Ever wish you'd had a bilateral MX instead of lumpectomy?

ByFaith

My breast surgeon recommended a lumpectomy 3-1/2 years ago and said a mastectomy would be over-treatment. She did, however, give me all the detailed information I needed and was supportive of either decision. I asked her what she would do if it was her or a loved one, and she said lumpectomy.

Since radiation and hormonal therapy (no chemo needed), I've been blessed to be in remission. Still, at times I wish I'd had a full bilateral mastectomy, even though my tumor was 1 cm on one side.

I thought I read recently that if one undergoes the recommended treatment (lumpectomy or mastectomy), the distant recurrence risk for that individual remains the same regardless of which surgical option they chose. However, it would have lessened my anxiety about local recurrence.

Have you ever felt this way even though you've fared well in the years since surgery?

Beesie

Dawn, I didn't have a lumpectomy - I would have but I had no choice about it so I had to have a MX. But I had a single MX. And there has not been a single day when I've wished that I had a BMX. Even though I had a really easy time with the surgery and the reconstruction process, for me I find that living with a reconstructed breast has created a whole new bunch of issues and concerns. I'm coming up to 8 years since my surgery, and over the course of the average year, I probably spend about 30 days thinking about my natural breast (one day a month when I do my breast self exam, the few days before my alternating 6 month annual MRI and annual mammo when I start to anticipate it, and the week or so afterwards while I'm waiting for results). On the other hand, I think about my reconstructed breast virtually every day. It itches, it aches, the muscle contracts weirdly, I brush against it or scratch and notice that it's numb or I lean against something and realize that I'm poking myself in the breast and I don't feel it, etc.... ). It's all 'normal' stuff to me now and most of the time it doesn't bother me, but sometimes it does. And when I do my breast self exams, I have to check my MX side too - because a MX does not mean that I can't develop a recurrence or a new BC on that side.

The grass is always greener on the other side and it's just human nature that we will look over the fence and think that it would be so much easier to be living on that side. As someone who has one foot on each side, living with one natural breast (and a high risk breast at that) and one reconstructed breast, I see the MX as simply trading one set of issues & concerns for another set of issues & concerns. And considering what I've lost with the MX and reconstruction (all natural feeling except surface sensation, all natural movement), I'll take 2 natural breasts any day.

Having said that, of course I recognize that this is a very personal issue and everyone's experience is different and everyone sees it differently.

SelenaWolf

I have never regretting going with a lumpectomy, especially since my risk of metastatic recurrence is greater than my risk of local recurrence (I was node-positive).  The specifics of my cancer made me an excellent candidate for lumpectomy and I did not want to have a mastectomy unless it was clinically necessary.  But that's just me.

PoohBear-61

Hi Dawnsm

I DO feel the same at times ......especially since I had one close margin ( no re-incision recommended either ) BUT I always go back to the stats that say the re-occurrence rates are basically the same for Lumpectomy plus rads. vs mastectomy . And I also always remember this one lady on this discussion board who had a mastectomy but then regretted it after having a local re-occurrence ...Her thought process was that if she would have had a lumpectomy she would have had radiation and it would have killed any stray cells......so .....I remember her story when i start to second guess my choices.

Moderators

Hi

You may also want to check out the main breastcancer.org for information about Mastectomy vs Lumpectomy.

We hope this helps.

The Mods

ByFaith

All extremely informative, insightful and thoughtful responses ... I can't thank you enough, Beesie, SelenaWolf and pooh612.

Beesie: I never thought about any residual effects of a reconstructed breast and my heart goes out to you. No one knows all that BC patients go through after treatment is technically over.

Pooh612: Yes, you reminded me of the woman on the board who had the full MX and wondered what might have been different is she had rads. I remember at time of dx thinking I'd feel vulnerable with MX and no rads.

SelenaWolf: I had very clear margins, so I need to keep a positive outlook like you and stop second-guessing.

Moderators: Thanks for the link to the article. I'm off to go read it. So many times I forget the great volume of information available on this *entire* website ... and not just our discussion boards!

Oh, my sisters, how you always help me. Thanks again!

Racy

I am grateful that I had the choice of lumpectomy and have not regretted it. Every day that I keep both breasts is positive for me.

doxie

I too am glad I still have both breasts. I am very high breasted with a long torso. I need my droopy (though small) real breasts to balance my appearance.

AlaskaAngel

I still have mixed feelings about it, not in terms of risk but just because I ended up with rads necrosis of the lumpectomy breast that is painful to any touch, and because with all the treatment the breasts are truly completely genderless and useless annoying appendages that require yet more radiation by annual mammograms and annual MRI. I'd gladly get rid of them if my insurance would pay for that but it won't, now.

 

(Udderly useless!)

JaneB1

I had a bilateral MX and sometimes wonder if I did the right thing. I had no choice between lumpectomy and MX due to multi- focal DCIS. But I didn't have to remove the good breast. At the time it seemed like the right decision. I was on COBRA and did not know what my health insurance situation would be and thought I had better do everything possible to help myself while I still had insurance.

I am now employed again and might have done it differently if I had faced this with good prospects for long term health insurance. Like Beesie, I find reconstructed breasts fairly uncomfortable and of course there is no sensation. Sex is finally getting back to the new normal but it will never be as nice as it once was.

