Is Dr. doing all she should - Never had a scan in 3 yrs

dillydilly
dillydilly Member Posts: 23
edited June 2021 in ILC (Invasive Lobular Carcinoma)

Hello All, I've been reading some posts and it sounds like I should be getting CT scans once a year.

Feb 2018 was my DMX, no recon. my oncologist has me get the CA 15-3 (range 0-25) every 6 months. Last 3 readings: 22.9, 22.0 and 23.1 as of Dec 2020. However, she has never had me get any kind of scan, I figured maybe it's because lobular doesn't show well on imaging, so why bother? I would love your feedback:

Is CA 15-3 the best blood test for ILC?

My numbers are in range but in the 92nd percentile (high), Dr. says it doesn't matter, as long as I'm within 0-25. (opinions?)

Have any of you had scans that found ILC spreading? if so (sorry) what kind of scans?

My aunt died of MBC and my gram (her mom) survived many years after DMX in her late 40's (same as me). Based on an old mammo report 5 years prior to my surgery, there was a suspicious area in the exact spot they dismissed as dense tissue and calcifications. So, I had 5 more years, 5 more mammo's with nothing being obvious enough for anyone the recognize. What are the chances any scan would find cancer cells that lack the binding molecule to form a lump?

oh, what to do.

Hope you are all on a path of healing and having a GOOD day!

Thank You So Much !!!

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Comments

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited June 2021

    My oncologist said breast tissue is hard to read on a CT so they're pretty useless for local recurrence. They'd only be ordered for mets to other body parts if you had specific symptoms.

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  • dillydilly
    dillydilly Member Posts: 23
    edited June 2021

    Thanks Alice.

    I no longer have breasts, so I guess it would just be a chest scan maybe

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2021

    I've never had a scan for breast cancer. Ever. I've never had a tumor marker run either. I was in an ovarian cancer study so they ran the ca-125, but my oncologist has never ordered any of these.

    The risk of secondary cancers from CT scans exists so doctors try to be selective about what they scan and which types of scans they use.

    I recently had a full body bone marrow MRI because of suspicious routine lab work, but it had no correlation to my breast cancer.

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  • Sam2U
    Sam2U Member Posts: 233
    edited June 2021

    Stopped checking CA 27.29 5 years out from diagnosis---was never high.

    Never had a scan, but physical exams on mastectomy side every 6 months for 5 years, then annual.


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  • smc123
    smc123 Member Posts: 71
    edited June 2021

    My treatment center does not order scans unless symptoms arise. How my MO explained it was routine scans doesn’t reveal cancer any sooner than just symptoms or changes in your body. I think it just depends on your doctor’s judgment.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2021

    Hi

    never had any scan other than initial breast mri- no tumor marker tests either. My onc always said I would know before her if there was a problem- I think she was right--- so far so good-almost 13 years out. I used to think I wanted all the scans, but now know I don't. I have pcp, gyn and onc checking every year and I have a mammo every year and a breast mri every other-for me that feels like enough-but I think you have to do what feels right to YOU---- so maybe you could ask for a PET?

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  • dillydilly
    dillydilly Member Posts: 23
    edited June 2021

    Thanks for all your input! I do have random pain where breasts used to be and also down my side below armpits. But for some mastectomy patients, the pain goes away, but not for others.

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  • Dmg77
    Dmg77 Member Posts: 6
    edited June 2021

    hi, I had the same concerns. Last week my onco said it is very rare that cancer will come back on wall of chest.

    She also said blood work every few months and regular check ups are enough.

    As for your pains...I have the same thing , surgeon said many women have it.

    So I guess if we keep all scheduled appointments and lab work that’s the way to go.

    Are you planing on reconstruction?

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  • dillydilly
    dillydilly Member Posts: 23
    edited June 2021

    Hi DMG77,

    Thanks for your input, it really helps. I didn't have reconstruction at the time, I was due for a total hysterectomy just months after and I was my Mom's caretaker at the time. So, there was NO time to be down for an OPTIONAL surgery.

    I honestly don't mind "living flat" if I could shrink the belly and not look like a pregnant man, that would be awesome. Although, there are asymmetrical fat "puppies" below armpits a fat tube wrapping around my side lower than armpit on the right. Not sure how all that happened but small implant would make that area seem less concave. Went to 2 plastic surgeons who didn't want to touch it?

    Thanks again!!

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  • karen1956
    karen1956 Member Posts: 6,503
    edited June 2021

    my oncologist only does scans if patient is symptomatic or patient requests/demands a scan. 15 years living NED - happy to not have scans - oncologist does labs, exam and lots of questions - see him every 6 months

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  • dillydilly
    dillydilly Member Posts: 23
    edited June 2021

    Thanks, appreciate your replies.

    ----> Regarding CA 15-3....what kind of numbers are you long term survivors seeing?

    I just got back my June results and I'm now at 24.8 (range 0-25).

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