If You Could Turn Back Time

jessiesmom1
jessiesmom1 Member Posts: 915 Member
in Breast Cancer #1
If you could turn back time to the beginning of your breast cancer journey is there anything you would do differently if given the chance? Would you get a lumpectomy rather than a mastectomy? Forgo a particular treatment? Exercise more? Opt for a different type of reconstruction? Etc. Just wondering how you ladies feel and what advice you might be able to give others. I am looking forward to your responses.

In my case I would definitely have exercised my arms more after my mastectomy and started physical therapy MUCH sooner. That way perhaps I could have avoided developing adhesive capsulitis in my shoulder and having to have shoulder surgery and 16 weeks of physical therapy.
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Comments

  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #2
    I don't think i'd change a
    I don't think i'd change a thing. I've given this my all & fought this beast with everything in me. I hope it's been enough! I had bi-lateral mastectomy with reconstruction, and I don't regret my surgical decision at all.
    *hugs*
    Heather
  • gagee
    gagee Member Posts: 332
    #3
    Heatherbelle said:

    I don't think i'd change a
    I don't think i'd change a thing. I've given this my all & fought this beast with everything in me. I hope it's been enough! I had bi-lateral mastectomy with reconstruction, and I don't regret my surgical decision at all.
    *hugs*
    Heather

    I would have done things differently
    I would have done some of the things differently. First I had to much radiation... still fighting to come out of it.. Nov. 2010 last rad. Also the pill aridimex was so hard on me. Way to many side effects to soon and should have complained to doc sooner. Just to say, not everyone has the problems I have had. Wish I knew then what I now know. Sorry to be to negative.

    Diana
  • roseann4
    roseann4 Member Posts: 992 Member
    #4
    Heatherbelle said:

    I don't think i'd change a
    I don't think i'd change a thing. I've given this my all & fought this beast with everything in me. I hope it's been enough! I had bi-lateral mastectomy with reconstruction, and I don't regret my surgical decision at all.
    *hugs*
    Heather

    Me either.
    Every step was well thought out and as I look back I am satisfied with my decisions. I only wish I could look forward and see a cancer free life.

    Roseann
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    your question timed perfect for me to say
    YES i would make a change..I THINK at this poiont If I knew then what I know now I would NOT have started TAmox....I was recently taken off it...after a bit over 2 yrs..mostly mild side effects (night sweats, leg cramps at night, thickening of uterus and NOW heavy bleeding after 4+ yrs)

    I just ask gyno today If really worth taking post cancer med /how much out weigh risks..

    other then that...nothing differnt...
  • joannstar
    joannstar Member Posts: 403 Member
    #6
    The only thing I would change
    would be to try not to worry as much. Honestly, the fear before treatment was much worse than the treatments (lumpectomies, chemo, rads) themselves!

    I did everything the drs recommended and gave it all I could.

    Oh yes, perhaps not eating as much after dx so that I wouldn't have to lose so much weight now, but I'd keep everything else the same.

    JoAnn
  • natly15
    natly15 Member Posts: 1,941
    #7
    disneyfan2008 said:

    your question timed perfect for me to say
    YES i would make a change..I THINK at this poiont If I knew then what I know now I would NOT have started TAmox....I was recently taken off it...after a bit over 2 yrs..mostly mild side effects (night sweats, leg cramps at night, thickening of uterus and NOW heavy bleeding after 4+ yrs)

    I just ask gyno today If really worth taking post cancer med /how much out weigh risks..

    other then that...nothing differnt...

    So far so good. At this
    So far so good. At this point I would not change any decisions I made or any treatments or surgeries I received.

    Disenyfan I'm curious as to what your doc actually said regarding post cancer meds.
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #8
    joannstar said:

    The only thing I would change
    would be to try not to worry as much. Honestly, the fear before treatment was much worse than the treatments (lumpectomies, chemo, rads) themselves!

    I did everything the drs recommended and gave it all I could.

    Oh yes, perhaps not eating as much after dx so that I wouldn't have to lose so much weight now, but I'd keep everything else the same.

    JoAnn

    Not much
    The only things I would change would be exercising more and letting people help more instead of trying to do it all myself. God Bless
    (((hugs))) Janice
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #9
    joannstar said:

    The only thing I would change
    would be to try not to worry as much. Honestly, the fear before treatment was much worse than the treatments (lumpectomies, chemo, rads) themselves!

    I did everything the drs recommended and gave it all I could.

    Oh yes, perhaps not eating as much after dx so that I wouldn't have to lose so much weight now, but I'd keep everything else the same.

    JoAnn

    @Joanne
    I so agree with you on the worrying part...pre surgery I was terrible...more wondering what I would look like etc..

    THE surgery was not bad at all...as far as pain etc..

    The procedure prior (wire locator did me in)

    Denise
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #10
    I definitely would have
    I definitely would have fired more drs faster than I did. I had my bilateral mastectomy with sentinel node biopsy and no reconstruction. I am very comfortable with my decision and don't regret it one bit. I am very happy being breastless. There is no way I would have been happy with reconstruction. Going braless is great!! I went to the grocery store for the first time in a tee shirt with no coat and it was no problem. Even with all the pain and numbess and crap I have from the nerves being nicked, mastectomy with no reconstrustion was the best for me.
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #11
    cinnamonsmile said:

    I definitely would have
    I definitely would have fired more drs faster than I did. I had my bilateral mastectomy with sentinel node biopsy and no reconstruction. I am very comfortable with my decision and don't regret it one bit. I am very happy being breastless. There is no way I would have been happy with reconstruction. Going braless is great!! I went to the grocery store for the first time in a tee shirt with no coat and it was no problem. Even with all the pain and numbess and crap I have from the nerves being nicked, mastectomy with no reconstrustion was the best for me.

