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Topic: How are you monitored post mastectomy?

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

Posted on: Nov 10, 2019 07:11AM

Mavericksmom wrote:

I recently had a mammogram on my remaining breast and it made me wonder how the small amount of remaining breast tissue in my reconstructed breast will be monitored?

Of course I will have regular doctor visits and they check my reconstructed breast, but I don’t even know what symptoms someone with chest wall breast cancer, or recurrence would have. I do know the chance of recurrence at the site of the mastectomy is very small. My doctors never told me to doanything other than to see them every three months and have yearly mammograms on remaining breast. Just curious.

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Nov 10, 2019 06:33PM Dani444 wrote:

My BS is having me alternate with MRI and mammogram every 6 months. I had to have a biopsy on my remaining breast at my 1st mammo post treatment, so I don’t know if that factored into that decision. Maybe you could ask for MRI if you are worried.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 10, 2019 07:02PM OnTarget wrote:

No monitoring other than doctor's visits. I think they'll be every 6 mos or every year.

Pretty worrisome for me!!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 10, 2019 10:59PM karen1956 wrote:

I only see medical oncologist (every 6 months) - he takes a detailed history every visit, does breast exam and labs.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Nov 12, 2019 09:00AM claireinaz wrote:

Ultrasound, and a breast MRI every few years. My PS actually orders this, so insurance will cover it (he uses a code for checking implant integrity). Other than that, six month check ups with CBC work and a meeting with my MO, always scary (one coming up this Monday).

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Nov 12, 2019 03:48PM Mavericksmom wrote:

Good luck with your appointment, Claireinaz!

I have an appointment with the oncology NP in three months. I am going to ask if I can just do all my follow up visits with her for consistency. I will ask her about ultrasounds/MRI, but they cannot use the same coding your doctor usesbecause I don't have implants, but maybe there is something they can use. I know I would feel better at least having an ultrasound every few years

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Dec 3, 2019 05:36PM alexandra1967 wrote:

Itoo just have doctor visits only . It really worries me because my friend in Italy , with the same type of cancer gets a lot more tests and checkups twice a year !

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Dec 4, 2019 07:27PM jessie123 wrote:

It seems like since you have the remaining breast you would at least have an MRI occasionally. I had lumpectomy and have alternating mammograms and MRI's every 6 months. Since I also had LCIS I guess the mammogram is warranted since I'm at increased risk for IDC. However, I will never trust a mammogram for ILC

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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Dec 5, 2019 10:01AM wallycat wrote:

No boobs so no scans. Onco visit annually and she does a quick physical and manual touch/exam of the scars and surrounding area/arm pits.

Indeed, after seeing DHs scans, I wonder what I have (or don't have) lurking.

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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Dec 6, 2019 08:25AM claireinaz wrote:

I hope everyone is doing okay. My new MO said (he didn't have to, but I was polite) "you don't need mammos anymore" (which I already knew). He did support an MRI every two years, and my PS orders them because he can write up the orders for insurance coverage (to check implant integrity). My MO was more concerned about getting too much calcium and future heart disease for patients who've had ACT, since there seems to be a correlation. I guess that was good since he didn't seem to be concerned at all about a future recurrence ;)

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus

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