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Experience with choosing lumpectomy or mastectomy

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Susiemommy
Susiemommy Member Posts: 46

I am scheduled for a lumpectomy with reduction/lift in a short two weeks, and I feel like l am losing my mind worrying that I've made the wrong decision. When I was first diagnosed in June, I was totally ready to have a bilateral mastectomy and just get it over with. But, I was prescribed neoadjuvant chemotherapy, and - over the course of the summer - convinced by my breast surgeon to do everything possible to have breast conserving surgery. I've read the studies and statistics. I know she says that if it made a difference in survival, I wouldn't have the choice. But my mind is at battle with itself. I feel almost certain that there's no way they can get clean margins, so I'll be back in for a mastectomy anyway. Or maybe I'm afraid that they WILL get clean margins, and I'll just be left with a nagging paranoia. On the one hand, I feel like the medical community is saying it's stupid to request a mastectomy when I can have a lumpectomy. Then, on the other, I feel like with my tumor/cancer/chemo response characteristics it's stupid not to. Has anyone else been through this?

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Comments

  • alissat
    alissat Member Posts: 7
    edited December 2020
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    I knew right away that I would have a BMX. I had very dense lumpy breasts & knew I would constantly fret over every future lump & bump. My surgeon talked to me about all my options but never tried to sway me one way over another. We I asked for her advice she would give it but she never tried to direct me towards a decision. You have to choose what’s best for you & what you can deal with in the long run. Best wishes

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020
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    Unlike alissat, I knew I would choose lumpectomy if possible. It was possible for me, and I'm really glad that's what I did. Recovery was easy and quick. I had a reduction of my healthy breast later in the year and that was actually the harder surgery and recovery, though also not very bad. Yes, my breasts are lumpy because of tissue that's been moved, and a bit of scar tissue, and it's a bit disconcerting. But I am getting used to their new feel and feeling less anxious about them as time goes on. Overall, I am really happy with my choice.


  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2020
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    Well, I'm in the third camp - I wanted to have a lumpectomy but I had to have a MX because it was the only way to achieve clear margins (and even then, they were close).

    Take a read through the following thread; it might help you consolidate your thoughts about what's right for you. In the end, that's all that counts - not what your doctors think you should do, not what your family or friends thing you should do, but what you will feel most comfortable doing.

    Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX


    This may seem like a strange way to approach things, but what I learned through this process is that we face many decisions where none of the choices are what we really want. So the way I look at those situations is not to think about what I which option I like best, but instead I look at it from the other side of the coin. If things don't go as planned and there are problems that I have to deal with related to the choice I made, which decision would I regret it the least? Certainly there are potential problems, both short term and long term, associated with having either a lumpectomy (a localized recurrence is the obvious example, although that could happen with a MX too) or a mastectomy (healing issues and the need for multiple revision surgeries, for example). In which situation would you feel better about your decision, even knowing that it might have lead to these problems?

    Good luck with your decision.

  • muska
    muska Member Posts: 224
    edited December 2020
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    I am sure what I am going to say is mentioned on the link Beesie included above, but you may want to take into account factors like overall health of the breasts (any other issues in history?), what kind of monitoring will you need after lumpectomy and how frequently, and your age of course.

    good luck with your decision

  • lillyishere
    lillyishere Member Posts: 775
    edited December 2020
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    We all have different experiences. I was recommended lumpectomy with radiation but I asked for double mastectomy for several reasons:

    1. Lumpectomy comes with radiation and cancer was found on my left breast and I was worried about heart damage from radiation

    2. I imagined myself I would be worried about every pain or breast change if breast tissue was left behind.

    3. I was told I had very dense breasts and it was very difficult to read mammograms.

    4. Another worry, if breast cancer happened once, could have happened again.

    Most important, in my case, I am glad I did it because the cancer was found in both breasts while MRI didn't catch it.

    However, there are many women who go through lumpectomy + radiation and do very well and have no problems. In the end, the decision would be yours.

