Calling all TNs

15855865885905911198

Comments

  • OBXK
    OBXK Member Posts: 791
    edited September 2012

    Annie & Bernie,

    Thanks for the laughs!



    Kathy - I hope you and mom are feeling well soon. Sure hope she isn't blaming you!



    Belle - sorry your hair didn't turn out as planned. I colored mine a few weeks ago. The chemo had taken so much pigment out of my hair, it didn't give me great results either.



    Minxie - calming thoughts your way!

  • borntosurvive
    borntosurvive Member Posts: 213
    edited September 2012

    LX or MX or BMX is a personal choice.  For me I knew I had to have the BMX even though my surgeon told me he'd "get it all with a lumpectomy" and he said "the 5 year stat is the same for lumpectomy with chemo and rads and mastectomy with chemo".  I just knew that for me I could not leave a breast and have the worry of having the breast (or breasts) hanging around.  In MY mind I did everything I could to fight this beast.  If I choose to believe that I am limiting my risk by having a BMX then so be it.  I would never expect anyone else to feel bad or like I am suggesting that their cancer is at a higher risk of coming back then mine because they had a lumpectomy.  This journey is so personal and we all need to do whatever it is that we need to do to ensure we gave this beast the best shot.  I would never want to look back and think "I should have......I wish I had of".  For me that meant getting rid of my breasts.  This journey is SO much psychological/emotional that I knew I had to do the double mastectomy.  After the chemo is over and life moves forward, all we have are ourselves, our thoughts, our worries, our fears.  It helps me in MY journey to know that I did everything I could.  Also it was a way for me to control something when so much is out of my control. 

     Luah......I am sorry if you are offended, that would never be my intent.  Please understand though that people thoughts and feelings that they express are not directed at anyone in particular.  I'm sorry if you were hurt by this.  It's a lesson learned for all of us to be aware of how our words may affect and hurt others.

  • Luah
    Luah Member Posts: 1,541
    edited September 2012

    Born: Be assured I am neither offended nor hurt, nor do I take it personally. I'm just angry when comments suggest, contrary to medical evidence, that Mx is the surer way to fight this disease. I think we do an enormous disservice to women who visit here, especially newbies, when such comments are made. And it disrespects the very valid, evidence-based choices that other women make.

    You're right that this journey is very psychological/emotional... and we ought to be very clear, as you have been, when those aspects -- rather than evidence -- are swaying our decisions. That's all I'm saying. 

  • gillyone
    gillyone Member Posts: 1,727
    edited September 2012
    Luah - one thing I have noticed on BCO is that some people are very willing to pass off as fact something that someone else just gave an opinion about. It reminds of the game "chinese whispers" where information changes as it is passed down the line. I don't think anyone is deliberately misleading, it's more thaat they believe what they read (or think they read) on the boards and it is often unsubstantiated.
  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited September 2012

    So true gillyone.....takes a lot of thinking to figure things out.

  • TifJ
    TifJ Member Posts: 1,568
    edited September 2012

    Luah- If I had had the option for a LX, I would have done it-no question! As it was I had both IDC and widespread DCIS so there was no choice, but to do a MX. I think you are right statistically, no difference. It really is a crapshoot! A crappy crapshoot!!

  • Luah
    Luah Member Posts: 1,541
    edited September 2012

    Gill: Thanks so much for that - I agree! 

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012

    Good morning ladies. Well I'm back to typing.  Fingers are still not right but I can type better than I did a little while ago.  Hopefully they will improve with time.

    Inmate -glad you are feeling a little better.  Hope you aint eaten by a crazed penguin you could give him indigestion lol.  Glad you are enjoying your time with that gorgeous little Baker man.

    Lovelyface - glad you got a laugh with the cat.  This is what we all need to help us through.

    Painting - I just love your art.  You are one talented gal. 

    Bak94 - wow a 9 year survivor.  You send us all hope.  I know what you mean about the male gyne onco.  They should all be women.

    Beelleeast - my hair is finally growing again. Coming through salt and pepper.  I thought about dyeing it silver but have heard a lot of horror stories about no pigment from chemo so might just wait a while cause I don't want to end up green or some guastly color.  

    Dorman - my 46th anniversary is coming up next month.  Only seems like yesterday......

    Minxie - just hand on in there girl they say patience is a virtue!!

    LRM216 - thanks for the article.  Seems like triple neg is causing quite a bit of interest lately so lets hope.

    Tazzy - good to hear you have a rads date.  You will sail through it.  Last leg mate....

    Kath - I knew you were at that place and why you haven't been on here. How many times must I tell you to keep away from that bloody casino.  You know its not good for you.  Hope your mum tells you off too lol.   

