Calling all TNs

16726736756776781198

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  • teresa008
    teresa008 Member Posts: 55
    edited March 2013

    My BS first suggested a lx on my first visit with her. We were going from an ultrasound and a more thorough mammogram on my left breast, which showed the tumor as about 2.9cm. Then she ordered an mri and decided from it that the tumor was larger than we first thought so she suggested either a mastectomy or chemo to try to shrink it down to a size that the lx might work. I opted for a mastectomy because my breasts were already pretty small and I really didn't feel safe waiting for the months that it would take to do chemo, just to later find out it didn't work as expected and then I would be in real trouble. She also sent off the oncotype test at that time. So I had an expander in place and was up to my very last expansion when the onco came back that I'm actually a TN. So everything has been put on hold and I got my brand new port today. I will start on chemo next Tuesday, thanks to a post on here about leaving the port insertion plenty of time to heal before chemo! (Thank you!!) Once they actually had the tumor it turned out that the invasive part of it was 2.9cm but there was actually another 1.4cm of less invasive cancerous material around it, so the mx turned out to be a very good decision. If I had known when I had the left mx that I was TN I most likely would have had them do the other one, too, just to be sure. I almost did anyway, but decided not to.

    Good luck to everyone with all procedures and operations coming up and thank you so much to everyone on here for offering support and encouragement to women who REALLY need it at this time.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    slv58 I can't answer the question on lx v mx because there are no many differing opinions that I just don't know enough about the lx.  But to answer your fears on surgery for the mx I had no trouble with my surgery.  Just a little bit of soreness if you could call it that, really no pain at all unless I pulled the tube where the lymph nodes were removed because I forgot it was there.  I was supposed to be in hospital for four days but convinced my surgeon there was no need for me to be there as I felt so well and in no discomfort so came home on the morning after the day of surgery. (I'm a real home body and hate being away from it).   The bag for the drainage of lymph nodes was the most troublesome because as I say I forgot the darn things were in there and would get up and walk away without the bag, ouch,but they did give me a smaller bag I could put in my dressing gown pocket once the first tube was gone.  I had two of them which I think is pretty normal. I can honestly say I had no discomfort at all.  The District Nurses came every day to check on the wound and the drainage and that was all there was to it. 

    Hope this helps but somebody is bound to come on and help you more.        

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    teresa008 I had chemo the day after my port was inserted. They gave me an Emla patch to put on an hour beforehand and I never felt a thing.  Hope everything goes well for you. Big hugs.  

  • Titan
    Titan Member Posts: 2,956
    edited March 2013

    seriously ladies...if I came on here and told you that I had the cure and that all you had to do was to send me a thousand dollars and I would send you the cure would you believe me?  hell no..l  Though I think Loafer was trying to help but..coming on here and saying that an LX is s bad thing to do and a MX was the only thing for tn's is just plain wrong...it is NOT true...reasearch, reasearch ladies...talk to your own oncs about this...like dolce said there are just too many variables to determine which is best for YOU... I had a LX because I could...I also had 37 rads plus the strongest chemo they could give me....having an mx isn't a guaranteed cure for anyone...even the positive ladies.

    That said...love all all you...let's keep on with what we are doing here...supporting each other,...laughing at jokes...we certainly need them....and make the right choices for YOU....

    Hey...I'm 4 yearss OUT next Weds....party with me ladies...I've been feeling down lately...March just brings back bad memories.....

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    There are so many I could have sent you Titan to make you laugh but this one tickles me every time.

    You could win an Apple MacBook Pro 13.3-Inch Laptop for less than $10 on http://www.dealdash.com/join.php?t=fb

    I will make it my aim for a "Cheer up Titan" week.  I know what you mean about March. Every time I sit at this computer and look out the window it's like going back a year and gives me a funny unpleasant feeling. Roll on next Wednesday and we'll party, party.

  • jenjenl
    jenjenl Member Posts: 948
    edited March 2013

    That pics is funny to me Cocker_Spaniel bc that is what I came home to after chemo today. 21 days until my last chemo!

  • jenjenl
    jenjenl Member Posts: 948
    edited March 2013

    21 days until my last chemo!!!!

  • Hopex3
    Hopex3 Member Posts: 397
    edited March 2013

    Thanks Cocker!



    Amen Titan and yes I will party with you!!

