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Lumpectomy vs. Mastectomy

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I’m newly diagnosed and had consults with 2 different doctors. My tumor is small (6.5/7mm depending on which report used). Both recommended the same treatment- lumpectomy with radiation and then likely chemo. They mentioned that I could choose mastectomy instead and then there wouldn’t be radiation, but that there was statistically no difference in outcome between the two and mastectomy was much harder recovery. This is, of course, pending genetic testing, but I have no family history.

I’m leaning toward lumpectomy but just wondering if anyone else was in a similar situation and opted for the mastectomy and why. Want to feel like I’m fully understanding all pros and cons.
And any other advice welcome too!!

Comments

  • cookie54
    cookie54 Member Posts: 658
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    @jodis1015 Sorry to hear about your diagnosis this is definitely a club nobody is asked to join. Yep stats are pretty much the same either way. I chose bilateral mastectomy being I had very dense breast tissue and because of that my mammo's always had suspicious areas. I wound up having 8 breast biopsies over the course of nine years and for that reason I chose mastectomy. I was tired of the stress and anguish waiting for results ,so on year nine biopsy 8 It was breast cancer.

    Obviously this is a personal decision but here are some points to mull over. Mastectomy is a tougher surgery and what will you do implants, go flat or be a candidate for reconstruction? If you aren't a candidate for DIEP/TRansflap recon you will need tissue expanders and an exchange surgery once expansion is completed. There is nothing like the feel of your own breast tissue, many women including myself really don't have much feeling in their breasts.

    If Lumpectomy it is a easier surgery for sure plus some radiation depending on pathology report. You will obviously continue to have breast imaging , would you feel stressed by that? Honestly with either surgery there is always a chance of a recurrence down the line. I had a recurrence about 4 years later in my axilla was treated for that. Then another year went by and a recurrence in my lung. I'm not trying to scare you but some people think because you have a mastectomy cancer won't return.

    Sorry to be long winded just wanted to explain in some detail . In the end it is your decision. I would say to think a little into the future also. You know yourself better than anyone! Hope is that you treat this and put this behind you forever!

    Wishing you all the best with your decision. We're all here if you need us!

  • jodis1015
    jodis1015 Member Posts: 16
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    Thank you cookie this is really useful information. I think for me the intensity of the surgery is daunting. I know I could face it if I had to (ie if my genetic tests come back positive), but the lumpectomy seems preferable. Unfortunately, I am aware that I will be on pins and needles on some level for the rest of my life.

    I’m so sorry you had a recurrance. Did you feel it in your armpit or do you get scans even if you have a mastectomy? I’m new to all this and still learning and gathering information.

  • annieliz63
    annieliz63 Member Posts: 2
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    Jodi - I did lumpectomy & radiation. My onco type indicated that chemo was unnecessary. I was cancer free 4 years. I just went through a LIvestrong program at the YMCA and really felt for the ladies who were suffering through the pain of the mastectomy. Even though the cancer did come back and I am now stage IV metastasis, I don't regret the route I chose.

    My husband and I watched a stand-up comedy show with Tig Nataro ("Tig" on Netflix) and halfway through the show she takes her shirt off to reveal a bare chest without any reconstruction. It was shocking at 1st, but by the end of the show we both commented about how unremarkable it all was; we had decided that IF mastectomy was recommended I was not going to go through the agony of reconstruction. (But we were no longer having sex at that point).

    If you are still intimate, I would recommend lumpectomy.

  • cookie54
    cookie54 Member Posts: 658
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    You're very welcome! Agree it is a lifetime concern but the further you move away from your diagnosis it does get easier. I found myself thinking about it less and less as the years went by.

    Thank you, yea cancer stinks! Yes I always still did chest/breast/axilla exams and found it myself. Typically no breast scans after mastectomy unless you possibly have a leak with implant or a lump pops up, then MRI.

    Yes lots of info to gather and this site is great for that!

  • kaynotrealname
    kaynotrealname Member Posts: 366
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    I could have done a lumpectomy and radiation but chose a double mastectomy instead. The reason was purely emotional although there is a little less chance of a local recurrence with a mastectomy. At any rate I didn't the want the monitoring scans nor the radiation. For whatever reason radiation scared me more the chemotherapy and I hate all scans. Just couldn't stomach idea of having them every six months or so and then having to worry again if they found something. I just preferred my breasts gone. Sex life has not suffered by the way. I have recently gotten a reconstruction but my sex life was fine before that.

