1-month delay in treatment cause for concern (PR- ER- HER2+)?

berkeleydaughter
berkeleydaughter Member Posts: 4
edited April 2021 in HER2+ (Positive) Breast Cancer

Hi everyone, My mom was diagnosed with HER2 positive, Stage 3 breast cancer (6+ cm mass in breast as well as cancer in the axillary and possibly cervical nodes) almost a month ago. I am really worried that this is too long of a wait. For reasons I won't go into, we switched her insurance at the start of this month and she is still waiting to get in with an oncologist, which means she likely won't be able to start neoadjuvant chemo for another couple weeks.

Shortly after her diagnosis, her tumor team told us that she needed to undergo a mastectomy and lumpectomy first before undergoing chemo. The day before surgery, her surgeon consulted with a diff oncologist who advised that she needed to undergo chemo first. So we lost over 2 weeks waiting for surgery to go and now we're being delayed because no oncologist can see her before next week. I also can't get anyone on the phone to reassure us that the additional delay will not be a problem.

Has anyone been in a similar situation who can offer reassurances or suggestions?

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  • jhl
    jhl Member Posts: 333
    edited April 2021

    Hello,

    I had to delay my breast cancer surgery for several weeks to get a diagnosis & treatment for a more urgent medical problem. I was told my cancer had likely been there for several years so the delay was not significant. Given the size and the fact there are some positive nodes, your mom's cancer has probably been there for some time, just like mine. At this point, there is nothing for her to do other than wait. To help facilitate her appointment with her new MO, does she have all her records, scans & pathologies? Getting that information together will help her new MO get up to speed with her diagnosis. How old is your mom & is she computer literate? If so, you might want to get her signed up here.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited April 2021

    I guess the reassurance I can offer is that if she is seeing the oncologist next week and they think it is urgent, there is no reason she would have to wait weeks to start chemo.

    I agree with jhi that the focus should be on making sure you have all her records and scans provided to the new oncologist and that it's someone you have confidence in. If it's something she is interested in, she can go ahead and set up a second opinion now as well to not waste any time.

    Her insurance might also have some kind of nurse navigator that can help her with this, and possibly help with finding a sooner appointment also.

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  • Melbo
    Melbo Member Posts: 346
    edited April 2021

    I hate to be a Debbie downer about this — but HER2 positive cancers are generally considered fast growing and aggressive. I was told 4-6 weeks was the optimal place to start chemo after diagnosis. The good news is that once you see the oncologist they should be able to get things moving along faster.

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  • berkeleydaughter
    berkeleydaughter Member Posts: 4
    edited April 2021

    Thank you, everyone for the posts. The good news is the new team reviewed my mom's file this morning and scheduled her for a port placement in a couple of days. So hopefully, she'll be able to start chemo within a couple days after meeting her new oncologist next week.

    @jhl My mom is not computer literate, which is unfortunate because I've learned so much and found so much comfort here. I have been sharing some of the stories of the brave women on here with her, which have helped ease her distress.

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