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Could lymph node positive survivors share their story?

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  • kim40
    kim40 Member Posts: 125
    edited January 2012
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    It is 3 years for me this year.  Stage 3, grade 3, Her2+, 14 nodes positive and I'm still here.  

    (((Hugs))) to you

  • Rachel1
    Rachel1 Member Posts: 80
    edited February 2012
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    Bump

  • karen1956
    karen1956 Member Posts: 4,553
    edited February 2012
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    Rachel...I just passed the 6 year mark from Dx.....8/12+ lymph nodes at time of surgery.....

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited February 2012
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    So gald to hear from all of you!! I am approaching my one year mark soon. Whew...long road ahead of me but glad to read inspiring stories!!

  • suzfive
    suzfive Member Posts: 126
    edited February 2012
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    6+ years, 3 cm ILC 5/21 nodes positive, doing well.

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited February 2012
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    Saw my BS 3 weeks ago? She told me that she had a patient 10 years ago that had 28 pos nodes and today she is ned and feeling fine!!!

  • upthere
    upthere Member Posts: 2
    edited February 2012
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    just had lumpectomy and ALND w/16/16 positive. met with onc for first time. scared that may be mets to another site. anybody know about that? ths is not reoccurrance so i was not worried about it but the onc looked to be a little pessimistic and now i am scared to have the ct and pet next week.

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited February 2012
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    Hi Upthere. It is natural to be worried. When I say my onc for the first time after surgery he looked at me and said "I doubt it has spread you look pretty healthy". Now that does not mean that there could not have been mets, thankfully there was not. It sucks to have to wait but you need to get the scans to know how to move forward. There is a thread called "The waiting room" many people there chatting about waiting for tests. Be positive and don't let the onc bring you down. If you don't feel comfortable get another one. Mine is awesome he is very upbeat and a straight shooter. He is optimistic about my prognosis and that gives me hope!  Go get your scans and keeps up posted!! Good luck!! ({HUGS})

  • sam52
    sam52 Member Posts: 431
    edited February 2012
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    10 years out with 3 nodes (IDC 1.6cm, grade 3 ER/PR+Her2 neg)

    My treatment was mast, chemo (4 x FEC + 4 x Taxotere),25 rads (3 fields), tamoxifen for 2.5 years followed by 5 years aromasin.

    So far, so good.......

  • Kouragio
    Kouragio Member Posts: 30
    edited February 2012
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    Stage 4, more metastatic disease than you can imagine, 1 1/2 years ago, People think I'm lying when they look at me....my advice is to get get over your fear of death, then you can start living again and not feel so panicked/scared/overwhelmed by it all...wake up with a smile, and even if you don't feel like smiling, do it anyway, you'll be surprised how much better you feel...I have 5 children ranging from 3 - 19 years old, but I have stopped fearing for the future all the time...xxoooxxx

  • upthere
    upthere Member Posts: 2
    edited February 2012
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    thanks for the lift!!! will check out the "waiting room". i just wish i could stop dwelling on bc every minute ... anyway. . scan put off till tomorrow. all of yu in this area are so positive and kind i am glad i stopped in. never did this before. it helps to meeet everyone and not feel so alone.

  • myth451
    myth451 Member Posts: 1
    edited March 2012
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    Please ...check the comments on this storyLaughing...is one really inspired me...please girls read it.

    Maria C.

    http://today.msnbc.msn.com/id/46724913/ns/today-weddings/t/bride-rare-cancer-i-wont-live-fear

  • overjoyed4life
    overjoyed4life Member Posts: 92
    edited June 2012
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    DX 6/5/2010, ILC, 5cm, Stage IIIc, Grade 1, 22/29 nodes, ER+/PR+, HER2-. Still here and kicking. Loving life!