  • NavyMom
    NavyMom Member Posts: 1,099
    edited March 2013

    Love that picture, Cocker. 

    Congrats to you Titan.  Celebrate, celebrate and celebrate some more!!

    My 2 cents on the current discussion:

    At the time of my DX, I also was given the choice of LX, UniMX or BMX.  With the understanding that any surgery that I chose along with appropriate chemo/rads, would all have the same stats for survival.  I am grateful that I had a choice.  And I am comfortable with it.   And I believe that is the key....to feel as good as possible about your options and your choices.

    In memory of our lost sisters:  The best thing that happened to me today: A skype call from my Navyson.  Its been 3 weeks since we talked and he looked wonderful to this mom's eyes!

    A request to please pray for the world's leaders to make good choices and that our military personel stay safe and can all return to their families.  Thanks

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    Titan next Wednesday I will find the funniest joke I can for you and then we will all party.  Congratulations on four years, I hope I make it too.

    jenjen1 great news about your last chemo.  You go girl.  Have a party yourself and we'll all join in.

    NavyMom wherever and however that boy will always look wonderful in his mums eyes.  I will pray for your millitary that they are safe and will return home soon.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013
  • OBXK
    OBXK Member Posts: 791
    edited March 2013

    Annie - Thanks for the laughs!

    Jen - Woo Hoo!

    Titian - So glad you will be celebrating next week! Keep looking forward!!!



    Chemo tomorrow! I'm a little anxious because my port incision hasn't healed.

  • Hopex3
    Hopex3 Member Posts: 397
    edited March 2013

    OBXK..Good luck tomorrow. What type of chemo are you having?

  • OBXK
    OBXK Member Posts: 791
    edited March 2013

    Thanks! Carbo/gemzar.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    Karen - bugger.  Will they use it or will they try and find a vein.  Do you put some numbing cream on first? How are you with this combination chemo.  What side effects do you get.  Is it the same as your first lot?  Thinking of you for tomorrow and sending big hugs.  

  • Titan
    Titan Member Posts: 2,956
    edited March 2013

    Thanks for the joke Cocker...good stuff!

    Karen...have heard some good things about Carbo/Gemzar~

  • NavyMom
    NavyMom Member Posts: 1,099
    edited March 2013

    OBXK, good luck today.  Hoping for healing on that port scar.

    Welcome to the new gals.  Glad you found us, sad that you even had to look for us.

    I saw my BS for a 6 mo check up on March 4.  Good to go except for some axillary scar tissue.  So I am back in breast PT  for a few sessions.   

    Have a good day everyone.

  • NavyMom
    NavyMom Member Posts: 1,099
    edited March 2013

    How ya doing, LUV?  Been awhile since you stipped in here.

  • Luah
    Luah Member Posts: 1,541
    edited March 2013

    syl58: Just wanted to reply to the very important point you raised about mets. I am not aware of research looking at Lx versus Mx for mets occurence; however, there are plenty of studies that show overall survival for Lx + rads being equivalent Mx (with or without rads)... this clearly relates to mets because as my BS said, "no one dies of cancer in the breast."

    So mets of course are the big worry... and unfortunately the patterns of recurrence for TN show that it is more likely than ER+ BC to recur as mets and in soft tissue. That's why chemo (being systemic to control risk of mets) is such an important part of our treatment. That said, the vast majority of women with TN don't recur - and it's important to remember that!  

    I wish you well with your decision-making and treatment.We're all here for you.

    Karen: Sending a gentle hug today as you go through chemo. 

  • slv58
    slv58 Member Posts: 1,216
    edited March 2013

    Thanks Karen, there is so much to consider and I admit I am learning a lot. So, if TN is more likely to recur (than other positive BC) as mets, I now understand why even 2% could be a concern. I still have to go through brc testing, and at this point I think it will be the deciding factor. I do want to thank all my TN sisters for providing so much knowledge and support. It is very comforting that I can come here, read, learn and share with others who know exactly what I am going through. I do know that a very agressive rad treatment is planned for me, and honestly that scares me, but I must look at it as my road to recovery. Each step closer to being NED!

