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Topic: What were your ILC symptoms before diagnosis

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

Posted on: Nov 29, 2018 10:17PM

jessie123 wrote:

They say ILC doesn't usually cause lumps in the breast and it doesn't usually show up on Mammo's-- so what prompted further testing in your case that led to finding Lobular C? It's scary because every year after a mammogram I feel relieved that I don't have cancer -- but now I know that's not a reality. I did have a lump that took me to the doctor. However, since they say lumps aren't usual what caused you to have additional testing.

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
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Nov 29, 2018 11:01PM - edited Nov 29, 2018 11:02PM by Gracejoy

From my experience what I have learned was the best thing is to have different test besides mammogram such as ultrasound or MRI from time to time like every other year or so. Also if you have occasional pain don't ignore it check it out immediately

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 30, 2018 06:13AM Moderators wrote:

Hi ladies!

It's true that invasive lobular carcinomas tend to be more difficult to see on mammograms because the cancer cells normally spread to the surrounding tissue in a line formation, not as a lump. In other cases, is a thickening or hardening area in the breast the first sign of ILC. You can visit our main site for more information on Signs and Symptoms of ILC and Tests for Diagnosing ILC.

We hope this helps!

The Mods

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Nov 30, 2018 07:15AM Runrcrb wrote:

We found ILC after I'd found the IDC. My breast surgeon ordered an MRI after my IDC diagnosis to ensure that we only needed to focus on that one area. Unfortunately, the ILC was found in other areas of the breast so mastectomy was the decision (over lumpectomy).

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Nov 30, 2018 08:30AM claireinaz wrote:

I did find a lump---outer edges of my right breast, close to my armpit. I could feel it because I'm small-breasted and could feel my rib cage underneath.

My PCP said it felt like normal breast tissue, but my friend told me no matter what, get any lump in your breast checked out. So I pushed for an ultrasound and voila, it was cancer.

I have dense breasts, which can hide problems. I had 5 clear mammos for 5 years before I found this on my own.

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 30, 2018 08:32AM jessie123 wrote:

I have excellent retired state employee insurance and I doubt they would have paid for an MRI or double breast ultrasound unless there had been unusual symptoms. That's what is scary to me. I've read most lobular is found by the patient -- if I had known that I would never have been relieved after a mammogram because I had fibrocystic breast and found lumps all the time.

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
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Nov 30, 2018 08:40AM jessie123 wrote:

Clairnaz ---- that's exactly where I found my lump -- my breast are large and I'm through menopause so my dense and fibrocystic breast are gone --- but I doubt I would ever have found the lump if I hadn't felt a quick short pain there one night which made me reach to that area of the breast. My internet couldn't even feel it because it was so deep.


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
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Nov 30, 2018 05:02PM momand2kids wrote:

Hi

years of completely clear mammograms-- then pcp finds a lump in my physical and turns out to be 2.5 cm ILC which they say could have been there for 8-10 years. No mammogram ever picked it up. I now have an MRI every other year along with an annual mammogram. As for symptoms, there were really not any- except in the 5-6 months before dx I was really tired (unlike me) and there is a picture of me about 6 months prior in Central America and I look horrible--- and I recall really dragging myself around that summer--- it was strange-but of course now I know why!!!!

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Nov 30, 2018 07:28PM jessie123 wrote:

So far it sounds like people are finding lumps --- which is what the literature says is uncommon. Wonder how uncommon it really is (-: I hope more people provide their experience. I'm really curious.

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
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Nov 30, 2018 07:42PM - edited Nov 30, 2018 07:43PM by Astrid

I could not have mammograms since dmx im 2002. 2012 I felt rock hard parts in my reconstructed right breast. Thought it might be tissue necrosis from reco in 2011. But nope

Was dx'd through ultra sound then biopsy.

I found my own cancer 3 times. The only extra ones were found during mastectomy or when DCIS showed up originally in right breast 2002. It has always been rock hard.



