Mastectomy Advice

arlva24 · December 2020

Hi all,

Thanks so much to everyone for their continued help and feedback. I was diagnosed on 11/23 with 0.7 cm IDC that is ER+/PR+/HER2-. I had an MRI on Thursday which, thankfully, showed no additional tumors beyond the 0.7 cm tumor. However, the surgeon indicated that she thought that a lumpectomy would be somewhat "disfiguring" where the tumor is (which is 6 cm above the nipple at 12:00 position on left breast), and would make it extremely difficult to get mammograms in the future because of how small my breasts are to begin with. She also thinks that radiation could be somewhat difficult in that area. As a result, she recommended (and said she would only perform) a mastectomy.

Has anyone else received advice similar to this? I obviously only want to do what's best, but I'm a bit concerned about doing a difficult procedure during COVID. The surgeon also said that, because of the small size of my breasts (32A), that her portion of the surgery could be completed extremely quickly and that I should only expect the mastectomy to last 2 hours with no overnight stay. I'm speaking with a plastic surgeon on Tuesday, but my understanding is that I would likely go the tissue expander route.

I would appreciate everyone's advice and feedback.

Beesie · December 2020

A 0.7cm tumor is very small. And the location description doesn't seem to compute - if you are that small breasted, how could the tumor be 6cm above the nipple? That would put the tumor at the very top of the breast, right where the breast meets the chest. I can see that with a tumor that high on the breast, a lumpectomy scar might be noticeable on your cleavage above the line of your bra. But scars fade. However with a MX, because all the breast tissue is being removed, the scar could be put in a less noticeable location. Is it left breast or right breast? Left breast radiation might be more of a concern because of the heart but you would need to talk to a Radiation Oncologist about this - it is not the surgeon's area of expertise.

Of course there may be something unique about your situation, but in my time on this site I can't recall any other situation where a MX has been suggested for such a tiny tumor. If you are not absolutely certain that you want the MX, you should definitely seek out a second opinion from another surgeon.

arlva24 · December 2020

It is the left breast. This is what my ultrasound report says:

"Sonographic evaluation of the palpable abnormality in the left breast at the 12:00 position 6 cm from the nipple demonstrates a heterogeneous 0.7 x 0.6 x 0.5 mass."

It is at the top of my breast near where the top of my armpit is. I do have one unique situation: I have a congenital condition where my ribcage is slightly twisted (pectus carinatum). She seemed concerned about how to point radiation with such a ribcage distortion, and seemed particularly concerned about the impact on the heart.

I am concerned, though, for this major of a surgery for this small of a tumor.

MountainMia · December 2020

I agree with Beesie that a second opinion would be a good idea if you have any questions or doubts. I'm especially concerned that the surgeon indicated she would ONLY do mastectomy. Does that mean she would NOT do lumpectomy? or that she does the mastectomy part and a plastic surgeon does the reconstruction part? Suggesting she would not do lumpectomy is confusing.

arlva24 · December 2020

She said that if I wanted a lumpectomy, I would need to go to someone else. She said that she would only do the mastectomy. Is this normal?

Should I be concerned? One of the things that I was wondering was whether I could do the lumpectomy first just to get rid of the tumor (and avoid major surgery during COVID), and then do a mastectomy a few months later.

I'm just feeling a lot of anxiety right now because it has been so hard to get surgical consults - I've called a number of doctors and several do not participate in my insurance, several have no availability whatsoever, and some are one state over such that I might have to wait 14 days to get in due to COVID. I've gotten all my presurgical stuff now - MRI, blood work, should have final results this week from genetic testing.

Beesie · December 2020

If the tumor is at the top of your breast but near your armpit, I don't see how a lumpectomy would be disfiguring in any way that would be very noticeable. Do you care if the area near your armpit is a bit wonky? And I would think (but admittedly am 100% guessing here) that a Radiation Oncologist would be able to give you rads while avoiding your heart.

Of course, if you would prefer to have a MX, then do it. But if that's not your choice, it's worth investigating further.

Beesie · December 2020

Sometimes surgeons won't give the patient a choice to have a lumpectomy but usually that's with extremely large tumors that the surgeon knows can't be successfully removed without taking most of the breast. In my case, I'd had two large areas removed during an excisional (surgical) biopsy and my breast still looked okay (I was a barely 34B). But there were no clear margins anywhere around either area, so my first surgeon said that a MX was my only choice. My second opinion surgeon, who I ended up staying with, first put me through an MRI, which did in fact show lots of 'stuff' left in my breast. But he said that the 'stuff' (that was actually the word he used) could be benign, so he was willing to attempt a re-excision lumpectomy to see whether he could achieve clear margins. With those MRI results, I realized that the odds were very much against the lumpectomy being successful so at that point grudgingly agreed to the MX. In the end I had over 7cm of DCIS (plus a small microinvasion of IDC) over two areas of my breast.

