Surgery soon... lumpectomy or dbl mastectomy?

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Oya80
Oya80 Member Posts: 42

Hi everyone, I'm new here. This is definitely a club that I did not want to be a part of and I'm sure all of you thought the same thing. I've been lurking the past few weeks and have been so inspired by the stories of courage and survivorship. I hope to one day be on the other side as well.

Next week I'm due to have surgery to remove this parasite from my body. My mind was all set on having a double mastectomy because I wanted to do the most aggressive measure to ensure I would beat this beast.

However, I've now received my genetic testing results as well as MRI & CT scan. Everything is negative. Now I am rethinking the whole complexity of surgery. I could use a little advice from those that have been there already.

I know it is unique to each person, but I would still like to hear some different takes on it. Thank you in advance.

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Comments

  • PollyOne
    PollyOne Member Posts: 21
    edited November 2018

    Hi Oya80,


    Treatment is tough and a very personal choice, so take the time to think through what's important to you. I was told that a lumpectomy plus radiation was just as good as a mastectomy. The more I thought about it, the more I realized that also meant that a mx was also as good as a lumpectomy.


    The most important thing to me was to get it out as completely and as quickly as possible. I had trouble functioning while waiting for the biopsy results, and couldn't imagine waiting for mammogram results every 6 months for the next several years.


    I also wanted a single procedure and continuous time off work. It would have been hard to go to daily radiation given my anxiety about the whole thing plus it's an hour to/from radiology.


    At first I wanted dbl mx but my surgeon said it would make the recovery much more difficult, and I could always have the other side done later. So I chose a single mastectomy. Before the surgery, every time someone would talk about having a lumpectomy, I would get almost panicky wondering if I should perhaps make the less radical choice.


    I'm just over three weeks post op, and the recovery has been a lot harder and slower than I had hoped. I still have low level pain most of the time, and don't know when I'll be able to tolerate anything on the surgical side. I'm getting more comfortable about going out in public that way, but didn't want to leave home at all for the first 7-10 days. The mx affected my body image in a way I didn't expect which surprised me because appearances have never been that important to me. It's much better now, and I'm coming to terms with the idea that I'll have to go back to work without a prosthetic.


    At this point, I'm glad I made the choice I did. The biopsy showed the tumor was multi focal (two spots 2.1 cm and .8cm in same area of the breast) and that I also had DCIS as well as ADH (a risk factor for bc). The mammogram and ultrasound only showed one 1.1 cm spot.


    There are some great decision making tools online, but for me it came down to these factors:


    - How important is your breast (I'm almost 60 and the answer would have been the complete opposite earlier in my life.)


    - How worried are you about the cancer coming back


    Whatever treatment you choose won't be a cakewalk, but if you make the decision based on your values it will make enduring it more bearable.


    Sorry to welcome you to a club I never wanted to be in either, but there's lots of support here for you 24/7.


    Take care
  • Moderators
    Moderators Member Posts: 25,912
    edited November 2018

    Hi Oya! Welcome to the Community. We know nobody wants to join this club, but we hope that you will find support and information to help you along the way, so we're glad that you reached out!

    We wanted to to recommend you the following article from our main site that may help you make the best decision along with your medical team and suggestions from other members here: Mastectomy vs. Lumpectomy

    We hope this helps. Please let us know how it goes next week. We're thinking of you!

    The Mods

  • MBPooch
    MBPooch Member Posts: 229
    edited November 2018

    Oya80 -

    Like PollyOne I also chose BMX. I actually never considered lumpectomy. I wanted to do whatever I could to hopefully not ever have to go through that experience ever again. I'm also a bit of a hypochondriac so knew I would question every ache and pain! I had also lurked around on here enough to see that there were people who had surprises when their pathology after mastectomy came back and I just wanted to be certain I was taking care of everything. I was able to do direct to implant which if you would be interested in reconstruction it's definitely something to ask about. Only having the one surgery and waking up with breasts that were similar to what I had was mentally encouraging to me. My recovery was actually not bad but I feel like that might not be the norm. I do practice yoga and had implants before so not sure if either of those things aided in my quick recovery. My surgery was Nov. 30th, I hosted Christmas Eve and took a trip up to Northern WS for NYE. Most days now I don't even think about it and it's hard to believe it's been a year already. Best of luck in making this decision, none of this is easy but you will be okay!

