Surgery tomorrow & wondering about BRAC tests

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  • BoyMom_2009
    BoyMom_2009 Member Posts: 47
    edited September 2009

    Janice,

    I don't know what to say - I'm so sorry to hear of all of the challenges that you've been experiencing.  I will pray extra hard for you.  Do you have a good support system at home to help you - my goodness, you are going to need lots of help to get through this.  Please keep us up to date on your progress.  And, don't worry about being a downer.  I find that the only people who really understand are the people on these discussion boards.  Sending good vibes your way. 

    Tamara,

    Well thanks for the nice comment.  Not feeling so knock outish these days - lol.  What kind of artist are you?  I think that is so cool.  I love artsy people.  I don't have an artsy bone in my body :)

    I've never had a drain so I have no idea how to hide one.  It sucks that they had to go this route but maybe it will be better so that they don't have to be in pain all of the time.   I guess that we're both still waiting for our Oncotype results.  I have an appointment to meet with the Onco regarding results on 9/23 so they better be in by then. 

    Wishing us all a peaceful weekend - HUGS

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  • BoyMom_2009
    BoyMom_2009 Member Posts: 47
    edited September 2009

    Got a phone call from the Oncology office yesterday.  My test results are in - 16.  I guess that this is in the low range.  I have an appointment to meet with the Onco on Wednesday to go over the results. 

    Tamara,

    Any word for you?

    Lisa

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  • Sparrow
    Sparrow Member Posts: 262
    edited September 2009

    Hey Lisa-  16, that's pretty low, isn't it?  Great news!!!  :D  Have you decided about chemo (I know it's a bit early for a decision yet) ? Let us know what you decide to do.

    They haven't told me if my results are in or not yet.  Part of me really doesn't want to know.  If it's a high score I'd rather wait till my first appointment with the oncologist on 9/29 to hear about it. I'll just worry until then, otherwise.  ;)   

    I have a third post-op appointment with the BS on Wednesday to have the SNB drain removed. The first couple of days I was getting 20 and 30 ccs from it but since then it's been so little I can barely measure it.  :) 

    On a happier note-  I am (mostly) a painter.  I work in acrylics and watercolors.  I love making jewelry too and always have some kind of crazy craft project going.  ;)  I do art restoration (antique prints and paintings) to pay the bills.  It's been a fun way to make a living and I think I've been pretty lucky to be able to spend all day doing what I love.  :)

    Thanks for asking!  :)  

    Janice, How is it going?  I think about you every day!  Sending you lots of hugs!!!  :) 

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  • JaniceRH
    JaniceRH Member Posts: 44
    edited September 2009

    Hi Tamara, Lisa..my visit with the oncologist on Friday was frustrating.  The path lab at the hospital can't seem to find my tissue samples.  They did an ultrasound of the lymph nodes, which showed nothing and he's talking about having to have me undergo the axillary node dissesction.  Right now I just feel like walking away from the whole thing! My next appt. isn't until October 6th..they don't seem to be too very concerned about any of this.

    Lisa, I'm glad to hear your score was in the lower range and Tamara, I'm keeping my fingers crossed for you too!

    Janice

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  • gcarter
    gcarter Member Posts: 65
    edited September 2009

    Boymom what happened with the results of your score. I am going in today to find mine out. Keep me posted. Good luck and your in my prayers.

    gcarter

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  • gcarter
    gcarter Member Posts: 65
    edited September 2009

    sparrow..

    Go with your instincts. My unilateral was done before my braca test. I just got news yesterday that my insurance would cover the expense. My personal belief is move forward, you cannot change the past. Given the tools out there you can always get more surgery. For me I had to get it out. I still wish I knew before the first surgery but, looking back I can say that I had one good arm to use. That helped me. Good luck! Choices, decisions and Dr. visits. Seems enough is enough.

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  • BoyMom_2009
    BoyMom_2009 Member Posts: 47
    edited September 2009

    Hi Tamara, Janice, and welcome to gcarter,

    Tamara, I'm crossing my fingers that you get a low score.  I've decided not to do chemo.  My oncologist told me that I might get a 2% additional benefit from it.  My reoccurance risk is 10% without chemo.  I feel like the risk from chemo doesn't outweight the benefit.  I haven't told my onco yet, I plan to tell him tomorrow.  Suprisingly, he told me that he was fine with me not doing it and that it was up to me if I wanted it.  So, I took a few days to think and pray about it.

    Janice, I can't believe that they lost your tissue samples.  That's crazy!!  I don't blame you for feeling like you should walk away.  What are you planning to do next?  I'm praying for you - extra hugs coming your way!

    gcarter, what did they say about your score?  I hope that it was low ---

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  • JaniceRH
    JaniceRH Member Posts: 44
    edited September 2009

    Hi Lisa, Tamara, and welcome to gcarter too! 

    Lisa, I can understand your decision; stick by it and don't second guess!  We've tried to impress this upon our kids, the decision you make is right at the time you make it, with the information at hand, the circumstances, etc.  Don't second guess yourself, accept it and move on...good for you!!!

    Tamara, you paint??? I'm still trying to master stick people myself!  I do quilt though and I really enjoy that.  Gcarter, we don't live that very far from each other; I'm outside the Lansing area.

    So just to add more drama to my story; I spoke with the folks at genomic health this morning...and guess what?....another tissue sample is being sent; hopefully there are enough cells in this one to do the test...I really just don't get it!!!  oh well, one step forward, two back it seems!  (speaking of backward) I had the shoulder surgery Thursday, I'm counting on the pain working on a scale of diminishing returns!

