Question to ask at result visit....

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NicoleRod
NicoleRod Member Posts: 2,906
edited April 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi.

Tomorrow I get the official results of the liver biopsy. (even though we were already told unofficially its cancer) My question is can you ladies tell me some questions barring no surprises that I should ask about the results? All I have is:

1. What grade is it? Is it fast growing?

2. Has my HER2 status changed?

3. What is your treatment plan and why?

4. I am going to also ask about Cryoblation , Nano knife and Radiofrequency ablation (RFA

***EDITED to CHANGE #4 from asking about survival rates****

Tell me if these are bad/good or anything you can add please do.

TIA

Nicole

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  • illimae
    illimae Member Posts: 5,710
    edited April 2019

    No good MO will answer #4, they can’t. Instead you may want to ask what you can do to improve your odds of success.

    Tough appointment ahead for sure but please know that many good years are still possible. I’ve seen a lot of hope here, good luck!

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited April 2019

    Thank you for your reply. I had a feeling about #4.lol. Thanks for the positive words...I have been on such a roller coaster of emotions and fear and at the same time TRYING so hard not to be stressed..but I am. I bought CBD oil to help me sleep but its from hemp and did nothing. So we may try the kind that has a little or very very low dose of THC in it...I hope it helps me to relax and sleep.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2019

    How many tumors are there? Please refer me to an interventional radiologist who can talk to me about whether I am a candidate for local treatment. (If you only have one or two locally treatable mets, you could be oligometastatic and be treated with curative intent.)

    When will my next scan be? What kind of scan will it be and why? (MRI, PET-CT, CT with contrast)

    Who do I contact for help with any side effects, questions, concerns about my treatment? May I call or email?

    What supportive care services are available? (Psychologist, social worker, support group, yoga classes, etc.).

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited April 2019

    Wow Shetlandpony THANK YOU!!! as of the CT Biopsy I had 2 spots indicative of Oligometastic unless that has changed I am glad to know that. I will definitely as about the Interventional Radiologist I saw a bunch on Columbia and MSK website I was googling them and surgeons just to see who had good reviews incase they do agree to recommend one.

    I do have another question.... I don't hear much about surgical removal?? Is that bad or not common? I do know that the radiologist told me my 2 spots were in operable areas. I read something on line that said operating sometimes can cause it to spread? Im just wondering if that's not common.

    I have to amend my original post to add in that I am going to also ask about Cryoblation , Nano knife and Radiofrequency ablation (RFA) is that good?

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  • JFL
    JFL Member Posts: 1,947
    edited April 2019

    Nicole, yes, some people do get liver resection (removal of a portion of the liver with curative intent). There are a few on these boards that have had it. You should definitely ask whether your biopsy specimen will be sent for genetic paneling (through Foundation One, Caris or another reputable third party company). The results of one of those tests can qualify you for targeted treatments now or down the road.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2019

    Yes, I forgot to include surgery when I was thinking of local treatments like the three you mention, NIcole. The expert opinions about which ones could be right for you will be important. I think in another post you said you were consulting at a NCCN center? You’ll want to hear about all your options, even if your local hospital does not offer them. JFL’s question about genomic testing is a great one! My onc ordered F1 as soon as I was diagnosed with mets.

    You’re doing great. Being an informed, involved patient will help you do well.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited April 2019

    Sorry I am not up on the abbreviations - NCCN? I will getting the final results today at City of Hope here in CA so I will see the MO for that and get my first opinion. Then I will be going to MSK and Columbia University and seeing MO's there for a 2nd and 3rd. opinion. I am going to be picking between the 2 in NY because my husband wants us to do treatment where my family is.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2019

    You’re there, Nicole. NCCN=National Comprehensive Cancer Network. They set the standards and write the guidelines in the USA. City of Hope is one. So is Memorial Sloan Kettering. See nccn.org for the list.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2019

    There will be the first line treatment(s), and if they include surgery, radiation therapy, or chemo staying with your family may be right for you. But then there will be the ongoing maintenance, and you will have to figure out how often you are up for travel, and how far you want to go. Some people travel, some take a plan to their local onc. So maybe add this to your question list: How would you recommend I use your services/expertise if my home is elsewhere?

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  • pajim
    pajim Member Posts: 2,785
    edited April 2019

    I would modify your number 3 to "what are your suggested treatment options? Which one would you recommend and why?" You don't want them to give you only one choice. YOU want to choose.

    And if they suggest hard-line chemo I'd ask a few other questions. You're ER+. First line systemic treatment, unless you're in some kind of danger, should be anti-hormonals.

    But your 2nd and 3rd opinions should help. I hope the scan results turn out as you expect.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited April 2019

    Pajim...what did you mean "hope the scan results turn out as you expect"? I am confused the scans found the cancer in the liver.

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  • pajim
    pajim Member Posts: 2,785
    edited April 2019

    Apologies, My brain must have fritzed. (It does that a lot). I thought you were still waiting for some of the results.

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