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Topic: Lumpectomy vs Mastectomy- MRI Results Have me Rethinking Options

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

Posted on: Jan 28, 2021 09:41AM

atchboo wrote:


A little background to help explain the situation I am in now and my uncertainty. Sorry, it's long.

I was newly diagnosed in December with Invasive intermediate grade lobular carcinoma with background carcinoma in situ.

This was after my baseline mammogram, I'm 46, I know I was late, particularly given my family history, but I did it.

They called me back after the initial mammogram, for an ultrasound and mammogram. Then for an ultrasound biopsy on the right breast.

When that came back for the ILC .6cm, they then called me back for a biopsy on the left breast for a spot that had the right not been cancer they would have just kept an eye on. Meeting with the surgeon, good candidate for a lumpectomy but have an MRI to make sure everything is what we think.

MRI results- shows tumor is larger than ultrasound showed, to be expected but there is also scattered areas around biopsy clip that are most likely cancerous and numerous spots on left and right that were prominent with contrast.

Go for another ultrasound to find the spots MRI picked up, I have fibrocystic breast and lots of little bbs for lack of a better term but a couple of areas of concern still and they now want me to have an MRI guided biopsy, two-three on the left and one-two on the right at 12, the original tumor is at 6.

I am mentally wrung out by this and am rethinking the lumpectomy.

If I have it and go for my yearly mamo and MRI, I feel like due to my dense and fibrocystic breast, I will keep getting called back for a second look, ultrasound or biopsy every yeaThe yearly exam is nerve-racking enough without the callback and biopsies.

Anyone going through or gone through this and just get to the point where you don't want anymore test and just want to take action?

I am thinking of the now and the future anxiousness and well being and I know mastectomies are not to be taken lightly but I feel like leaning that way now.

any input would be most appreciated.

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Jan 28, 2021 11:03AM moth wrote:

I think you need to wait for your biopsy results and see what they say because it could be that the breast surgeon changes their recommendation and a lumpectomy might no longer be the preferred surgical option anyway.

I think if you are given a choice, with lumpectomy vs mastectomy the thing I keep coming back to is that we fixate on the mammogram screening & possible callbacks but I think that's a mistake as it's not the risk of local recurrence that is worrisome, it's the distant/metastatic recurrence... and both surgeries have the same long term outcomes according to numerous studies.

I get it - because I had to have a stereotactic biopsy on the other breast during treatment for the original breast cancer & at one point I was thinking "jeeeeeeez, just cut them off already" but when I reviewed the literature again and considered what my surgeons said again, I settled back to being comfortable with my decision.

As always, take the time to speak with your team, know your priorities, know the stats and make the choice that's right for you. Best wishes!

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Jan 28, 2021 12:40PM navy1305 wrote:

I was diagnosed with DCIS after a biopsy when a mammogram showed a very tiny calcification. I was initially leaning towards lumpectomy, but my surgeon ordered an MRI and lo and behold, the DCIS was actually about 8cm and the MRI also showed some suspicious stuff in my other boob. So I had the mastectomy on the one side because my surgeon wanted to get it off ASAP due to the size of the DCIS, and then a couple of weeks after the surgery, I did an MRI biopsy of the weird stuff in the other boob. Luckily the other boob was deemed not malignant, but when they dissected the mastectomy tissue, they also found 4 spots of invasive cancer, which I guess was kind of unexpected.

I do not get anxious about this kind of stuff because I figure if my body is trying to kill me, it's going to try to kill me, so why waste time worrying about something that I cannot control? Anyways, if I were in your situation, I would probably choose the mastectomies because I would rather maximize the chance of getting rid of the cancer since it is possible that it could be hiding somewhere and get missed due to the dense makeup of your breast tissue that is obviously not something anybody has any control over. I also have dense breast tissue.

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Jan 28, 2021 09:38PM Dani444 wrote:

I am sorry you are going through this. I was diagnosed at 46 with ILC after not getting my screening mammograms, but I can’t beat myself up over that. ILC is hard to imagine, and I had 3 different measurements between US, mammo, and MRI. With MRI being the closest. I felt like the decision between lumpectomy v mastectomy was really stressful. In the end a radiologist on the tumor board felt my tumor was 4.7 cm. My breast surgeon then said I needed to have a mastectomy. My tumor ended up being 4.8 cm as you can see in my signature. I went with a UMX with immediate reconstruction because we thought my nodes looked good on imaging. My first mammogram on my remaining after dx resulted in a biopsy. My breast surgeon wanted alternating MRI and mammogram every 6 months. So in the end I went back and had a prophylactic of my left breast done. I wished soon after the UMX I had done both. It is of course a very personal decision and I knew that the prophylactic side would not increase my overall survival, but it helped my anxiety with imaging. I wish you the best as you make your decision. You will make the one that is right for you along with the information you get from your team.

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 Surgery 8/19/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/18/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 29, 2021 09:49PM OnTarget wrote:

Sure! In my case, I was diagnosed on the left and told that a lumpectomy would be disfiguring.

Then a breast MRI showed 2 BIRADS 4 items on the right plus another item on the right.

I immediately told my surgeon I wanted a double mastectomy. Get those cancer factories off!

She said she wanted to discuss it with me first, and that I needed a biopsy on the right. Obviously she wanted me making an informed decision, not a panicked or frustrated choice.

Unlucky for me, they found ILC in one of the tiny items on the right. My surgeon said that my inclination for BMX was good and we moved forward.

This choice was great for me personally, but it is permanent and disfiguring. My advice is to choose what will make you happiest in the end. Don't sacrifice your outcomes because you are fatigued in the short term. Research and make an informed decision.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. 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 Surgery 2/14/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery 3/29/2020 Reconstruction (right) Surgery 11/6/2020 Reconstruction (right): Tissue expander placement Surgery 5/31/2021 Reconstruction (right): Tissue expander placement
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Jan 30, 2021 09:10AM atchboo wrote:

Thank you all. I am waiting for the Radiologist's report from the ultrasound as she will state how many biopsies she is planning for the MRI guided biopsy, right now she said 2 in the left and one in the right. Once I see that and know my surgeon has also I will sit down with her and discuss all my options including DMX. I want to make an informed decision. Even though I am leaning a certain way and probably still will be leaning that way even after speaking with my surgeon, at least I know I took in all the info first. Your advice and personal experiences are most helpful and appreciated.

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