  • minustwo
    minustwo Member Posts: 13,190
    edited December 2020
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    As you can see SusieMom - it's a very individual choice. There are no right or wrong answers. It's such a difficult decision. Holding you in our thoughts as you review your choices. Please do come back & let us know.

    I was one who immediately chose bilateral mastectomy for many of the reasons stated above. I had call-backs from mammos for 40 years and just couldn't deal with it any more. Also I am a hop up & go person. While many women are comfortable with prosthetics, I knew I would cry every single day. In order to get back even a partly normal life, BMX was the only answer for me.

    Like Beesie - the choice was reinforced in surgery by the margins anyway. Like Lily - they found growths in the 'good' breast that would have had me back again anyway.

  • abigailj
    abigailj Member Posts: 104
    edited December 2020
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    I had cancer in both (ILC in one, IDC in the other) and was offered both options, although lumpectomy would have been major on one side as well all recon options. I chose BMX with immediate DIEP recon (very happy with my outcome, although long recovery) since I didn’t want to have scanxiety and constant worry not to mention big lumpectomy would have meant cosmetic work anyway for me and so for me it was the best choice but only you can decide what is best for you. Best wishes for a successful outcome in all respects.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited December 2020
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    Having done both surgeries, my personal opinion is that the lumpectomy is preferable when it's an option.

    I had local recurrences after my lumpectomy AND after my mastectomy, which led to a chest wall resection, but that's another story. My point is, local recurrences or new primaries can be dealt with.

    But surgery choices after an invasive BC diagnosis will not stop a metastatic recurrence of the cancers we already got. That's just the way it is.

    Everyone must make her own choice, and my advice would be to choose the option that you feel most at peace with, and that you can live with say in and day out, whatever the future holds. Best wishes to you.

  • Susiemommy
    Susiemommy Member Posts: 46
    edited December 2020
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    Thank you all for sharing your experiences. I feel for all of you having had to make this choice. I just don't feel qualified to make this decision. The aggressiveness of my cancer and my treatment thus far seem like things that would make a mastectomy the only choice. Then my doctors chime in with the "no medical reason to" bit, and I'm back at square one. And I just can't wrap my head around how it doesn't make a difference in the risk for metastatic recurrence.

  • moth
    moth Member Posts: 3,293
    edited December 2020
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    I chose lumpectomy. My BS explained my choices and less invasive surgery seemed logical to me. As buttonsmachine points out, local recurrence is treatable, and lumpectomy and radiation has same outcomes as mastectomy in terms of metastatic recurrence. I think systemic treatments (chemo or hormone suppression) have a larger role to play than the original surgery choice & afaik, the current research supports that.

    If I had a time machine & could have cut them off *before* I got breast cancer at all, then I would. But after the fact, I think just removing the tumor is sufficient. Bernard Fisher (the 'father' of lumpectomies) suggested that cancers were either metastatic or not at presentation - but we can't necessarily tell because we can't see a small cluster of cells. I've seen some recent research which again supports this view. That's why on the whole, the outcomes are the same.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited December 2020
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    Susie, as moth said, a time machine or a crystal ball would have been nice.

    You might find this article to be helpful. I did. It talks about the theories of metastatic recurrence, and how often the tumor has seeded itself distantly before it is detected in the breast and surgically removed. Scary, but true. That is why systemic treatment is so important - which you are doing.

    https://www.nature.com/articles/s41416-020-01161-4#Sec24

    As you will find in the article, there is still a lot we do not know about metastatic disease though, so if you feel more at peace with the bilateral mastectomy, that is perfectly okay and I'm not trying to sway you.

    It's hard - none of us should have to make these decisions.

  • socallisa
    socallisa Member Posts: 10,184
    edited December 2020
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    I chose a lumpectomy but later another lump was discovered so I chose a mastectomy.

  • Susiemommy
    Susiemommy Member Posts: 46
    edited December 2020
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    Great article, Buttonmachine, Thank you so much.

