Recurrence after bilat mastectomy?

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Yes indeed - it's true you can have a recurrrence after a bmx.  I just found this out yesterday!  SUCKS!

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  • MRDRN
    MRDRN Member Posts: 537
    edited May 2010

    Hi everyone,

    I too want to thank everyone for their posts.  This same question came up in my recon class one week after dx when I met a lady there who had to have her implants removed and they mentioned the 1-3% recurrance rate after mx.   I wonder if finding a dedicated breast surgeon makes a difference?  I guess the important thing is be your own best advocate and catching things early is key, if it is the first time or the second.   I still know that having a 60-80% chance of recurrance is better than the small 1-3 and when I asked my BS she said, "even the best of us cannot help sometimes if some microscopic cells remain"...."annotomically they do work to the best of their ability"....I am so sorry to hear of your recurrances, but hopefully you are getting the treatment again that is needed to beat it.   Thanks again for sharing.

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Thanks MRDRN.  Yeah, I cannot believe this.  My cancer has to be pretty aggressive.  Scary!

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  • hollyann
    hollyann Member Posts: 2,992
    edited May 2010

    Sorry to hear of your recurrence, kittycat....This sucks....You beat it once, you can beat it again.......

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  • kbram
    kbram Member Posts: 185
    edited May 2010

    Kittycat, My heart just aches for you.......I am so sorry that you have to fight this beast again.  It is just so not, not, not, fair.  I'm sure you feel like all the wind has been sucked out of you, but please know that all of us at BCO are keeping you in our prayers and hoping only the best for you.  Stay strong!

    Hugs, Kathy

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  • balsie
    balsie Member Posts: 391
    edited May 2010

    kittycat so sorry to hear this!  I will get my results back on Wed.  I hope it is nothing.. I will keep you in my paryers!

    Warmly,

    Balsie

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  • Kristian
    Kristian Member Posts: 68
    edited May 2010

    Hey Kitycat,

    I was really bummed out when I did not know what I was dealing with.  The idea of a recurrence really scared me, but I did get my bone scan results back and a CT scan and the tumour (4-5 cm) is growing in my muscle and chest wall.  It is not in my lymph nodes and there is nothing showing that it has gone elsewhere, it is the best recurrence I could have had-local.  My first cancer was very aggresive, but I feel like I can really beat this now.  I was also told it is not common ( I am not sure possible) to get a recurrence from a recurrence.  So now I just have to go through some pretty aggressive chemo to shrink the tumour, my chemo started on Friday, 4 cycles, then surgery to remove the tumour then radiation, but they cannot do radiation until my expanders are out. So, I feel a lot better about everything, even though I have to go through this crap all over again.  My daughter needs her mommy.  It is her 3rd birthday on Tuesday when I learn how to give myself nupogen shots, not exactly the way I wanted to remember her birthday, but I'm going to fight this all the way! 

    You'll get through this too.  In a year or so we will both be moving forward and this will be behind us once and for all!

    Take care of yourself.

    Kristian :)

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Kristian  - thanks for the words of encouragement.  What are nupogen shots???  I really hope and pray that you will knock this crappy cancer thing once and for all!  I'm glad it isnt in your lymphnodes!!!

    Balsie - I will keep you in my prayers that you get good news this week!

    kbram and hollyann - thank you for the kind words, as well!  :)

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  • 1WonderWoman
    1WonderWoman Member Posts: 2,065
    edited May 2010

    Kittycat- 

    So sorry to hear about your recurrence.   I think fighting cancer is the equivalent of being on "Deal or No Deal" and stating you have a low number in your case!  You can hope and pray but you just don't know.   There is no way of knowing.  The only thing we can control is our response to this because we have no control over it. 

    More to this point, Melissa Etheridge was on Ellen today and she was saying how cancer was a wake-up call to her to live a life that was more in balance.   What is that supposed to mean?   Those of us that get bc are living out of balance?  Like in some way the Gods are castigating us for living out of this so-called balance?  I really resented the remark.  This board is littered with women living good, healthy lives and in walks bc.  She even went as far to say something like 'don't wait for cancer to start living in balance.'  WTF?  Like in some perverse way we have been living a life of BC courtship inadvertently?   Was Sandra Day O'Connor living out of balance or Janet Reno or the thousands of others with bc?  What is this ethereal balance being spoken of anyway?   Recently diagnosed and nervous makes me so not in the mood for these comments.

    Kitty....I hope things get better.   Look at it like you are being required to purge your body of every last cell.   God help us!

