Struggling to decide - mastectomy or WLE?

Alice123

Hi,

This is my first post here after days of reading, reading and more reading. There are so many personal experiences to learn from, many of you have already been a great help to me.

i was diagnosed 11th August with IDC, 14mm, grade 3. I know so far that it is 100% estrogen+ and 20% progesterone+ but no other results back yet. I have been advised that I can opt for either a wide local excision OR a single mastectomy, and that really it comes down to what I feel most comfortable with. Surgery is booked for 29th August and I am REALLY struggling to make a decision. I know no-one can make it for me, and I'm not expecting anyone to be able to tell me what I should do, but I would really appreciate some input. I'm 44 and have a 7 year old son and I just want to make the best decision to make this thing go away.

BarredOwl

Hi Alice123:

I believe wide local excision ("WLE") is also referred to as "lumpectomy." Many people find this post from Beesie to be helpful:

Lumpectomy vs Mastectomy Considerations (Jun 20, 2013 post from Beesie

https://community.breastcancer.org/forum/91/topics/806452?page=1#post_3598134

Good luck!

BarredOwl

debiann

Apparently statistically there is not much difference in overall survival between mx and lx with rads. But for some, it's hard to convince your brain of that fact and just getting them removed is the more reassuring thing to do. I'm not suggesting it's more medically necessary, but for some it is more mentally necessary. If keeping your breasts around is going to increase your worry, then mx is a good option.

For me, having an mx meant I could skip rads. That was a big part of my decision to do mx. I was truly grateful to be able to forgo radiation.

I did double mx with immediate DIEP recon. The new breasts are very natural and I have regained a lot of sensation.

Good luck to you. Remember there is no right choice, just what feels right for you and your circumstances.

Nancy2581

The other thing you could consider is to do the lumpectomy and further down the road if you want a masectomy you can. I know that means two surgeries, but once you have the masectomy there is no going back. I did a lumpectomy and my tumor was much bigger than your's. My surgeon did an excellent job. Yes I did have to do rads, but I'm ok with that. Also even if you have a masectomy there is no guarantee you wouldn't have to do rads. Most likely not in your case though. Reconstruction could be difficult or not so much. So many things to consider and Im sorry you find yourself here having to deal with this.

Nancy

etnasgrl

I choose a lumpectomy, followed by radiation. I am 100% happy with my decision and have zero regrets.
The lumpectomy went perfectly. I was home the same day and only in mild to moderate pain. I didn't need the pain killers prescribed for me. I just took Motrin and was fine. Other than the scar, I couldn't tell that I had anything done. I am fairly large chested, a 42D, so maybe that's why, but I noticed no difference in size after the lumpectomy.
Radiation went very well also. I finished in February, so I still have some areas on my skin that are not totally healed, but I have no open wounds or painful areas. (Mostly just brown spots from the radiation.)

My reason for choosing lumpectomy over mastectomy was pretty simple. I didn't want to lose my breasts, if at all possible. I did as much research as I could and asked my oncologist a ton of questions. After finding out that there really is no difference in recurrence rate/survival rate between lumpectomy and mastectomy, that sealed the deal and I moved forward with the lumpectomy.

Wicked

My decision is being made for me because both breasts are loaded with LCIS in addition to the ILC in the left breast. MRI lit up like a Christmas tree with multiple "areas of enhancement." I am too difficult to monitor as a result. ILC was found during the excisional biopsies (essentially lumpectomies) for the LCIS. It never showed up on mammogram. Since you only have issues with one breast and they think lumpectomy is a good option, you might want to consider it. One thing I can tell you, the lumpectomies were really easy for me, and I had two done at the same time, one on each side.

Alice123

Thank you all so much for your replies, and especially that link, BarredOwl.

Yes, WLE is a lumpectomy, and my surgeon has explained that there is no benefit it terms of overall outcome for one over the other. it comes down to my head space.

On the one hand, because lumpectomy is a perfectly viable option, it makes the mastectomy sound extreme. (By the way, he'll only do the affected, left side). But my head is struggling with being told that it is a grade 3, fast-growing lump, and despite being told that it has still probably taken about 18-24 months to get to 14mm, and despite explaining to me all about doubling times and cancer cells, I'm fearful of having to back to have more taken if he doesn't get clear margins, delaying the start of probable chemo or whatever post surgery treatment is involved. i have a friend 5 years out from a very similar diagnosis, who wanted mastectomy but ended up having lumpectomy, and she had to go back a second time to get clear margins, and she says to this day she wishes she'd just had the breast removed.

My initial reaction was immediate. Just take the breast. Apparently that's an almost guaranteed, universal response to a breast cancer diagnosis, so both surgeon and breast nurse were very keen that I take time to breathe and consider my options. I know that I'm fortunate to be given the choice. But it is a hard choice to make.

