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Prophylactic Mastectomy and LE... Your Opinion, Please

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lw422
lw422 Member Posts: 1,399
edited February 2022 in Lymphedema

I had a single mastectomy last August with ALND (due to IBC). 32 nodes removed and none of them cancerous...ack. Concurrently I had a lymphovenous bypass with 4 good "connections." So far I'm doing well but I have started the Lebed opening and learned MLD from a LE PT "just in case."

My plan was to have a prophylactic mastectomy on the healthy side this year to even things out; I have no interest in reconstruction and my remaining breast is a "D". It's difficult to dress and manage that one big boob! However my absolute terror about LE is making me reconsider additional surgery.

My surgeon (bless his heart) told me yesterday that there were "no worries" about LE since the prophylactic Mx wouldn't remove any nodes. (No worries for HIM, I'm sure.)

I'm just on the fence about this. I'd really like to have the mastectomy but I REALLY don't want to stir up the Lymphedema Gods of Revenge. What would YOU do??

Comments

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2022
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    Yup - they won't remove any nodes, but I understand your concern.

    My PS told me last year he could fix the one implanted breast that is sagging heavily after 10 years (the other one had radiation so it's stretched tight). I asked if he could guarantee that he wouldn't hit any lymph systems. Of course, no, there are not guarantees. URGH On the other hand, I have the Allergan 410 implants that I will consider replacing at some point if there's a problem so maybe I'll just wait.

    However - with one size "D" and considering it's MDA, I'd absolutely get it off Besides no one really knows what's 'lurking' in that remaining breast. Just my opinion. It won't stop your worries & of course there's always a risk, but still... Difficult decision my friend.

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022
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    LW - I worry about lymphedema all the time. I'm still in PT and always at some appointment for something, so I'm constantly being checked. I've even started allowing lab draws on the "bad" side as my left arm is tapped out. So naturally, I'm always freaking out about LE surfacing it's ugly head. Thank goodness nada.

    If it was me, I'd do it. Just a personal preference though, more-so because of the size.

    LOL @ "Lymphedema Gods of Revenge" sounds like the evil villain that's being unmasked at the end of a Scooby Doo episode.





  • lw422
    lw422 Member Posts: 1,399
    edited February 2022
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    Thanks, -2! I had all these plans laid out before I went into treatment and found that I wasn't really in charge of anything. What a shocker...haha. I had originally "planned" to have a double Mx but as an IBC patient I was "strongly advised" to have a single so they could rush me to radiation. After that surgery and all the nerve pain, armpit tightness, and that "iron bra" feeling I wasn't really anxious to go back for more. Now things have settled down and living with a single big boob isn't much fun.

    I also need a slight revision to the end of my surgical scar where it tends to look a bit puffy like a new boob is trying to sprout. (Maybe I'll just wait and see what happens there!!) The PS said that's something he can revise in the office but I'm even scared to do that. So many "what ifs" in the cancer/LE world.

    Oh, and I have months to decide. With IBC they don't do any reconstruction/revision stuff until a YEAR from the original surgery.

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2022
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    Serendipity - oh my -blood draws? I still insist that any blood draws are in my ankle. I insisted on my ankle for anesthesia IVs for surgeries too. I won't get shots anywhere except my butt or thigh. I will let them do only manual Blood Pressure checks on my least affected side. So I'm pretty cautious too. Just had an evaluation this week with a new LEPT. My prior one got promoted just before Covid and is now a supervisor of multiple sites so she doesn't see patients. I hadn't seen anyone since 2019 so we're re-evaluating every thing. On the other hand, I haven't gone anywhere - let alone on an airplane - so no real risks.

  • lw422
    lw422 Member Posts: 1,399
    edited February 2022
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    Serendipity! Hey there! I hope things are going well with your treatment. I try to keep tabs on you and MamaCure.

    I suppose I hadn't given LE much thought during treatment; it seemed like I had no choices other than to show up and submit. All the "Standard of Care" for IBC basically sucks but I'm still here to gripe about it so there's that. (Of course any breast cancer sucks.) I am afraid of LE, and the fear really ramped up when the surgeon told me she'd removed 32 nodes. But then the plastic surgeon told me he was able to make 4 good connections during the LVA so I hold out hope that those will work.

    There are so many unknowns with LE... that's what's terrifying. Surely if a bee sting can cause it to flare up, having a prophylactic mastectomy is really asking for trouble. I'll be wringing my hands for months to come.

    Take care!!

  • vlnrph
    vlnrph Member Posts: 490
    edited February 2022
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    I would go ahead with the “risk reducing" mx especially in the case of a known mutation. It may be semantics however the terms prophylactic and/or preventive imply zero chance of a new cancer. In reality, there is a tiny amount of tissue left behind that could possibly go rogue…

    Perhaps your PS is referring to doing a little liposuction on that puffy end of your scar which is what I had done. Not a big deal but he should explain in detail if that helps you worry less!

    Apparently you realize that any injury to an area, including surgery, can set the stage for LE. Node removal increases the likelihood. Still, worse things (such as metastatic disease - see my bio) happen. Deal with each thing once it occurs, not before, after educating yourself.

  • lw422
    lw422 Member Posts: 1,399
    edited February 2022
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    VLNRPH--thanks; I'm certainly trying to look at all the possibilities. At this point I'm not considering a mastectomy for risk reduction at all; simply for comfort and symmetry. (But I'll take any risk reduction!!) I know that a cancer recurrence can happen whether or not both breasts have been removed. I just wanted to discuss the possibility of lymphedema caused by having additional (non-essential) surgery, and whether others would do this or not. Sometimes it helps me to hear input from others since I often can't see the forest for the trees!

