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

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jun 1, 2021 01:32PM

dillydilly wrote:

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 !!!

Dx 1/23/2018, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)
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Jun 1, 2021 01:36PM AliceBastable wrote:

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.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 1, 2021 01:40PM dillydilly wrote:

Thanks Alice.

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

Dx 1/23/2018, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)
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Jun 1, 2021 01:44PM wallycat wrote:

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.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jun 1, 2021 01:55PM Sam2U wrote:

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.


Dx 10/9/2013, ER+/PR+, HER2- Dx 10/25/2013, ER+/PR+, HER2- Surgery 11/12/2013 Lymph node removal: Left, Sentinel Surgery 12/13/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 12/23/2013, ILC, Left, 6cm+, Stage IIIA, Grade 2, 2/40 nodes, ER+/PR+, HER2- Chemotherapy 1/16/2014 AC Chemotherapy 3/18/2014 Taxol (paclitaxel) Radiation Therapy 6/17/2014 Breast, Lymph nodes Hormonal Therapy 8/9/2014
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Jun 1, 2021 02:07PM smc123 wrote:

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.

Dx 2/1/2016, IDC, Left, Grade 3, ER-/PR-, HER2- Chemotherapy 2/23/2016 AC + T (Taxol) Surgery 8/1/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/4/2016 Breast, Lymph nodes Surgery 4/3/2017 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jun 1, 2021 04:43PM momand2kids wrote:

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?

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Jun 1, 2021 05:32PM dillydilly wrote:

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.

Dx 1/23/2018, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)
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Jun 1, 2021 07:44PM Dmg77 wrote:

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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Jun 2, 2021 10:34AM dillydilly wrote:

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!!

Dx 1/23/2018, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)
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Jun 4, 2021 05:18AM karen1956 wrote:

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

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jun 4, 2021 10:13AM dillydilly wrote:

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).

Dx 1/23/2018, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH)

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