Worry about future mammograms etc if I have a lumpectomy has been talked about. But for those who have had single mastectomies, do you find you are just as concerned about your remaining breast anyway? Does that worry really get taken away with the breast?

Lisey

Why would he only do the one side? He has an obligation to do both for you if you want to be symmetrical and even. I chose a BMX, even though I had only 1 small lump, because my breasts were very dense and the mammograms missed my tumor 4 times!! I'm only 41 and have a 7 year old, so the idea I had these breasts, cystic and dense (which leads to a greater chance they will go to BC) was huge for me. I took them both off and am flat and fabulous now.

Most of the uniboobers I know end up removing the second one a few years down the line and are typically thrilled to have gained symmetry.

I think you need to push back on your doc... that's shitty of him to refuse both.

Alice123

Maybe I should re-phrase that. His recommendation is to focus now on the side with the issue, and I'm OK with that and very comfortable and confident with him and his reasoning. But it is interesting what you say about uniboobers (love that!) and symmetry issues. I feel as though symmetry is going to be a thing of the past for me anyway.

My breasts are dense too. This lump feels very obvious and is clear as day on the ultrasounds, but doesn't show well on a mammogram.

We've talked about reconstruction. That's not on my radar right now but I accept it may well be further down the track.

debiann

I had lx first, margins were close, then chemo, then mx. I could have had a second lx, but had a lot of time to think about what fit me best and it was mx-both-for symmetry. If you want both and your surgeon refuses, see another surgeon.

Alice123

No, I don't want both, or another surgeon. My decision revolves entirely around the choice between a single mastectomy or a lumpectomy.

debiann

It's a hard decision, but most who have been through this can describe a time when one option just started to feel right for them. I hope this time comes soon for you. Good luck with your surgery.

ChiSandy

Mine was 1mm smaller than yours, Alice, and strongly ER/PR+. Grade 2, though you should ask for the individual components of your Grade 3 classification (a “mitotic rate” of 1 indicates slow growth). But growth rate (indolence vs. aggressiveness) influences adjuvant treatment more than it does extent of surgery. At your age, you would definitely be offered tamoxifen and some sort of ovarian suppression; chemo would depend on what your surgical path report says and degree of node involvement. And if it’s HER2+, herceptin would be added--which requires chemo first. If it’s HER2- and nothing else about the tumor’s profile changes between now & the surgical path report, because of the size of the tumor you will likely have a sample of it sent for OncotypeDX testing to determine whether the risks of chemo outweigh the benefits or if it would even work (at your age, with a long potential lifespan ahead of you, they might err on the side of prescribing it). As to radiation, having a mastectomy doesn’t guarantee you can skip it--positive nodes or location nearer the chest wall would necessitate it.

I chose lumpectomy, knowing the overall survival risk was exactly the same. For me, it was an easy same-day surgery from which I recovered completely, with no visible asymmetry, just the faint scar 11 mos. later. (I have large fatty breasts and the tumor was “high & outside,” as they say in baseball). As others have said, you can always revisit a lumpectomy, but a mastectomy is forever.

bikefam

I am a "uniboober", as you call it. I had two lumpectomies, and then when they didn't get clean margins even on the second one, I had a mastectomy-3 surgeries within one month. I recovered very well from all three surgeries. I asked about taking the other one, but I had non-invasive DCIS, so the doctors felt there was no reason to. It's only been 1 1/2 years, but I don't really worry about the other side. I had delayed reconstruction (implants) and that was much more difficult than the lumpectomies or mastectomy. It must be something to do with me, because I had to have two emergency surgeries-first my tissue expander poked through my skin and later, my implant ruptured. My PS had never seen either happen. So that will probably not happen to you. Some thoughts--I had no regrets loosing my breast. Some women do. My implant side does not look alot like my native side, but it's growing on me. All together, I had 7 surgeries in 14 months and hope I'm done. I'm glad I had the mastectomy and didn't need radiation or anything, but the reconstruction was difficult. If I had a lumpectomy, I would not have had to do that. But as Debiann said, one decision is right for you and every woman is different. Good luck.

Lisey

With dense breasts, there is a six-fold risk in getting BC... that means your other breast is six times more likely than a non-dense breast to get BC as well... If you don't catch a new tumor in time = because it's hidden via mammograms, then you risk your life down the road. Personally, with dense breasts and knowing they are ticking time bombs, I wouldn't want to keep one, even if it's currently healthy. Also, while this study only is regarding mastectomy vs. lump&rads, it shows that your younger age is a factor to consider. Plus remember there are complications with radiation as well if you do a lumpectomy. http://www.breastcancer.org/research-news/best-surgery-for-early-stage-may-depend-on-age

Lisey

by the way, Uniboober is a term used by uniboobers themselves on the flat and fabulous facebook page. They typically aren't reconstructed, but have 1 boob and that's it.

