What scans do you get ?

trigeek
trigeek Member Posts: 916
edited June 2014 in ILC (Invasive Lobular Carcinoma)

So it is almost 2 years since my surgery and my oncologist did a pet scan at the end of the 1st year only because I asked for it due to suspicious lookiing mass in ovaries. ( I had an oopherectomy after that)

He just does tumor markers ( do not know which ones.. really do not want to ask) and a manual exam and voila I am out of there.. Not that I am complaining but I somehow feel like I should be getting some scans. I was graduated from every 4 months to every 6 months recently yey !!!

What are your follow up plans ?

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  • trigeek
    trigeek Member Posts: 916
    edited July 2009

    Test

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2009

    Tri,

    After treatment for stage 2b ILC, I had a mam. a CT and a bone scan. I was only to have bone scans and mams after that. My tumor markers were checked every 3 months. In 2006 I was diagnosed with mets. I initially had a PET, MRI, CT, and a bone scan with mets. I get CT and bone scans every 6 months now, although I could have them every 3 months if I wanted. My tumor markers are checked monthly.

    As a rule they wont give routine scans unless you have mets. You normally have to have symptoms to get them otherwise. If you are worried at all about a pain etc....call your onc and get checked. Hugs, Mazy

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  • nash
    nash Member Posts: 2,600
    edited July 2009

    Like Mazy said, most oncs don't do routine scans unless you have symptoms. I had staging CT and bone scans before chemo, then had a PET/CT to followup on a liver spot from the CT (it was a cyst). I've since had a bone scan b/c of rib pain (negative), but the only routine imaging I get is for local recurrence/new primary (mammos and breast MRIs).

    My onc also does TMs (CA27-29 and CA15-3), but those don't work for everyone and are usually the most useful in Stage IV situations. 

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  • trigeek
    trigeek Member Posts: 916
    edited July 2009

    Thanks gals.

    I had a bilateral mastectomy so guess that rules out MRI and Mammos as follow up right ? I have not been ordered a bone scan since my initial diagnosis. Hmm...

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  • nash
    nash Member Posts: 2,600
    edited July 2009

    Trigeek, I actually don't know what the protocol for local monitoring after bilat mast is. That's a good question. I did see a post recently where the gal said she had a mammo done on the mast side--apparently there was enough tissue left over to do one. I don't know if that's the norm or not.

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2009

    Trigeek,  I had bilat mast.  I was given a PET/CT as part of my initial staging in mid-2005. Since then no mammos, MRIs, or scans.  Just bloodwork (CBCs, chemistry panel, and 15-3) and a clinical exam every 6 months.

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  • susanb2
    susanb2 Member Posts: 80
    edited July 2009

    My oncologist doesn't do scans unless there are symptoms. I had a double mastectomy. She is fresh out of an oncology fellowship. She says the latest research shows that detecting a reoccurance in another area of your body prior to onset of symptoms doesn't change the outcome. According to her, it doesn't improve survival rates if treatment is started prior to onset of symptoms or after.  If that is true, why go to the expense and trouble to have PET scans, bone scans etc?  The only follow-up I have from her perspective is a bone density once a year b/c I'm taking Arimidex.

    I'm going to do a little research on my own just to make sure. But  she is probably right about the research, b/c she is one smart cookie. She is knowledgable about everything I've asked her and I've asked a lot.

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  • MariaG67370
    MariaG67370 Member Posts: 88
    edited July 2009

    I had a bilateral Mast June 08.  Before my surgery I had breast MRI, bone scan, abdominal Ultra Sound, Muga Scan,  chest xrays.   My Med Onc won't order further xrays or scans unless I complain about something or something shows up in my blood work.  So far all blood work has been fine.  I did ask for and received a pelvic ultra sound when I saw my OBGYN this year, all normal and had a bone density test, normal.  AFter Chemo and radiation I did have another muga scan to see if there were any heart changes, all fine.  Saw My Rad Onc two weeks ago, seeing her again in July 2010.  Seeing Surgeon in August and Med Onc in Sept.

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  • trigeek
    trigeek Member Posts: 916
    edited July 2009

    Ok so this brings another question...

    My dexa scan after chemo showed osteopenia(I was very suprised)

    My oncologist started me on zometa infusions for preventive measures for mets and osteopenia(since I am also on femara) my insurance is covering it so far ...

    I am scheduled to have another dexa scan november to see whether zometa is working.. so this made me wonder.

    There are 2 possible outcomes:

    1 - If the dexa shows that I do not have osteopenia anymore and that the zometa works then my diagnosis will change from osteopenic.. but I still want to get my zometa infusions for the 3 years
    wondering whether the insurance will not pay for it anymore.. and whether my oncologist will still give it to me.

     2 - The dexa shows that I still have osteopenia.. then all is good ( well not really but good from insurance and continuing Zometa treatment perspective)

    So should I get the dexa or dodge it, I had requested it not my oncologist.

    Would my future treatment change whether I still have osteopenia or not, if not there is no point in getting the dexa anyways ? Is there a problem in getting zometa even if I do not have osteopenia ?

    Maybe I should start another thread ?

    Questions.. questions arghhh !!!

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  • trigeek
    trigeek Member Posts: 916
    edited July 2009

    testagain

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2009

    trigeek,  Good question!  I am also the one who requested the dexa scans, not my onc, but he suggested the Zometa.  He said he wasn't sure if they would pay based on osteopenia in only one place in my spine, but they did pay.  3rd infusion next month.  Haven't scheduled my next dexa yet. I'd like to hear what others have experienced.  An improved dexa indicates the zometa is working, right?  Wouldn't you think that a drug that is working would be continued?  It's suppose to help rebuild bone mass, so it's just doing it's job.  Not a reason to quit.  Another thread might help get more results.  Edited this to add I'm on Femara, too.

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  • nash
    nash Member Posts: 2,600
    edited July 2009

    I'm getting Zometa for bone mets prevention. I have never had a dexa scan. So far my insurance has covered two infusions and hasn't questioned it (shhhhh!!!!!!!!!!!!!!!)

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  • sheila888
    sheila888 Member Posts: 25,634
    edited August 2009

    Hi Everybody,

    I am jumping in for more info. ...can you please explain to me the difference between Osteopenia and Osteopenic. I am on Femara since March 2006. I get bone density test evary 2 years. I have osteopenia but my DR wants to wait for the next test to see if I need Boniva or not.

    Thanks,

    Smile Sheila Smile

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