Still, this is all small stuff compared to cancer. And I guess when I weigh everything, I am still ok I did the double (and it is irrelevant since there is no going back). My tumor was triple negative and there is some recent research that TN has a higher risk of recurrence in the other breast so I may have made the right decision for that reason as well. DH said he would support whatever decision I made but I think he is also glad at this point that I did the double. I guess it's easy to second guess myself in hindsight, though.

bluepearl

I had a mastectomy in 2011 and the other in 2013. The first time, I wanted the other one removed but was reassured that cancer in the second breast was not too common. Well, I won that lottery a second time around. I feel that the mastectomies were the best for me and I don't think I'll consider reconstruction as I have mild discomfort after the first having post mastectomy pain syndrome...so why wake up sleeping dogs. I did have sentinel node biopsy second go which made a big difference in pain level. I didn't want rads because the first was my left breast and worried about my heart which is already an occasional A-fibber. Since I got breast cancer a second time, decided my tissue liked encouraging cancer cells, so got rid of it as best I could. Nothing is guaranteed regardless of your choices, but you do the best you can!

Anonymous

byFaith------I have LCIS, so my situation is very different from yours, but after diagnosis I was faced with a decision about bilateral mastectomies. (I made the decision to do close monitoring and preventative meds, and I'm still doing that 10 years later). Many factors were involved in my decision of course; one was how well my mom has done all these years (27) since her stage 2 ILC--she had lumpectomy, radiation and tamoxifen and has never had a recurrence. She has never regretted the choice she made. I appreciate Beesie's honesty about her experiences with the reconstruction/implants; my husband's aunt said her implants often are cold, wrinkly, and move around. I hear so many posts from those that have had bilat masts/reconstruction and it seems like there are no problems at all, when in reality, there can be many SEs from surgery/reconstruction, some of them long lasting. I think it's good to hear from both sides with the advantages and disadvantages of the different options, so you can make a decision for your own situation. I think we make our decisions based on the information that we have at the time, and that we shouldn't 2nd guess ourselves later.

anne

MsPharoah

Hello ladies,

I have ILC and extensive LCIS. The first BS I saw was adamant that I have a double mastectomy because he said there was too much risk that I had multicentric, multifocal cancer. My first reaction was, " I want these boobs off and, like NOW!". My husband suggested I get a second opinion and if the second doctor agreed, we would go that route. The second BS told me that he didn't have enough information to make a recommendation. He had me do genetic testing and scheduled an MRI. My BRCA came back negative and my MRI showed that there was only a small residual amount of cancer in the bad boob and my good boob was unremarkable. I also arranged to see a PS to see what my recon options were. At our next consultation, the surgeon told me that I " had a small problem, and I should have a small surgery". He acknowledged that I would have to deal with continual monitoring and have the risks of radiation, but he also shared with me the risks of mastectomy, which are not insignificant as well as reminding me that having a mastectomy does not necessarily spare you from radiation treatment. I am glad I made the decision to have a lumpectomy. The surgeon was able to get real good margins and no surprises in my pathology. I may very well have to have a mastectomy in the future, but I didn't have to go that route yet and I considered myself lucky...some women have no choice.

As I tell my husband, "Nothing good is going to happen. We have to make the best choice from a group of really bad choices..". These are difficult and personal decisions. What we should hope is that we don't look back and second guess our decisions. I know I haven't and won't.

MsP

AlaskaAngel

The OP's question didn't mention anything about reconstruction, just lumpectomy vs bilateral MX. (I wouldn't have chosen reconstruction anyway.)

Possibly the younger one is at the time, the more accurately optimistic they can be about the result (at least for a while).

During the year after completion of treatment I was optimistic enough to think that the nice breasts I had would be functional and not painful for at least a few years, but due to treatment and being age 51 by that time, that turned out not to be the case within a very short time.

 

rgiuff

Have never regretted my lumpectomy.  Having that real nipple sensation is very important to me, as well as the fact that I like the shape of my breasts.  And I worry much more about distant recurrence than about it coming back in my breasts so yearly screenings don't really bother me.

funthing42

Everyday since I felt my second Breast Ca same breast. Next week B/L MX for me. I had a 4% chance of  re-occurrence, so this time with Chemo and Surgery who knows. I don't know what type of Chemo I'm having yet or regimen. 

I feel ridiculous.  I should have just trusted my self. Yuk.

ICanDoThis

I was scared the first year. But now, every year I am more and more grateful that I still have the "real deal" attached to my chest. I have come to learn that what I am really scared of - a distant recurrence - can happen, and that cutting 'em off would not help prevent that from happening.

Those of us who are blessed with cancers discrete enough to allow us to keep our breasts should be giving thanks daily - 30 years ago, they still would have scraped our breast tissue down to the bone.

funthing42

So to reply to your thankfulness for having your breast. I see your Her 2 neg. That's what I was first time around. Now a Her2 + Did you do chemo? If you don't mind me asking.

Both times Stage 1 neg nodes 1cm.

I guess this is why it is CA. No rhyme or reason.

Totally sucks ! 

momand2kids

Hi

I am over 5 years out.  Actually, I never considered an MX because in my first meeting with the surgeon she said "there is no clinical reason to have a mastectomy in this case'  I had such a high regard for her that I just went with that---and she was right... she got clear margins, no nodes---- it definitely for me would have been overkill--I did have chemo because I had a "gray area" oncotype-and I would have had that with an LX or MX....

One thing I will say is that due to radiation, the sensation in my LX breast is definitely muted even after all this time.... if just feels different--- 

All that said, I think I made the correct decision for me.... and I have not regretted it so far..... and hoping I won't!!!!

funthing42

Awesome for you Oncotype 22

I'm not sure how even I can make a clear decision. Less than a CM twice.

Now I'm thinking one breast off. Keep other. Chemo . I was told the one should come off because I had radiation.  What the yuk.