Beesie

Lisey, the 6-fold risk was based on one study and applies specifically to post-menopausal women who have extremely dense breasts (category 4 density) and compares their risk to that of other post-menopausal women who have fatty breasts (category 1 density). Other studies comparing these groups put the risk level at more in the range of 3 times to 4 times the risk. Versus the 'average' post menopausal woman (as opposed to just those who have the lowest breast density), those with extremely high density have about double the risk.

The 6-fold risk figure is quoted everywhere, but it's almost always misquoted.

Breast density really only becomes relevant as a risk factor for women who have higher than normal breast density all their lives and the high level of density continues well into menopause (when for most women, density starts to decline). The fact is the 75% of all pre-menopausal women in their 40s have either heterogeneously dense breasts (category 3) or extremely dense breasts. The percent is higher for women in their 30s and even higher for women in their 20s. So high breast density for pre-menopausal women is actually normal and expected. And when you look at the average breast cancer risk levels for women in these age groups, these figures already incorporate the fact that the vast majority of these women have high breast density.

Edited to add/clarify: That's not say that younger women with dense breasts are not higher risk than younger women with low density breasts. But the 10-year risk for women in their 40s is 1.47%, and that already includes the 75% of women who have dense breasts. So if we were to separate out the high density women from the low density women, it might work out to something like a 2.0% 10-year risk for the women in their 40s with the highest density vs. a 0.50% risk for the women with the lowest density. That's a 4-fold increase in risk for the highest density women, but it's still only a fraction of a percent risk per year.

Breast density does impact screening - which is why mammograms aren't often done on young women, even when they present with a problem. But when it comes to an increase in breast cancer risk, density comes into play for post-menopausal women who have had years of consistently above-average density.

I'm not on my computer so I don't have my bookmarks, but I'll try to find and add some links with more information.

Alice, I'm a uniboober who is almost 11 years out from my surgery. I had no choice about the UMX - too much DCIS in too small a breast - but I'm perfectly happy with my decision to keep one natural breast. I know many other uniboobers who are happy with their choice. Some do go back and remove the second breast, but most don't. Of course we don't usually hear from them, because they have no reason to return to this site. We only hear from those who had the UMX and return here when they decide to have the second surgery. But they are not the majority. Good luck with your decision!

Edited to add: The "areyoudense" website is often recommended by women on this site, but I find it is full of misinformation. I prefer this site: http://www.breastdensity.info/index.html#

debiann

I did a double my mainly because I was reconstructing and I wanted them to look the same. The PS did offer to do a lift on the noncancer side if I chose to keep it, but that would still mean losing sensation to the nippel and increase the chance of scar tissue and lumps which would mean more scans. I figured it was easier to remove it and start over than to try to "fix" it to look like the other one. It was pretty saggy.

Logang

I am currently a uniboober. I want both removed, but my surgeon wouldn't do both at the same time. I am scheduled for a left prophylactic mastectomy in November and will have tissue expanders placed. I have very dense breasts and hated the breast MRI!

Alice123

Thank you all so much for your input, all of which has been helpful in some way or another. Thank you for sharing your experiences. ChiSandy, yes, my surgeon has already said I'll be looking at Tamoxifen long-term. Beesie, your comments, particularly about women comfortable with their decision to have unilateral mastectomies, have been especially helpful to me. Currently I'm leaning towards my initial thoughts to just take the breast off. The thought of not getting it all with a lumpectomy frightens me.

Anonymous

HI, I'm one of the ones who had it all: lumpectomy, which was really the excisional biopsy, and then rads after chemo, followed a year later by a BMX. No one has yet mentioned the loss of sensation most experience post BMX. If that is important to you, then weigh that into the decision if you can. I don't regret my treatment options and ultimate choice, dense breasts and all, but I have no sensation in my breasts or nipples anymore even though I had nipple sparing surgery. All nerves were cut and they don't usually regrow, so I've lost all sensation, which is a disappointment in my sex life.

I know one previous poster here said she's regaining sensation but that's the exception, and if you do get some back after years, they aren't the same as before surgery.

For me trying to save my life was a better choice than worrying about my sex life, but it has been disappointing at times. Not easy sometimes.

Claire in AZ

BarredOwl

Hi Alice123:

I wanted to reiterate the point above that there are uni's who are very comfortable with their choice, and Ariom, though she no longer posts, comes immediately to mind.

https://community.breastcancer.org/forum/82/topics/827945?page=1#post_4286798

This website founded by a member of Bc.org includes more personal stories and photos, including some uni's with no reconstruction, as well as practical information:

www.breastfree.org

Best,

BarredOwl

Alice123

BarredOwl, thank you. Very helpful post and links.

