Results tomorrow, trying to prepare my questions

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LaurenInPHX
LaurenInPHX Member Posts: 165
edited September 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello all,

I have an appointment tomorrow to get biopsy results and I want to have some questions ready because I'm pretty sure I won't have my full faculties if the news is bad. I fully expect bad news, so I won't be surprised, but I think when she actually says the words, I will probably lose it.  I think it's bad because my tumor markers went from 20 to 60 to 83 over the last year and I had "worrisome" lymph nodes in my neck, hence the biopsy. I can explain away one or the other, but not both together, so I'm preparing myself. Next step would be neck surgery. As of June it was not anywhere below my neck per CT scans and bone scan (it was hiding in my neck but we didn't check there.)

I was diagnosed Stage IIIA/ER+ PR+ HER2- in 2012, so I almost made it 7 years. I've been on anastrozole for the last 4 years so I believe my next round (assuming the cancer has not changed its stripes) is Ibrance/Faslodex. I was hoping for Ibrance/Letrozole because it seems like there are a lot of women on this board who are doing really well on it. 

I don't really know what questions to prepare for tomorrow. I wish the doctor would trust me with my dang results - they're my results. Keeping them from me should not be legal. 

I digress.

Any tips for tomorrow? Any hope for faslodex long term results? 

Thank you, Lauren

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited September 2019

    bump back to the top

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited September 2019

    LaureninPHX, I;m sorry you have to even deal with this. I'm praying for strength for you tomorrow and hoping for better news than you are expecting. It isn't fair that they schedule an appt to go over biopsy results after they already have you on the phone. I mean what do they expect us to think? and having to wait over a weekend is just cruel. I have not had a recurrence yet but I was told over the phone that it was cancer on my initial diagnosis. It sucked getting that news (especially since I was at work) but I was glad that my GYN told me as it allowed me to prepare (and panic) a little before my BS consult. Going through this again you should have at least been afforded a conversation with the doctor. It may not be their practice but I would mention how unfair it is to you. I wish you the best tomorrow and hope you can get some rest tonight.

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  • BevJen
    BevJen Member Posts: 2,523
    edited September 2019

    Lauren,

    I was on letrozole for 13 years, and so when I had a recurrence, I was put on Ibrance/faslodex. Faslodex is a very easy treatment, so do not be fearful of it. It's two quick shots in the butt, once a month, and although I have hot flashes, other than that, it's been very easy.

    One question I would ask my doctor is if they can do a genomic test on you -- Foundation One, Claris, and there are others. If they don't have tissue from the biopsy to do that, they can do it via blood test, I believe. It provided some degree of comfort to me because it showed that there were lots of drugs that we could try with me due to changes in my original breast cancer.

    Good luck!

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  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited September 2019

    Thank you all so much for your responses. 

    Mountain Mia - thanks for bumping. I appreciate that very much.

    Legomaster - (there's a story behind that name, I bet!) Thank you for your kind words. Better than what I'm expecting would be awesome. :) 

    BevJen - it looks like you and I have a very similar history. I will definitely ask about genomic testing. She mentioned something about additional testing last time, but I was too freaked out about my rising tumor markers to absorb anything she said. I will be bringing a notepad with me this time so hopefully I'll do some automatic writing I can read later, lol. I've read it here a number of times when women will say, "Gee, just last week I was running three miles a day, working, playing with my kids, and now I can't get out of bed!"  I have a very, VERY simple life (no husband, no kids, work from home, not even a dog...) but I still can't imagine it changing that fast because of stupid cancer and side effects. Thank you for a ray of hope about Faslodex. 

    I'll update the thread when I get home and make all my calls. Yuck. (or maybe Yay!)


     

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  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited September 2019

    LaureninPHX, ask to record the visit on your phone. That way you can listen to it when you’re not in such an anxious state. This can generate good questions that you can ask after your appt via phone call or patient portal. I always have to remind myself that while I am totally concerned about my condition, the doc has many patients.

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  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited September 2019

    Oh wow, thank you Yogatyme. Great idea!

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2019

    Hoping you do not need these questions:

    Can we do Foundation One or some other type of genetic testing?

    Will you do a PET scan?

    Will I require surgery?

    Will I require radiation? When can I start the new medication?

    What side effects can I expect?

    How, and how often will I be monitored?

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  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited September 2019

    Thank you, KBee...that's a great list. 

    I will use these as soon as my damn results are in. :|

    I went all the way to the office, waited 30 minutes past appt time, and they still didn't have the results. She will call me as soon as they get them and they cancelled my appointment, so no charge, and they were very apologetic, but what a lot of wasted emotion and energy. 

    At least she's not making me come in on another day. She agreed to a phone consult, so small favors. There is a chance I'll get them in the portal first which would be ideal. 

    Fingers crossed and thanks for the support! 

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  • obsolete
    obsolete Member Posts: 466
    edited September 2019

    Hello Lauren, so very sorry that you have reasons to be very troubled about your situation, so positive thoughts are sent your way.

    To expand upon others excellent feedback, please consider a liquid biopsy and Rational Therapeutics or Foundation One for genomic testing. Possible mutations include ESR1 on estrogen receptors, since you've been on AI treatment.

    It's also sometimes helpful to know your tumor's molecular subtype (Luminal A vs Luminal B)

    As you already know, inflammation elsewhere in your body can contribute to enlarged, matted or shotty nodes which may not harbor malignancies sometimes.

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  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited September 2019

    Thank you obsolete...I've never heard of most of that so thank you. I'll definitely ask and do some research. 

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  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited September 2019

    As suspected, it is back. I'm not surprised, so that's good. A little disappointed, I guess, but not blindsided. 

    It changed from ER+ PR+ HER2- to ER+ PR- HER2-.  I guess better than triple negative. She said that wasn't unusual. I don't have the path report yet, but the KI67 was high at 30-50% - that scares the shit out of me frankly, but my first cancer was high too. There was no grading, so not sure about that. 

    She will send it out for next gene sequencing - I didn't have time to ask her about any of that, I was taking notes and as expected, couldn't really think well enough to ask questions.  

    She wants me to have a PET scan before we do the surgery. If there are more spots, then no surgery. If not, then remove the neck nodes. 

    She said she expects a good response to Kisquali/Faslodex combination and we can be hopeful for a long period before progression.

    I have done zero research on that combination, although I haven't seen Kisquali mentioned too much around here. Will have to dig in and see what I can find. 

    Thank you all for your support. I guess I'll be seeing a lot more of you around here - I look forward to getting to know you all. 


    Lauren

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  • Lexica
    Lexica Member Posts: 259
    edited September 2019

    Lauren, sorry to hear that news. Your MO seems to have a good treatment plan set out for you. Hoping it will kick this to the side for a long time.

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  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited September 2019

    Thank you Lexica. I'm hopeful as well. :)

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2019

    I am sorry to hear this news. Hoping the PET scan shows no other areas. Thinking of you.

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