  • reflect
    reflect Member Posts: 576
    edited November 2018

    Hi Oya,

    I began wanting BMX after being told I needed MX, and eventually, after getting a second opinion at Dana Farber came around 180. They said they could do Lx even though I had multi focal and ADH. It was fussy! Wire localizations etc, but I have not regretted my choice. I felt I could always get an Mx later if needed.

    I wanted to do the minimum. Good luck with your decisions and don’t look back

  • MCBaker
    MCBaker Member Posts: 1,555
    edited November 2018

    Never even considered double. Righty has always been troublesome. Just cut it off and be done with it. The prospect of sixteen trips to the city in 22 days for radiation firmed up my decision. Then informed of sub-pectoral implant, hell, no, would rather be half-flat than do that. Then learned about what my PS refers to as subcutaneous implant, now that is doable. Then they told me that already mangled Righty has too much DCIS to be worth a lumpectomy. Lefty fed my babies well and I wouldn't have her cut off unless I had to. My back is too easily out of sorts to consider no reconstruction, I need equal weight on both sides.

    So I am happy with my decisions.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    I went into my surgical appointment thinking I'd be getting a mastectomy (half to treat, half preventative) and came out feeling much better about the lumpectomy route. The long term outcomes are equally good statistically (at least for my particular configuration of cancer).

    I'm 39, single, no kids. I'm sure that affected things.

    The healing on my breast has been very easy, but the healing from the sentinel lymph node biopsy has been a pain in the ass. I was able to go back to work after a week, so not terrible, just uncomfortable.

    One thing I'm thinking about is that I can always get a mastectomy later. My impression is also that it can sometimes be easier to do the mastectomy and reconstruction together when it's not at the same time as other cancer treatments (radiation, chemo). But I haven't asked a doctor about that, and need to. That's based on the experience of a friend who had stage 3, double mastectomy, and was told to wait until she fully recovered from side effects of other treatment before reconstruction.

  • Oya80
    Oya80 Member Posts: 42
    edited November 2018

    Thank you all for replying. I got my answer today… and not necessarily by choice. Called my doctor to discuss my fears and 2nd guessing and was told that I'm not even a good candidate for a lumpectomy. The tumor is pulling on my nipple so they need to remove that entire area. So I have my answer! Bilateral it is.

    I'm 38, married with 4 children, so I don't need them for nurturing anymore. Right now I'm going for symmetry. And to be honest, I don't have the time to dedicate to 6-7 weeks of radiation. Chemo is still up in the air though. So like one of the posters stated, I will have to wait until I am done with any of that treatment (knock on wood) to replace expanders with implants.

    So it's my last weekend with the DD's.... it's been a good ride girls! 🙂

  • Alh
    Alh Member Posts: 4
    edited November 2018

    I had a lumpectomy and radiation, then double mastectomy 6 years later. I wish I had gone that route the first time as the radiation has caused issues in reconstruction....despite that, I downsized from dd's (my choice) and am so glad I did! Good luck!

  • MCBaker
    MCBaker Member Posts: 1,555
    edited November 2018

    Righty has always been smaller, due to a biopsy before mammograms were even a dream. They will borrow a bit of fat from lefty to equal them up. The MRI showed me how big the difference in size is!!

  • macvrn
    macvrn Member Posts: 1
    edited November 2018

    Hello Oya80!

    As you know, every situation is different. Your choice needs to be based on what's important for you.

    In my case, I opted for a double mastectomy. Even though, it was my left side that has the cancer, I decided for my right to be prophylactically removed just because I have a benign biopsy result years before my diagnosis. My husband would have had me do the lumpectomy with radiation. His reasoning was that mastectomy is a major surgery, more risk/complications, longer recovery and that if there's nothing "wrong" with my right side why removed it.

    The ANXIETY was the most propelling factor for me. Every time I would encounter some issues about my surgery/recovery (I went home with 4 drains), I would always go back to that time when I was first diagnosed and on the "waiting phase" and almost like having a panic attack. Those thoughts always gives me peace about my double mastectomy decision.

    Whatever your decision is you will encounter some challenges. This thing is laid down on our path for a reason, don't let it weighed you down. Keep enjoying life.

    God Bless You!

