Calling all TNs

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  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Happy New Year!

    Did anyone have a known positive lymph node going into surgery? Did your SO remove all nodes under the arm on that side or just a few? 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    Lisajcj - I had a known positive node and my BS removed level 1 and 2 nodes - 17 total.

    My chemo nurse was a magician when it came to accessing my port.  We never used anything to numb it and it didn't really hurt at all when she accessed it. 

    And the surgeon that installed it did such a great job - it never bothered me, and it was a very small profile port so you couldn't see it even when I wore a bathing suit.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited January 2012

    They knew I had at least 1 positive node so like Luvrving the Surgeon removed what he called the 2nd row.  3 of 18 positive.

    Maggie

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited January 2012

    How come everyone has gotten their ports out already, my onc wants me to keep mine for a year.  It's not too bad, you don't notice it wearing close but it pokes out right where my bra strap it and everynow and then it gets caught on it, its a very weird feeling and I just creeps me out. 

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  • mags20487
    mags20487 Member Posts: 1,591
    edited January 2012

    My onc said 2 year and I said no way!  Mine rubs on a nerve every now and then and it is aweful.  We do not get along at all.  She agreed that after my pet scan on the 13th of Jan we will discuss taking it out if I get the all clear...really praying I get my way!

    Maggie 

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    I had a 2 positive nodes but only 1 stayed positive after doing chemo. At surgery they took out 8 nodes total. My doctor told me that it's only at the final path report that they know for sure how much they took out because "normal" nodes are so tiny. He explained that he took out a "grape" of nodes and the final pathology showed there were 8. Hope that helps.

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  • KSteve
    KSteve Member Posts: 486
    edited January 2012

    My surgeon took my port out when I had my BMX which was only 9 days after I finished chemo.  I was grateful to have the port during chemo, but was more grateful when it was removed! 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    My onc said I could get rid of it right away.  Actually, my first onc at Dana Farber said I didn't have to get one at all (but I knew that could be a disaster as I have crappy veins), so it would have been pretty hard to say it couldn't come out.  I decided it could go when I had a clean PET scan and that happened in October. 

    It's not like they couldn't put in another one should that ever become necessary, heaven forbid!

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited January 2012

    Mags, I think they are awful but glad to know your onc likes to keep them in too.  I don't think I'm getting any more scans unless I have symptons.  Will this be your first pet scan?  Good luck on the 13th!

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  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Michelle, Maggie & Babs, thanks so much for the information. My BS/OS recommends complete dissection of all nodes. I wonder if it is because I'm BRCA 1? I think I'll clarify it with him. Thanks!

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  • CharB22
    CharB22 Member Posts: 310
    edited January 2012

    Thank you all for the tips. Ick....keeping the port in longer than absolutely necessary seems so....ick....I don't know how else to put that. Ick. Ick. Ick....I'm extremely squimish! Cringe. Ick.

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

    Char --  you will get used to your port and it will become no big deal. I kept mine in for several months after I was done with chemo, and had to go to the chemo infusion room once a month to get it flushed. I must admit I liked going back to see people and chat with the nurses. For me (and others, I know) one of the most unnerving things about being TN is that when you are done you are done -suddenly no appointments to go to, and suddenly you are not doing anything to get rid of cancer. Getting my port flushed monthly was a gentle way for me to be on ym own.

    I never got lidacaine for accessing the port - it was just a quick poke and done.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited January 2012

    mccrimmon...not my first scan...had one before chemo started..That one was clear...this one will be too because I said so!

    Char---I agree it is ICK...can't even stand to touch the thing

    Maggie

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  • CharB22
    CharB22 Member Posts: 310
    edited January 2012

    gillyone - I wish I will be done once chemo is done -- I'll need radiation OR if my BRCA tests come back positive, "the girls" are being removed.

     Maggie - I won't be able to touch it either or even LOOK at it. Can I keep it covered with gauze or something?

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited January 2012

    Laurajane, my thoughts are with you.  Whatever you have to do sweetheart

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Char, I agree, ICK!  The part that bugs me most is where the catheter goes over my collarbone.  Can't touch it or look at it!  I sometimes put a bandaid over the reservoir part if it shows through a neckline...sometimes not.