2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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Dec 1, 2018 07:36AM - edited Dec 1, 2018 07:40AM by DivineMrsM

I had a big dimple in my breast. I'm not one to look at my naked body in the mirror, but weeks prior to diagnosis, I happened to be in front of the bathroom mirror after a shower and noticed there was something weird about my breasts. My life was so busy and hectic, and not focused on me—another of those women putting everyone else first—and I wasn't sure what I was seeing. My breasts are ample and the dimple puckered the underside of the breast. Well I had no tme to dwell on this. Perhaps it was huge denial. And I can’t say I ever understood dimpling to be a sign of bc.

Then I went for my annual mammo. About ten days later, I was lying in bed and scratched an itch on my midriff. My fingers brushed against the underside of my breast and touched what felt like a gnarled mass underneath the skin. Oh, I knew immediately it was bc and turns out it was ilc.

As I was waiting to tell dh later that morning, the mammo center called and said due to an “assymetry" on my mammo, they needed me to come in for more testing. I said, “I felt a mass in my breast today." They said, no, the mammo doesn't show a mass and I said firmly. “There IS a mass."

So you can see my signature line what unfolded after that.

And I don't care who says it doesn't happen, medical personnel or other, but my belief is that the pressure of the mammo pushed that mass closer to the surface and I felt it.

An MRI determined the mass to be 6.9 X 4.3 X 1.8 cm. I’m not good at understanding centimeter measurements, so I have stored in my notes that those measurements equal 2.7 X 1.7 X .7 inches.

Neoadjuvant chemo shrunk the mass way down tho not completely and I was able to have a lumpectomy.

The mass or lump did not feel like a pea or a marble, as I hear some people say. I describe it as a gnarled line, sort of like what a bumpy scar that didn't heal right might feel like underneath the skin.


found lump 12/22/10~er+/pr+/her2- stage iv bone mets------------- Chemo~lumpectomy~radiation~arimidex------------- March2019/Ibrance-Aromasin---------- Sept2019/Verzenio-Aromasin
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Dec 1, 2018 08:26AM claireinaz wrote:

momand2kids,

Isn't that funny about your look back and realizing maybe your body was trying to tell you something. I discovered my problem mid-August, and all summer long I felt like there was an umbrella of doom, so to speak, hanging over my head. I love summer--it's my favorite season--, but couldn't shake that feeling. I know why now.

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
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Dec 2, 2018 08:15AM dtad wrote:

Hi everyone...my ILC was found on a preoperative MRI for IDC. Had I not had IDC, they never would have found it. The ILC was missed on both 3D mammo and ultrasound. Only picked up on the MRI. So yes, it is sneaky!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 2, 2018 11:01AM Peregrinelady wrote:

DivineMrsM, I agree. My lump suddenly appeared shortly after my mammogram and I also believe that the pressure squeezed it out.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/17/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/30/2016 Arimidex (anastrozole)
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Feb 17, 2019 07:02PM 60notpretty wrote:

my ILC wasn’t found on mammo or biopsy. I was dx with DCIS and the ILC was found with the lumpectomy for DCIS. They now have to check the lymph nodes after I heal from the lumpectomy. I do remember feeling very sluggish this year. This was not like me at all but because there was no history of BC in my family I didn’t even consider it.

60notpretty Dx 12/13/2018, DCIS, Right, Stage 0, Grade 2 Surgery 2/8/2019 Lumpectomy: Right Dx 2/14/2019, ILC/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/20/2019 Lymph node removal: Sentinel Hormonal Therapy 4/3/2019 Arimidex (anastrozole) Radiation Therapy 4/23/2019 Whole-breast: Breast
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Feb 17, 2019 08:58PM beach2beach wrote:

My Ilc was not found on mammo. I had a sono that showed a small area that they could not tell what it was. After biopsy found out it was cancer. I had no lump. My dr. said it probably would have been another year before it would have been felt or seen on mammo.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 18, 2019 07:15PM Dani444 wrote:

it was an inverted nipple that led me to go to my doctor. That along with noticing a large indent in my breast tipped me off. I did then feel a hardened area under the skin but it was flat, not a round lump. A pathologist I work with said that was probably scar tissue I was feeling from the cancer, he also told me it had probably been growing for years.

