hope to hear a strong plan for that liver met (if it’s a met). Have you had a pet scan? Does she see an option for localized treatment for that spot? Is it worth doing a biopsy on that spot to confirm it has the same receptors? It probably does.

And, I’d hope to know from the appointment of this was the MO I wanted to partner with or not. Don’t let her leave until your questions are answered.