  • Oya80
    Oya80 Member Posts: 42
    edited November 2018

    Thanks macvrn,

    I actually had my dbl mastectomy with immediate reconstruction (tissue expanders) yesterday. It was an outpatient procedure and I was home last night. So far the pain has been manageable. The left side (cancerous) is draining more than the other. But the prophylactic side is in more pain. Thank god for the good drugs. My husband has really stepped up and has become my at home nurse!

    I'm not due to see the PS until next week but of course they're available if I need them.

    I'm so glad to be done with the surgery & feel confident in my decision. It truly is a personal choice. All the advice & support received from you all really helped me feel secure in my decision. Much appreciation. ... Now on to healing!!

  • HopeBry
    HopeBry Member Posts: 88
    edited November 2018

    I am a TN and I am battling with the decision as well. I am to get chemo before surgery. No mention of radiation as there is no lymph activity. I guess it will give me more time to think as the tumor hopefully shrinks. I am leaning towards a dbl Mastectomy whether my genetic results are positive or negative. I just dont want any reoccurance or additional surgeries outside of reconstructed boobs. My husband wants me to do what's best but he feels MX is a last resort. He's obsessed with nipples/areolas as most men but they are not that important to me as a woman when it comes to preventative choices. I am curious as to other people's choices in my situation being a TN Grade 3.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    Hi Oya80

    I noticed your reply in Love's thread...just quietly posting that you too were waiting in dr's...for pre-op which you haVe now had...there you were encouraging Love whilst waiting ahead of a major surgery. Speaks volumes about your courage and your character.

    I take my hat off to you. Bravo sister.

    I just had to post and tell you how fabulous I think you are and what a brave warrior...facing all of this very quietly.

    I was shocked to see you had bmx as an outpatient procedure? Can I ask where this was? Is this a normal experience ladies?

    The other puzzling thing was no mention of even sentinel node removal to check axilla region? I mean..quite a large tumour. I have had your dx in my left breast originally...er,pr, her 2 neg..which it turns out Love has as well. I did have a positive node with extra spill toward next node...no doubt they have checked the nodes for cancer Oya?

    I don't know how you can manage going home straight away...but there you are doing it!!!

    No doubt they send daily nurse care?

    I am thinking of you and sending my love, prayers and best wishes for this to be all there is to your journey with BC.

    With 4 kids ...sent home pronto....my mind reels

    I feel for you.

    Big cyber hug.

    Astrid.



  • Oya80
    Oya80 Member Posts: 42
    edited November 2018

    Hi Astrid,

    Yes I was equally surprised at the outpatient BMX. I had to ask numerous times, "are you sure I won't need to stay overnight?" According to my docs, at home is more comfortable & there are less germs. I was discharged a few hours after surgery, with 4 drains.

    And no, no nurse home care... nada. I'm in the Las Vegas area, but not sure if this is the norm.

    My kiddos at home are 10mo, 4 & 14. My 21y/o isn't too far away & is coming this weekend to help out. I have my husband, whos been holding down the fort.

    They did check for nodes.. all clear. I'm still learning the terminology but I received 4 injections right in the nipple.. ouch! I think this was the dye used to check the sentinel lymph nodes. (*Just updated my profile)

    Everything has moved so fast... my focus has been solely on getting that cancer out of my body. Whatever they needed to do, I said do it! We'll discuss further treatment later. I tend to handle crisis well and I refused to let this thing steal my joy.

    Thank you for your kind words. I've been so inspired by the support I've witnessed here & am glad to lend an encouraging word to another. 💕

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    wow! You are an inspiration Oya.

    I feel for you though.

    Keeping you in there a few days for a well deserved rest...when you have a very little one and a couple of middling age...

    Cudos to your husband...yes thanl goodness for his support and your eldest one.

    Well...do sing out here if you need to vent or anything at all really.

    Very pleased no node involvement. Will make recovery a lot easier. Still not easy..but better.



  • star2017
    star2017 Member Posts: 827
    edited November 2018

    so glad your nodes are clear and that you’re overall feeling good with how everything went. I hope you’re able to take it easy, especially with the baby. I can relate!



  • Gndvll
    Gndvll Member Posts: 47
    edited November 2018

    Hi. I'm considered triple neg. I just finished my chemo and surgery is next. I'm a candidate for lumpectomy, but I'm going to have the double mastectomy. I'm 58, and I have no intention of doing this again. Ever! Lol (As if I had planned this to begin with...)

