Need to decide on double mastectomy - please comment

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Brooklynchele
Brooklynchele Member Posts: 123
in Breast Cancer #1
I had a lumpectomy and partial mastectomy last summer. I was unable to complete the recommended rounds of chemo and did not have radiation (both due to medical reasons). My breast surgeon is suggesting that I consider a double mastectomy because of my "suboptimal treatment". My next appointment with her is on April 7th and I am supposed to have a decision by then.

I am absolutely terrified at the prospect of this surgery. My surgeon told me that it would be a "very serious surgery" because of my breast size. She advised that healing would be at least 8 weeks with the drainage tubes in on both sides for at least 4 weeks. I am allergic to most painkillers (valium, darvocet, percocet, valium, vicoden, morphine, prescription strength motrin, etc) and am afraid of the potential pain.

If you've had this surgery, I would appreciate any kind of first hand thoughts you could share about what you went through. I know imagination is sometimes worse than reality and if I had a better handle on what I am really looking at, it may help me make my final decision. (It's tough to decide to opt into a surgery like this when technically I'm cancer-free right now.)

Thanks in advance everyone.

Hugs,
Michele
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Comments

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #2
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    I had my first mastectomy in
    I had my first mastectomy in 1987 and my second in about 1993. I didn't have any major problems either time. The first one I recovered very quickly in about 2 weeks. The second one I had reconstruction at the same time and it took me about 4-6 weeks to recover. But both went well. Good luck!
  • linpsu
    linpsu Member Posts: 747
    #3
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    pain meds
    I've had a number of different surgeries over the years and I have to say that the pain from the mastectomy was nowhere near as bad as I would have imagined. I probably only needed the morphine in the hospital for 1 day and then I was fine. I don't know what to say if you've allergic to all those meds, but all in all, my pain wasn't that bad. I had the drains for 2 weeks, but I didn't have any pain during that time. Linda
  • dustylady
    dustylady Member Posts: 13
    #4
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    linpsu said:

    pain meds
    I've had a number of different surgeries over the years and I have to say that the pain from the mastectomy was nowhere near as bad as I would have imagined. I probably only needed the morphine in the hospital for 1 day and then I was fine. I don't know what to say if you've allergic to all those meds, but all in all, my pain wasn't that bad. I had the drains for 2 weeks, but I didn't have any pain during that time. Linda

    I had a lumpectomy about 18
    I had a lumpectomy about 18 years ago, then learned I needed a bilateral mastectomy, which I had this past June. I thought it would be very painful, but it wasn't too bad. For me, the worst part was the drains....one of them must have been resting on a nerve or something. Once it was removed, I was very comfortable. I didn't take pain killers except for 1 or two days after.

    Wishing you all the best.
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #5
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    Dear Michele,
    Let me try this again. Just finished a long response & it just disappeared.

    I had a lumpectomy in March, 2010. My margins weren't clear. Instead of having another lumpectomy, I decided to have a unilateral mastectomy (left breast) with immediated reconstruction, and a reduction of my right breast. I was a 38DD.

    The pain really wasn't that bad. I would take Percocet at night, but just Tylenol during the day.

    The worst part was the drains. I had one in each breast after surgery, but only came home with one (left breast). It really didn't hurt, just uncomfortable. I was afraid to move too much. It had to be stripped (so it didn't clog up) a couple times a day. Tom did that for me. I had the drain for only 10 days. I slept in the recliner in our family room the entire time I had my drain.

    I have no regrets about having the surgery. This is a decision that you have to make for yourself. You know I am here for you if you need anything or have any other questions.

    xoxo,
    Jean
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #6
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    I know it's scary
    Michele,

    I'm sorry you've having to make this decision. I had a BMX with immediate reconstruction. I think having just the BMX, you'll be fine. My discomfort was mainly from the immediate reconstruction. I agree that the worst part was the drains, not so much they're painful, but they're just uncomfortable.