  • msphil
    msphil Member Posts: 185
    edited December 2020
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    hello sweetie i was diagnosed while planning our 2nd marriages when i found the lump. After biopsy and 2nd opinions i was told i needed a mastectomy i didnt want to go into this marriage with one breast. But my fiancee at the time said that doesnt make me live you less. I was thinking lumpectomy but oncologist suggested mastectomy was best option So i did.I am this yr a 26yr Survivor Praise God and also ourv26 yr Anniversary..msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast then got married then 7 wks rads and5yrs on Tamoxifen.Positive thoughts that i would make it thru this and lots of Hope..

  • Togethertolearn
    Togethertolearn Member Posts: 224
    edited December 2020
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    I requested but wasn't allowed to get a mastectomy, they brushed it off like I was an idiot for askin. I am disappointed in only being allowed a lumpectomy for two reasons

    1. The breast is now extremely smaller than my other one so I'm lopsided, that bothers my esteem although I wish it wouldn't, I feel deformed and that's so embarrassing to admit!

    2. I don't feel like I did all I could to help prevent it from coming back, more so now as my body cannot tolerate tamoxifen. This is my mind's opinion and may not be factual.

    If any of that helps, great!

    Good luck!

  • Lozz_
    Lozz_ Member Posts: 1
    edited December 2020
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    Hi

    I was hoping for lumpectomy, but MRI showed double the area of abnormality, up to 8cm, than was seen on mammogram/USS, the biopsy had shown DCIS grade 1. So with my smallish boobs it was too big for lumpectomy so I had a mastectomy and no regrets especially after micro invasion was found on final pathology. Good luck

  • mg15
    mg15 Member Posts: 3
    edited December 2020
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    Hi, if I had known my family history I may have proceeded differently.

    1991 Right lumpectomy, went back in for a clear margin and 22 nodes removed. No nodes CA.

    1999 Left side seen hypercells, something like that. Did nothing.

    2003 Left side lesion close to chest wall, lumpectomy, sentinel node, good.

    2019 Left side mastectomy wanted a lumpectomy but the tumor and also the calcium deposits

    were cancerous.

    2020 Jan. 31 Mastectomy. I still have the right breast.

    ALL of the tumors never showed on mammograms none. Only on a MRI OR ULTRA SOUND they showed and once not on the ultra sound at all.

    All estrogen positive and a slow grower. Found out much later that my Father's side had a great aunt, aunt, two first cousins all had mastectomies. My aunt had a metastasis to her liver and died. My second cousin died from breast cancer. All on my Father's side of the family. One breast cancer on my Mom's side but mostly other cancers.

    I had the blood hereditary test for inherited gene that was negative but the family history was over whelming.

    Had two chemos two radiations with all the drugs after care.

    I am on Arimidex to block estrogen. My hair is thinning. Five years on that. ugh.

    I would like to add there were times I believed the doctors that treated me were on their own mission to treat me for their own knowledge. In other words I was on a private test of theirs.

    God Bless you, it can be a hard go but do your homework and always stick up for yourself.

    Mary Grace.



  • cm2020
    cm2020 Member Posts: 530
    edited December 2020
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    I wanted a bilateral mastectomy. I went with a lumpectomy due to Covid. My state had just shut down the week I was diagnosed. No one knew what to expect and everyone was bracing for the worst. So I had a lumpectomy to get in and out of the hospital as quickly as possible and to also not have to face reconstructive surgery this past fall. I regret it. If I had it to do over again I would have the surgery I wanted no matter what.

  • cake8icing
    cake8icing Member Posts: 23
    edited December 2020
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    I had many relatives with breast cancer and so always felt that it was not a question of if, but when would I be diagnosed? So I had lots of time to think about what I would do if it happened. For me, I was honestly always disappointed in my small breasts and felt like why would I take any risk in saving them? So when my cancer was diagnosed in my left breast, and would require radiation if I chose lumpectomy(adding heart risk on top of a mild heart condition that I am managing)...it was an easy choice to go for a MX. I am telling you all this detail, not because you would have the same situation, but to say that every woman has her own mindset, her own story, and thus her own unique decision to make. Good luck!

