We are 224,869 members in 82 forums discussing 157,980 topics.

Help with Abbreviations

Topic: Any big surprises on your mastectomy pathology?

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

Posted on: Dec 1, 2019 01:51PM

RuGirl2 wrote:

Has anyone had to unexpectedly have more chemo or a change in treatment plan after their mastectomy?

I'm scheduled to finish chemo in Jan and will then have a bilateral mastectomy because two previous lumpectomies yielded positive margins. I thought finishing chemo would be a cause for celebration, but instead I find myself more anxious and lost in the sea of "what-ifs." What if the pathology after the mastectomy reveals something that changes everything? My oncologist said she definitely doesn't expect anything to change my treatment plan, but " never say never. " I've spent 15 hours a day for the past several days trying to find a study that will put my mind at rest, but all that has done is made me question if my negative Pet/Ct scan is trustworthy, if I should have a radical hysterectomy to lessen the chance of recurrence, what if the ovarian cyst detected in the Pet scan is actually cancer, what if I have colon cancer (I haven't been able to schedule a routine colonoscopy while in active treatment). I feel like I'm drowning in information and feel like I will never lead a normal, healthy life. I thought everything was supposed to get easier as treatment progresses 😕

Dx 5/2019, ILC, Left, 3cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 7/1/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/12/2019 Lumpectomy: Left Chemotherapy 8/29/2019 AC Chemotherapy 10/23/2019 Taxol (paclitaxel) Surgery Mastectomy: Left, Right
Log in to post a reply

Page 1 of 1 (6 results)

Posts 1 - 6 (6 total)

Log in to post a reply

Dec 1, 2019 03:35PM Krose53 wrote:

I did not have chemo before my mastectomy but they did find a few new things with the pathology report after my mastectomy. They found 2 small tumors 5mm and 3mm and 2 positive lymph nodes. The surgeon told me after the surgery she was sure my nodes were all clear. Unfortunately, not. I did have chemo after my mastectomy. I'd trust your PET scan. There is no need to worry about your cancer being metastatic. Although they found some things they didn't expect, everything has gone well, so far, for me. Relax and trust your medical team.

Dx 11/16/2017, ILC/IDC, Both breasts, 1cm, Stage IIA, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 12/27/2017 Mastectomy: Left, Right Chemotherapy 1/22/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/1/2018
Log in to post a reply

Dec 1, 2019 04:21PM RuGirl2 wrote:

Thank you so much, Krose53! I already got one pathology shock after my first lumpectomy. The imaging predicted an 8mm tumor and clinically my lymph nodes also appeared clear. Then the path came back with a 34mm tumor, 2 positive nodes and positive margins! As a result, I seem to have a hard time believing anything.

Dx 5/2019, ILC, Left, 3cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 7/1/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/12/2019 Lumpectomy: Left Chemotherapy 8/29/2019 AC Chemotherapy 10/23/2019 Taxol (paclitaxel) Surgery Mastectomy: Left, Right
Log in to post a reply

Dec 1, 2019 09:54PM jessie123 wrote:

I've been addicted to this site since I was diagnosed last November. I always read the diagnosis section of the posts and really I haven't noticed many who are stage 4 (metastasis) at initial diagnosis. My tumor size also seemed to increase with each new test -- so that's normal. Actually I think that most people who have BMX's don't have any cancer in the good breast. At least that's what I think I've concluded after reading so many posts. Why did they do chemo before your lumpectomy - was your cancer fast growing? Did you have an MRI before the lumpectomy? I was diagnosed with cyst in my ovaries years ago - went back after one year and since they had not grown they were determined not to be cancer. I know how overwhelming all the information is when you are going through treatment - so many decisions and those decisions are so important. Yes, you are drowning in information - I relate to that. I can't help you with the normal life prognosis as my life hasn't yet gotten back to normal -- I'm just 5 months post treatment and I still get on this board every evening. My friends with breast cancer say it takes about a year to feel normal again ---- and we will feel normal again.






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 2, 2019 09:10AM claireinaz wrote:

I had lumpectomy, chemo, rads, and a year after rads, BMX with immediate recon. Pathology post-surgery showed hyperplasia in the "good" breast, which mammos, US, and MRIs didn't show. I am glad I listened to my intuition that told me to remove as much potentially threatening breast tissue as possible. My MO told me the general claim about rads and lumpectomy being as good as a BMX, but ILC hides from scans--for years, as mine did--and personally I couldn't really ever trust a mammo or US again.

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
Log in to post a reply

Dec 3, 2019 10:48AM wallycat wrote:

My surgeon insisted on lumpectomy. Since I refused to do rads, my choice for bmx was honored. THe only thing that surprised the doctors was that the MRI, which he claimed was 99% accurate was inaccurate (1.8cm tumor vs the promised 7mm) and the onco score (convinced it would be low but ended up intermediate).


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 3, 2019 08:12PM RuGirl2 wrote:

Thank you, for sharing your experiences. Originally, my tumor was estimated to be 8mm. My surgeon felt the image was very clear...3D mam and ultrasound...So she didn't order any more imaging. Wrong! When the path came back with all positive margins and a 34mm tumor, I was ready for a mastectomy but the surgeon thought we should then do an MRI to assess residual margins The MRI didn't show much left and the other side was clear so I opted for re-excision. That time I had 2 positive margins left but the tumor board said I needed chemo before another surgery. It had been 3 months getting those 2 surgeries, getting MRI, meeting plastic surgeons, etc. I had to start chemo knowing I'd have a BMX after. I'm just so afraid having chemo with these positive margins is worsening my prognosis. 😥

Dx 5/2019, ILC, Left, 3cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 7/1/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/12/2019 Lumpectomy: Left Chemotherapy 8/29/2019 AC Chemotherapy 10/23/2019 Taxol (paclitaxel) Surgery Mastectomy: Left, Right

Page 1 of 1 (6 results)