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Could lymph node positive survivors share their story?

13

Comments

  • Cindi2011
    Cindi2011 Member Posts: 84
    edited July 2012

    Michelle co, you are an inspiration to all of us.  I read your postings to my husband and all he could say was  "SEE"  He has been telling me all along that things are going to be fine.  Well, I just cant believe that from anyone....while my gut feeling today was that "YES" it will be fine.

    I am going to live like never before. However, I told my hubby that I do not want to start going on vacations because to me that is giving in (if you can relate?)  I dont see how doing stuff that I would have not done before would help.  My retirement plans were to see the Grand Canyon, Niaggra Falls, and the Black HIlls and any other little fun things so I guess I will hold off until then.  I have a nice little cash pot in case if things get bad, but until then I will have faith in my God that that day will not come for a long, long time.  Actutually I do think that I will die......but from old age and that is okay with me.

     Yes, please to continue to post as all your positive stories or things you have overcome is HUGE to those of us that are still trying to get past this point.  I always say to encourage others to visit us also .... so spread the word.

    A HUGE, HUGE HUG to you and congrats for all its worth!

    Much love,

    Cindi

  • camillegal
    camillegal Member Posts: 15,711
    edited July 2012

    Michelle-co how lucky u came on when u did--powerful posts with such good meaning Congratulations on u;r attitude, and it meant so much for everyone to read. Big ((((HUGS)))) to u and u'r family.

  • Michele-co
    Michele-co Member Posts: 6
    edited July 2012

    Oh my, I wish I'd come a long time ago!  You all need to remember that after we get to the point where we are no longer afraid of cancer, we go back to living as though it were just a bad dream.  You have no idea of how many women you pass in the grocery store every day that have been where you are now and just don't think about it anymore.  I always give to the Susan Komen foundation every year for a cure but other than that, breast cancer just isn't a part of my life anymore, nor is it for almost all other survivors. It never occurred to me that my story would help anyone else and yet I do remember how I myself appreciated the time anyone would give me when they told me their stories.  There was no internet back then so it was only when I met someone.  I will certainly tell everyone that I know that had breast cancer, especially the ones that had more extensive disease to get here and post their stories.  They are all like me and off living their lives and not thinking about it anymore.  It is certainly not because we don't exist!  We are out here! It's what you will all do when the vast majority of you survive longer term.  Some of us have had to deal with some long term side effects of all the treatment, but we are alive and well and living life.

    I wish, I wish, I wish I could make all your fears go away today, but that won't happen.  Time makes it happen.  In time, cancer becomes less consuming in your thoughts.  When you eventually go 24 hours without thinking about it, you are almost there.  I can't pinpoint the moment it no longer mattered to me, but at some point it just didn't feature in my life.  Every ache didn't make me start wondering.  By the time I reached five years, I felt pretty confident that I would be ok.  At 10, I was sure I was ok. They stopped testing me at 5 years so I didn't have to think about test results, so that may have helped. But mostly it is just time and as years start to pass and you don't have any recurrences you can't help but think less about it. Other things in life just take over.  

    Those that go through this will always have a bond because we know the emotional turmoil that it causes.  It doesn't matter how strong of a person you are, cancer is a frightening ordeal. Breast cancer incidence has been pretty consistent over the last five to ten years of around 229,000 cases a year and about 17% don't make it every year. Doesn't that mean 83% do? Those aren't real bad odds.  Just be in that 83%.  And further, you are living at a time where there is cutting edges in treatments on the horizon.  There are so many newer and better drugs than what were available 20 years ago.  The survival continues to get better.  Especially among younger women with cancer. There's a lot to be hopeful about.

    The best of luck to all of you and don't hesitate to send me a message if I can help in any way.  I'll be praying for you all.   Hugs for all of you!

    Michele

  • Hortense
    Hortense Member Posts: 718
    edited July 2012

    It's good to read these posts. I just got a call from my radiation doctor's office today cancelling my first appointment with him as it seems he's suddenly decided to move out of state by mid next month. Now, I have to decide where to go instead. He'd been recommended highly to me, so I thought I was all set. He's at a large hospital and does have others who can do it instead.

    I did go see another a while ago who's with a major cancer center, but she has to go by the center's guidelines which is to only hit the lower nodes. I was hoping to hit all or more of them, in case anything is hiding in the others. The same center did my surgery and only took two nodes as that is their policy - both were positive. I have  no way of knowing if the next one or ones were also positive, so I am worried and trying to figure out what I should do.

    My oncologist just said both radiation places were good, but I feel this is my life at stake and I don't want to make the wrong decision. How important is it to get all of our nodes radiated? Anyone know?