    I saw the genetic counselor this week and decided to do the test for the BCRA mutation.  Like you, that result will decide the surgery.  My good news is that while I have a strong family history of cancers, most were in my grandmother's generation and other than me, none in mine.  I've got my fingers crossed for negative results for both of us!

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited January 2012

    Laurajane I sure hope this works for you!  Prayers going your way.

    About the port, my onc wanted me to keep mine in for a year, on my last visit I told her I was ready to have it taken out.  She said no problem.  So I got it out a few months early.  Ick on touching it!  I couldn't touch it and barely looked at it.  You could definatly see it! 

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  • riley702
    riley702 Member Posts: 1,600
    edited January 2012

    After radiation, I asked to have the port out because it caught on the straps of my tank tops and purse. They said I could keep it in, but I wanted it out, so out it came. It was my way of saying I was done with everything.

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited January 2012

    Re ports: I wanted mine out ASAP after chemo, and my Onc thought that was fine.  I was so ready to get rid of it, for lots of reasons that I'm sure you all understand.

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited January 2012

    Laura jane, I'm praying with you.

    Ignore the power crazy accupunturist. You didn't need that and she should be ashamed. And yes, she should be right there to help you with the side effects. 

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  • minxie
    minxie Member Posts: 484
    edited January 2012

    I got my port out 5 days after I finished chemo. My onc was fine with it, he even helped set up the surgery for its removal when I told him my BS didn't have an appointment available to take it out for another 3 months.

    Does anyone else have a huge scar from their port? Mine is about 1 inch wide and 3/4 inches tall. I even had it revised during another surgery, and it still stretched out to this big size again. It's pretty noticeable in the summer with tank tops and bathing suits.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    My port scar is just an inch wide and really just a "slit" tall, and it's fading quickly.  We had just moved and my oncologist recommended this general surgeon to do the port - turns out she was an excellent surgeon and I would go back to her in a minute if I ever needed surgery again, other than for my reconstruction. 

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

    tif and mccrimmon, I was on vanco and something else also. I woke up this morning drenched in blood/fluid. I was disgusting, my mastectomey scar had opend up wide. Had to go in and have it fixed with staples! He cut some bad skin off and then stapled it all while i was awake. He said the fluid build up seems to have pushed the scar open. This was after being in the hospital for 4 nights. I agree, this has all been worse than the chemo! I am done with this crap! Delays my radiation even more. I am on oral antibiotovs now, something like chlevac.

    I need to catch up on thr posts to respond. Thinking of all of you.

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

    Oh. had to have my port out due to that nasty infection. I wanted to keep mine, as blood draws are rough for me and I still have zometa infusions.

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  • ATeamNana
    ATeamNana Member Posts: 464
    edited January 2012

    Hi everyone...I am TN also..  Someone told me to check out this thread about 6 months ago and I'm finally doing that. Smile

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  • riley702
    riley702 Member Posts: 1,600
    edited January 2012

    I'm so sorry, bak, that sucks. (((bak)))

    My port scar is like LuvRVing's. I consider it my battle scar. I'm going to start on Zometa, but I'll just do it IV. It's only twice a year, right?

    Welcome, Nana!

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  • mkpinky77
    mkpinky77 Member Posts: 3
    edited January 2012

    Hi there.... I'm Melissa.  Brand new to this site.  I've been reading this thread/forum for the last few days.  I feel like a huge weight has been lifted off my shoulders by joining tonight. I've had a really hard time admitting to myself that I have Breast Cancer..... 

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  • riley702
    riley702 Member Posts: 1,600
    edited January 2012

    I know the feeling. How could I possibly have cancer? I felt fine, except for that damned lump in my breast that I swear wasn't there a month ago...

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited January 2012

    Riley, I love the idea of the port scar being a battle scar!

    How did you make the decision, or did your oncologist make the decison, to put you on Zometa? I've asked my oncologist about trying it in the past, though not in the last few months, and he was reluctant. What swung your decison in favor of it? 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    Welcome to Melissa and Marsha!

    (((Bak94)))  I hope things get easier for you very soon!

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