  • lillyishere
    lillyishere Member Posts: 770
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    I was recommended lumpectomy+radiation and I did choose double mastectomy (BMX). MRI did show small cancer on my left breast and negative lymph nodes. My genetic testing of 84 genes was negative. BTW, only 15% of breast cancer is genetic. What made me decide for BMX is that a breast that produces cancer once, can do it again. Also, I didn't want to go through the scans and the stress every 6 months when breast scans are performed. I am glad I choose BMX since the pathology report did show what MRI didn't, 2 nodes were found positive, and cancer was found in both breasts. Yes, mastectomy is more difficult than lumpectomy, but once it is over, you get used to the new you. The scar of BMX is under the breast and almost invisible. I never met anyone who had BMX and regrets it. I did meet women who had a lumpectomy and decided to move to BMX later on.

    In the end, the decision is yours. Doctors use the guidelines, most of the time they are one size fits all. You need to decide what works best for you. Best of luck!

  • jodis1015
    jodis1015 Member Posts: 16
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    Thank you annie and kay. My husband and I are still intimate and he is supportive about whichever direction I choose. I, too, am quite nervous about the radiation and that is my main reason for considering mastectomy. But I think my aversion to the long recovery is stronger. I will also hate the extra scans but I know myself, and I don’t believe the mastectomy and lack of scans will actually reassure me.

    So many things to weigh! I also need to decide by Monday between the two doctors I saw. They both have the same treatment plan and came recommended and are at highly regarded hospitals (NYU and Mt. Sinai). And I liked both. I think I’m leaning toward the one who can get me into surgery 5 days sooner than the other. Because I’m terrified of how fast this moves!

    And, of course, this whole plan could go out the window if they find anything else on the MRI which I just did on Friday. Really hoping that everything is as it looks on ultrasound/mammogram but I know there could be nasty surprises. After all the bad news lately, though, I’m really hoping for a break!

    Thanks so much for your help and input: What a relief to have access to the wisdom and support on this site.

  • cookie54
    cookie54 Member Posts: 658
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    jodis1015 Just want to give you some info on Oncologist's regarding TNBC. In case you are not aware and I see you have TNBC, DR Tiffany Traina at Sloan Kettering specializes and is a leading researcher in TN. I live in South Jersey and I used her for my second opinion last year. I really liked her and felt confident with her opinion. She collaborated with my MO on my current treatment and is there if and when we need her.

    I know all this info can be overwhelming but I figured why not share in case you ever want another opinion. We are blessed to live near top institutions nearby.

  • kaynotrealname
    kaynotrealname Member Posts: 366
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    Oh I do want to add that at least for me the BMX scars were not under the breast. But that's because they took my nipples. There wasn't anything wrong with them but I'd been cursed with large ones so they couldn't save them. I'm scheduled for 3-d nipple tattoos next month.

  • jodis1015
    jodis1015 Member Posts: 16
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    Thank you lilly I didn’t see your post before I wrote earlier. Wow that is very disconcerting that the cancer didn’t show up on MRI. It is another thing I worry about and worth strongly considering. How did your treatment plan change after the new information?

    cookie, YES, I would love any recs in the NY area that are specialists in this. I will try to make an appointment ASAP. I feel like I got thrown into the deep end of the pool after being spun around with a blindfold. Found my tumor on an annual mammogram and my PCP didn’t help at all. Wasn’t until biopsy results that he referred me to a surgical oncologist (who did happen to be great) and a friend helped me get an appt with another who is also great. But due to the aggressive nature of this, and the length of time it takes to get appointments in NYC I’m worried about going anywhere else and starting fresh. It’s already been over 5 weeks since my initial mammogram. In fact, right now this is the thing giving me the most anxiety. And the soonest either of my docs can get me in for surgery is 7/20.

  • jodis1015
    jodis1015 Member Posts: 16
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    The two surgeons I consulted with are Dr. Axelrod at NYU and Dr. Port at Mt. Sinai. The only reason I didn’t go to MSK was that the only people I knew who had gone there had had negative experiences. But now I’m wondering if I should really try to see someone there based on all the nuances of TNBC.

  • cookie54
    cookie54 Member Posts: 658
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    @jodis1015 I totally understand sometimes medicine is hurry up and wait, so annoying. You have to go with your gut on this. If your not a fan of MSK stick to NYU or Mt Sinai both great facilities. My oncologist deals with all types of breast cancer and I have been with her from Stage 1. I'm with HUP/Penn Medicine and have been happy. I'm a researcher and my doctor had mentioned that Dr. Traina is very knowledgeable with TNBC and she actually encouraged me to see her.

    I understand not wanting to wait, we all have had visions of our cancer going wild in there. Even though TN is known to be aggressive it also responds very well to therapy. TNBC treatment is pretty standard with the chemo they start you on. Please don't feel pressured that you should see someone else if you have your medical oncologist picked out already. I just wanted to share the info since your in NY.

    Keep us posted. You will feel more settled once you get your plan going.