  • ductal
    ductal Member Posts: 10
    edited July 2012

    I just had 3 year anniversary, had 30/31 nodes positive.  Told to go pray.  I am now stage 4, have been thru hell, but I am Here!  Have some positive vibes, I take negative news under advisement and smile and live a good life as much as possible with my husband and beautiful, sweet 15 yr old girl who needs me as much as I need her.  My angel.

  • hmh23
    hmh23 Member Posts: 50
    edited September 2012

    Ductal;  CONGRATULATIONS!!!  Positivity is your best friend.  Heather

  • hmh23
    hmh23 Member Posts: 50
    edited September 2012

    Ductal;  CONGRATULATIONS!!!  Positivity is your best friend.  Heather

  • dipti
    dipti Member Posts: 4
    edited September 2012

    Hi Iam new in  this forum. My mom is recently diagnosed with Ca breast with 12 lymph nodes positive. I am scared about the recurrence and the mets. She has kept the normal breast, but I think is it better to geta prophlyactic mastectomy done. She is currently undergoing chemo. I am very worried about her. I want to see her NED for 10 years.

  • dipti
    dipti Member Posts: 4
    edited September 2012

    Thanks for a very inspiring story. I am glad to be on this forum and read everybody's experience that really helps to be optimistic.

  • susan3
    susan3 Member Posts: 2,631
    edited September 2012

    just found this thread to, but my sleeping pill is kicking in, bare with me here girls. 12 years ago double mastectomy, one node. 4 yrs tamoxifen, 3 femara and back it is, we stopped counting at 30, all in neck and not operable. distant met. both sides now. well here comes the good news, that was 1 1/2 years ago, i am still working, running, and walking. ran my first duathlon last week, didnt break any records but did cross the finish line. i am still loving and living life. i refuse to get mad, i am going to happy and have fun, my daughter was 10 when this started and tomorrow we r shopping for wedding dresses. this is hard to say, but because of my turn in life, i have loved deeper and stronger than i ever knew possible. cancer has given me the best most honest and most loving years of my life. without this i might have walked through life without ever feeling those hugs that come from deep in your soul...that stuff is cool for me. hugs to all of you, and feel them, feel them deeplyWink

  • diankv
    diankv Member Posts: 1
    edited October 2012

    This is my 1st Post-10/1/2012---I'm a 11 yr BC Survivor, DX- 9/11/2001; Stage II B, Invasive Ductal Carcinoma; 2 1/2 CM; ER+/ PR+, Her2 -; Grade 2;  1/12 Positive Lymph Node; Mastectomy-- Tram Flap Reconstruction; Chemo-FAC & Taxol, then 5 yrs on Arimidex---& I'm enjoying life---I'm 60 years old---I was 49 yrs old when diagnosed---I'm Finally a Grandmother to Hailey 12/2011, Love it !!!---My Onc. still has me on 6 mo  Check-ups---I've never smoked & don't drink any alcohol, & I eat very HEALTHY!!!

  • dipti
    dipti Member Posts: 4
    edited October 2012

    Thanks for all the support. God sends his angels in the form of people like you. My mom is currently undergoing chemo. Her medical oncologist said he would try a drug called docetaxel. Does anybody have any experiece with thid drug. Please let me know. Thanks

  • susan3
    susan3 Member Posts: 2,631
    edited October 2012

    there are so many drugs. sorry cant help you. dont know anything about that one. hugs to your mom and you

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2012

    Dipti

    Docetaxel is Taxotere.  Have a look in the chemo threads and you'll find out more about it.

    Trish

  • dipti
    dipti Member Posts: 4
    edited October 2012

    Thanks Trish and susan3 . I appreciate you getting back to me.

  • Gai
    Gai Member Posts: 154
    edited October 2012

    I had high degree of nodule imvolvement 18/21 and a grade 3 turmour.

    I am happy to say that I was diagnosed in 2000, so now 12 years out. 

    I am fit, healthy and loving life

    Gai

  • missy_111
    missy_111 Member Posts: 97
    edited October 2012
    Gai- Stories like yours give us all hope!! Especially us Her2+ girls. Thank you for coming back to post  :)
  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited October 2012

    Thanks Gai!! We have sorta similar dx, I hope I come back in many years to say I too am NED!!

  • susan3
    susan3 Member Posts: 2,631
    edited October 2012

    thanks for the post Gail. i have so much lymph node involvement it really scares me. hope the lymph system doesn't shoot it everywhere. when it came back most of nodes on both sides of my neck and shoulders were cancer and under both arms. its been 1 1/2 years now. on a/a, and only 6ish nodes are slightly swollen. gotta scan next month, anxious times ahead

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited October 2012

    I just came across this thread for the first time today.