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2013

    Hi NavyMom - just got back from chemo, I've had a bit of a rough time.  I did a couple cycles of carbo and it did absolutely nothing - my tumor markers doubled.  So we switched to gemzar, I had one cycle that affected my blood counts enough that the next week I got a half dose.  Last Wednesday my counts were so bad I needed two units of blood.  I felt lots better after that.  Today's and future treatments will be at 50%.  I do think it is working as the cough I was having is completely gone.  If this works, it will be the first one in a year.  I'm having a scan after this cycle and I'll find out my tumor markers on Friday.

    In the meantime, we are flying to Phoenix next Wednesday night so that DH can meet up with some golf buddies and have some fun.  He deserves it!  I will be hanging out by the pool while he's playing and then we'll get together in the evening for dinner with the guys.

    You gotta love Skype!

  • minxie
    minxie Member Posts: 484
    edited March 2013

    Hey guys, finally hoping back on to catch up and say hello...

    I see there has been a bit of a LX vs MX battle going on... Look at me. I had a lumpectomy, and then a BMX - and I STILL had a local recurrence. You just never know what's going to happen.

    I'm getting my expander #2 taken out and the final implant put in on the 8th. And that better be the last surgery I have for a long long time!

    And I know that only you ladies can appreciate this one... A few days ago I was having a strange feeling in my upper chest, a tightness. I was convinced it was lung mets and frantically began googling all the symptoms... Hmm, none of them seem to match up with what I'm having... And then yesterday, it hit me - both physically and mentally. I have the flu, which my son just had.  So here I am, celebrating the fact I have the flu, because it's not mets. Oy, what a dope I am! Does it ever stop?

  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2013

    At the end of January, 2013, results were posted in many different journals, papers, etc. about the latest results of mastectomy vs. lumpectomy in early cancers.  If you google same you will find all the abstracts and reports.  They are seeing much less recurrence in those having chose lumpectomy over mastectomy.  I am posting the Medscape report here for all to peruse:

    http://www.medscape.com/viewarticle/778276

  • Luah
    Luah Member Posts: 1,541
    edited March 2013

    Hey minxie: Great to see you here again. Sorry to hear about the flu, but yeah, hooray!

    LRM: Thanks for the info. 

  • Spica16
    Spica16 Member Posts: 130
    edited March 2013

    Minxie - yah to those dopey moments!!!

    I had a cold a few months ago - JUST LIKE EVERYONE I knew - I was just being NORMAL!!!

    I had an even more dopey moment... My hair has grown back and is healthy, but the first time I saw loose strands...OH NO, NOT AGAIN!!!!!!!!

    DUH - we normally lose about a 100 hairs a day.

    At least we can laugh about it now ~ Shar

  • onvacation
    onvacation Member Posts: 1,344
    edited March 2013

    Evening all!  Late to post, but I had a lumpectomy, didn't know I had TNBC until after the surgery.  Lump was small, no nodes and clear margins.  

    Annie - thanks for all the cute and funny posts!  Hope winter is mild for you!

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    Morning ladies good to see LUV and Minxie posting. 

    All I can say Minxie is thank god for the flu though not something we would normally thank him for!! 

    LUV so sorry you are having a hard time but I am sure this will kick that cancer hard.  Just hang in there girl and enjoy your time away in Pheonix.

    LRM its a bugger about the last paragraph of your post.  Keeping my fingers crossed. 

    Spica my hair is still short.  Not sure I've got enough for 100 hairs to fall out each day lol.

    Karen hope you are ok and your port has healed nicely.  Thinking of you today.

    Onvacation thank god for small lump, no nodes and clear margin.  Great news.

    No cleaning left to do so unsure what to do with myself.  Just don't fancy doing too much today.  Might go and see my old fellar and my daughter at the cafe and try and scrounge lunch.

    Big hugs to all.  Luv Annie   

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    I notice you ladies very seldom talk of housework. Do you all have ladies that come in and do it in the USA.   

  • gillyone
    gillyone Member Posts: 1,727
    edited March 2013

    I don't talk housework because I'm not really interested in it. Plus I'm in the fortunate position that I have someone come and clean, just 3 hours every two weeks. Now ironing is another matter. I'm a good ironer and iron every week. That is not typical in the US.

    (But I wish I know how to get rid of the hard water stains on my shower glass.Frown)

  • Hopex3
    Hopex3 Member Posts: 397
    edited March 2013

    Right after my dx, I hired house cleaners. Every other week. They just dust, clean bathrooms and do the floors. It has been a godsend for me. I will never clean another bathroom again!

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