    Liz

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Liz -  interesting about Melissa Etheridge.  Maybe she didn't feel like she was living a balanced life and needed to appreciate every moment.  I feel like that sometimes.  I live a healthy life, but I sometimes spend too much time stressing about work and stuff I shouldn't worry about so much.  I just turned on the Ellen show (I'm on Pacific time), but I think I missed Melissa. 

    Thanks for the kind words.  I am fighting to get rid of this beast!!

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited May 2010

    Liz - Wise words my dear!

    Kitty - I am sending all kinds of healthy healing vibes your way. This really SUCKs!!! Hugs! - Jean

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Liz - Okay I'm so glad you mentioned the Ellen show.  I did see Melissa Ethridge.  Now I can see how you'd be annoyed.  I AM NOT GRATEFUL FOR MY CANCER!!!!  I can't believe she said that!  I'd really like mine to go away and NEVER COME BACK!!!

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  • kellyj
    kellyj Member Posts: 75
    edited May 2010

    Kittycat and Kristian- I just got done with the treatments for my recurrence.  I had a bilateral mast in Feb of 2007.  Mine recurred on the same side also.  So, now the waiting game begins.  Good luck on the upcoming treatments, thinking of you both!

    Kelly 

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Thanks Kelly!!!

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  • balsie
    balsie Member Posts: 391
    edited May 2010

    Hi all~  I have good news .... the biopsy showed it was a noncancerous cyst....I am so happy.  I will keep the rest of you in my thoughts & prayers.  I am so sorry you have to go through this ....cancer sucks!!

    Balsie 

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Balsie - that is GREAT NEWS!!!!!  Congrats!!!!  :)

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited May 2010

    Balsie - That's great news!

    Kelly and Kitty Cat - Thinking of you both!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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  • hollyann
    hollyann Member Posts: 2,992
    edited May 2010

    Congrats Balsie!......

    Kelly and KittyCat thinking of you too.........Hope all is well.......

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  • balsie
    balsie Member Posts: 391
    edited May 2010

    Thanks everyone!!!  It is a great feeling.  Thinking of everyone that has to endure this again, my heart goes out to you.

    warmly,

    Balsie 

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  • Kristian
    Kristian Member Posts: 68
    edited May 2010

    Hey Kittycat,

    It's been awhile since I've been on. Neupogen shots are given to boost up your immune system, they help your bones produce white blood cells.  I have to have 7 shots per chemo.  My chemo started on April 30 and I am supposed to have 4 cycles, then they will see if they can do surgery.  I really hope they can.  Good news is the tumour is shrinking-yay! Bad news, my hair is supposed to fall out again (probably this week-end), and although I know what it is like and I know it grows back, it was growing pretty good and I don't want to lose it again :(  After my surgery, they are planning on doing radiation as well. What treatment plan do they have you on? Have you heard any more news on the cancer, is it a local recurrence?  Hope you are doing well. 

    Balsie, so happy for you, it is great to hear good news like that!

    Kelly J, what were your treatments for the recurrence?  Did it have the same "markers" as your original cancer?

    Liz, I loved the comments about the Ellen show and Mellisa Ethridge.  I agree, sometimes the comments people make are crazy, I am definitely not grateful for my cancer.

    I was wondering if anyone else has had issues with getting treatments with expanders in. I did not have a chance to get my exchange surgery before the cancer grew and now I am waiting patiently to have them removed.  The metal component is going to make radiation treatment tricky, and I cannot get an MRI.

    Take Care All!

    Kristi :)

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  • Pamelajo
    Pamelajo Member Posts: 346
    edited May 2010

    I had a local recurrence after bi-lat mast.  My cancer also mutated from er+ to triple neg.  Weird.  So, I'm back on the treatment plan.......and yea Kristi, my hair was just growing in good too.  I finished chemo last time Oct. 09.  Found the new lump in Feb 10.  Aggressive lil bugger......but I got it small and the PET scan came back clean.  4 a/c treatments, 12 taxol, and a month of rads, then I'm done.

    As far as TE's, my PS said they weren't tearing down my reconstruction to take care of this.  My onc agreed.  I still get fills through chemo, and my radiation onc says it won't be a problem.  She just wants all the fills done before we begin radiation.

    Good luck ladies.  BC is a beast...  be diligent, be daring, and be bigger than life.

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Pamela - your dx was the day before mine.  If my former BS got off her rear end and called me the day my results came in, my dx would have been the same day as yours.  I still consider mine to be 6/17 because that was the moment I heard the words, "you have cancer."  Ughhh...  I'm tired of the repeat performance, though!!!!!  12 rounds of Taxol!!!!  Wow!  That's crazy!!!

