Stage II w/+nodes: how often for PET scans?

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Fearless_One
Fearless_One Member Posts: 3,300
edited June 2014 in Stage I Breast Cancer

I am almost 3 years out, new onc wants another PET/CT.   Had one at diagnosis in '09, he said old onc should have ordered another by now (had to switch due to change in insurance).  

I don't mind, insurance should cover, but it is anxiety-provoking, of course!  Tumor was stage II, small but agressive, with perinodal invasion and in 2 nodes.

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  • pupmom
    pupmom Member Posts: 5,068
    edited May 2012

    I've had 2 CTa since my dx. My MO said now once a year. Glad I don't have to go through the anxiety more than that.

    What does perinodal invasion mean? Is it the same as microinvasion? 

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited May 2012

    Ok, so sounds like your doc is in line with mine, so I guess that's good.   He seems to think my old onc was not monitoring me very well, although he didn't come out and say that.

    Perinodal invasion means it pushed it's way out of the node capsule and into the tissue (but this is not the same as mets - it did not spread to other organs).   But it means it was aggressive.   Is sometimes called "extracapsular extension".   Oddly, it does not impact staging (but number of nodes does).

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited May 2012

    Oh- and he wants another bone density, too (just had one 6 months ago).   He is test-happy!   But that is a good thing, right?   :-)

  • pupmom
    pupmom Member Posts: 5,068
    edited May 2012

    Yes, I've heard the term extracapusular. And to reply to your next post, I do believe that a bone density as well as a bone scan is a good thing. My onc ordered both right after I saw her for the first time. But I'm not sure about how often they need to occur. She hasn't said when I will get more of them. Yep, testing and scaning are good things, except for our nerves!

  • LouLou40
    LouLou40 Member Posts: 180
    edited May 2012

    I have never had a PET, did have ct and bone scan for staging but no scan post treatment.

    MO dosen't routinely scan unless you symptoms suggest the need for one.

    I'm comfortable with this as I don't want unnecessary radiation.

  • Kicks
    Kicks Member Posts: 4,131
    edited May 2012

    This Aug will be 3 yrs since DX. I have not had a PET since then. I had a head MRI a yr after surgery (showed nothing), a bone scan because of increased upper back apin (just the arthritis acting up), then had some abdominal issues so had an abdominal CAT (again showed nothing other than the gall stones that had developed after TX. Within a yr post TX my surgeon and Rads Dr both 'kicked me to the curb' as long as I see my PA every 6 mths - not a prob. My Chemo Dr st8ill insists on seeing me every 6 mths because I'm "High Risk" being IBC but he doesn't order any blood draws any more. My PA is very on top of everything though and sends him all reports she orders. In Feb I had cataract surgery and the protocol with VA is that you have not had a chest Xray in the last year you had to have a new one. I fought it and won - I potentially have a lot of radiation in the future so not going to something so silly as a chest Xray for cataract surgery.

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited May 2012

    My MO has never ordered a pet scan, bone scan, or CT for me ever. I wish he would. I know the tests can be nerve wracking, but getting good results would put my mind at ease. Isn't it strange how different MO's test so differently?

  • toomuch
    toomuch Member Posts: 901
    edited May 2012

    Fearless - I had 2 of 12 positive nodes with extracapsular extension. I have had no radiographic studies other the breast MRI. I sometimes have wished that my MO would order a scan but I have read the NCCN guidelines and they actually don't recommend routine scans for Stage 2 BC. I think that your previous MO was probably following the guidelines. It's evident that there are great variations between MOs for f/u of early stage BC. It's great that you're comfortable with your current MO's plan.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited May 2012

    I had a PET scan following my BMX that also found 2 positive nodes. That was the "wisdom" from my case being presented to the tumor board. My RO mention a "mini-PET scan" that could revisit just my armpit/node area. But I no longer see my RO & it's nothing I want to push for at this time. Maybe if my neck is still hurting when I see my MO in 3 months. I'm not sure how much of the neck was included in my original PET scan. I'll have to find my copy of the report. I remember it being very vague though

  • ma111
    ma111 Member Posts: 1,376
    edited May 2012

    Extracapuslar invasion does mean that there was some tumor burden left behind. I'm sure that maxed out on the rads with that armpit.