  • jodis1015
    jodis1015 Member Posts: 16
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    Oh no, I think that came across wrong. I wish I had looked at MSK and booked an appointment there from the start. The only reason I didn’t is because a few people I know had negative things to say and I was a bit overwhelmed already. And I didn’t know that I needed an oncologist as well as a surgical oncologist. But none of my friends had the same oncotype. I would very much like to consult with someone who specializes in TNBC and can review everything to make sure surgery really is recommended first with my situation or if I should possibly do chemo first. So this is incredibly helpful and I thank you.

  • cookie54
    cookie54 Member Posts: 658
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    Ok good! Try to enjoy the 4th🙂

  • lillyishere
    lillyishere Member Posts: 770
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    jodis1015, what I have learned is the guidelines are the same for everyone. You need to contact and get data from BC survivors with TNBC on what their experiences are and what they suggest. MD Anderson is one of the best cancer centers in the World if you want to schedule an online visit but I doubt they will propose anything different. I did get 4 different opinions when I was diagnosed and all recommendations were from the same guidelines at that time, lump+radiation. I tend to be on a conservative approach of removing all breast tissue if 1. the cancer is aggressive and 2. you are on the younger side. My BC was not aggressive, it is lazy BC however, I was in a younger group and I have young kids to raise, which made me take an aggressive approach of removing all breast tissue.

    My friend who was 39 at the time of diagnosis had only one breast removed after chemo however, in 2 years she decided to remove the second one because she was going through anxiety of having the remaining breast checked every 6 months. Also, it looks better to have both breasts reconstructed than only one.

    We are telling you our experiences however, it is you who will make the decision based on what works best for you.

  • trishyla1
    trishyla1 Member Posts: 44
    edited July 2023
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    Wondering why your treatment plan isn't the usual one for TNBC? It is standard of care to have aggressive chemo first, surgery after. This is especially true in younger women, where TNBC tends to be far more aggressive. Has your oncologist shared why they're not following established protocol

  • jodis1015
    jodis1015 Member Posts: 16
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    Hi trish, both the doctors I saw said that if the tumor is smaller than 1cm they recommend surgery first. I did also call Memorial Sloan Kettering to try and set up an appointment with Dr. Traina (the oncologist cookie recommended) but they said, based on my data (they were able to see my mammogram/ultrasound/biopsy results) that I couldn’t even book with her until after surgery. They recommend the same protocol. Since I’d already consulted with 2 surgeons, I didn’t make an appointment with another at MSK but I would definitely like to see Dr. Traina in the future.

    But, it’s possible that the plan may change anyway. They found a couple new areas on the MRI that they want to biopsy before surgery. Doc said they are very small, and she’s leaning towards them actually being nothing but who knows. I feel like every bit of news I’ve gotten so far has been bad, so I’m prepared for the worst. If they are separate cancers we will probably discuss new options. It’s all so stressful.

  • cookie54
    cookie54 Member Posts: 658
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    jodis Yes the protocol makes sense my first breast mass was 8mm, I had mastectomy first then therapy. Second time around I had therapy first then surgery. It does depend on tumor size and other circumstances.

    I know it's so stressful but better to get other biopsies so they have the most information prior to surgery. Keep on trudging forward and you'll get there on step at a time. The positive thing is your mass is small and you sound like your doctor's are on top of things.

  • rnjen
    rnjen Member Posts: 16
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    I was given the same decision in October when I was diagnosed to have lumpectomy and radiation versus mastectomy with no radiation. It is a hard decision. I chose to have a double mastectomy with reconstruction. I 100% know I made the right decision for myself. I AM 44 years old and have been getting MRIs and mammograms since my mid 30s alternating every six months for a family history and very dense breast tissue. I have had a few biopsies which are anxiety inducing. My pathology from my mastectomies showed 2 more areas of breast cancer that MRI had not seen and that they were not aware of. Lumpectomy would have left me with breast cancer still in another part of my breast. My cousin had a lumpectomy and 8 months later after radiation the breast cancer came back in the same area and she ended up getting mastectomies. On the other hand I know people that have had lumpectomy and radiation and are doing very well after many years. I think what really made me choose the double mastectomies was that I am on the younger side and the thought of going forward needing imaging every 6 months for who knows how long caused me more anxiety then having the surgery. Having the double mastectomies and reconstruction has not been easy but I'm all healed from both and I am happy with the results. It sounds like you have an excellent team. That makes all the difference. Wishing you peace with whatever decision you make.

  • jodis1015
    jodis1015 Member Posts: 16
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    Rnjen, thank you so much for your input. It is all so valuable and helpful.
    I got my second biopsy done yesterday — my doc said it had to happen this week in order to make our surgery date, and I am so relieved it’s actually over because it almost didn’t happen.