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)
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Feb 19, 2019 01:08AM Veeder14 wrote:

Mine was found on MRI only, I had no symptoms. I was given a yearly MRI due to being BRAC2. Couldn’t feel a lump and didn’t feel sick. Good thing I was getting MRIs

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Feb 19, 2019 06:32PM Kstinekd wrote:

I had a lump at the top of my breast/chest. Ends up there was a substantial tumor across the bottom of my breast and the lump was just a pronounced area of cells that didn't qualify as a tumor, just some little guys who made themselves known, thank goodness! The lump tested positive. Then had an MRI where a hint of something showed up across the bottom of the breast which tested positive. Ended up being a very sneaky 10cm ILC tumor.

Dx 10/9/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2- (FISH) Surgery 11/29/2018 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Chemotherapy 1/3/2019 AC + T (Taxol) Radiation Therapy 5/15/2019 Whole-breast: Breast, Lymph nodes Surgery 9/18/2019 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Feb 19, 2019 06:48PM jessie123 wrote:

Those little guys were your little angels.

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
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Mar 24, 2019 02:20AM Yogijen wrote:

My ILC was not seen on mammo but picked up because there were calcifications in the same area (thank goodness) that prompted a biopsy. It surprised us all. It was caught super early (less that 1cm).

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Mar 24, 2019 11:44AM Moderators wrote:

Yogijen, glad you found us, and indeed glad the calcifications prompted a biopsy! Medicating

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 28, 2019 06:51PM Cin17 wrote:

Pain about 5 months after my 2017 3D mammogram. Went to the gynecologist, NP examined me and said she didn't feel anything so I took the vitamin E she said might help with the breast pain. Intense fatigue set in about 5 months after that which I thought came from dealing with my husband's cancer; then a week before my 2018 mammogram I noticed my breast had changed shape and that's when I knew. Had my mastectomy on 3/14/19, about 11 months after I went to my doctor for breast pain

Dx 2/4/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 3/14/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant
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Mar 29, 2019 08:10AM Whatjusthappened wrote:

I remember bumping into something one day and noticed that there was a painful area in my breast. When I felt it there was a "thickening," like a knot. I let it go for a couple of months, and it would throb now and again, sometimes worse than others. I had read that breast cancer does not usually cause pain, but couldn't get it out of my mind since it kept reminding me it was there. Finally went to get it checked out and my gyn said it just felt like glandular tissue to him. Didn't even bother to mention it on my mammogram order. It barely showed up on mammogram, and my BS later said he had seen similar findings get overlooked many times. This was likely true in my case, because I had gotten annual mammograms religiously for at least several years prior to this one. An MRI showed "extensive" disease of the breast, with it extending into tissue around the original tumor. ILC is very sneaky, I've come to find out, and I am thankful for the person who read my mammogram!

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/21/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/22/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Mar 31, 2019 07:01AM morningdove wrote:

My story is I had not been getting yearly mammograms with my last mammogram being in 2011. I don't know why I just let myself each year say next year and kept putting it off. I am 61, have large dense breasts and had gone through a triple biopsy in 2011 on my left breast that turned out to be nothing. In 2013, my older sister at 58 years old was diagnosed with Breast Cancer where multiple types of cancer were found in her breasts and she had a mastectomy. Still each year would come and I would have the intention of getting a mammogram but not follow through. Maybe subconsciously I felt safe since the triple biopsy showed nothing, I'm not sure. My Primary Care Physician kept reminding me how important it was to go and this year of all the years before, I listened and went and they found early Stage 1A PILC (Pleomorphic ILC) in my right breast with my left breast fine. I had absolutely no symptoms at all. There was no lump to feel, no change in my breast and only the mammogram revealed a very small area of clustered micro calcifications that triggered a call back and a biopsy. How fortunate am I that I went this year. I believe divine intervention played a part along with my Primary Care who kept bringing it up on each visit. Please don't do what I did and go to your recommended mammograms and other screenings. Just go.