For a surgeon to refuse to do a lumpectomy in a case like yours, when the tumor is so tiny, is very unusual, and possibly is a red flag in and of itself.

If disfigurement is the issue, then I would guess that your surgeon would also not agree to do a lumpectomy first followed by a MX, because a lumpectomy would require the incision to be close to the cancer, which I expect is the disfigurement concern. With a MX, the incision could be made somewhere completely different. That said, often with a MX the incision is made close to the underarm, precisely because that area is hidden and it allows the SNB to be done through the same incision.

buttonsmachine · December 2020

I'd recommend a second opinion. I don't see how a lumpectomy would be disfiguring, and radiation beams can be highly customized.

It's usually best to discuss radiation with the radiation oncologist, and a plastic surgeon about reconstruction, etc.. Sometimes doctors should not really advise outside their speciality, but they do.

Also, I've had one or two doctors try to sway me into doing what is most convenient for them, not what is best for me. It's too bad, but that can happen.

I hope you find some answers, it's a hard situation. Best wishes to you.

bcincolorado · December 2020

I agree. Go see a breast specialist for another opinion. The choice is yours. After pathology is done if they do not get it all then you look at mx if you need to later but you do not have to do it if if that is not your choice.

LivinLife · December 2020

I agree on the second opinion. I would just add - I was told I could only have mastectomy vs. lumpectomy because I was unable to have radiation due to another medical issue contraindicating radiation. No radiation and my age (58) led the surgeon to say mastectomy was my only option. She did not say she would NOT do lumpectomy tho I do not believe she would have done a lumpectomy. I was ok with that b/c I already decided on a BMX - that surgeon was my second opinion and I trusted her tremendously - still do....

arlva24 · December 2020

Hi all,

I wanted to follow up. I find myself panicking a bit right now because it's quite difficult to schedule a second opinion (I have tried 5 providers) right before the holidays. My tumor is slow-growing and so I do not believe that this is an absolute emergency, but wanted to get other folks' views. This is just so difficult! If I go the mastectomy route, I can have it done 12/31. But I'm just scared of such a major procedure.

Beesy_The_Other_One · December 2020

arlva24, I cannot agree more with the posters suggesting a second opinion, and I would not feel rushed into a surgery you don't want for such a small tumor. I know it's hard not to feel panicky when there's something in you that you want out, but this is not like a bad hair cut where it will grow back. Covid is not helping your situation, to be sure, and doctors are busy at the end of the year because people who've met their deductibles want to do surgeries within the same year. 2021 is just a few weeks away, and if you can get another opinion then, I think it will help you make your decisions with much more information. Best to you . . .

muska · December 2020

A second opinion is always a good thing to do no matter the recommendation.

The small size of the tumor however, does not mean lumpectomy is always the first or best option. There could be anatomical or location reasons that make mastectomy a better option. Additionally, lumpectomy warrants radiation that again may not be recommended in this case for a number of reasons.

I am (rather was) a large breasted woman who was diagnosed with a tiny tumor deep in the breast. I don't remember lumpectomy being discussed as a viable option for more than one reasons, including calcifications that were all over and would be difficult to monitor

Best of luck

arlva24 · December 2020

Hi - I wanted to update everyone. I spoke to another surgeon today. She thinks a lumpectomy is do-able given the tumor position and that it would not be problematic. She then said I could proceed to radiation OR, if I want to avoid radiation, do a full mastectomy once I feel more comfortable and not rushed. What does everyone think? She thought that the mastectomy could be 3-6 months down the road. She said that would not present a problem from an insurance perspective and it would allow the cancer to be removed without making me feeling like I am being rushed into mastectomy. It would also allow me time to get my oncotype score and figure out if I need additional therapy.

Has anyone proceeded in this way (lumpectomy then later mastectomy, without radiation in between)?

Beesie · December 2020

arlva, I'm glad you were able to speak to another surgeon.

I have not done what the surgeon suggested but in my time on this site I have seen many women take this approach. It's a good option if you are not certain about what you want to do - it gives you time and gets you more information, and you don't have to worry about the cancer still being in your breast. Once you have the surgery, you can decide, based on the final pathology and the appearance of your breast, if you want to go ahead with rads. Or you choose to opt for a MX. Seems reasonable.

buttonsmachine · December 2020

arlva, if you are not sure, I think it's good to start with a lumpectomy. You can always get a mastectomy later, but you cannot take back the mastectomy once it is done.

Surgery is forever - yes we heal and move on, but the impact of surgery remains. It's worth taking the time to make sure you're making the best decision for you. I hope that helps. 💕

arlva24 · December 2020

Does starting with the lumpectomy and then doing the mastectomy as a preventative measure present any issues from an insurance perspective? My doctor said it should be covered but I have been worried that insurance would be difficult if, for example, clean margins were obtained during the lumpectomy.

buttonsmachine · December 2020

arlva, I have never heard of people having difficulty from an insurance perspective with that, but it's still a good question to ask your doctor about. Maybe more people will chime in about that too.

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