  • tortoise
    tortoise Member Posts: 17
    edited June 2012
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    Hi all, lovely stories, and am in need of them at the moment as yesetrday I read an article about a girl this magazine had been following and she dies of her breast cancer pretty quickly.  I have 17 / 24 nodes, and I struggle to find anywhere any stories about people surviving with that many...  But I know it's all a lottery anyway, and it's true what they say about it spreading even if you have no node involvement.  Anyone else got 17???  xx  

  • tortoise
    tortoise Member Posts: 17
    edited June 2012
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    ah, just seen your 22 nodes.  well done you  xxx

  • tortoise
    tortoise Member Posts: 17
    edited June 2012
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    another fellow 17-noder.  not that i wish it on anyone else but i get comfort knowing i'm not alone.  i was diagnosed end sept 2011, had chemo and started radiotherapy this week (3 down, 22 to go).  i feel very positive mpost of the time, but then a little thing triggers me off every couple of months and then i get depressed for a coupole of days.  that's where im at now.  but this site is great and helping to drag me out of my depression!!

  • my2boys
    my2boys Member Posts: 124
    edited June 2012
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    I had 2 positive nodes HER2+++/ER+ and I was diagnosed in 2008.  I guess that makes me almost 4 years out!

  • camillegal
    camillegal Member Posts: 15,711
    edited June 2012
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    I really never ave this much thought---I had almost 40 nodes out and like 25 were pos. and it's all good. So just concentrate on now and feel better.

  • Michele-co
    Michele-co Member Posts: 6
    edited July 2012
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    Hello,  I just want you all to know that I am a 22 year survivor of stage II breast cancer with 6 of 16 positive nodes ER positive.  I know it is scary to be facing this desease but there are many, many of us that have survived and thrived.  I almost never even think about cancer anymore.  It's a fading memory.  I was 36 when diagnosed and my first doctor was not optimistic.  I changed doctors and then went through all the treatments, chemo, radiation, complete hysterectomy, and tamoxifen which were what was available back then.  After I made it to five years I knew I was ok and slowly didn't worry about it anymore.  You'll all get to that point.  

  • Jill1962
    Jill1962 Member Posts: 7
    edited July 2012
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    Hi Rachel,

    Just getting back to this website after 6 years as I just started Femara and wanted info I could rely on!

    I am a 17 year survivor, first diagnosed at 33 in 1995 and then at 44 in 2006.

    I had 18 nodes removed and 4 were crappy!  I had dbl mast as I had lump on LB and nodes on R side by ribcage???

    Needles to say they threw everything at me to figure out how it go to the right side without being in the RB.  Still don't know but I'm still here to talk about it!

    The first time I had a lumpectomy LB and 2 out of 4 nodes were crappy so they decided to give me chemo and tamoxifen.

    I finished 5 years on tamoxifen and am now starting Femara for 3 years and am also going thru Recon using my own Fat.. as I tried the TE's and implants twice and both times failed because of my thin skin (rads).

    At least I am getting some free lipo out of this process and watching my new foobs getting bigger with each treatment.  Life is good......

    I had my ovaries removed two weeks ago so that I could go on the Femara and so far so good no SE's yet to speak of and my DH is happy that I still like him. ;p

    I am so grateful to be here and I am enjoying life to the fullest, I now have two grandchildren and a wonderful DH that has been with me every step of the way. 

    Enjoy the journey!

  • Whatashocker3
    Whatashocker3 Member Posts: 54
    edited July 2012
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    Michelle-co, thank-you very much for coming to this website. Your words mean a great deal to me in terms of hope. What brought you to the website after so many years?



    Jill it is great to hear your story. You seem to have a marvelous husband and your words make us believe there is hope. As you know it is pretty damn scary at first.



    Do either of you have words of advice to those of us just finishing up treatment? How did you use your energy to assist your mind through the yucky stuff at the beginning? Any advice?

  • Michele-co
    Michele-co Member Posts: 6
    edited July 2012
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    whatashocker....  I  just happened to do a search because I had just played in a golf tournament for "rally for the cure".  And at the dinner afterwards, a lady gave a speech about all the women out there that are fighting this so I thought I'd check and see if there was someplace on the net that I could give some encouragement.  As always when you are going through it, it is something that is on your mind every minute of every day and I want to tell all of you that that will end eventually and you will go back to living your life with much of the carefree attitude you once had. However, once dealing with something like this, you will now always remember you are mortal.  We all know we will eventually die, but those of us that have faced life threatening illnesses REALLY know that we are eventually going to die.  And somehow it makes life all the more special for us.  You will never take it for granted again no matter how long you survive.  I was 36 with two fairly young children, and the one thing I knew was that I didn't want to die.  And so I decided that I would not die.  My cancer was very abnormal and the first doctor I went to said I had a 20% chance of surviving it.  I changed doctors because I wanted a doctor that would fight for me and not give up.  Back then they were just starting to give women chemo for stage II and most times they weren't using the stronger chemo agents.  I wanted to be the most aggressive I could be because I didn't want it to come back.  They've come a very long way in all these years since and know to be aggressive but back then they'd say things like, "we could use this type of chemo and you won't lose all your hair or we could use the stonger one where you will lose your hair".  I just remember thinking, "my hair? hello? what about my life?"

