I'm new here.....

beachmom
beachmom Member Posts: 50
in Breast Cancer #1
Hi,
I've been following the boards for a couple of weeks now, so glad that I found them finally! I've sat back and just kept up with everybody but decided it was time to join in the conversation :o)

I was diagnosed in Sept. with ILC. Upon further testing (MRI), IDC was found in the other breast. I opted for a double mastectomy with expander reconstruction. Surgery was Oct. 25, so just 3 weeks and 3 days ago to be exact! The ILC was stage 2, IDC was stage 1. Thankfully, nodes on both sides came back negative. Both cancers are ER+, HER2 negative.

I am currently hating my drains and impatiently looking forward to getting the fluid to the level of removal! I am also waiting to hear the results of the Oncotype DX test, hoping that my insurance company will pay for both tumors to be tested but haven't heard as of yet. I also need to find out if I am pre or post menopausal......I had a hysterectomy 11 years ago but kept my ovaries. Maybe I breezed through that whole menopause thing.....I'm 53 so it will be good to see just what hormone therapy I'll be on.

My chest is tight! I do have feeling on the top half of my breasts.....that first fill was a pretty hard poke! My breasts feel very hard with the expanders, is that a normal feeling for those of you that have or are going through this process?

I'm anxious to know what my treatment will be. I'm a planner and this is not a disease that can be all planned out in the timeframe that I'd like!

Thanks for listening, you all sound like such a supportive, caring group of people. Although I really didn't want to join your club, I'm glad I found you!

Comments

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #2
    Welcome...sorry we had to
    Welcome...sorry we had to meet here...but welcome..

    Denise
  • csuzanne
    csuzanne Member Posts: 17
    #3
    disneyfan2008 said:

    Welcome...sorry we had to
    Welcome...sorry we had to meet here...but welcome..

    Denise

    I'm sorry you're here, but
    I'm sorry you're here, but you couldn't have picked a better group of women to support you through this ordeal. I was diagnosed in June and had a rt mastectomy. Going for a bilateral and DIEP in December. Hang in there with the drains - they're doing what they're supposed to, keeping the yuck out of your body : )
    Suzanne
  • chikldy
    chikldy Member Posts: 1
    #4
    Hello,
    I had my bi-lateral
    Hello,
    I had my bi-lateral mastectomy Aug. 24, 2011....2 drains out the first week snd the other 2 the second. Once they are out you will feel so much better.
    As for the expanders, I learned to take a pain pill one hour before my fill, that way I only felt pressure, no pain what so ever.
    They are hard as a rock, and seem to be in my armpits at times, it does get better.
    I am where I want to be now, just waiting for my reconstruction surgery Dec. 7th.

    Wishing you a speedy recovery!
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #5
    Hi :) I had a bilateral
    Hi :) I had a bilateral mastectomy and reconstruction with expanders also.
    Yes, the expanders will feel pretty hard throughout the process, and it can get painful toward the end :( My advice would be to let your Dr know if the fills get to be too much, they can always slow down the frequency and the amount of them. I was in such a rush to have my reconstruction done and the last few fills we had to cut in half. Also, if they haven't already told you, those gel ice packs work miracles on sore expanders. I got alot of back pain from it, right below my shoulder blades. Ibuprofen helped with the inflammation - i was on prescription pain medications, but adding the ibuprofen helped tremendously. Best of luck to you, and keep us updated on how you're doing. There are some other ladies on here going through the expansion process right along with you now, I'm sure they will chime in for you!
    *hugs*
    Heather
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #6
    chikldy said:

    Hello,
    I had my bi-lateral
    Hello,
    I had my bi-lateral mastectomy Aug. 24, 2011....2 drains out the first week snd the other 2 the second. Once they are out you will feel so much better.
    As for the expanders, I learned to take a pain pill one hour before my fill, that way I only felt pressure, no pain what so ever.
    They are hard as a rock, and seem to be in my armpits at times, it does get better.
    I am where I want to be now, just waiting for my reconstruction surgery Dec. 7th.

    Wishing you a speedy recovery!

    WELCOME .. so happy that you found us --
    bi-lateral Queen here as well .. and I must stay that the drains (besides lack of arm movement) seem to be my only lingering side efforts ... Please make sure you milk your drains, and keep track of all fluids -- this will help PS to determine when drains can be removed -- I had 4 drains after my bi-lateral surgery -- Ugh!

    Tissue expanders (TE) can be a pain .. but as stated in an earlier post - taking an ibuprofen 1 hour before each fill can help with the pain and tightness before and after each fill. Remember TE are only temporary -and reconstruction surgery is on the horizon.

    Strength, Courage and Hope.

    Vicki Sam
  • Tux
    Tux Member Posts: 544
    #7
    disneyfan2008 said:

    Welcome...sorry we had to
    Welcome...sorry we had to meet here...but welcome..

    Denise

    New
    So sorry that you have to join this club that no one wants to
    belong to. I have no experience with your dx, but I wish you
    the best in your treatment. Keep us posted!
  • sinee
    sinee Member Posts: 196 Member
    #8
    shoulders
    It is normal to hold your shoulders high or just tight, let them drop, relax them, that will ease the chest wall and reduce the pain...you will recieve lots of great support here...the one thing I can say...you are not alone...so stop by anytime, ask anything, confess anything, and enjoy every little thing~hated hated the drain..arghhh, they don't last long~thankfully...Sinee
  • MellieMc
    MellieMc Member Posts: 35
    #9
    Onco Test
    Hey there,

    Glad you are posting it always helps. It was important for me to not feel alone in this.

    My Onc sent my ILC to the same lab. They called me (the lab) and dealt with my insurance. The lady was very nice that called.
  • Ballerina
    Ballerina Member Posts: 152
    #10
    Welcome
    Welcome beachmom, I had a mastectomy with expander last oct. Those dangblastic drain bulbs irritated me more than the expander. My chest was hard for a while but after I began to heal, my surgeon told me to massage my breast. It is much softer now and I now have a little more feeling on top, the side and underneath my breast. I have memory gel implants now and they feel soft and squishy until I get cold so around my hubby I just try to stay hot. I'm glad you decided to join our club.


    Ballerina
  • beachmom
    beachmom Member Posts: 50
    #11
    Thanks for the advice
    Thanks for the advice ladies! Drainage is decreasing, massage is helping just hope the massage and physical therapy exercises doesn't increase fluid! Praying hard that the come out this week, would love to hold my arms down to my sides again!
  • dyaneb123
    dyaneb123 Member Posts: 950
    #12
    beachmom said:

    Thanks for the advice
    Thanks for the advice ladies! Drainage is decreasing, massage is helping just hope the massage and physical therapy exercises doesn't increase fluid! Praying hard that the come out this week, would love to hold my arms down to my sides again!

    Welcome!
    My 1st implant was affected by rads and formed scar tissue which made it hard, but it sounds way to early for that to be the case with your expander.It's probably just the swelling and fluid build up. Good luck!
    Dee
  • beachmom
    beachmom Member Posts: 50
    #13
    initial fill...?
    just an update....

    Drains are out, chest is still pretty tight but feeling better today. As I read through the boards, I'm curious about how much saline was put in at the time of initial surgery. I came out with 300 and 400.....that seems to be quite a bit higher than what I've seen just surfing around here. Just wondering if that could be why I have constant tightness...

    I love looking through the messages and following what's going on with folks! Hopefully, this week my onco test will come back. I have an appointment on the MO on Thursday to get those results and decided on the next course of treatment.

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