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Topic: Mastectomy vs Lumpectomy with a Lobular diagnosis

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

Posted on: Jan 28, 2010 08:25PM

somersher wrote:

Would anyone share their decision making process with me concerning whether to have a mastectomy vs lumpectomy, and if mastectomy did you do bilateral due to lobular's tendency to recur?  I had a lumpectomy three weeks ago but the margins were not clear, and I also had micromets.  Dr says no need to remove axillary nodes and the plan is to do a wider exision, but I'm getting scared.  Can anyone offer advice and/or experiences along this line?  Many thanks

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May 31, 2018 05:44PM SLL101984 wrote:

What were the deciding factors when you were discussing chemo or not? I know some people don’t really have a chance and will clearly benefit from it but for those that fell into kind of a gray area, how did you decide?

I have a BMX 10 days ago and 5 nodes were taken, all negative. I also had genetic testing come back....negative. I am only 33 so I feel like they may want to be as aggressive as possible with me, of course if I may benefit from it. I am still waiting on my oncotyoe number, so hopefully it will come back low and I won’t fall in that “iffy” area.

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 31, 2018 07:22PM gkbuser wrote:

it is a tough decision for sure. Luckily I was not in the iffy zone. I was in the low zone so they didn't recommend it. I have a friend that was in a different situation though, she was 30 had micro Mets had a bilateral mastectomy and was in the iffy Zone. The doctor said he would do it if she wanted but didnt recommed it. This is at a large National Cancer Institute. His reasoning was that there's not enough evidence to show that all the side effects of chemo will benefit that much. I think for some women it helps their peace of mind. For my friend I think she was also relieved not to have it because she felt like chemo would tear down her immune system. Do you know your tumor grade? It might be on your pathology report should be a 1, 2 or 3. Also is there a strong family history of the breast cancer? Also do you know the percent of ER PR positive? I think some of those additional factors may be talking points with your doctor. Good luck with your decision I know these things are really hard. Bless you

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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May 31, 2018 08:48PM Lula73 wrote:

gkbuser- ditto what was said earlier. You also have stage 1a, no nodes, low grade which ups your odds significantly. When just about any of these sites post survival stats, they are overall survival stats meaning death for any cause, not specifically from BC. Since overall the vast majority of BCs occur in older women (60+) those survival/death numbers get skewed a little more as humans over age 60 are closer to end of life by all causes as compared with someone younger (in their 30s/40s).

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/3/2018 Femara (letrozole)
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May 31, 2018 09:53PM RenoNV wrote:

Hi SLL101984

I'm glad to see another post here ... I was dx 3 weeks ago with ILC in my right breast from stereotactic bx . I saw my BS last week who spent time explaining all of the different options to me .. Ive had alot of time to think and discuss with my husband who is supportive in whatever decision I make .. BS did ordered an MRI and shows no disease in lt breast ... However, I am still planning on a double mastectomy with reconstruction ... At 66 years old, not only do I not want to be facing another surgery years down the road , but the stress of mammos , Ultrasound and MRI, and biopsies have taken a huge toll and I just want to go on with my life and not have that shadow over me every 6 months and have some peace of mind ..I have my appointment tomorrow with my PS .. I see you had your BMX and TE's done about a week ago ... How are you doing ?? How was your surgery ? Making the decisions in this unwanted journey is hard enough, but everyone needs to do what is right for them ..


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Jun 1, 2018 08:14AM SLL101984 wrote:

Reno- it was a tough decision for sure, but being young and otherwise healthy I wanted to be aggressive and I tried to make a decision for down the road. While a recovery from a lumpectomy would have been much easier and shorter, I more than likely would have had to have radiation (m-f for 6 weeks), and possibly chemo. And then not to mention all the follow up scans and check ups, and I don’t think I’d ever be able to relax, and constantly think it’s coming back! So I opted for a BMX (was able to have nipple sparing). I know it’s does not lower my chances to zero chance of coming back, and I know I’ll still be watched very closely, but i know ive done everything I can to make that chance as low as possible. My lymph nodes and margins ended up coming back negative and clear. My genetic testing was also negative! Hopefully chemo is off the table for me also, waiting on oncotype number. But back to the surgery, the recovery has been much easier than i expected. I have been blessed with no complications and relatively low pain. I had surgery on Monday may 21, and by Thursday night I was on Tylenol only. I still have two drains and those are more annoying than anything. I have not started to fill the expanders yet so I’m sure those will get bothersome but right now I forget they’re there. I wish you luck on your journey whatever path you choose

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 1, 2018 02:08PM - edited Jun 1, 2018 02:09PM by Meow13

Apparently, all lobular invasive is not the same. In my case, the tumors were compact less like typical lobular. I think they are getting away from classifying cancer from the region it is found in but look at other characteristics of the tumor. And now gene testing to better classify.