    I can tell you that as long as I was getting treatment I felt like I was fighting the desease and I wasn't as worried.  But once the treatment stopped then I got scared because "I wasn't doing anything".  Going into those three month appointments were so scary.  And once I got the all clear, for the next six weeks I was on cloud nine and then start getting scared again as I started thinking about the next test.  There was never a day in those first years that I didn't think about the cancer.  A number of times they'd see something on the bone scan and then it was just nerve wracking for a few hours.  Additional testing would be done. The one thing I learned is that if they see something, they didn't wait around, they kept me right there and did further tests right then and there.  So if they let me go home without saying anything or doing any further testing, that meant my scans were clear, so I didn't get nervous waiting for the results. And if they did do a further test, they knew I was worried and some kind tech would let me know that the further tests were ok.  

     I wish I could tell you not to worry but you will.  It is a very frightening experience.  The vast majority of you will survive.  Back when I was diagnosed most of us survived also, just not as many as now.  They used to talk about 5 year survival rates.  What do they mean 5 years???  I wanted to know what was a normal life span, like "Am I going to live to be an old lady survival rate!!!!"  Do they still do that stupid 5 year thing?  The odds are you are going to live and not die of this disease even at stage II with lots of lymph involvement.  I know it is easy for me to say now that I'm past 22 years.  I have at least 8 friends who are as long or longer.  There are just thousands and thousands of us.  Thirty years ago it was a different story.  Be very very glad you live in this generation.

    Ladies, I can tell you that cancer will not consume your every waking minute in time.  Gradually, your life comes back, just better.  The small stuff never bothers you quite as much, and you learn to smell the roses along the way.  Life is good.    

  • Whatashocker3
    Whatashocker3 Member Posts: 54
    edited July 2012
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    Michele-co

    Thank-you very much! I to have young kids and want to be around to see what they will become. It means so much to have women like yourself come on these boards and tell us what full and healthy lives you are living. It certainly will make me sleep better tonight. I can't tell you how much I appreciate it.

  • Michele-co
    Michele-co Member Posts: 6
    edited July 2012
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    Some things to note.... I was diagnosed in 1990.  Back then a lot of women were not receiving chemo options at all as it was relatively new to offer chemo to stage 2 breast cancer patients.  Around the country many doctors were just starting to use chemo.  The big centers I believe had been using chemo though for awhile. To make it even worse, in Dec of 1988 I had my very first mammogram and it showed micro calcifications and that didn't trigger further investigation by my gyn doc.  A year and a half later I found a lump!  I am quite sure I would have never been allowed to walk away today without some kind of biopsy.  The tumor was 2-2 1/2 centimeters with 6 positive nodes.  I was told that anything more than 3 positive nodes was very high risk for recurrence.  And if I had a recurrence my chances of surviving it long term was next to nil.  And then I was offered various chemo types for which I could "chose".  One was methotrexate, Cytoxin and 5 FU (minimal hair loss) and the other was Adriamycin (Doxirubicin) Cytoxin and 5FU (taxol was not approved at that point).  I really felt I was completely uneducated in any type of decision making but chose the more aggressive combination and then decided to research as best I could.  There was no internet so I wrote and called the Cancer Institute in Houston and they sent me whatever research I requested.  I wanted to see all the latest studies.  Some of it was very scary but I focused on the promising results and decided to change doctors and get one affiliated with MD Anderson because their patients were surviving with aggressive treatment.  