  • B71
    B71 Member Posts: 1
    edited January 2021
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    I have IDC stage II. ER+ PE+ HERS-

    I'm so conflicted with my original decision to go ahead with a double mastectomy and immediate reconstruction.

    This is what I decided. Even though I'm terrified, I still feel better with this decision than having to deal with scans, my brain always worrying etc.

    But my family (husband ,mom and siblings) chime in with their opinions and make me feel uncomfortable with my decision. I appreciate their opinions. It just makes me not confident in my decision.

    Thoughts?

  • Togethertolearn
    Togethertolearn Member Posts: 224
    edited January 2021
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    you do you. It's your body forever. I will tell you that my lumpectomy left me lopsided tremendously so it's not like lumpectomies are perfect beautiful easy things - I had two surgeries for mine. You hold on to what you KNOW is best for you

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2021
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    B71, I just replied to your other post. I'll say the same thing here. What your family thinks is completely and totally irrelevant. It's your body, and you have to live with your decision for the rest of your life. This means you do what you feel is right for you.

    You say you appreciate your family's opinions, and no doubt they were helpful as you made your decision. But at this point, if your decision is made, their input is harming you not helping you. You have breast cancer. You have a big surgery ahead. You have enough to deal with. Making you feel less confident in your decision isn't being supportive, it's being hurtful. Tell your family that your decision is made and is no longer up for discussion, and that moving forward you would appreciate their support.


  • abigailj
    abigailj Member Posts: 104
    edited January 2021
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    Hi B71 - my older sister was really upset I chose BMX with immediate DIEP recon instead of 2 lumpectomies because she’s still very protective of me despite us being 62 and 72 at the time I was diagnosed. However she came around to least respecting that it was my body and my choice and was unfailingly supportive throughout my recovery after my s. I hope your well-meaning relatives will also come around and give you strong support as well. By the way I’m on Staten Island too (New Dorp Heights) although treated at Weil Cornell/NY Presbyterian. Wishing you all the best in every respect and feel free to PM me if you want.

  • amanda6
    amanda6 Member Posts: 50
    edited January 2021
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    just my two cents, but I had a lumpectomy, left breast. It was so easy -outpatient, quick recovery, no pain whatsoever. And my left breast is slightly smaller, but hardly noticeable. But I did end up with radiation induced heart disease 7 years after the fact ( requiring open heart surgery to repair a damaged heart valve & have heart failure ), & I feel that might have been avoided with a mastectomy. Whatever your choice, I wish you all the best!

  • cake8icing
    cake8icing Member Posts: 23
    edited January 2021
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    Hi Amanda6, thanks for sharing your story. I chose left MX over lumpectomy and radiation for fear of damage to my heart by the radiation. (I have had a pericardial effusion in the past, due to a viral infection). When I asked my team about what they do to protect my heart during radiation, and they said “oh, we have you breathe in deep and hold your breath”...they had no answer to my question, “what happens if I have a coughing fit right when I am getting hit with the rads? You mean you are relying on my breath control to protect my heart?” I got kind of a dull stare, like, “we don’t know.”. It is so hard the decisions we have to make!

  • Molly2006
    Molly2006 Member Posts: 3
    edited January 2021
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    Hi! I did a lumpectomy after chemo and radiation 24 years ago and I loved it. I even did breast augmentation on both breasts to increase from a B cup to a D. The survival rates are basically the same I’m told between a lumpectomy with radiation and mastectomy. I loved being able to preserve my breast and nipple. I have had a new cancer - not a reoccurrence - appear now and caught it early so no chemo this time. But because of radiation- and we can’t radiate the same breast twice- I have to have a mastectomy with reconstruction now. We will see if we can do skin and nipple saving mastectomy but if not enough blood flow available I am having a latissimus dorsi flap reconstruction procedure. Can’t use donor tissue from abdomen because I already had a tummy tuck after having twins years ago. Not enough skin left. Just because I got cancer again - strong family history - does not mean most people get it again. I loved my lumpectomy versus mastectomy and have no regrets. Good luck to you!