    Kristian - they think it's a local recurrence.  They didn't find anything in the nodes and my margins this time were clear.  I'm supposed to be getting a PETscan, but my onco is once again MIA.  I have a 2nd opinion from another onco here locally on the 20th and another appt with an onco at Sloan Kettering in NYC on the 27th. 

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  • kellyj
    kellyj Member Posts: 75
    edited May 2010

    Kristian- my recurrence treatment has been 4 a/c and 4 taxol, 5 weeks of radiation, ovary removal and a new antiestrogen drug. I was on tamoxifen when it came back.  I have never had tumor markers taken.  My onc believes that they are unreliable enough not to go that route. I did have a clean pet scan, with some uptake in the right side axillary lymph nodes. They all (surgeon, onc, and radiologist) believe it was due to the lumpectomy surgery a couple of days before.  My tumor did maintain the same characteristics.ER+ PR+ and her 2 neg.  I am still stunned that my cancer returned, as I am sure you all are!!!

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  • modernmade
    modernmade Member Posts: 11
    edited May 2010

    I just read Laura's post, and hope she is OK. I have a similar situation developing:

    I am 2.5 years out from my BLMX, just finished the last of my reconstruction final touches yesterday (fat grafting to my nipple). I woke at 4 am - flat on my back, and I felt a lump at the center of my breast bone. Early this morning I called my breast surgeon and can see her Monday. I called my Onc, and left a message. Ugh! I'm terrified! I just allowed myself to move on - threw out all my cancer magazines and medical journals last week.

     Am I over-reacting? Is this crazy-cancer-anxiety? 

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited May 2010

    Oh modernmade - I am so sorry. I pray that you are truly over-reacting!!!!!!!!!!!!!!!!!

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  • modernmade
    modernmade Member Posts: 11
    edited May 2010

    Thanks. My onc's triage nurse called me at dinner. She's faxing my most recent blood work to the Breast Surgeon for my appointment Monday morning. Seems 10 minutes out of every hour I freak-out. The rest of the time - I'm fine - figuring out what I'll plant in my garden, what I'll make for dinner, etc. 

    Last year my onc told me that a cancer diagnosis is just like a terrorist attack - you never know. You try to go about your business, but that fear is right under the surface. How true.

    I appreciate a place where I can put this down in writing - I wouldn't dream of worrying my family unnecessarily.

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Terrorist attack for sure!!!!  Cancer is a terrorist!!!

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  • Pamelajo
    Pamelajo Member Posts: 346
    edited May 2010

    We cannot continually live in fear.  I cast it aside.  It sneaks up.  I cast it aside again.  We are all born to die, some of us earlier than others, but there are no guarantee's.  All we can do is live the healthiest life we can and try to help ourselves beat the beast down.  But, today, on my way to Indy to get my boobs filled, I could be killed in a firey car crash.  The odds of that are greater than me dying from this cancer, sooooooo.....  why should I let cancer scare me?  I may get struck by lightening as I'm crossing the lot to the other building at work holding my big umbrella with the pointy metal thing.  I could die of a huge case of food poisoning, or a stroke, or CHEMO!!!  LOL

    Cancer is only 1 way to die out of thousands.  Everyone everywhere breathing air at this moment are dying. 

    All that said, I know there better be something good waiting for me on the other side for having endured all this. LOL  I want my Heavenly home built out of dark chocolate and sexy swedish massuese on stand-by. 

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  • my2boys
    my2boys Member Posts: 339
    edited May 2010

    I had a local recurrence after bilat mast.  The cancer grew back in the little bit of fatty tissue left behind.  I guess where there is a will, there is a way, right?  Back in chemo and trying to stay strong. 

    Regarding the Melissa Ethridge statements.  I remember back in 2008 when I was first diagnosed and she was on some talk show saying how her cancer was a blessing and then she went on to describe how chemotherapy was like "poisoning".  I was about to begin chemo treatments and I was absolutely terrified!  That woman should think before she opens her mouth! 

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  • Pamelajo
    Pamelajo Member Posts: 346
    edited May 2010

    You hang in there my2boys!  Had my second A/C tx today.  2 more of those and 12 taxol then rads, and I'M DONE!!!  woo hoo.  Recurrence sucks, no doubt, but we caught it.  We caught it........it didn't catch us.  Stay strong Lady!  We'll row this boat we are in to shore eventually :)

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