    When I got to the hospital yesterday morning they told me all procedures had been canceled due to an electrical fire somewhere else in the building the night before that was affecting power to the machines. No chance of getting it done. Here’s our card. Call to reschedule. Sorry, goodbye.

    I’ve been holding it together this whole time since diagnosis but for some reason this was the straw that broke me and I just fell apart. Uncontrollable weeping in the waiting room. Just sat there and sobbed my heart out for probably 5 minutes straight.

    I don’t know if maybe they took pity on me or if somehow my doctor arranged it, but just as I was pulling myself together to go they let me know that were able to get me in to another location downtown.

    So after a trip downtown, a very long wait, a very long MRI-guided biopsy, and a second ultrasound with needle (because I had accidentally bled out the clip they inserted to mark the site), I was finally done. My poor boob is a bruised mess because the two sites they needed to get to were a little difficult to reach and they had to compress for a really long time afterwards. They explained that it can sometimes go that way with MRI because they can’t see and avoid veins like on ultrasound and probably nicked one. Just so relieved they were able to do it and hopefully good news next week.

    But even if it’s bad news, it’s still ok because one way or the other I will be able to move forward. Thanks again for all your help and input here!!

  • cookie54
    cookie54 Member Posts: 658
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    @jodis1015 Oh geez what an ordeal that was, so glad it's done!! We all would of had a meltdown, you can only deal with so much. Agree move forward and get the surgery over with.The anticipation of everything is all too much sometimes. Big hugs❌⭕️

  • moderators
    moderators Posts: 7,900
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    Hi @jodis1015,

    Have you seen this thread? You might find it helpful.

    Sending good wishes to you as you weigh your decision!

    —The Mods

  • jodis1015
    jodis1015 Member Posts: 16
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    Thank you for all your help and input. Just wanted to give an update. The extra spots on the MRI ended up being benign, and my surgeon ended up having a cancellation so I was able to do the surgery this past Thursday. In the end I chose the lumpectomy. There were many compelling reasons to go with the mastectomy but in the end my reluctance to undergo the more extensive surgery at this time won out. It was the right decision for me now, and I’m happy to be through at least one big step. I did break out in blue hives from some sort of reaction to the blue dye they use to identify lymph node path, but luckily benadryl fixed it quickly and in general the pain is minor and I’ve only needed a few Tylenol.

    But now it’s back to the tortuous waiting and that’s hard. My doctor took out 2 sentinel lymph nodes but I won’t know more about whether or not those were affected until July 24th followup. 9 days feels like forever! Just want to know where we go from here and would love to meet with an oncologist to talk about next steps but no one will book an appointment until after the pathology comes back. But I keep telling myself I could still be waiting for surgery so at least I’m a little farther down the recovery road!

  • cookie54
    cookie54 Member Posts: 658
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    @jodis1015 Hi, So happy to hear your surgery was moved up and is behind you! Sounds like you are doing well and are at peace with your decision. I hope the next 9 days fly by for you and the results are better than expected. Keep your mind as busy as possible and before you know it your appointment will be here. Hope for the best but prepare for the worst is all we can do, then on to the next step.

    Thanks for the update, sending positive vibes your way.

  • yippeekiyaymf
    yippeekiyaymf Member Posts: 25
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    @jodis1015 so happy to hear you are one step further and doing well! I lean on what my surgeon and oncologist have told me repeatedly (and I did end up with chemo and radiation and endocrine therapy). as far as they know the cancer was gone with surgery and everything else is preventative. I don't know if that helps you feel any better during the waiting game but it still helps me. All the best!

  • jodis1015
    jodis1015 Member Posts: 16
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    Thanks for all the positive vibes cookie & yippee! Trying to keep my chin up. It definitely helps to think that the cancer is gone and all the rest is preventative. I do feel SO much better just knowing that the tumor is out of my body!!

  • moderators
    moderators Posts: 7,900
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    So glad to hear this, jodis1015! We hope you're continuing to feel well and that recovery is swift and uneventful.

    The Mods

  • rnjen
    rnjen Member Posts: 16
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    So glad to hear that your surgery is now done and behind you jodis1015! What a relief. Now the waiting game. I found that to be the worst part of this whole journey for sure was the long time waiting for test results. I hope that you get pathology back soon and get good news and get in to talk to the oncologist. Keep us posted. I have been thinking about you but haven't been online in awhile. Had some complications from the tamoxifen that landed me in the hospital 🙄 Wishing you the best. If you don't mind me asking how old are you? Did you get genetic testing done? I know age plays a factor on the genetic testing, at least here in CA where I am. I had full genetic testing done and mine was all negative.