  • amanda6
    amanda6 Member Posts: 50
    edited January 2021
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    thanks cake, & I like your name :). I'm so glad you chose the mx, unfortunately I went into my treatment 10 years ago woefully ignorant of my choices. I was in a bad place, shell shocked, & just went along with what my docs choose for me. I've sense learned to do my homework & make well informed decisions in my healthcare. I don't like to scare people so I'm sometimes hesitant to post about radiation induced heart disease, but it is a possibility with radiation, particularly left sided & it's important to recognise that as part of our treatment decisions. Thanks for your response & all the best :).

  • cake8icing
    cake8icing Member Posts: 23
    edited January 2021
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    Thanks, Amanda! We all make the best decision we can at a very difficult time when we are under Uber-stress. I had the “advantage”...if you can call it that...of an older sister who nearly died from a MRSA infection from her DIEP flap reconstruction. Her horrible experience left me thinking, if my day comes, I want the least invasive procedure possible. And as invasive as a mastectomy is, there was no drugs and no radiation. I think the best any of us can do is pay it forward by sharing our experience, with no judgment, just in the spirit to share and help others. I am grateful to all the women who shared their experiences with me and helped me in my decision.
  • dulcea
    dulcea Member Posts: 148
    edited January 2021
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    As of two days ago, I am also trying to make a decision.

    Yesterday morning, I decided I was going to have a lumpectomy but by mid-morning, I had changed my mind to double mastectomy with DIEP reconstruction.

    The decision for BMX: No radiation would be required. I have small breasts and the BS said that the lumpectomy and radiation would cause a lot of distortion and I wouldn't like it (I really don't care about appearance, so this really didn't sway my decision). This is my second cancer in 3 months. The second one was not found on my screening mammo, nor was it found by the numerous clinical exams by professionals over the last few months. I found the lump myself and it came up quick! So, what else is brewing in these very dense breasts? I have had eight biopsies in the last 18 years with numerous callbacks, ultrasounds etc. I am so done with being poked and prodded and bruised and smashed in between machines. I might end up with a MX anyway should a cancer return, and a person can only have radiation once. I would probably recover quicker in my youth (ha! 56) than a year or five from now. I know that there is no difference in survival with MX vs. lumpectomy with rads for early breast cancer, but I wonder if that changes due to my "bilateral synchronous breast cancer" issue. Also, If I did one breast, I would just do the other at the same time.

    The decision for DIEP reconstruction: I can't have foreign things in my body, so implants are out. I really don't think I would tolerate prostheses very well. I know it's a long recovery, but I am currently living with three other adults who could help. The BS said they can do both at the same time so I wouldn't have to have two surgeries. I am in a position to take time off from work and not have to worry. I will fill my bras and not have to worry about whether I put my prosthesis in.

    As of this morning, I am looking at lumpectomy again, but I read about people's experiences with rads and that turns me off. I read people's experiences with DIEP and they are very happy despite the tough recovery. I keep thinking that this is early cancer, medium grade, HER2- so I should just go with lumpectomy, but the dual issue brings me back to reality.

    I still must meet with the PS. I may not even be able to have DIEP as I am fairly thin. I think I would still highly consider BMX if DIEP was not an option for me. I am also meeting with a genetic counselor next week which might just make up my mind for me, which might be helpful. Or not. Believe it or not, I am also waiting on another biopsy result although they think it is a fibroadenoma, but bad news would also make the final decision for me.

    My head is spinning but I am reading all I can about everything and have learned so much in just the past 48 hours. It truly is a personal decision. For anyone making these decisions, I send you strength to make a decision and embrace it.

    Thank you for asking this question and others for answering! It is so helpful to read everyone's experiences.

    Carol

  • farmgirl888
    farmgirl888 Member Posts: 14
    edited January 2021
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    Dulcea - look into IORT. One time radiation while you are in surgery, also limited to the tumor bed...safer for your lungs and heart.