Waiting for a biopsy—what questions should I ask?

danaobrien18

At the beginning of the year I had a MRI on my lower back which showed multiple areas of metastasis in my lumbar spine. I am awaiting further scans to make sure it’s not anywhere else, and I will also have a biopsy on my vertebrae to confirm. After 7 years NED, I am reeling. In addition, my MO retired last year and I’ve only seen the new oncologist once. I have no idea what questions to ask of him. I don’t know how to figure out if he’s the right guy to treat me. Any suggestions? What do I need to know at the outset?

MountainMia

I'm sorry I don't know anything about this. But I'm bumping it back to the top of the active list and hope someone else will see it and have some thoughts for you.

annadou

Hi Dana

I was in your exact place December /20

I went jumping along for my scans 11 years NED and got the news.....

I didn’t know what to ask the onc who was new to me just got reeled into the system. You get your pet scan and biopsy bloods heart ultrasound etc to set you up for your treatment plan

My first thought was to ask how long but I didn’t. I don’t need to know that. He explained the treatment , was optimistic seeing as it’s been a while since the first one and that obviously the Hormone therapy worked so I’m back on that plus some chemo by mouth. I did ask why not IV chemo but he said that would happen if and when it was needed Assured me I would do well walked me through the side effects. So I’m hearing that and take my first pill today

What can you ask? There is a protocol of treatment according to your biopsy results- it appeared to be the same in my country , Uk and USA so I’m assume I’m on the right road

I know I still have not processed all this yet. 40 days ago I was a normal person and now stage 4 what clusterfuck is this? I sometimes think I’m imagining it other times weepy and the why question

Anyway none of this answers your questions but I think you will know if he is the right onc for you instinctively Check out his experience with metastatic bc. Make a list of your concerns (I forgot mine at the time) Ask if you can record the appointment.

Take care maybe we can compare notes if you are up for it

Fondly

Ann

LivinLife

I am not able to respond either though want to send support. I'm glad annadou responded as the two of you can be helpful to each other. I cannot imagine all you are going through now.... I would add if you are able to take anyone with you or have them present by speaker phone during your appointment I'd encourage it. They could take notes, help remind you of questions if you get too caught up to ask, etc. I know that was a godsend to two of my sisters during their initial appointments and that was their first and only serious cancer diagnoses, vs. recurrences. You will have enough to focus on during the appointment and be quite anxious too I'm sure...

danaobrien18

Ann, thank you. It does sound like we are in similar situations! Thanks for walking me through it. I’m sure I will feel a little more settled after the biopsy and scans so I know exactly what’s happening. It is just a surreal place to be.

Livinlife, that’s a great suggestion. I have a friend who did this exact thing when her father was in cancer treatment and she recommended the same. Thank you

KBeee

Just sending you a big (((HUG))). Hoping you have a plan in place soon.

moth

Hi, welcome to the board but sorry you find yourself with this diagnosis. It is a lot to take on at the beginning & I don't know that there is any one way that we do it. everyone just sort of stumbles through in some way. Just like you might remember from early stage treatment though, once you have a plan in place, things seem more manageable ... not ncecessarily great but manageable.

I think wrt to the MO, I'd just consider whether this is a person that makes you feel like you can say anything. Not necessarily that they can do anything about everything you might say but if you feel reasonably comfortable, then I think it's a sign that you can be honest and that the MO is open.

You might want to ask if the MO, or their institution, is participating in any trials and whether they're willing to keep that as an option if you decide to go that route. Trials have been so useful to many of the people here.

Let us know what your scans show and how things are going. Hang in there - like so many stupid and hard things, it gets better even when you think it can't possibly.

annadou

Hey Dana

Just checking up on you to see what’s happening. Did you have the biopsy? Did you get any info about your treatment plan?

I do hope you are ok and managing to process what’s happening and that you have plenty of support

Fond thoughts

Ann

danaobrien1

Thank you all for your kindness and thoughtful words. I have been digesting all the information. Biopsy confirmed metastatic breast cancer, and scans showed it in my skull, many places on my spine from my neck to my lower back, ribs, pelvis and femur. It’s also in my liver and lung. I’m waiting on the detailed pathology—hormone and HER2 status. I’m suddenly in so much pain, not working, and all of it is so much to absorb. I mean, I just had an achy back in November and now my whole life is changed. I’m ready to start treatment! Let’s do this!

moth

danaobrien - oh no, I am sorry to hear this. What a horrible kick in the gut this must be, coming like this. When you're ready, come on over to the Stage IV forums, we're a warm and welcoming group and have threads for all of your mets sites.

hugs

cowgal

As moth said, come join us on the Stage IV forums. I think you will find an incredible amount of information and support.

AquaD

Hi Dana. I’m so sorry you are dealing with this, I feel ya! I had the same experience. Back pain for a year! I tried chiropractic, massages and physical therapy. Primary Dr’s wrote it off and prescribed pain cream and muscle relaxers. I even had a phone appt with my oncologist and he said it sounded like a muscle strain. Needless to say, he’s been fired! Finally (after 7 mos) primary referred to ortho and he’s the one who got the correct testing started. I too have Mets in skull, spine, ribs, pelvis and a couple small spots on liver. What I can tell you is once I started treatment,which for me also couldn’t start soon enough, the back & hip pain I was having for the last 9 mos went away. Hang in there and keep us posted.

LivinLife

Geeeez dana! I hope you put together a team you are comfortable with and trust. I agree on the Stage IV forums too - the folks on those forums will understand and be able to help with all you're going through now and dealing with going forward.... Thanks for checking back in given all you're dealing with....