I had 2 small tumors and the tumor board pushed mastectomy. As it turned out, just the very small pieces of tumor were the only signs of cancer. Everything was else was normal, I would not have had that information, for sure, if I had not done the mastectomy. As a result, I required no radiation just hormone therapy.

The MRI pretty much confirmed everything found in pathology. The suspicious area on ultrasound was found to be normal on pathology, MRI did not find that suspicious area only the tumors and the size was accurate. This isn't always the case.

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Jun 1, 2018 03:26PM Zenmushroom wrote:

I am a 30F. Stage 2. Tumor size 2.5 cm. Her2+ Est+ Proj-. Invasive Ductal Carcinoma. Did a lumpectomy.

I don't know if this response will help you, since I am IDC and you are ILC, but maybe it will.

I was also freaking out about what to choose, because doctors wouldn't tell me their preference and I only had two weeks to make a decision. I did a lot of research and found that Lumpectomy + Radiation has almost exactly the same Recurrence rate as Mastectomy. Doctors tell you it is exactly the same, but I think recurrence is slightly less likely with mastectomy (but only by like a few percentage points). And the difference between the two is so small it's not statistically significant.

With all the stuff I read, I found that the hospital recovery time is much shorter for Lumpectomy. Recovery for Lumpectomy takes days. Recovery for Mastectomy takes weeks. With Mastectomy they also are more likely to have to add drains to drain fluid, and for there to be other problems after surgery like lymphodema. (Although of course having to do weeks of radiation kind of nullifies this benefit).

I also found that lumpectomy patients had a higher rate of survival than mastectomy patients. Part of this simply because people who are more likely to do mastectomy are also more likely to have a larger tumor, or be in a later stage of diagnosis. But there are those out there who abide by the school of thought, less is more, the less dramatic changes you make to your body, the better.

I also didn't want to have to go through the whole turmoil of plastic surgery. Part of this is because I was having some insurance issues and issues with continuity of care. But I also really don't like the idea of having an implant for the rest of my life, of having one boob that is dramatically different from the other, one boob I may not be able to breast feed with (if I have children), boobs may change shape from one another over time and then I have to get plastic surgery again to correct this. If you have an implant I think you have to change them out once every 15 years (so this means more surgery).

Also, after the mastectomy, doctors may potentially have to put an expander in your breast and keep it there for months. So that meant I'd have to get more surgery while I was doing chemotherapy, and I didn't want to do that.

One of the supposed benefits of mastectomy is that you get to skip radiation. But some people find out after doing the mastectomy that the STILL have to do rads.

So as someone who is a minimalist and a naturalist, I decided that I'd rather just do the lumpectomy, than do something as major as a mastectomy and then potentially discover later that I STILL had to do rads.

Hopefully I made the right decision. I guess with time I'll see.

And I hope this helps.

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Jun 1, 2018 06:51PM Meow13 wrote:

I also considered reconstruction and was very happy diep could match the uneffected side beautifully. A 30F might be hard to match and the additional surgery to boot. Yes there is no same answer for everyone. Good luck with your treatments.

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Jun 8, 2018 02:28PM Momine wrote:

gkbuser, can’t get the article to download, but ... ILC is DXed at a higher stage than IDC, on average, because it is sneaky. So if you compare all IDC with all ILC, the stats will be skewed

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Jun 20, 2018 08:20PM macmomma wrote:

That's a great article. Thanks. Doesn't really help me with my decision, though!


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Jun 23, 2018 01:15AM macmomma wrote:

So, here's a question for consideration, and I'm going to ask my breast surgeon if it's feasible. Let's assume that I'm planning a lumpectomy with sentinal node dissection. I want to ask the surgeon to do what I'm terming "scatter biopsies" of the contralateral breast. Like maybe 20 biopsies while I'm under anesthesia for the lumpectomy. They could do frozen sections during the surgery, but could also send the samples for full pathology. Here's the benefits/considerations:

1. multiple biopsies are less risky than double mastectomy

2. the contralateral biopsies could not be more INACCURATE than MRI

3. If you're really on the cusp of trying to decide on prophylactic mastectomy on the contralateral breast, this might be a reasonable compromise between the "black box" of doing nothing and the more extreme option of just going to contralateral mastectomy.

4. If the primary (first identified breast) had bad margins or nodes, and you decided to go to mastectomy on the primary breast, you would have more information with which to decide on the bilateral/prophylactic


What do you all think?