    I say treated as TN, because I have 5% progesterone that no one seems to know what to do with. I'll be getting hormone therapy and don't know about radiation yet

    But I'm Stage 2 Grade 3, and at one point, my PET scan showed minimal avidity, so we're expecting some lymph node involvement. It's fast and nasty, and I just want to be done with it.

    But, man, I want a cigarette!!! I can't do direct ti implant because I just finally quit smoking Oct 30. So my reconstruction will be sometime next spring. Definitely something to look forward to.


    Gina

  • MBPooch
    MBPooch Member Posts: 229
    edited November 2018

    Oya80 - Glad to hear you are doing well and on the other side of surgery! I'm a bit surprised they let you go home same day as well. I actually pushed for that but my surgery was later in the day so not an option. I think you'll be surprised by how fast the body recovers. Wishing you a speedy recovery!

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2018

    HopeBry - Are you a candidate for nipple sparing BMX? If so, I think it makes a big difference when weighing your options. And probably your husband's reaction.

    Astrid - My surgery was considered outpatient, but I was kept overnight. Maybe because I had reconstruction at the same time? In any case - it was hard to go home, but I wasn't really very happy at the hospital and had three kids that were worried about me waiting at home. It's doable with help.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    It seems too fast...no time to observe for any complications etc. I was in for 5 days I think..skin saving but no reco at that time. I had double complete axilla removal as well though...maybe that was why and I had assumed it was bmx....

    Whichever way you look at it..seems to me that doing this as an outpatient op. totally dismisses the mental, emotional and physical effects of losing both breasts. It seems undignified and callous if not plain bad practice. (Just my take)

    I wonder if this varies across U.S states. And Canada? Is that different?

    Anyway...how are you doing today Oya. Do you have drains? Please take it very easy. Sending love and a gentle cyber hug.

  • Oya80
    Oya80 Member Posts: 42
    edited November 2018

    I agree Astrid. It is all a bit too fast. The nerve blockers have officially worn off & I've been in tremendous pain today. I'm resting, but the kiddos are getting restless since they don't have full access to mom. I'm wearing a recovery apron to hold my drains, yet my little one still got ahold of one earlier. Thank goodness I grabbed his hand before he could tug.

    On the other hand, I am in the comfort of my own home. ... there's pros & cons.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    mmm.

    Yes...I guess...however a couple of nights in hospital followed by nurse visits to check drains etc would be minimum good practice. (If I ruled the land.)

  • Oya80
    Oya80 Member Posts: 42
    edited November 2018

    I sure wish you did! 😉


  • HopeBry
    HopeBry Member Posts: 88
    edited November 2018

    @Notverybrav - The PS stated I may be a candidate for Nipple Sparing. yes

  • HopeBry
    HopeBry Member Posts: 88
    edited November 2018

    Can you get reconstruction right after chemo? if your treatment has no radiation involvement. Chemo to implant or you have to do the expanders first then implants later to heal properly and avoid complications? just curious

  • Oya80
    Oya80 Member Posts: 42
    edited November 2018

    @HopeBry,

    I'm not certain if reconstruction can be done right after chemo as I had immediate reconstruction. But I was told that if I had to do chemo then I'd have to wait at least 6weeks post treatment to complete the expander to implant exchange. Chemo suppresses the immune system for awhile after treatment & the body needs time to recuperate.

    Still praying that I won't have to go the chemo route. Out of this entire experience, from diagnosis to treatment options, chemo is my biggest fear. Irrational... possibly? But it's my reality.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2018

    I had my surgery five weeks after my last chemo infusion. The implants were placed at the same time - no TE's. I did not need radiation.

  • HopeBry
    HopeBry Member Posts: 88
    edited November 2018

    @NotVeryBrav - any complications with that?

  • HopeBry
    HopeBry Member Posts: 88
    edited November 2018

    @Oya80 - Ok got it. Ive read about some people going straight to implant and was just wondering if that comes with issues, if you dont have much recovery time. thx

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2018

    No complications with the initial surgery. Healing went well. I did have an infection five weeks post op that required hospitalization for three days with IV antibiotics.

    I have not pursued any additional surgeries like fat grafting. Things look pretty good and I'm just not willing to spend the time and money and effort to do more any time soon.

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