    I see the oncologist on the 6th, we'll see what he has to say then.  I hope you all are doing well, thanks for standing by me in down in the dumps days!

    Janice

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  • Kleenex
    Kleenex Member Posts: 764
    edited September 2009

    Hi, Ladies!

    Sorry about that - I weighed in on this topic earlier and then unintentionally abandoned you! Janice, I am SOOOOO glad that they appear to have found enough tissue to do an Oncotype test. It would not be fun to have a full axillary dissection if you didn't absolutely need one... I would've advised making a big scene. That's HORRIBLE that they seemed to have lost your stuff!!!

    Tamara - I hope you got your drain out. My understanding is that you really need to take it easy after the surgery for a while to minimize fluid... maybe you were doing too much? I hope you get a nice low Oncotype score... or at least something definitive, so you can know what to do.

    Lisa - I can understand your decision as well. With so much of this treatment stuff seeming almost subjective, you really just need to learn as much as you can, make a decision you feel comfortable with, and then live your life. I was lucky - I had an Oncotype DX of 11, so chemo was taken off the table. It was felt that the side effects wouldn't be worth the small risk reduction. Also, I can and do take Tamoxifen, so that's my personal cancer poison.

    I hope everyone continues to heal nicely and is having a nice fall!

    Coleen

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  • Sparrow
    Sparrow Member Posts: 262
    edited September 2009

    Oh Janice, for heaven's sake!!!  I hope they can get that Oncotype done for you- this is getting ridiculous!!!  :(  I hope your shoulder is better!  I love quilting too!  I made a baby quilt once and it was so much fun... maybe a little too much fun.   I felt like I might be getting addicted so I haven't done much quilting since then.  ;)  I had to move on to other crafts that weren't so time-intensive. Good luck to you!!

    Lisa, I agree with your decision.  If it turns out I'll have less than a 5% benefit I won't do chemo either.  Yay for skipping chemo!!!  :D

    Gcarter, thanks for the input!  Keep us posted!  :)

    Coleen, yes they took the drain out last week, thank goodness!!  :)  I think I did try to do too much too soon.  We were having company that weekend and my husband had to work late all week so I ended up cleaning the house by myself 3 days after surgery.  I felt fine with the painkillers they gave me.  I really should have just stayed in bed!  How great that you didn't have to do chemo either!  :)

    My first appointment with my oncologist was supposed to be today but I caught a bad case of the flu over the weekend.  I haven't been this sick in years.  Today is the first day I could even sit up since Saturday.  They are going to call & reschedule my appointment-  I really don't want to infect anyone else- this stuff is evil!  I won't know my Oncotype score till my new appointment.  I really don't want to hear it over the phone...  : /

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  • BoyMom_2009
    BoyMom_2009 Member Posts: 47
    edited October 2009

    Hi Ladies,

    Sorry, it's been awhile since I logged in.  I've been busy trying to winterize things and get ready for radiation.  I've heard that it shouldn't be too bad but I still don't need the extra pressure of having to things later that I can do now, while I feel up to it.   I will start radiation on 10/20.  I can't believe how long things take.  I thought that I'd say I didn't want chemo and then I would immediately start radiation.  Not so.  I had to wait to get in to see the Radiation Oncologist and then had to make 2 appointments for simulation and mapping followed by education.  Uhhhggg.  I just want to get going.  It will have been 3 months since my diagnosis when I actually start my adjuvant therapy. 

    Tamara, So happy that your drains are out.  I'm looking forward to hearing back from you on your onco score.  I'm crossing my fingers for a low score. 

    Janice, Hopefully things will work out this time.  Thanks for the encouragment on my decision.  I have second guessd myself a couple of times now.  You are right - it doesn't pay to look pay.  I need to live my life and move on. 

    Colleen, welcome back.

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  • JaniceRH
    JaniceRH Member Posts: 44
    edited October 2009

    Hi Ladies, finally some news!  First, the third try at onco testing worked, my score?? 14!!! We met with both my surgeon and the oncologist this afternoon, and while they would still like to do the axillary node dissection, my treatment wouldn't change because of it!  So right now, my feeling is why have more surgery (beyond what is already coming my way) and running the (very high) risk of lymphedema???

    So, I'm starting on Arimedex (sp?) tomorrow or Thursday and the big question is how well will I tolerate it?

    My shoulder is beginning to heal, progress!!!, and I see my PS on the 13th to schedule the surgery to remove the tissue expnder and all of the scar tissue.  At least it seems like things are finally moving forward!

    Janice

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  • Kleenex
    Kleenex Member Posts: 764
    edited October 2009

    Janice - congratulations on having a low Oncotype DX score, and for making an informed decision about whether or not to undergo axillary node dissection. If they don't think it would change your treatment, it is likely an unnecessary risk. I am so happy for changes in treatments over the years in areas like this, because you wouldn't have had a choice several years ago, and yet all that the surgery would've accomplished is staging...

    I take Tamoxifen, and although it has its own constellation of freaky side-effects, I am happy that there's something I can take that will help protect me.

    Glad things are moving forward for you!

    Coleen

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  • BoyMom_2009
    BoyMom_2009 Member Posts: 47
    edited November 2009

    Janice - whoo hooo!!!!!!  That's great news.  Sorry, I haven't logged in for awhile.  I'm half way through radiation and things are going well.  I'm starting to feel tired but it's manageable.  I'm working full time and still carrying on with my active lifestyle.  Where is our friend Tamara???  I've been praying for all of you and hope things are going well. 

    Lisa

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