Mastectomy vs Lumpectomy with a Lobular diagnosis

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.

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).

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

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.

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

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?

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.

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

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.

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.

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