my LCIS story, unfolding

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  • RobinLM
    RobinLM Member Posts: 143
    edited May 2010
    YAY! Fantastic news Smile
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  • khandler
    khandler Member Posts: 32
    edited May 2010

    Every thing is in place, it's the day before my surgery and voila-my 4 year old has a fever and yesterday broke out in spots! I am trying not to freak out. The pediatrician said it was viral and asked who was my OC. Turns out he is married to my OC. Can you believe that?! Any way, if I don't get a fever, I'm still on for tomorrow. Wish me luck.

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  • rabrams
    rabrams Member Posts: 26
    edited May 2010

    Best of luck to you.  I had DM september, after having been diagnosed with LCIS july 08.  took me a year of research and a lot of talking to dr's for options.  i too could not go on tamoxifen.  just saw ps today, for nipple follow up, and scheduled tattooing for june 24.  It has been a journey, but can honestly say, the best decision i ever made.  no more going to dr. visit and tests every 3 months, to  "catch it" as they use to say if it became invasive.  all in all, it was not horrible.  just be patient and every day will get better and better.  It will be behind you before you know it, and having piece of mind is "priceless"

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  • KellyMaryland
    KellyMaryland Member Posts: 350
    edited May 2010

    Oh rats! Hope you are both fever-free tomorrow. I'll be thinking good thoughts for you.

    Kelly

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  • MistyJ
    MistyJ Member Posts: 113
    edited May 2010

    Strength waves coming at you!!!!  I hope your son is feeling better and you have missed it.  I know tonight will probably be very stressful for you, but at this time tomorrow you will have it behind you.  Stay strong!

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  • MistyJ
    MistyJ Member Posts: 113
    edited May 2010

    Good Luck, Good Luck, Good Luck!!!!!  Hugs and prayers!!!

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  • khandler
    khandler Member Posts: 32
    edited May 2010

    I have purple magic marker all over my chest. Packed my bags. I'm getting ready to scrub up 3x over. My son's temp went down to 100.1 but he's still puny. I have no temp, so I expect all is going forward. I had my last meal at 6 am. As soon as I finished the phone rang. Why aren't you at the hospital? What?!-pre-op told me my surgery was at 4 pm and to be there at 2!!!!!!!!! They messed up. Now I'm set to go at 2 pm and have to be there at 11:30. Truly hope my early breakfast doesn't mess things up. Well, this is it. Next time I get on, I'll be a new woman.

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  • leaf
    leaf Member Posts: 8,188
    edited May 2010

    Thinking of you!  Hope you have a speedy recovery!  Let us know how it goes, OK?

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  • RobinLM
    RobinLM Member Posts: 143
    edited May 2010

    Wishing you all the very best

    Robin

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

    khandler------hope everything went smoothly and that you are now on the road to recovery. Let us know how it's going.

    Anne

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  • khandler
    khandler Member Posts: 32
    edited May 2010

    Thank you, I am home now and recovering. All went really well. I am having minimal discomfort, but it is getting better daily. I'm a little yucked out by it, but that is also going to get better.  I'm so glad I don't have to wait any more. I do feel a ton of relief. Thank you again for your support.

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  • mabear
    mabear Member Posts: 25
    edited May 2010

    khandler, glad you're home recovering!!  wishing you a speedy recovery :-) 

    mabear

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  • RobinLM
    RobinLM Member Posts: 143
    edited May 2010

    KHandler

    So glad to here you are back home with your family and recovering well,  sending positive thoughts to you.

    Robin

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  • rabrams
    rabrams Member Posts: 26
    edited May 2010

    KHandler,

    Glad you are home and on your way to recovering.  Wishing you all good things. The worst is behind you now, time to forge ahead, and everyday will get just a little better.  Be patient and know you have all of us out here thinking all the best for you.  One step at a timeSmile

    Randi (Rabrams) 

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  • leaf
    leaf Member Posts: 8,188
    edited May 2010

    Peace of mind is so important!  I'm so glad things went well, and you are on the road to recovery.  We're all out here rooting for you!

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  • MRDRN
    MRDRN Member Posts: 537
    edited June 2010

    Khandler,

    Thanks for sharing your story.  I am having a Bi Lat Mx soon.  Hopefully I will wake up and have had a DIEP done with no nodes...that is the plan however things could change.  I am post op TAH  and have BRCA 1, with a diagnosis of both Ductal and Lobular Invasive cancer.   Feel free to PM me

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  • MistyJ
    MistyJ Member Posts: 113
    edited May 2010

    khandler,

    Hope you are feeling better and better!!!!  Glad to hear the surgery went well!  Thinking of you!!

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  • lucylou
    lucylou Member Posts: 49
    edited May 2010

    Khandler

    Glad to hear that things are going well for you. My surgery is in 2 days. I will be glad when i get to the other side with you.  Take Care Lucy

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  • khandler
    khandler Member Posts: 32
    edited June 2010

    I am presently post-op day 6 and all is going fine. I will have the follow up with my plastic surgeon on Thursday. I'm nervous to get the drains out, yet looking forward to being unhooked. My drains are giving less than a teaspoon, so I imagine things are healing well. I get the pathology report tomorrow, should be interesting. I told my O.C. I had signed consent forms for Dr. Tara King obtain slides of my  material. My O.C said that was fine and that she knew Dr. King. I hope to be updated every now and then as to what Dr. King learns about P.L.C.I.S. I'll post an update about my path. report in a few days. I'm so very sleepy all the time due to my meds. I still seem to need 1 Darvocet every 4 hours. It is probably the reconstruction I chose and not the Mast. that is the cause for discomfort. As long as I stay up on med.s I am good. How long were some of you on your meds?