    What I would change
    What I needed for treatment was needle biopsy/2 surgeries(Lumpetcomies 2 weeks later)I wasnt asked what decison I wanted to make.I was told lumpectomy surgeries. BUT it is what I am fine with.

    What would I do different??? I called my doctor's office way to many times to get a OK for the breast center to do a needle biopsy.I THINK my report was on the doctors desk and I was put off by the receptionist.She said she would tell the nurse.Not sure if she did but nothing was done.My 3rd call I was told to make a appt.That is when I should have told the receptionist."I don't want to make a appt I want to talk to the doctor.And very soon". All this time I was getting letters from the breast center to contact my doctor. I then would call the breast center and tell them my problems. SO I would've stood up to the receptionist.She had to know the importance of it. Six weeks went by before the needle biopsy was done.I had a much greater power looking out for me. I wasn't able do it myself.I was so frustrated I gave up and put it in God's hands.I tried to turn to others and got no where.

    Lynn Smith
  • Marcia527
    Marcia527 Member Posts: 2,729
    #12
    I would have asked the
    I would have asked the surgeon for exercises to do after surgery. I protected my arm too well and it froze up and required physical therapy and painful to get moving again.

    I also would have insisted the radiologist look at the site instead of me saying it was fine. I had to sit out a couple weeks for the site to heal before they could finish rads. I did complete treatment tho.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #13
    The only
    thing I would change - taking charge of my weight and not eating mindlessly. I let myself fall back into unhealthy eating and regained every pound I spent 4 months losing. Now I have to relose the weight once again.
    Char
  • skipper54
    skipper54 Member Posts: 936 Member
    #14
    don't think I would change a thing
    When I was diagnosed I said I would do whatever was needed to beat the beast, and that's what I did. We were blessed with great doctors who gave great advice but allowed the freedom to make the final decisons. I WOULD try to get the repeat mammo sometime other than the day after the needle biopsy! That was the morning from H _ _ _! When the tech says don't breath - I couldn't if I wanted to. Squeezing a breast that just had a needle biopsy done less than 24 hours before literally takes your breath away. I'm comfortable with my decisons for surgery and treatment though and would do it again, even if I'd like to forget the rads. (I'm dealing with some nasty burns, still, a week later.)
  • pinkflutterby
    pinkflutterby Member Posts: 615 Member
    #15
    skipper54 said:

    don't think I would change a thing
    When I was diagnosed I said I would do whatever was needed to beat the beast, and that's what I did. We were blessed with great doctors who gave great advice but allowed the freedom to make the final decisons. I WOULD try to get the repeat mammo sometime other than the day after the needle biopsy! That was the morning from H _ _ _! When the tech says don't breath - I couldn't if I wanted to. Squeezing a breast that just had a needle biopsy done less than 24 hours before literally takes your breath away. I'm comfortable with my decisons for surgery and treatment though and would do it again, even if I'd like to forget the rads. (I'm dealing with some nasty burns, still, a week later.)

    I would not change a thing
    I would not change a thing from DX date but If I could go wayyyyy back theres alot I would of changed!!!!
  • camul
    camul Member Posts: 2,537
    #16
    I think I would have
    I think I would have insisted on a bilateral mastectomy, and I would not have had reconstruction. No reconstruction was my initial choice and I let others sway me. But it must have been the best decision at the time because I made it! :))
  • sbmly53
    sbmly53 Member Posts: 1,522
    #17
    Hard to say - the what if's
    I wish I had known a little more - found this board pre-surgery, but then again, it might have been overload.

    I wish I knew how bad rads was gonna kick my butt, I would have asked for help with the house, and prepared some meals. I didn't have the strength or desire to walk to the kitchen to have a bowl of cereal.

    In the long run, I think I made the right choices. Anyway, I'm sticking with them

    Sue
  • jamiegww
    jamiegww Member Posts: 384
    #18
    I guess hindsight is 20/20.
    If I could turn back time to the beginning of my breast cancer journey, I would have insisted they remove both breast or none at all. After the lumpectomy, my surgeon decided I needed a mastectomy because the margins were not clear. He closed his office and referred me to another surgeon for the mastectomy. I should have taken that as a "sign" that I needed to slow down and think about it longer. I'm glad to read that most are happy with their decisions.
  • lizzie17
    lizzie17 Member Posts: 548
    #19
    only one thing
    I went back to work before I was supposed to.....but, I didn't know.

    When I saw my surgeon for a check-up and mentioned I was more tired since I started working, he said, "I didn't release you to go back to work!"

    Somehow that all slid past me, so I guess I would have listened better. :)
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #20
    I wish I didnt read SO MUCH
    I wish I didnt read SO MUCH INFORMATION ONLINE. It made me SICK< SICK< SICK! I read I had little chances of survival. I read I had distant mets. I read my life was over. And it drove myself soooooooooo crazy. I cried, and cried, and didn't eat, didnt sleep, lost 10 pounds in one week, cried some more, threw up, read some more...UGH! I wish I had found you before all of this. thats what I wish!!!!
  • pinkapples
    pinkapples Member Posts: 54 Member
    #21
    I'm happy with my choices
    I'm confident that I made the right choices for me. The only thing I would change is to not go alone in the beginning. I wanted to save everyone the pain so I went alone to quite a few procedures and appointments and only allowed them to drive me home. I remember feeling so alone at times......I would definately let them help me and hold my hand if I could do it over :)

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