    Take care & keep us posted! xo
    dh
  • aysemari
    aysemari Member Posts: 1,596 Member
    #7
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    Wow, am I the only one?
    Michele,

    I would be lying if I said I didn't have pain. I was actually amazed by how
    much. Somehow I didn't think it would have effected my body in such a
    big way but it did. I had lay on my couch propped on pillows for a week.
    My breathing was shallow, so I did breathing exercises and I could not lift
    my hands, forget about arms. The painkillers got me through it though.
    Goes to show you how different we all are. After 3 weeks I was back to
    work.

    And this is what concerns me about you. Didn't your doctor suggest some
    sort of a painkiller that you are not allergic to? I can only speak for myself
    but going through this without painkillers and muscle relaxer (they gave me
    these later, since painkillers didn't not help with the painful muscle spams
    I kept experiencing) would be really hard. Wow, as if making a decision to
    get a mastectomy isn't hard enough in itself you have to deal with the aspect
    of being allergic to painkillers. Speak to your doctor and know your options.

    Please keep us posted on your decision and your treatment.

    Whatever you decide, don't let fear be the deciding factor.

    Love,
    Ayse
  • missingtexas
    missingtexas Member Posts: 146
    #8
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    Everybody is different but
    Everybody is different but I'll give you my experience. I had a bilateral mastectomy at the end of August. I had no morphine after. They prescribed Vicodin which I took rarely. I never had any "pain" but I was sore. My right drainage tube was removed after a week and my left was in for a grand total of about 6 weeks (had been changed 3 times). I was terrified of how badly it would hurt but was actually shocked when I woke up in recovery.
  • missingtexas
    missingtexas Member Posts: 146
    #9
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    missingtexas said:

    Everybody is different but
    Everybody is different but I'll give you my experience. I had a bilateral mastectomy at the end of August. I had no morphine after. They prescribed Vicodin which I took rarely. I never had any "pain" but I was sore. My right drainage tube was removed after a week and my left was in for a grand total of about 6 weeks (had been changed 3 times). I was terrified of how badly it would hurt but was actually shocked when I woke up in recovery.

    Also should mention that I
    Also should mention that I had no reconstruction at the time of my mastectomy.
  • PinkPearl
    PinkPearl Member Posts: 280
    #10
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    My Experience
    Everyone is different in this aspect also. I had a double mastectomy in early Nov. with immediate reconstrution. I think without reconstruction at the same time it is less painful. I did have drain tubes for 4 weeks-my least favorite part and I was in quite a bit of pain for about 10 days but again that was due to muscles being cut for the reconstruction rather than the double mx. You might ask if they can do a chest block at the hospital which did help with the pain and maybe they can find some pain reliever to give you that you are not alergic to. I was sent home in 23 hours which was really early for me so you will need someone at home for a few days to help you with the dressings and drain tubes until you can do it by yourself which for me was day 5 or 6 I think. You have to measure the amt of fluid twice a day and record it for the doctors so they know when to remove the drains when the amt. decreases. You are researching and asking questions which will give you more info and all in all whatever your decision you will then know if it is the right one. I think if I were in your shoes I would do all I could to eliminate the BC right now at the beginning since radiation and chemo were incomplete but you know your condition and heart-felt self the best.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #11
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    aysemari said:

    Wow, am I the only one?
    Michele,

    I would be lying if I said I didn't have pain. I was actually amazed by how
    much. Somehow I didn't think it would have effected my body in such a
    big way but it did. I had lay on my couch propped on pillows for a week.
    My breathing was shallow, so I did breathing exercises and I could not lift
    my hands, forget about arms. The painkillers got me through it though.
    Goes to show you how different we all are. After 3 weeks I was back to
    work.

    And this is what concerns me about you. Didn't your doctor suggest some
    sort of a painkiller that you are not allergic to? I can only speak for myself
    but going through this without painkillers and muscle relaxer (they gave me
    these later, since painkillers didn't not help with the painful muscle spams
    I kept experiencing) would be really hard. Wow, as if making a decision to
    get a mastectomy isn't hard enough in itself you have to deal with the aspect
    of being allergic to painkillers. Speak to your doctor and know your options.