    My PS hasn't mentioned any liposuction; just a small incision to revise the end of my scar. It's less than an inch and he said it would be done with local anesthetic in his office. Of course with IBC, even my small revision has to wait for 7 more months.

    Thanks for the info; I appreciate it. So sorry about your MBC; many blessings to you.

  • alicebastable
    alicebastable Member Posts: 1,944
    edited February 2022
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    Serendipity, my lumpectomy with ONE node removed was almost four years ago, and my MO's nurse won't even take my blood pressure on that side, much less take blood. She said it's a lifetime risk, not something that decreases as we get further away from surgery. Please be cautious!

  • lw422
    lw422 Member Posts: 1,399
    edited February 2022
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    Hey Alice. Do you have lymphedema? The "lifetime risk" thing is such a drag.

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022
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    UGH! I'm constantly (well as of recent when they started using the arm) fighting with them about not touching that arm. I didn't know the ankle was an option, going to have to ask at Monday's lab draw. I won't let them touch that right arm anymore! My "good" arm is of no use right now. I had shoulder surgery last week and begged the nurse to use my hand on the good side for the IV, she agreed after several failed attempts on the arm and after an US to try and find something viable in that good arm, but not after me crying like a toddler because it hurt so much. It would've been so much easier to keep the port.

    LW - so sweet of you to keep tabs on me.<3

    Alice - I won't let them touch the arm anymore. Thanks!! :)

    Minus - I want to go see my dad, but afraid to fly and can't drive across the ocean :/ I have so many issues with the right arm as it is, I really don't need LE to add to it all.



  • lw422
    lw422 Member Posts: 1,399
    edited February 2022
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    Serendipity--sorry to hear about your shoulder/arm issues. I hope they can find a way to do the blood draws that won't cause you anymore problems.

    Earlier I was walking upstairs and tripped over my own feet... fell forward and caught myself on both arms. So now I'm petrified that I will see my bad arm blowing up. Does anyone else just get weary of all the worrying and never-ending self treatment? I already spend half my day stretching, doing MLD, following a Lebed video, bouncing on my mini-trampoline, etc., etc. If I have to add wrapping or any of that to my day I'm going to need mental help.

    I suppose I should just forget the prophylactic mastectomy; I'm not mentally able to deal with the "what ifs" and should just leave well enough alone. Thanks to those of you who commented.

  • LivinLife
    LivinLife Member Posts: 301
    edited February 2022
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    I do not have lymphedema though still get some lymph node swelling in the elbow of the armpit area where I had a node biopsied. I opted for a BMX for the very reason mentioned on here - didn't want to walk around with one large hanging breast. I am sooooo glad I went that route. I would not hesitate to make the same decision. No nodes removed on the prophylactic side obviously so that makes a difference. I do have blood pressure and blood draws on my prophylactic side and that's been fine. There is the "iron bra" feeling that I still have as well though if I keep up my doorway stretches I notice it much less. It's often background noise anyways. Best with your decision-making! These are indeed difficult decision, very individual and personal....

  • vlnrph
    vlnrph Member Posts: 490
    edited February 2022
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    LW, it's too soon to give up on the idea of another mastectomy to regain symmetry, especially because your history of IBC dictates such a long wait. Keep in mind that those of us posting here are more likely to be having LE problems - we don't hear from the ladies who are doing fine!

    Do you think the extra weight on one side of your chest could have affected your balance resulting in that nasty fall? At least you were going up the stairs. We live in a ranch with a main floor laundry but when needing to navigate the steps down to our basement I use the handrail and don't carry much.

    Those precautions are mainly due to avoiding disturbance of the 5 level lumbar fusion I had to replace the vertebra destroyed by tumor however they are good tips for anyone. The spine surgeon doesn't want to see me again. Give yourself some time off from worry. You deserve some rest.

  • lw422
    lw422 Member Posts: 1,399
    edited February 2022
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    Thanks, LivinLife. I would have preferred to have had my double Mx last August but that wasn't an option at the time. It would have been nice to have had "one and done" surgery. I also spend what seems like half my day doing "wall walks" and doorway stretches. The tightness seems to be getting better but it's such a slow process. Thanks for sharing your thoughts.

    Hey again, VLNRPH. You're right... people posting in the LE section are certainly more likely to be dealing with it. I realize that LE is basically a crap shoot; there doesn't seem to be any pattern for who develops it or where. In one of my "wishful thinking" episodes I thought that since I had 32 nodes in my right axilla, maybe that means that my whole lymph system has bunches of nodes and maybe that will help move the fluid. I excel at grasping at straws.

    My tripping on the stairs was due to new slippers with a thicker sole than I was used to wearing. I need to slow down on those stairs!! But since you mentioned the single heavy boob... I do notice that my shoulder on the Mx side is higher than the other, so I have to consciously "level" my shoulders several times a day. I have disk problems in my neck and I don't want that to get any worse! (Another reason for the prophylactic Mx!) Thanks again for your thoughts; I appreciate it.

  • alicebastable
    alicebastable Member Posts: 1,944
    edited February 2022
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    LW422, I don't have lymphedema, at least not diagnosed. I don't get swelling, but my armpit area, side boob, and upper arm occasionally get achy for no reason. Doing slow fist pumps and raising and lowering my arm relieves it.

  • lw422
    lw422 Member Posts: 1,399
    edited February 2022
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    Alice--I'm glad you don't have LE. Your post made me think of another reason to reconsider the 2nd mastectomy... I'm almost 6 months out from the first surgery and still have a lot of tightness, aching, and weird nerve pain. I wonder if it will ever settle down and I cringe to think of having this on BOTH sides. Maybe I should just leave well enough alone.