Cancer Limbo

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lalalara
lalalara Member Posts: 19
edited June 2014 in Young With Breast Cancer

I was diagnosed on September 22 and had my partial mastectomy and lymph node removal on September 30th.  I've had one consultation with a medical oncologist on October 15th who said he couldn't do anything until the Oncotype test back  I was just told on Friday that they pre-certified me and now the test will take 10 to 14 days to come back.  My oncologist explicitly said that my surgeon (a general surgeon) should have ordered this, and someone at my surgeon's office said they had never heard of the test before.  Now I'm theoretically not going to start any continuing treatment until the second week of November.  Hearing conflicting information from the same hospital is making me very frustrated.

I'm almost recovered from my surgery and feel fine physically but my anxiety is getting worse and worse.  I just want to get this started and I'm being postponed because of bureacracy and misinformation.  This isn't necessarily instilling me with confidence in those who are supposed to "cure" me.

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  • hymil
    hymil Member Posts: 826
    edited October 2010

    So sorry you are going through all this, Lala. I read the thread title and thought it was a new exercise for the superfit, but actually you are having to bend over backwards and maybe jump through hoops too, just to get the treatment you deserve, it must be so frustrating to be left waiting like this. Waiting around is horrible anad very disempowering. Sounds like you are physicallly recovering very well from the surgery, and that is good to hear. Three weeks out from surgery I was waiting to start my radiotherapy and struggling because i thought i would never get my arms up high enough, but by the time it came round, the mobility was coming back adequately to let treatment proceed. My docs didn't seem concerned about what turned out to be a six week wait, said i needed to heal properly first and it does take time.

    I don't know what the pre-certifying means but it is certainly worrying if they haven't heard of the oncotype test! and disconcertingly honest to tell you so! On the plus side, your nodes are negative which is a really good thing, and you are hormone responsive so there is further treatment (AI's or tamoxifen etc) they can do if needed. I suppose they could maybe start that immediately, if there's no reason not to? Perhaps they are thinking it might not be necessary....

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  • Hattie
    Hattie Member Posts: 414
    edited October 2010

    i hear you!  waiting is the worst.  i learned (the hard way) to carry a binder with all my paperwork everywhere, and to make all follow up calls so everyone stayed on track and in the loop.  i  felt like a cat herder at times!  and didn't enjoy it, thought the patient role was enough but you have to take charge.  

    it does take a while to get things rolling, and you want to take appropriate action, so healing from surgery and getting info are the right next steps.   while you wait, try to take a cancervacation--if you have to wait, take a break.  it doesn't really change that fast, and your stats are really very favorable to your long term health.

    take care,

    ---hattie 

    hymil, you are too funny.   

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