    Please keep us posted on your decision and your treatment.

    Whatever you decide, don't let fear be the deciding factor.

    Love,
    Ayse

    BMX only should be less painful
    with immediate reconstruction, the pec muscle is cut and the tissue expanders are placed.

    I too, couldn't breathe, and it was painful. But just having the BMX, the muscle won't be cut and the hurting to breathe won't be there because they're not cutting any muscle.
  • aysemari
    aysemari Member Posts: 1,596 Member
    #12
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    PinkPearl said:

    My Experience
    Everyone is different in this aspect also. I had a double mastectomy in early Nov. with immediate reconstrution. I think without reconstruction at the same time it is less painful. I did have drain tubes for 4 weeks-my least favorite part and I was in quite a bit of pain for about 10 days but again that was due to muscles being cut for the reconstruction rather than the double mx. You might ask if they can do a chest block at the hospital which did help with the pain and maybe they can find some pain reliever to give you that you are not alergic to. I was sent home in 23 hours which was really early for me so you will need someone at home for a few days to help you with the dressings and drain tubes until you can do it by yourself which for me was day 5 or 6 I think. You have to measure the amt of fluid twice a day and record it for the doctors so they know when to remove the drains when the amt. decreases. You are researching and asking questions which will give you more info and all in all whatever your decision you will then know if it is the right one. I think if I were in your shoes I would do all I could to eliminate the BC right now at the beginning since radiation and chemo were incomplete but you know your condition and heart-felt self the best.

    Aaaaah
    I had immediate reconstruction, that seems to make all the
    difference, when reading your posts.

    Thanks,
    Ayse
  • missingtexas
    missingtexas Member Posts: 146
    #13
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    aysemari said:

    Aaaaah
    I had immediate reconstruction, that seems to make all the
    difference, when reading your posts.

    Thanks,
    Ayse

    I definitely agree that
    I definitely agree that reconstruction makes all the difference!!! The mastectomy in and of itself is not a painful surgery but everybody I speak to who had immediate reconstruction had much more pain.
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #14
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    Hi Michele,
    I had expanders
    Hi Michele,
    I had expanders put in at the time of my mastectomy, and I was also shocked at how quickly I recovered from it. It was not nearly as bad as I thought & in terms of pain - my c-sections for my girls were MUCH worse.
    That's a tough decision you're facing. Whatever choice you make you have our love & support.
    *hugs*
    Heather
  • Angie2U
    Angie2U Member Posts: 2,991
    #15
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    Dawne.Hope said:

    BMX only should be less painful
    with immediate reconstruction, the pec muscle is cut and the tissue expanders are placed.

    I too, couldn't breathe, and it was painful. But just having the BMX, the muscle won't be cut and the hurting to breathe won't be there because they're not cutting any muscle.

    I had a lumpectomy Michele,
    I had a lumpectomy Michele, but, wanted to wish you good luck with your decision. I wish cancer was cured, so, no one would ever have to make this decision.


    Good luck,

    Angie
  • Hippiechick58
    Hippiechick58 Member Posts: 320
    #16
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    Heatherbelle said:

    Hi Michele,
    I had expanders
    Hi Michele,
    I had expanders put in at the time of my mastectomy, and I was also shocked at how quickly I recovered from it. It was not nearly as bad as I thought & in terms of pain - my c-sections for my girls were MUCH worse.
    That's a tough decision you're facing. Whatever choice you make you have our love & support.
    *hugs*
    Heather

    I agree with the gals that
    I agree with the gals that said the drains are the most painful part of the surgery. I had my BMX last September. The surgery went well and the Drs. were pleased with the results. The drains, however, were painful, especially when I had to empty them. But they stayed in only 2 weeks, so it was doable.