    Wow!!! I was dx on July 27, 2012.. Not having surgery until oct. 22, little more than a week away. I've already been told there are 1 or 2 nodes involved, but won't know total results until about a week after mx.



    I have really strong faith in GOD, and I know He is my Healer, but I'm also human and I've been really concerned that there will be more nodes involved or that cancer will have spread beyond there. My surgeon is removing all nodes and thinks there will be 25-35.



    Then I find this thread and discover all you wonderful ladies who've been doing such an awesome job fighting this war! You inspire me!



    Blessings

    Paula

  • susan3
    susan3 Member Posts: 2,631
    edited October 2012

    soteria, good luck on surgery!!!! hugs and prayers your way. praise God they can do surgery. i couldn't, as of right now. maybe later if we can shrink and locate better. mine are tied up in my jugular and muscles. not sure if i would be able to hold me head up if they went for clear margins. lol. would loose to much of what i need. but i too, know i am in good hands with God, He has carried me through almost 12 years w/cancer and each day is a blessing. stay strong. hugs to all

  • torigirl
    torigirl Member Posts: 748
    edited October 2012

    Soteria...

    Many blessings to you my friend..I pray your surgery went smoothly and that you are recuperating nicely...please keep us up to date on things when you can.

    God bless,

    Tori

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited October 2012

    Hi Girls....I'm feeling a bit overwhelmed tonight. I just came back from my 1st follow up appointment with the surgeon. Pathology report shows tumor at 5.6 cm, and 13/16 nodes positive.



    I see the onc this Friday, but since I still have 4 drains from one mastectomy. Surgeon says all drains need to come out before any scans. So I still don't know stage or grade.



    Is there any chance that it could be contained to those nodes, without spreading to other parts of the body?



    I'm anxious to hear from you all.



    On a good note, surgery was 10/22 and I took my last pain meds at bedtime on 10/27.



    Blessings

    Paula



  • tectonicshift
    tectonicshift Member Posts: 102
    edited May 2014

    Dear Paula,

    Absolutely it is possible that it has been contained! I had 11 positive nodes and all my scans were clean. I did not have PET scan but I had brain scan, bone scan, and CAT scans chest, abdomen, pelvis -- all negative for mets. 

    Of course I know distant mets could show up eventually -- my doctors have even said they are very concerned -- but for now I am doing well almost one year out from original DX.

  • denise-g
    denise-g Member Posts: 353
    edited October 2012

    Paula - I am one year out right now.  My tumor was 6 cm, 9/14 nodes.  Cancer was nowhere else.

    I was Stage 3a.  They scanned the heck out of me, but I was okay and feeling better every day.

    Hopefully, you will be the same.  The good news about Stage 3 is they throw the book at you, and

    you have no choices to make.  Often, I am very grateful for that fact.  Please keep us posted.

    Glad you are doing so well post surgery.  It is all scarey. 

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited November 2012

    Tectonic & Denise

    Thank you both for replying. I've had a few pep talks since Tuesday, and I think I'm ready to put my Fighting Boots on.



    I see the onc tomorrow. I hope to start chemo ASAP. It will probably be 2-3 weeks, as it hasn't been quite 2 weeks since surgery.



    Blessings

    Paula

  • Nicole4
    Nicole4 Member Posts: 56
    edited February 2015

    Paula, I had 11 positive nodes and that was way back in 2011 :)  I think the nodes did their job.

  • Kheng
    Kheng Member Posts: 11
    edited December 2012

    Hi Susan!



    Please let us know what grade is your tumour? Is it ER+ breast cancer? Did you have chemotherapy and radiation? What type of toxic chemo drugs? Are you still on tamoxifen or aromatase inhibitors?

    Stage 4 survivors for 12 years is a miracle from God!

  • Kheng
    Kheng Member Posts: 11
    edited December 2012

    Hi Gai



    Thanks for sharing!

    Are you on anti-estrogen pills after your CMF Chemotherapy and radiation therapy?



    May I know how old are you at the time of diagnosis ?

    Could you share your diet and lifestyle, such as whether you eat only wild fish from the sea, organic vegetables and fruits, brisk walking half hour daily, etc

    Did you read, pray and meditate or go for divine healing service?





  • susan3
    susan3 Member Posts: 2,631
    edited December 2012

    kheng. Not stage 4 for 12 years. had everything under control with tamoxifen and femara. i was stage 11 grade 3  er+ pr+ her2-The biological make up off my cells changed (hormone refractory) so the hormone treatments now feed the cancer instead of killing it, we found that out when it spread like wildfire all of the sudden. so to date i have been in 5 treatments in 14 months, i am now on taxol. starting the third treatment this Wednesday. My nodes feel smaller and the neck pain is gone. so far so good. Thanks for thinking of me. How are you doing