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HER2 FISH Results timeline

kayellelaura
kayellelaura Member Posts: 5

I was diagnosed with IDC Grade3 HR/PR+ on Monday. I have been followed by a high risk clinic for four years due to a previous wide excision for PASH. My last mammogram in October of 2021 was BIRADS 0.
Tomorrow, I will go for an MRI and bloods for staging. I have been told that the HER2 FISH could take weeks due to staff shortages. How long did you wait to receive your HER2 FISH results? The lesion, as viewed by sonogram,is currently, 3.7 x 2.5 x 2.2 cm. Guessing that this will stage at IIAor IIB

Comments

  • maggie15
    maggie15 Member Posts: 812

    My FISH results took 10 days (a year and a half ago.) The test was done in house at my cancer center which also tests for other hospitals. Most of these assays are sent to outside labs so there is a wait. You generally start chemo six to eight weeks after surgery so that your body has time to heal. Even if it takes weeks to get the results you should have them in plenty of time to guide your treatment. Waiting is really hard, but try not to stress out too much about it. I hope your treatment goes well.

  • kayellelaura
    kayellelaura Member Posts: 5

    Hi @maggie15 - I am totally freaking out as there are so many staff shortages in our area (rural) and this is an interval cancer. My screens were completely clear last October. I have had to call around to get a surgery consult as our large teaching hospital is booking into October, due to staff shortages. This thing grew in the last 11 months- all of the research that I have read suggests that my prognosis is more likely to be worse based on the short interval of growth. Ugh. I feel totally on my own, calling doctors, ensuring FMLA is completed, sending out results, etc. I truly appreciate your reply.

  • maggie15
    maggie15 Member Posts: 812

    Hi kayellelaura - I sympathize because I, too, live in a rural area. I had to wait a month for a biopsy even though my mammogram was birads 4C and I was on an every six months imaging schedule. I ended up travelling to a larger hospital two and a half hours away for treatment. I asked my surgeon how my 3 cm tumor grew from nothing in six months. She was of the opinion that it had been there much longer but hadn't shown up on previous mammograms. Her reasoning made sense since I did have a callback for "architectural distortion" two and a half years before the tumor was found in the same location. In general, mammograms miss 12% of tumors and my local hospital has old equipment. Maybe your tumor was missed previously.

    I'm glad you have an appointment scheduled with a surgeon. Staff shortages in rural areas are a huge problem. When my PCP retired it took over a year to hire a replacement. It still takes forever to see a medical professional and you end up with whomever has an opening in their schedule.

    Dealing with a breast cancer diagnosis is like having a second job in addition to living with the extra mental stress. Best wishes going forward.

  • kaynotrealname
    kaynotrealname Member Posts: 353

    I had a 3.2 centimeter hormone positive tumor detected by mammogram and I asked my oncologist about the growth and no, chances are it didn't grow leaps and bounds in the one year from my last mammogram. Even at a grade 3 which my tumor is. Not the hormone positive ones at least with progesterone. They don't work that way. I mean I doubt it's been there for 9 years or anything but probably at least a few and because I had huge, dense breasts it was just missed. Even 3-d mammograms miss things quite frequently in dense breasts. And as long as it's below 5 centimeters the size doesn't effect your prognosis very much. Treatments have come along way and T1 and T2 tumors may have to be handled differently but prognosis wise I can't find anything that shows much of a difference and I've read entirely too much about the subject :) Also, as far as stage 2A or 2B with the old way of staging that will depend only on node involvement as long as your tumor stays in the T2 size range after pathology (over 2 centimeters but less than 5). With the prognosis way of staging you can even be at 1B with a T2 tumor. That's where I'm at. I will say though that at my fairly local cancer hospital where I'm being treated my FISH scores came in like 2 days and that was this summer. Nothing has seemed to take a inordinately long time except when I was waiting for the completion of my scan results after they first suspected I had cancer. That took three weeks from start to finish which I personally thought was ridiculous.

  • kayellelaura
    kayellelaura Member Posts: 5

    My HER2 Results came back today as positive. I have been reading all morning without a prognosis and without knowing the staging, I am at a loss. Those results should come today. Deeply shocked.

  • maggie15
    maggie15 Member Posts: 812

    Hi kayellelaura - Being HER2 positive means that you will most likely have chemo whatever your stage. The good thing is it is very effective against that type of tumor. Being hormone positive as well means there are many ways of attacking the cancer. Unfortunately you do not get definitive answers about treatment or prognosis until all the characteristics are known. It's hard not to imagine the worst case scenario but most people never get to that point. Best wishes and try to stay calm until you can talk to someone.


  • kaynotrealname
    kaynotrealname Member Posts: 353

    I know you are devastated but there are many studies now that seem to show that triple positive actually has the best prognosis of all. There are just so many ways to attack it and herceptin has been a complete game changer due to it's effectiveness. But if you can, and I know the difficulty of it since I seem to never be able to take my own advice, try to stop reading right now. You just don't know enough specifics to wrap your head around anything and you'll need to wait to talk to a doctor.