Breast Cancer monitoring after Bilateral Mastectomies

Options
craftykimmer
craftykimmer Member Posts: 3
Breast Cancer monitoring after Bilateral Mastectomies

Comments

  • craftykimmer
    craftykimmer Member Posts: 3
    edited February 2010

    Hi, this is my first post here.  My name is Kim, I'm 51 and had Bilateral prophylactic mastectomies for LCIS in 2001.  When I was diagnosed the options my doctor gave me were Mastectomies, or close monitoring every 6 months with mammograms, as well as Tamoxifen.  I also had another  lump in my breast that she was initally going to do a 6 month follow up on but after the diagnosis of LCIS on the other one, she advised an excisional biopsy at the least within a month, as well as re-excision of the original biopsy site due to unclear margins.  So with that information, and the fact that I am a mammographer with 20 years of experience with breast cancer, I made my decision to have the mastectiomies.  I just couldn't take a pill every day and go to work and see breast cancer and wonder when or if it was going to be my turn. 

    I'm so happy with my decision.  I really feel like I dodged a bullet.  I had very "dense" breasts that were not easy to read on mammograms and more than likely I was in for a lot of biopsies and scares in the future.

    So here's my question.  Have any of you ever heard what the follow up on mastectomy patients is?

    Some doctors say we don't need any follow up.  Some say MRI either yearly or everyother year.

    I've not been able to find any solid recommendation on this.  As most of you know, there is always some amount of residual breast tissue remaining, and even tho our risk is small, their is still some risk.

    I was hoping to ask this question to some of the MD experts at this site but could not find any way to do that. 

    Does anyone know of any standard recommendation?

    I would greatly appreciate any response.

    Thanks

    Kim

  • Leah_S
    Leah_S Member Posts: 8,458
    edited February 2010

    I had a single mast and am planning to have a prophy mast on he other side. I was told monitoring would be by u/s.

     Leah

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2010

    Hi Kim

    I just had bilateral mastectomies for PILC and I am also curious about this.  I have an appointment with the medical oncologist tomorrow, so I will be asking what he recommends. I will let you know what he says.

    What kind of follow up have you had since you had the mastectomy?  That would have been very difficult to be a mammographer and seeing breast cancer at your job on a daily basis.

    Cathy

  • jinnypel
    jinnypel Member Posts: 73
    edited February 2010

    I had implants done on mine and find it hard to feel the breasts its still really hard, and it's been 3 yrs.  I don't know if there is a follow up protocol in the UK as my surgeon just feels my breasts and says off you go.  I've had an MRI recently and CT scan but it was because I had a tumor on my spine (not cancer) otherwise I wouldn't have had it.  Anybody from the UK know what the guidelines are?

  • craftykimmer
    craftykimmer Member Posts: 3
    edited February 2010

    Hi Cathy,

    I initially saw an oncologist every 6 months for a couple of years, but I stopped because my breast surgeon said it really was not necessary.  I've had a couple of MRI's over the years because I developed an inflammation in my right breast and a small fluid build up around the implant (seroma).  This happened when I was exercising and I think I just occasionally tear a little scar tissue or something.  But I've never been prescribed an MRI just to check me on a revenitive basis.

    As a mammographer, I feel MRI is far superior to US.  However, it is the most expensive test and one your insurance comany may balk at paying for.  The reason is that with MRI, you are given an IV injection that will enhance any tumors that are there, and you can see in far better detail than US.  Also US is operator dependent and the potential for human error ( missing a cancer) is present. 

    Thanks for the reply, I'm interested to see what your oncologist says

    Kim

  • upcreek
    upcreek Member Posts: 203
    edited February 2010

    I was told that I did not need any further MRI's or mammograms.  I have read on another post that some women were advised to have ultrasounds to area above implants and axilla area.

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited February 2010

    Kim,

    I had a PBM with one step implants in Jan. 09. I also had LCIS and felt the same way you did. I'm glad I had the surgery and have no regrets.

    I was told by my BS and my PS just to do a yearly check up with both of them. Today I went to the BS and she said that I was fine. Because of the implants I will have to have a mri every 3 years.   

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2010

    Kim, I have to agree with you that I think MRI is a far better way to watch things. My invasive lobular was not picked up on either mammogram or ultra sound only on MRI.  I am just so grateful that it was caught and so early.

    Cathy

  • riley702
    riley702 Member Posts: 1,600
    edited December 2010

    What about BMX without reconstruction? What kind of follow up can I expect? I see my onc in January.

Categories