    Luah - I think what ever surgery we have we think that this is the one that is going to beat the cancer crap out of us.  I was not given a choice it was MX and that was that but I often think if I had had an LX and the cancer came back they would have more to take away whereas if it comes back in that area there is nothing to take away for me.  I have noticed that lumpectomy seems to be given to American women more which is good in a way cause why take away what may not need to go but having said that lots of ladies here have a lumpectomy as well.  In my own treatment I just wanted the cancer to be gone so didn't question the MX until after but too late now. I suppose the cancer was extensive and that was the better option for me at the time.  I think, we all think and hope we have done the best for ourselves that we could given the circumstances at the time. I'm like Jan and thinking of having the other breast removed (1) so it can't come back in that breast and (2) because I think it is ugly with one swaying breast and I would rather be a flat top like Karen.  I think it is personal choice given what the doctor says and we should never put down any of the surgery or question a decision just because we didn't have that type of treatment.    I personally think there is good and bad for each of the surgery types and everyone should base their own personal decisions along with their oncologists advice, on what would be the best option for them.  I hope I haven't offended anyone with my words, no intention of doing that.  

    Have a great day ladies.  Keep well and stress free. Hugs to all. Annie              

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012

    Today's chuckle

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012

    One other thing ladies. Regardless of all the treatment I have had I never have felt free of cancer.  I feel like I  am a ticking time bomb just waiting for it to rear its ugly head again.  Hopefully I am wrong and this is just a stage I am going through because there doesn't seem to be anymore treatment after rads.   Annie    

  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012

    Oh Annie..... Life is a ticking time bomb.... Lost a sister at 28, a brother at 47, and my Pops who was 59, and none of their deaths were cancer related.... I am the very first cancer dx in my family. So, we never know when the truck will hit or the tornado will wipe us out or the heart will stop ticking, so we live, love and laugh while we can, right?!

  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012

    Love the Moo Cows! Thanks for the chuckle :-)

  • browerl
    browerl Member Posts: 126
    edited September 2012

    I have noticed with the controversy over lumpectomy or mx,"just my observation not science" looking at the footnotes on post, it looks like a lot of women have a lumpectomy only to return in a few months and have a mx.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012

    Isn't this gorgeous ladies. Just love her slippers. Hope I don't look like her in the mornings at the computere but got a sneaky feeling I do!!

       

  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012

    OMG Annie! I work in my PJ's most days and get dressed around 3..... so I'm sure this is a picture of me most mornings! Too funny!!

  • the5owens
    the5owens Member Posts: 99
    edited September 2012

    Ladies I have my lx with snb in the morning...first step for me. I am a nervous nelly. Wish me luck!!

  • Titan
    Titan Member Posts: 2,956
    edited September 2012

    Ah Cocker...I know the ticking time bomb well..but what are you going to do....?  You just keep on being your own loving sweet funny self and we will worry for you ok?

    Oh yeah..the lx vs. mx stuff...agree with you Luah..reading on here and hearing the "doing everything you can stuff"....I hear ya..and I wonder to myself..did I do the right thing..or not?  but this isn't all the equation here...some of us have chemo before surgery...some don't...some have taxol before AC..some don't....some don't have adriamycin at all....and that is supposed to be the "best"...so anyway..all of our treatments are so different......guess we won't really know what is the "best' for a few years...like we all say it is a crapshoot.

    I just wish we knew what really is the BEST treatment..triple negative is such a broad diagnosis and even though we are all triple negative..the biology of our tumors could be soo different that some things work and some don't..dang it.

    And yes Gilly...we are not doctors on here..we just have opinions..but I think some of our opinions are right on...

    I love the information I receive on here...and I take it to my onc and talk to him about it..but bottom line..it is his and my BS's knowledge that I go with in the long run...I have to...

  • browerl
    browerl Member Posts: 126
    edited September 2012

    I have had 3 rounds of chemo and the bottom of my feet and my hands are becoming real sensitive like they have been burned or the skin is thinning.  Has anyone else had this?  My husband wants me to call my onco but it is not bad, just my feet really bug me after my Zumba class with the sweating. No numbing or tingling just sensitive.

  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012

    The5owens - Thoughts are with you tomorrow! We are there with you in spirit!



    Brower - Zoomba while in A/C?! You are Wonderwoman! I had no problems with sensativity in my feet and hands...... But way to tired to dance and sweat. You go girl!

  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012
  • onvacation
    onvacation Member Posts: 1,344
    edited September 2012

    I was never given a choice - they just said they were going to take the lump out.  I really think they were surprised that it was TNBC instead of the hormonal kind.  So can't really comment on the BMX vs LX thing.  I agree it is a crap shoot.

    I just have the belief I will be fine and all the cancer is gone!  I know it is a bit polyanna, but I'm ok with it now! 

  • borntosurvive
    borntosurvive Member Posts: 213
    edited September 2012

    brower: my feet were sensitive before they went numb.  I would try to keep off of them as much as possible and sit with them up when I could.  A good soak helped too.  And yes.....you're a super star if you're rocking the Zumba while on A/C.  The only thing I was rocking was my bed, the bathroom floor and the chemo suite.  You GO girl!!

  • gillyone
    gillyone Member Posts: 1,727
    edited September 2012

    Titan, my point was, that yes we have opinions, and sometimes they ARE right on, but that others reading the information internalize it as fact and then spout it out inappropriately. Opinions get turned into facts from repetition.