Pleomorphic Invasive Lobular Carcinoma Dx 1/25/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 2/13/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 3/25/2019 Whole-breast: Breast Hormonal Therapy 4/24/2019 Arimidex (anastrozole)
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Apr 9, 2019 05:41PM - edited Apr 9, 2019 05:44PM by Beaglelove

I had no symptoms just a annual Mammo and radiologist saw architectural distortion in both breast. Left breast was radial sclerosi and right had a 1.7 cm ILC mass. Lumpectomy 4-1-19 Micrometastasis in 1/2 nodes. They have sent for Oncotype test and am waiting for appt with oncologist and post op visit. I was very upset about the node as all test showed no node involvement but the same tests were right on target.No family member on either side has had breast cancer. I had 3 children and breast fed all 3 for a year. Only risk factor was dense breast. I don't understand why after years of regular mammon's it's just there suddenly. I need to stay off Google because it ages ILC sound like it will reoccur I'm so frightened


3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
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Apr 10, 2019 03:12PM jenney75 wrote:

Hello! Can I ask what they did once you were diagnosed with ILC? Did you have to have a mastectomy? My story isn't quite like yours, but close. I put off getting my first mammogram. I got it a couple weeks ago. Was called back that same day to schedule more imaging. Heard that was normal so didn't think anything of it. Went back for spot compression and US. After the spot compression, I was taken to see the radiologist. He cancelled the US and ordered a biopsy. I have some architectural distortion in my right breast. He said it could be scar tissue from the breast reduction I had in 2004, but it could be something else as well due to age, asymmetry and family history. I asked why the US was cancelled and he said it wouldn't tell him anything he didn't already know. Okay, like that's reassuring. My biopsy is April 19th.

How long did it take for you to get the test results back. It's been horrible just waiting to get the biopsy, I'm sure it will be worse waiting for the actual results. I told myself if it does come back as cancer, I will take a day to freak out, but then we are back to business. Was a lumpectomy an option for you? I'm not so concerned about my boobs, they can take them. However, my OBGYN said they won't take both. If that's the case, I'd rather them not take either and just do a lumpectomy.

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Apr 10, 2019 03:56PM Meow13 wrote:

I had no symptoms 2 tumors found on annual mammogram.

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Apr 10, 2019 05:13PM lyzzysmom wrote:

I had a history of cysts and an unrelated rash just before my annual physical. It had improved but my PCP sent me for a precautionary ultrasound and it showed up on that. Fortuitous rash!

Oncotype DX 12, age at dx 59 Surgery 5/6/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 5/16/2014, ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx 5/16/2014, LCIS, Stage 0, 0/1 nodes Radiation Therapy 6/24/2014 Breast
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Apr 11, 2019 07:18PM Maryellen6 wrote:

Hello...I had tiny pin prick pains in left breast,inside lower area. I did breast exam and found an area that felt like a mushy cigar would feel. My surgeon ordered mammogram and ultrasound which I had one week later. The mammogram showed nothing but ultrasound showed a strange area. I had a biopsy four days later...next day received the call that it was ILC, grade 2. I had double mastectomy, even though nothing showed in right breast, I didn't want to take chances. The path report also showed pre cancer cells in right breast. My tumor was 2.5cm. I then had reconstruction, which to date I have problems with, and eight rounds of chemo, then aromatase inhibitor for five years.

It is so very important to be your own advocate and be involved with your treatment plan.

Tomorrow will be six years that I received my diagnosis. Waiting to find out results takes a lot of patience.

ILC-Stage 2B-Grade 2...Bilateral Mastectomy w/reconstruction...8 rounds chemo 4/AC and 4Taxotere...no radiation Dx 4/12/2013, ILC, Left, 2cm, Stage IIB, Grade 2, 3/8 nodes, ER+/PR-
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Apr 11, 2019 07:24PM Maryellen6 wrote:

Jennie

Your OBGYN is incorrect about them not taking both. My doctors at first said lumpectomy with chemo but I insisted on double mastectomy and they said no problem if that was my choice. Afterwards my surgeon said I made a wise choice as the right breast was precancer as well. It is mind boggling to wait for results. But everything does finally come together to make a good decision for yourself. Hang in there.

ILC-Stage 2B-Grade 2...Bilateral Mastectomy w/reconstruction...8 rounds chemo 4/AC and 4Taxotere...no radiation Dx 4/12/2013, ILC, Left, 2cm, Stage IIB, Grade 2, 3/8 nodes, ER+/PR-

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