    I was young and otherwise healthy so I was determined to get whatever treatment they would throw at me.  I felt strongly that I never wanted to regret not having the additional treatment if I were to have had a recurrence. So I finished six courses of CAF and then went through six weeks of radiation followed by another round of chemo, which then included Methotrexate, Cytoxin, Cisplatin, Flouricil for four rounds.  Tamoxifin was just being approved but my MD Anderson doctor at the time didn't want me to have it because I had active ovaries.  He felt that Tamoxifen would tell my pituitary gland that I didn't have any estrogen so that my ovaries would end up producing more estrogen.  So we decided that removing my ovaries would be the best alternative followed by tamoxifen.  I think they may have changed that idea now days but back then they weren't so sure. I only took tamoxifen for a couple of years.  

    I will tell you that most women were not getting the aggressive treatment I was getting back then.  The majority of oncologists back then were saying that the aggressive treatment was "too much".  I don't know how long it took for the majority of oncologists to get more aggressive after that.  Today, most women get the aggressive treatment.  And so the long term statistics from my cancer longevity are not as promising for people with 20 years or more.  I think those of you that are now being treated will show the much better stats.  

    For a long time I stayed in touch with the other women that were being treated at the same time as I was.  We were all at least stage II which was why we were with the aggressive treatment center.  Many had stage III.  At five years, more than 80% of us were still cancer free. They kept track of us and at 10 years they called me again (I now live in Michigan so how they found me was surprising) and still  80% were cancer free at stage II. That's cancer free, not just alive.    

    I am a big proponent of going to a major cancer center where the top cancer doctors and the major research is being done, if nothing more than peace of mind for anything more than stage I cancer.  It's worth the trip and you will KNOW you are getting the most up to date care.  They will work with your local doctors and you will feel you are participating in the fight of this horrible disease.  They will assist in your travel accomodations for your initial trip and you will "know" you are getting the most up to date and individualized treatment plan.  There's a team of doctors overlooking your case.  It was the best money I ever spent and most of it was covered by insurance.  I believe MDAnderson is still considered the top cancer center but there are many others.

     So I can say with confidence that thousands and thousands of node positive women have survived stage II and III breast cancer long term.  I have read a few internet articles that are sooooo negative and wonder who they are looking at because I know many more women that had stage II that have completely survived it than not.  And again, the standard treatment has really change over the last 20 years.  After being told I had a 20% chance of surviving the cancer by my first doctor, you can all imagine how I felt when my MD Anderson doctor walked in, read my chart, and looked at me and said, "well, you can plan on living to be an old lady, but we have some work to do first."  I'm now 22 years into that and I truly hope my story gives you hope because it is just soooo possible and so likely that you will come through this even with node positive breast cancer.  

       

  • Cindi2011
    Cindi2011 Member Posts: 84
    edited July 2012
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    Thank you, Thank you, Thank you.  It is so wonderful to have people visit back with the positive stories. 

    You have truely made my day.

    Love and hugs and many wishes for years to come

  • Whatashocker3
    Whatashocker3 Member Posts: 54
    edited July 2012
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    Michele-co, this is exactly what we need to hear. Positive stories from those that have lived through it. If you have any friends that would be interested in doing the same we would surely appreciate it. So you had a total of ten chemotherapy rounds? How many weeks apart? Also did they discuss lumpectomy vs mastectomy? Back in 1990 did women just do the surgery and opt out of other treatment? I sure do wish we could talk more. I just feel like I dont know enough survivors that have had long term success personally. Again you are a great inspiration. Please keep posting. Our stats are pretty similar so I am going to go with the idea I will still be here in 22 years.

  • Mardibra
    Mardibra Member Posts: 194
    edited July 2012
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    Thanking God that I had aggressive chemo at a top cancer hospital!

    Thank you!! 

  • Michele-co
    Michele-co Member Posts: 6
    edited July 2012
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    I'll send anyone my phone number by private message if you want to talk and if it will help.  I remember too well how talking to survivors was a huge help to me.  

  • Whatashocker3
    Whatashocker3 Member Posts: 54
    edited July 2012
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    Michelle-co, I have sent you a pm. I am grateful that you have contacted this forum. I think you were sent to help me sleep. Lol

  • Mardibra
    Mardibra Member Posts: 194
    edited July 2012
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    Michelle-co, you have given me a new outlook on my mortality!  Thank you!