My concern about mastectomy is that I will be lopsided and uncomfortable (I'm a D cup). I'm also conscious of the possible benefits of radiation after lumpectomy. But I balance that against worrying that my grade 3 IDC is spiralling out of control in there and that he might not get clear margins and need to go back in and take more (which must of course then delay the next phase of treatment). He aims for a good cm margin.

Hearing from other women who have not regretted their decision to remove one breast, even if it hasn't always been comfortable, gives me some confidence. I'm aware of course that someone else's experience won't be my own and I am flip-flopping on this like crazy just now. But reading about them helps me and as someone else above mentioned, I think that one option will begin to sit better with me than another.

I also plan to call my breast nurse tomorrow to talk with her about this.

Beesie

Alice,


There is one line in your first post that I think is important to address. You said "I just want to make the best decision to make this thing go away".


So here's the thing. The real risk from breast cancer is not the cancer in the breast; the real risk comes from cancer cells that might have broken away from the primary tumor in the breast and entered the lymphatic system or the bloodstream, and traveled from there into the body. The problem is that in cases where this happens, it usually happens well before the surgery and in fact it usually happens before the patient even knew she had breast cancer. Most breast cancers develop in the breast for years before they become detectable, and that is when this first step of progression often occurs. This is why, whether you have a MX or a lumpectomy, being highly ER+, it's certain that it will be recommended that you take Tamoxifen. Similarly, if your pathology or Oncotype test indicates that chemo would be advisable, this will be the case whether you have a MX or a lumpectomy. And if it turns out that your tumor is HER2+, then Herceptin will be recommended, regardless of the surgery you had. These treatments are given to attack and kill off any rogue cancer cells that might have escaped into your body before your surgery, which means that the type of surgery you have won't affect these recommendations. And this why, as others have pointed out, there is no difference in survival between a MX and a lumpectomy + rads.


All that to say that if your objective is to "make this thing go away" and if your concern is that your grade 3 cells are spiralling out of control, unfortunately a MX won't be any better than a LX. There are other reasons why you might prefer to opt for a MX but as you are making this decision, it's important to understand that a MX is a localized treatment, whereas the real risk from breast cancer is the risk of distant metastasis.

Alice123

Thank you Beesie. What you say makes a lot of sense to me. I was able to speak to a wonderfully helpful Cancer Society counselor today and she talked about making a 'durable' decision. I think I may have arrived at my decision.

BrooksideVT

I couldn't decide. Lumpectomy? Mastectomy? Double?

Knowing I could always go back and have the mastectomy (yes, it would be covered), I opted for the lumpectomy, considering it an excisional biopsy. Pathology was good, and by the time I had the surgery, I'd read all the mastectomy posts on this site and was very, very happy I had, as there can be significant side effects with the more extensive surgery.

Miles

What is a 'durable' decision? What did the counselor say that helped you decide?

BethL

I have little to add to what others have said other than have you had any genetic testing? I was diagnosed in 2005 and had lumpectomy and rads. Was tested for BRCA and was negative. Ten years later was diagnosed again and had genetic testing again, since more has been discovered since 2005. Turned out I am positive for chek2. Had I known that 10 years ago, I would have chosen bmx to decrease my chance of a new breast cancer. If you haven't already, ask to be tested. That may make your decision easier. Originally they tested me because of my age..38. No family history.

ruthbru

As for me, I had a lumpectomy (and am grade 3 too.....radiation mops up any stray cells still in the breast & if they are or may be already out of the breast......then chemo will be recommended no matter what kind of surgery you choose). My thought was that if I wasn't happy, I could do a mastectomy later but once my breast was gone, it was gone forever. As time has past, I am even more glad that I made that choice. This is just me, but I would have had a hard time being flat, but the more I have learned about the problems with reconstruction, the less I think that I could ever go through that process (and it is a process, not a one shot and you're done type of thing). I also wanted as quick of a recovery time as possible, with the least chance of complications (which, like any surgery, the more extensive the surgery, the more chance there is of that). Radiation, for me, was the easiest part of the whole treatment. I had no bad SEs then or later. That breast actually looks 'perkier' than the other one. A friend of mine had BC about 35 years ago. Back then the only choice was a mastectomy. One reconstruction became widely available, she did reconstruct. She is a surgical nurse, so has seen the whole thing from both sides of the operating table. When I asked her advice, without skipping a beat she said, "If you have a choice, go with a lumpectomy!!!"

amylsp

My cancer breast is also a bit smaller and 'perkier' than the healthy breast. My BS told me I could qualify for a reduction and lift of the healthy breast, but I am so done with surgeries. It honestly doesn't bother me and is barely noticeable under clothing wearing a bra. And that's after three surgeries!

ChiSandy

I’m a 38 I, and as long as I can still find cute bras that fit me, I see no need to get a reduction for perfect symmetry, until and unless I eventually need mastectomy due to local recurrence. The seroma that formed in the tumor cavity actually made my R breast, which had been the smaller one, about equal to the L (healthy) one.