    I would have the tests he is requesting.

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited May 2012

    The extracapsular extension was prior to treatment and surgery.   Hopefully, since I had axillary node dissection (along with bilateral mastectomy), that got it.   But I will have the scan.  

    But like LouLou pointed out, the extra radiation concerns me.   But if that is what new onc wants, I will get one.    It does seem to go against standard care, from what I am reading here.   But I trust him.

  • sbaaronson
    sbaaronson Member Posts: 230
    edited May 2012

    I am coming up on a year since my 6 months post chemo PET/CT scans. Debating asking for one when I go for my next appt mid-June. I am not having any "issues" but I wonder if getting a yearly all clear on my scans will be a psychological boost. I am not wild about the extra radiation as LouLou pointed out. Any thoughts on the risk/benefit to go asking for this as part of the yearly follow-up? My tumor pathology was nasty... No nodes but lvi, so I feel it probably got into my bloodstream.

  • Lee64
    Lee64 Member Posts: 184
    edited May 2012

    I had a Pet scan before starting chemo and have not had another one. I see my MO every 4 months for blood work which includes tumor markers. I also had a bone density test done before starting Arimidex. Does your blood work include vitamin D values? I have been reading how important it is to have good levels, but I am not sure mine is being checked. How is it listed on the test sheet? My MO talked about doing another PET scan in a year, but that time has passed and she hasn't said anymore about it. I'm going for a mammogram this afternoon; first one since my left mastectomy. I also had LVI and extracapsular extension.

  • riverhorse
    riverhorse Member Posts: 126
    edited May 2012

    I think some MOs think that the CT/PET is only really valuable for initial diagnosis if there is a reason to suspect mets and/or to monitor treatment.  It can only tell the story of the day it is taken, and of course, it cannot detect mets below a certain measurement threshold.  I have never had one, and don't expect to unless I have some symptoms.  While it can give one peace of mind in the moment if it is clear, a good scan is no guarantee that the disease will not appear at some future date.  For me the stress of regular CT/PET scans would not be worth the momentary peace of mind.  Not to mention the possibility of false positives for a body like mine with a lot of milage.  I am afraid I would always be thinking ahead to the next scan date and start to worry the day after the all-clear.  

  • kyliet
    kyliet Member Posts: 687
    edited June 2012

    I had extracapsular and lymph. channel invasion so CT scan ordered. I coped with lumpectomy and SN, then ax.clearance but absolutely freaked out getting my CT scan. The wait for those results was so stressful; they were clear. I have just finished chemo and about to start radio. hopefully that is enough. I had a partial CT scan for radio. markers but I am not sure how much that checks. I have found in Australia it really depends on the MO which scans everyone gets.  

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2012

    Me too riverhorse. I have never had a scan either and I would be just like you - freaking out until the next scan. My sister had lobular carcinoma and have to have scans. Her type of bc has a tendency to move around so she had to have scans. Hard enough to handle more frequent mammograms and trips to the ONC. It is also hard not to worry about every ache and pain you have after been dx and through treatment. Even the pills to prevent recurrence can make you anxious because of SE. All in all this is such a sucky disease.

  • maltomlin
    maltomlin Member Posts: 343
    edited June 2012

    I'm with you Riverhorse. I couldn't cope with the stress!

    I'm over 4 years out from dx and just had the scans at dx. No scans now unless I present symptoms. That suits me. 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited June 2012

    I had MRI PET and PEM after diagnosis.

    No routine scans.

    I did have a shoulder MRI at the cancer center.

    I also have tumor markers.

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