  • christina1961
    christina1961 Member Posts: 736
    edited September 2012

    Annie, we are all ticking time bombs - but I never thought I would get cancer even when I had cancer and didn't know it so I know my "gut feelings" are often wrong. I was cleaning the water bowl in the indoor/outdoor fenced cat area a couple days ago. I picked up the water bowl and felt something brush against my hand.  I looked down and saw a black widow spider.  Our poisonous spiders here only include the black widow and brown recluse, but the sight of a black widow, with its large glistening black body and bright red hourglass sends me into full fright mode.  It happened to be my hand that has the numb index finger so I spent the next couple hours watching my finger because I was afraid I could have been bitten and not have known.  Turns out I was fine - but I was thinking how ironic it was because I am so afraid of this cancer taking me out and it might well be something random like a poisonous spider bite.  BTW, your cartoon is hilarious, and that definitely resembles me in the mornings. 

    The5owens, sending you the best for tomorrow. Brower, I had sensitivity on the balls of my feet and still do.

  • rachelvk
    rachelvk Member Posts: 1,411
    edited September 2012

    The5owens - Good luck with your surgery. Let us know how it goes, and give yourself time for a good recovery.

    Annie - Yeah, the ticking bomb... I'm also at a point when I feel like I should be celebrating my 'victory,' but I'm not ready to yet. But I think what I read on this thread and a few others about tackling that day in day out has really helped me get my mind around it. Hang in there. You've got great spunk.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012

    You know I don't regret having a MX or an LX if my oncologist had chosen that for me but I do regeret being a TN and not receptor positive as I feel I would basically have had a better chance.  Only my opinion.   

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012

    Oh my god Christina. I would have died just seeing the spider.  Those brown recluse ones are huge as well aren't they. I have never been able to stand those creepy eight legged creatures.  The black widow is poisonous in England as well.  I think I might just visit you but not stay lol

  • bak94
    bak94 Member Posts: 1,846
    edited October 2012

    I wasn't going to weigh in on the lx vs mx discussion, but I just can't resist! I originally had right lx in 2003, that is what I wanted at the time, even though I did second guess myself a bit. Fast forward to 2011, new primary opposite breast, found late because of dense breast. BMX this time. And radiation to left side now. My docs did not test me in 2003 for brca, they thought bmx and hysterectomy would be too aggressive anyways so I didn't fight to have genetic testing, even though my mom died of ovarian cancer and 3 aunts had breast cancer. My new docs tested brca right away, which I tested positive for. I hope I have the facts right, but I believe that there is a 20% chance of a new breast cancer popping up within 5 years if you are brca pos. Wow, don't you think my first docs should have steered me in a different direction?I did do research at the time, but went with what the doc said, and did not do a second opinion. My gyn today said that they recommend hysterectomy for women of brca 1 pos by the age of 35. 35!!!! Another wow! Mine is now scheduled October 15th, at the age of 45. Do I wish I had bmx in 2003? Yes! Would it have guaranteed I stay cancer free? NO! It may have prevented my second tumor though, as it was definitly in my breast. I just think there are so many different situations and there is no way to say which treatment is better, unless you now ALL of the specifics, and then, even then there is not a clear cut answer. So, while a lx and bmx have the same recurrence outcome, an lx certainly can not prevent a new tumor in the opposite breast, a bmx possibly could. I realize not everyone is as high risk as me, but my thoughts are if your body made the cancer once...My intention is not to scare anyone, but to really have them consider ALL treatments available to them and make an informed decision, based on at least 2 opinions from top doctors. Sorry about my rant. And like I said in the beginning, I was happy to have a lx the first time, and of course I couldn't predict the future!

  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited September 2012
    Joe and Wanda had a small apartment in the city and they decided that the only way to pull off a Sunday afternoon quickie with their ten-year-old son in the apartment was to send him out on the balcony and order him to report on all the neighbourhood activities.

    To a young boy, they thought, spying would be a lot of fun and would distract him for an hour or so.

    The boy began his commentary as his parents put their plan into operation.

    "There's a car being towed from the parking lot," he said.

    "An ambulance just drove by."

    A few moments passed.

    "Looks like the Andersons have company," he called out.

    "Matt's riding a new bike and the Coopers are making whoopie."

    Mom and Dad shot up in bed. "How do you know that?" the startled father asked.

    "Their kid is standing out on the balcony too," his son replied.

  • Sandlake
    Sandlake Member Posts: 211
    edited September 2012

    bak94 ~ I agree having the most information will help with decisions, and everyone has a different level of comfort.

    I had my LX last Oct, wasn't tested for BRCA until after chemo but before starting radiation.  I am BRCA2+, so I put off radiation.  I had a hysterectomy/oophorectomy Aug 20th, and will have a BMX w/reconstruction this Monday, Sept 10th.  It is so hard not to look back and second guess my decision last Sept.  I am looking forward to getting this behind me and pray for clear path report.

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