We are 226,801 members in 82 forums discussing 158,973 topics.

Help with Abbreviations

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 08:11AM

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.

Log in to post a reply

Page 1 of 1 (13 results)

Posts 1 - 13 (13 total)

Log in to post a reply

Nov 10, 2019 07:33PM 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 12/6/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 10, 2019 08:02PM 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 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Nov 10, 2019 11:59PM 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-,
Log in to post a reply

Nov 12, 2019 10:00AM 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
Log in to post a reply

Nov 12, 2019 04:48PM 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

Log in to post a reply

Dec 3, 2019 06:36PM 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 !

Log in to post a reply

Dec 4, 2019 08:27PM 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 4/15/2019 Whole-breast: Breast
Log in to post a reply

Dec 5, 2019 11:01AM 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
Log in to post a reply

Dec 6, 2019 09:25AM 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
Log in to post a reply

Jan 9, 2020 06:46PM Houston2016 wrote:

Hello,

I would like to ask about chest wall recurrence. I don't have reconstruction, had a UMX back in 11/2016, with the TE put in at the time but later the TE was removed 04/1/2019. After the surgery the chest surface was initially smooth, but few months ago around October or November I started to feel some kind of sensation or contractions once in awhile on the MX side near the arm pit and above the scar line. Then I noticed there are slightly lumps on the chest but hard to touch. Why are these changes in appearance. Does anyone have the same experience? Can this be recurrence?

Thank you all.


Dx 4/5/2016, IDC, Left, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 4/14/2016 AC + T (Taxol) Surgery 10/5/2016 Mastectomy: Left Radiation Therapy 12/13/2016 Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Jan 9, 2020 06:57PM Beesie wrote:

Houston, the lumps are probably scar tissue but they could be a recurrence. Definitely get it checked out.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Jan 10, 2020 12:05AM BellasMomToo wrote:

Houston: Last fall I noticed a raised area (not quite an 1 inch long) along my scar line, right on a rib. Both my MO and BS say it's scar tissue. I also get occasional little stabbing pains at the end of my scar, which is near my arm pit. Both drs. say that that is normal.

My MO is recommending that I get an breast MRI in March. She said that MRIs is a new recommendation for women with dense breast -- we'll see if my insurance approves it. I think she wants me to alternate between mammograms/USs & MRIs. (The only breast MRI I have had was over 3 years ago, right after my dx.) I hope an MRI can tell the difference between scar tissue and BC!

Dx'd at age 56. Tumor found by my annual mammogram -- cancer can grow fast! Dx 10/6/2016, IDC, Left, 2cm, Grade 2, 0/1 nodes, ER-/PR-, HER2+ (IHC) Dx 10/6/2016, DCIS, Left, Stage 0, ER+/PR- Targeted Therapy 11/1/2016 Herceptin (trastuzumab) Chemotherapy 11/1/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 11/1/2016 Perjeta (pertuzumab) Surgery 3/27/2017 Lymph node removal: Sentinel; Mastectomy: Left
Log in to post a reply

Jan 12, 2020 08:36AM claireinaz wrote:

Re recurrence: I thought I felt something in my scar last fall; felt it a few times, then couldn't find it. I went to my PS (he couldn't find it), but he's a good doc and he ordered an US anyway to be sure, and it turned out to be nothing. The radiologist did a pretty thorough job examining it, so my PS and I felt comfortable. In a bit longer (probably next year or maybe even this?) he will order an MRI to check implant integrity, and that would reveal any new trouble. My insurance company won't pay for MRIs except when an US shows trouble, or when implants need to be checked, and that is like every three years I think. My MO could also order MRI, and if my PS wouldn't my MO said he would anyway.

Claire in AZ

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

Page 1 of 1 (13 results)