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Jun 23, 2018 08:55AM SLL101984 wrote:

I’m sorry but not 100% sure I’m fully understanding your post. Is there a reason you want to do biopsies all over your breast?

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 23, 2018 09:08AM - edited Jun 23, 2018 09:09AM by Lula73

macmomma- I'll offer the same advice a very wise radiologist who I've known for 30 years gave me: have all the information possible BEFORE going under the knife. Wait for the MRI and be certain. Wait for genetic testing as well. Once you have all Ithe information you can make an informed decision and only go under once for removal.

Blindly taking biopsies would be more inaccurate than the MRI.The MRI potential for inaccuracy is it can pick up things that aren't malignant which can only be determined by biopsy (usually mri guided) of a specific area. Using a shot gun approach to biopsy when we're dealing with cancerous areas that can be as small as 2mm may (and likely will) miss it. I know MRI won't be able to show much on the one breast due to the biopsy trauma...but the other breast wasn't affected, right? Seems like they could do it just on the one to give you answers to there. Are you having genetic testing done? It is ok to wait for those test results to come back before deciding a treatment path. Don't let anxiety or anyone else rush you.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/3/2018 Femara (letrozole)
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Jun 23, 2018 11:35AM Cindymb wrote:

I am scheduled for a lumpectomy of my left breast. The right one was what my nurse navigator called "messy". Different little things showing up on US. My MRI i had done was very good at identifying details on the benign things going on in that right breast. I also had genetic testing. Nothing showed evidence of me needing a biopsy on the right. But at least the MRI will be available for future check comparisons.. does anyone know if i will be getting 6 month US checks after my surgery?

Dx IDC
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Jun 23, 2018 12:05PM SLL101984 wrote:

I was told if I did the lumpectomy route I would get a mammogram and/or ultrasound alternated with mri every 6 months.

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 24, 2018 07:40PM macmomma wrote:

biopsies on the contralateral breast because MRI and mammogram are not accurate at detecting ILC. If you are already getting the lumpectomy, it seems a less invasive/aggressive option than prophylactic double mastectomy (which many women do because of fear of cancer in the contralateral breast), but a more sensitive option than mammogram or MRI alone.

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Jun 24, 2018 07:43PM - edited Jun 24, 2018 07:44PM by macmomma

Absolutely--I'll have the biopsy on the contralateral breast--it's already scheduled. And the genetic testing (BRCA, etc) is already done--we are just waiting for the result, but after that if I went with lumpectomy, the biopsies on the contralateral breast would give an added degree of information. And I'm not thinking of scatter "point" biopsies. I understand that the concept of biopsy without a target is sort of out-of-the-box thinking. I'm talking about like they do with geological samples--long "core samples" that are needle sized, but would sample a generous cross section of the breast from two or three different angles. Actually, I'm not even sure that the technology exists for them to do this--just thinking.

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Jun 24, 2018 08:18PM macmomma wrote:

So, it's interesting. I've been doing lit search on the question about the contralateral breast biopsy. Most of the literature is older--like from the 1990s. I'm speculating that with the advent of MRI, they thought they didn't have to do the biopsies as much, but now that we find MRI isn't as good at picking up ILC, I think we need to revisit the issue. I'm not finished with my search, but I'll share the links here to what I've found so far. As I read through, what I'm gleaning is that random contralateral biopsy isn't much use except in ILC.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1250789/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1190744/

https://www.sciencedirect.com/science/article/pii/S0039606005800303

https://www.researchgate.net/publication/14103113_Routine_Contralateral_Breast_Biopsy_Helpful_or_Irrelevant

https://www.researchgate.net/publication/14831116_Role_of_contralateral_breast_biopsy_in_infiltrating_lobular_cancer

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Jun 24, 2018 09:48PM Meow13 wrote:

About 1/3 of ILC presents in other breast. 2/3rds does not. But weigh all the information like hereditary factors peace of minds. Clearly, decide for yourself.

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Jun 25, 2018 01:08AM macmomma wrote:

Right. I just find it interesting that before MRI, contralateral breast biopsy was widely discussed, and after the advent of widespread MRI usage, it disappeared from the equation. Despite the fact that they know MRI isn't a really good tool.

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Jun 26, 2018 12:34AM Meow13 wrote:

My MRI seemed to be correct when compared with the pathology from mastectomy. The technology hopeful will continue to improve.

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Jun 26, 2018 01:47AM mrskirby wrote:

I had lobular and found ductal too. I went for mastectomy.. I was afraid I would be back for more surgery in time.

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