First onco appointment...PET scan?

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Annaspanna
Annaspanna Member Posts: 8

Hi all,  I'm newly diagnosed with TNBC.

I have my first onco appointment in a fortnight (after axillary node surgery).  What questions should I be asking my onco at the first appointment?  My tumor was 1.1cm with, at this stage, one node affected. 

My CT Body Scan and Bone Density scan were both clear a fortnight ago.

I'm guessing that my chemo will start in about  3 weeks time.  Is it warranted to request a PET scan prior to chemo, to determine a 'base line'?  Would the onco order this as a matter of course?  Is it possible to then have another PET scan during chemo to determine if there are any changes and compare the two, to ascertain if the chemo is working? 

This is all new for me, having been diagnosed 2.5 weeks ago....I'm trying to get my head around it all and be prepared for my appointment. 

Thank you all for your support and advice.    


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  • Deanne
    Deanne Member Posts: 2,163
    edited March 2018
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    Hi @Annaspanna,
    From what I understand of your situation, your tumor has been removed and they found some cells in the lymph node removed so you will be having further lymph node surgery.

    Your CT scan and bone scan were clear, which is great news. So therefore your chemo will be like extra insurance against the possibility that any microscopic cells are lurking around somewhere. These cells are not able to be seen even on a PET scan unfortunately.

    In this situation (which is the situation most of us who have chemo after surgery are in) there would be no need to have further scans. Your cancer has been removed and the chemo is just to kill off any stray cells that may have escaped into your body. Chemo is very effective on these tiny cells, especially TNBC ones.

    I hope that I have explained this so you can make sense of it. I am sure that the oncologist will be able to explain things very clearly to you. Do you have your ‘My Journey’ kit from BCNA? I read a lot in there that helped me to have questions ready for my doctors.

    Wishing you all the best for your lymph node surgery and then your oncologist visit. Take care. Deanne xxx
  • Zoffiel
    Zoffiel Member Posts: 3,372
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    PET are usually only recommended when there is good reason to suspect there are metastatic cells lurking somewhere. They can be very expensive if  you don't meet the subsidy criteria (don't ask me what those are now) I had one following my recurrence as I had 10 compromised nodes but nothing was showing on the CT and there was concern about some lumpy bits in my neck. 
  • PatsyN
    PatsyN Member Posts: 296
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    I had a PET scan before chemotherapy for my inoperable tumours (clear), an MRI before chemo as well and then another MRI three weeks into chemo to ascertain if it was working (it was).
    I've had no CT scans or bone density scans on order but I do have a more targeted CT scan to check my organs a few days after radiation finishes. Still no one has mentioned a bone density scan, or is that just a given...
  • Annaspanna
    Annaspanna Member Posts: 8
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    <3 Thank you for replying to my post - all the information you've given me has been very helpful. 
  • smokie08
    smokie08 Member Posts: 157
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    Hi Annaspanna, Just wondering how you are going? How did it go with your oncologist?  Have you got some idea of when or if chemo is going to start?  
    Take care  :)
  • Annaspanna
    Annaspanna Member Posts: 8
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      Hi smokie08...my initial consult with the oncologist was very good.  He was patient, kind, listened to me, armed with tissues, explained everything and I really felt comfortable with him.  The consult went for one hour!  Don't ask what it cost!

    He explained that after the pathology of the tumour, my cancer was dividing quickly and aggressively.  Thankfully the tumour was removed with an infected node on 1st March... further surgery on my lymph nodes showed no other infections.....so in my mind, my cancer has been removed back on 1st March.  Due to the aggressive nature of the cancer, and the possibility of stray cells lurking around, my oncologist said he was going to 'hit me with chemo'....so his plan is for AC fortnightly (4 doses), then a combination of taxotere/carbo/platinum (I think that's right) every third week after AC. 

    I am still debating the DMX, although my surgeon doesn't feel it's medically warranted.  However, my surgeon has said he will operate if it helps ease my mind.  He said to consider it all during the time of chemo. 

    I'm hoping for genetic testing at some stage, to ascertain if I have the BRAC 1 & 2 gene....but at this time, my oncologist indicated I didn't meet medicare point system to qualify for rebates  - apparently I scored 10 points, but need 14 points to be able to claim rebates....so that's also something I will look into further as the months go by. 

    So that's where I am at the moment....still off work, and plan to take Income Protection Insurance during my treatment to give it all my best shot.  Hope you are doing well also.....:)

  • Annaspanna
    Annaspanna Member Posts: 8
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      Forgot to mention....chemo starts on 13th April......Friday the 13th!!!  :O

    My hubby says that's a lucky omen!!!

  • Sister
    Sister Member Posts: 4,960
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    Good luck @Annaspanna - good news that the surgeon thinks the cancer is gone.
  • Annaspanna
    Annaspanna Member Posts: 8
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    How are you going?  How far into treatment are you???