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  • khandler
    khandler Member Posts: 32
    edited June 2010

    Hi,MRDRN  I want you to know it really is easier after surgery than before. It's like standing and looking over the cliff, trying to jump. Now, I have jumped and yeah, my parachute opened! I't is doable, the pain meds really help and as long as you have some one to help you, it is almost easy. I'm very groggy from the meds and sleep most of the time. I'm just waiting to get healed one day at a time.

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  • rabrams
    rabrams Member Posts: 26
    edited June 2010

    Glad you are on the recovery side now.  i was on meds for about 10 days, and as you said, more from being uncomfortable and sore, not so much "in Pain".  Taking it one day at a time is the way to go.  Every day a little better then the day before, so keep it up.  Once the drains are out you will feel much better.

    Randi 

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  • MRDRN
    MRDRN Member Posts: 537
    edited June 2010

    Glad to hear it and can't wait until it is over one week from today. I know I felt better when I had the decision made and now will feel better when I am a week out, like you!  Hang in there, as I am sure it gets easier and easier.   Did you get the BRCA test done?

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  • khandler
    khandler Member Posts: 32
    edited June 2010

    Hi all,

    Got the path report over the phone today. There was no cancer, but multi-focal P.L.C.I.S. throughout the left breast. The right breast was clear. I'm relieved and believe I did the right thing. Just focused on recovering one step at a time now. I'm wanting to get off these pain meds, but am not sure how much pain I potentially have. I'm post op day 7, if anyone feels like advising me in reguards to the meds-go for it.

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  • rabrams
    rabrams Member Posts: 26
    edited June 2010

    Glad to hear path report was good.  You definitely did the right thing, don't go second guessing yourself.  i would suggest trying to wean yourself off of the pain meds, stretch out the doses, and  by day 10 should be good.  You shouldn't be in a lot of pain, just "uncomfortable" and feeling strange sensations that just can't be explained.  Keep us posted and feel well

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  • MRDRN
    MRDRN Member Posts: 537
    edited June 2010

    khandler, thanks for the PM and hope your recovery continues in the best direction!  Sending you good cyber vibes :)))))   Good luck with tapering the pain meds.

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  • khandler
    khandler Member Posts: 32
    edited June 2010

    Post op-day 9. I am almost completely comfortable when on 1 darvocet every 5 hrs. My drains came out yesterday and I thank those who told me to be sure the drains were open when they slid out. I didn't feel it at all. I took a 30 min. walk today for the 1st time. I can't raise my arms up past my belly button. I was surprised they didn't tell me to start crawling my fingers up the wall and that I didn't get a surgical bra for my new tissue expanded mounds. When I called today to double check, they said I truly didn't need to have a bra and I could start trying to gently raise my arms little by little. It worries me how heavey my arms feel and how forward my shoulders want to push in. Any suggestions, feel free.

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  • rabrams
    rabrams Member Posts: 26
    edited June 2010

    Hey there,  Glad you are feeling better.  First, you will definitely not need a bra until you have expander exchange.  As you will see as they inflate them, they may not be perfectly even, position wise.  I was told not to even attempt to lift my arms past my belly button for a while, there are a lot of stitches inside you, that need to heal.  Just point at things and get someone else to get it for you, or get one of those grabby things, to pick up or grab something you need.  it will be a few weeks, and unless you are seeing a physical therapist, which i highly recommend, take it slow......

    Taking walks is the best try not to swing your arms too much though.  There is a lot inside that has to heal, let it.  Glad you are getting off the pain meds, get some good books, magazines and rest.  Its a process, like having a baby, it will take about 9 months from start to finish for you to be 100percent, but everyday will get better..

    best of luck and feel good.

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  • khandler
    khandler Member Posts: 32
    edited June 2010

    I've read other people's complaints about tissue expanders and yikkes! It does indeed hurt and to be quite honest, I'm concerned about the first fill. I seem to be afraid to move, which is not good. I'll be asking for a physical therapist on Thursday. I do see small improvements however it's not as fast as I'd hoped for.

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  • rabrams
    rabrams Member Posts: 26
    edited June 2010

    Don't be concerned about first fill.  It is  actually very cool how they do it and you don't feel it.  You will see results immediately, if uncomfortable from the stretching of the skin, tylenol will help and it will go away within a few hours.  You are only out of surgery less then two weeks right?  Don't expect miracles, it takes a few weeks to get range of motion back, be patient.  Feel well.  

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  • khandler
    khandler Member Posts: 32
    edited June 2010

    Hi rabrams,

    Thank you for the encouragement. I am post opt day 14. Tomorrow I see my P.S. My husband thinks I'll get my 1st fill. I am nervous about it. Thanks for the positive out-look.

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