Bilateral mastectomy with DIEP Flap ... aftercare ... anyone getting scanned?

Lisa810
Lisa810 Member Posts: 3
in Breast Cancer #1

I am 6 years out from stage IIb breast cancer diagnosis & treatment. When I was diagnosed, my path seemed clear. I was very lucky to have fallen in with a great team of doctors within my medical group, and I credit them with saving my life. They gave me the facts, straight from the hip, left decisions up to me yet clearly voiced their opinions. Despite having cancer in only one breast and several nodes, I opted to undergo a bilateral mastectomy with reconstruction. Chemo wasn't horrible - except for the hair loss - I barely missed work. Radiation - just to be sure - damaged my implants, and my wonderful plastic surgeon referred me to a DIEP flap expert. As of 2011, I have two very natural breasts that are made of my own body tissue. Like I said, lucky.

I am progressively getting more and more paranoid that I am not receiving proper aftercare monitoring. Since I don't have any breast tissue left, I've been told repeatedly that I do not need sonograms or MRI'd. (Mammograms aren't done for DIEP patients.) My oncologist retired and I've had a difficult time finding a replacement with whom I feel comfortable and safe. My breast surgeon - who I adore - actually went tough love on me when I cried in her office, recommending I find a therapist and if I don't trust her aftercare plan, I should find another doctor. Which I've done, but even my new breast surgeon feels that physical palpation exams every 6 months and routine bloodwork, not even tumor markers, are all I need. It's nearly impossible to find doctors that have experience with DIEP flap patients.

I'm having a hard time accepting this very laid back aftercare plan. I went with my gut when I was diagnosed. But now, perhaps my instinct is biased and paranoid?

I would love to find a survivor who's in a similar situation as myself, but DIEP flap bliateral mastectomy patients themselves are few and far between.

I am on anti-depressants and have a good therapist. But I'm always second-guessing, waiting for the other shoe to drop and praying that I'll be lucky again, and any recurrance or new cancer will somehow - probably through dumb luck - be found early.

Survivorship has a host of issues no one warns you about. No one is writing about how to cope when you've had both breasts removed, and the doctors laugh it off, tell you to calm down and relax, scans won't help and we can't do anything until metastic symptoms appear. I'm not a hypochondriac, but there has to be a middle ground between fighting for scans like a crazywoman and "let's wait and see." Recurrence symptoms for breast cancer are scarily unnoticeable .... until they're not.

Thanks for listening. If anyone has any advice or suggestions, I'd very much appreciate it!

Comments

  • lintx
    lintx Member Posts: 697
    #2
    Hi Lisa

    I had a bilateral and diep flap in 2012, so I still see my onco.  She released me for a year when I saw her in Feb, unless I feel the need for an appt.  I've never had a scan of any kind since my surgery, just blood work and in office exams performed by my DR, like the GYN would. They don't like to expose you to more radiation than is necessary.  The gym has always been my thing for life.  Sure does help with anxiety issues.  We all handle things differently.  Doesn't make us right or wrong. I'm sending you a big cyber hug!  Linda 

  • childofthestars
    childofthestars Member Posts: 251 Member
    #3
    DIEP follow up

    Hi Lisa

    i had bilateral DIEP surgery in August 2013 & thankfully like you had a fab result..... Like you I was told that no f/up scans etc are necessary, however earlier this year I was having stabbing pains in my left breast & my breast consultant suggested that I have an ultrasound which thankfully showed nothing of any consequence ....... He has told me that he would like to see me again routinely once a year or sooner should I have any worries and I am very happy with this..... But under current thinking DIEP pts are NOT followed up regularly unless there are any physical concerns.... Try not to dwell too much but if you do have concerns push for an ultrasound.... 

    Best wishes

    Michelle x 

  • button2
    button2 Member Posts: 421
    #4
    Dear Lisa,

    I am 2.5 years from diagnosis (also Stage 2B) with a single mastectomy (no reconstruction).  I get scans every 6 months plus cancer markers. After this year, I will get them annually until 5 years, and then stop. Since you are 6 years out, I think what you are doing sounds logical. Try not to dwell on cancer too much. What if you live to 90 and then wonder why you wasted so many years worrying? God laughs at those who make plans. Life is short for everyone! Enjoy each day. I say to myself every morning as I get up. "I will die like everyone else, but NOT TODAY!" Hugs, Anna

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