    I wish you luck with whatever decision you make.

    You'll be in my thoughts and prayers,
    Dianne
  • Noel
    Noel Member Posts: 3,095 Member
    #17
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    missingtexas said:

    Also should mention that I
    Also should mention that I had no reconstruction at the time of my mastectomy.

    Wishing you good luck
    Wishing you good luck Michele!
  • Chickadee1955
    Chickadee1955 Member Posts: 355 Member
    #18
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    Hippiechick58 said:

    I agree with the gals that
    I agree with the gals that said the drains are the most painful part of the surgery. I had my BMX last September. The surgery went well and the Drs. were pleased with the results. The drains, however, were painful, especially when I had to empty them. But they stayed in only 2 weeks, so it was doable.

    I wish you luck with whatever decision you make.

    You'll be in my thoughts and prayers,
    Dianne

    BMX April of last year.
    BMX April of last year. Discomfort more than "pain"; for both the mastectomy and the drains. I was able to take painkillers, however, so I didn't let myself suffer too much! The drains didn't hurt unless I pulled a certain way, they were just uncomfortable and unwieldy under clothing. I didn't have immediate reconstruction either. I had seen the difficulty that created for my sister and opted to do one thing at a time.

    Good luck and you are right; the imagination of the procedure is worse than the procedure itself. You'll make the right decision and come through it just fine.

    Chickadee
  • 24242
    24242 Member Posts: 1,398
    #19
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    Hippiechick58 said:

    I agree with the gals that
    I agree with the gals that said the drains are the most painful part of the surgery. I had my BMX last September. The surgery went well and the Drs. were pleased with the results. The drains, however, were painful, especially when I had to empty them. But they stayed in only 2 weeks, so it was doable.

    I wish you luck with whatever decision you make.

    You'll be in my thoughts and prayers,
    Dianne

    Another Point of View
    I was not like most of the women here. Though my surgeon believed having a mastectomy was painless and I would get nothing more than T3's he must have forgotten that "We truly are all different." Surgery does comes with its own side effects though rarely talked about and the trauma seems to spark most of them if you happen to be one of the very sensative humans in the bunch that they know now actually exist.
    If I had to it again I would still do the same though I suffered allot because truly for me this is what I needed to do for me. The doctors didn't want to admit to problems that might delay treatments so pushed onwards and it took years to get over it all but I am seem to be the rarity and I am grateful for that, suffering shouldn't be.
    I don't write to scare you but being ready with some good pain medication is a must if needed because pain needs to be controled early if it truly is a issue.
    Good luck with your decision.
    Tara
  • Brooklynchele
    Brooklynchele Member Posts: 123
    #20
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    Wasn't sure how to get my thanks to everyone at the end...
    Thank you to everyone for your candid responses. I would not be considering reconstruction so perhaps that will help some. You've also helped give me some questions to ask my breast surgeon when I go back to see her (about the chest blocks, drainage tubes, etc.) I'm currently a 44DDD with the bc affected breast slightly larger due to the allergic reaction and subsequent (permanent?) swelling. Maybe the size also affects recovery.

    Hugs,
    Michele
  • pinkapples
    pinkapples Member Posts: 54 Member
    #21
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    Mastectomy with expanders
    And a significant amount of pain. I also slept propped up, and/or in the recliner for quite a while. I actaully had alot of pain ( I normally have a very high threshold for pain, gave bith naturally, etc)but this set me back a bit. I found the muscle relaxers worked best for me. I definately needed a full 8 weeks, and it was even slow after that. My hospital stay was a few days and I too had trouble using my arms, had trouble breathing, and I frequently prayed I would not have to cough or sneeze!!! LOL
    Having said that, I would absolutely choose this path again. Having knowledge going in makes a big difference :) Everyone experiences so many different things, but at least here you have read the good to the bad, and yet we have all made it...

    Its a tough decision; good luck to you in whatever you decide and remember, you gotta do what's best for you :0)

    BillieJean

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