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The wait is agonizing


Hi all. My whole body and brain is so anxious, and I know so many of you understand. I found out 3 weeks ago that I have another recurrence, so this is my third diagnosis. You would think since I've already been through this initial stage twice now I would roll with it better, but it's so so hard to wait without knowing what's coming.

I was diagnosed in 2016 with ++- IDC and had mastectomy/rads/tamox. Small recurrence on my implant in one of the original tumor spots in 2019 and now small recurrence 2024 near my armpit but not a lymph node. I had a pet scan last Friday, and the imaging center said the report would be ready on Monday (yesterday). I contacted my MO office this morning about seeing the report, and I was told to wait for my next in-person appt. That is not for 8 more days because I'm also having an MRI next week, and he wants to wait until that's also done. I know people often wait this long for results, but I'm really struggling :(. Of course I'm assuming the worst. It feels much scarier than waiting for biopsy results. Do you all have to wait for scan results in person too, or have you gotten the reports before your doctor explains them? I can read medical jargon, so I just want my report :(


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834

    It’s the worst isn’t it! In my 12 years on bco, I have seen members state that results pop up quickly in their patient portal (even before they’ve seen their mo) while other MO’s appear to not release results until they have met with the patients. My facility posts everything as soon as it’s available. I have gotten good at reading medical jargon too though I usually have some questions when we actually meet. I guess this is a decision made by each doctor or perhaps their medical group/clinic. BTW, I have always gotten my results within 24 hours in the patient portal. Could you call your mo and request that he/she release them to you? I don’t see how they could legally withhold them but I could be wrong. Take care

  • kat104_again
    kat104_again Member Posts: 10

    Thank you for responding @exbrnxgrl . When the nurse told me that the doctors generally go over scans during appts, I asked that the report be released as soon as possible before then. I will call in a few days if it hasn't come through. I just have no idea if I'm having more surgery, what re-irradiation will look like (and when?), and even chemo isn't a definite no until another test comes in. It feels like it's taking forever with too many open questions, and so I needed to vent earlier while I was at work pretending like everything is normal. Thank you for hearing me.

  • spookiesmom
    spookiesmom Member Posts: 8,176

    I am in my third diagnosis too. Mine was discovered because my CA 2729 was climbing he sent me for a pet scan and my bones lit up. It’s not in tissues, so there will be for me no radiation or surgery unless there is pain he’s got me on a new pill just released in November Called TRUQAP it’s supposed to target the mutation I just started it Monday so I can’t say if there’s any side effects but when I got the pills from the specialty pharmacy it came with Imodium so that’s my experience. I hope yours is as easy you get your test results as soon as you can .