Those who have positive nodes --?

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Rachel1
Rachel1 Member Posts: 363

I was diagnosed about 4 wks ago with IDC stage 2 grade 3, 2 positive nodes, ER+ and had additional nodes taken last Friday. I don't even want to know the results because I am so afraid. I actually told the surgeon NOT to tell me.  How do you deal with the fear of being node positive and the fear having a recurrence or metast.?

Thanks ladies.

Love,

Rachel 

Comments

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited June 2010

    Rachel - I can't answer your question because I am the type that would ALWAYS rather know than not know, and wonder.
    But i will tell you this - when I was dx, I really fell apart. I could barely function.  The local breast cancer coalition paired me with a peer/mentor - a woman who had been through the same treatment I had, but years earlier. She was A GODSEND. Without her and this site, I don't know how I would have made it through.

    But anyway, the point of the story is...she was 33 when diagnosed - had kids 6,4,2.  She had positive lymph nodes. She was 6 years out from treatment and doing fine.  And so this one time we were talking on the phone, she was at her kid's lacrosse practice. She was waiting to pick him up and sitting on the bleachers talking to me.  I could hear the sounds of practice in the background. 

    Out of ALL the hours of phone calls and wise things she said, and caring and listening she did, THAT moment was the one that impacted me most of all - the realization that she had COME THROUGH IT and was on the other side, and was once again just another mom, going about her life, taking care of her kids, doing the sports-mom drive/pick up thing just like everyone else. And THAT sound byte stayed in my head through the difficult months of treatment and gave me a vision that there IS a future on the other side of this.

    I was dx last March (09) and went through treatment that ended in April, and I got my port out in May. So it was 15 months. You can see in my signature all the stuff I went through.  And now, here I am - my daughter is getting married on Saturday (3 days from today!!!) and I am going to be the mother of the bride, just like anyone else would be. I'm not the Cancer Mother of the Bride, I'm just ME again.

    I'm crying as I write this - I had no idea I would be so emotional. I just wanted to cheer you up. But I guess it really is a milestone for me - to leave treatment behind and rejoin regular life again.  And I am so happy.

    And Rachel - you will come to this point as well. Really and truly.

    The fear of recurrance or mets is real and has to be dealt with. But so does fear of a lot of other things - things happening to our kids, car accidents, etc.  I get scared sometimes but then I get back to the activities of daily life and the fear recedes.

    PM me if you want to 'talk' more about this. I am sorry it is so hard for you right now. But you ARE going to make it through.

    Stay strong. 
    In support and sisterhoood -

    Amy

  • Charley
    Charley Member Posts: 255
    edited June 2010

    I understand the "not wanting to know".  After I was first diagnosed and before my surgery was scheduled (I was doing genetic testing) I just kept thinking "why can't I just stay here in limbo one more day?"  But logic and wisdom says you can't and eventually you have to deal with it. After I had BMX I was told I had one positive node. Totally fell apart.  Couldn't even leave my bedroom.  I think I cried the entire day.  I kept researching and the more and more I read, the more upset I became.  I do think one can get overloaded. Someone on this board told me to take a deep breath ...  she had numerous positive nodes ... she was 6 years out ... I thought about my aunt who had several positive nodes ... she's turning 80 this year ... they didn't even have chemo when she was diagnosed.  

    Take a deep breath.  You will get through this.  This fear will become less powerful every day you move forward. 

    Hugs - Charley 

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited June 2010

    Rachel1- I was initially node negative after surgery.  A week later the pathology came back positive.  I was devastated and terrified.  This forum helped me so much.  The thread entitled  If I hear one more time "thank God it's not in my nodes"  really turned my thinking around.  It was pointed out that my lymph nodes were doing their job.  They were catching those nasty cancer cells.  The lymph nodes  are filters, they are supposed to catch the stuff that shouldn't get out into other areas.  One woman actually posted that she WISHED she had been node positive as she now has mets.  Had her nodes been positive she might have had different treatment.  You are going to do what you have to do to stay healthy.  Just keep making decisions one at a time.  I just did my first chemo last Friday (because my node was positive).  I was terrified.  But here I am, back to "normal" already.  Five more chemos and rads for me.  Then I am looking forward to this being just another chapter in my very interesting life.  Stay strong and lean on all of us too.

  • Curlylocks
    Curlylocks Member Posts: 1,060
    edited June 2010

    Rachel,

     I will be a 5 year survivor of IDC, 4 cm tumour, grade III aggressive, estrogen positve and 3 positive lymph nodes.  I was 41 when diagnosed in October of 2005, I just turned 46 in May!

    I literally fell apart when my pathology report came back with the positive nodes.  It is tough to wrap your mind around it but you know what it is possible!!!

     I am someone that wants to know the facts dont hide anything from me, knowledge is power and that way you can make along with your medical team responsible important decisions regarding treatment.  You want to hit this beast the hardest the first time around and not second guess yourself later on.

    I had the kitchen sink thrown at me for treatment - lumpectomy, 6 months of chemo-8 treatments  (4 a/c and 4 taxol), radiation, had Zoladex injections to chemically shut down my ovaries and started on Armidex.  I later had my ovaries removed (2 years ago) so that I didnt have to continue any longer on Zoladex and am still on Armidex going on 4 years now.

    I am living life with zest once again, yes it is different --- how can it not be when you are faced with a life threatening illness.  I am back to working out again, running and  feeling pretty darn good!

    This whole journey takes a long time to process mentally and everyone is different in the way that they process things.  They say that this is similar to going through the stages of grieve which are anger, denial and then acceptance.   I still think about breast cancer everyday but dont let it overtake my life or my enjoyment of it.

    Yes you could have a reoccurance, there are no promises in life.  No one knows what tomorrow holds but I would not waste the time that you do have left wondering and worrying about something that may never happen. 

     Give yourself time to grieve at your own pace and then eventually in time you will find a place where you find comfort and can begin to start living your "new normal:.

    PM me if you have any questions.

     Michele

  • rackie
    rackie Member Posts: 192
    edited June 2010

    wow this site is helping me a lot.  today i was diagnosed with invasive ductal carcinoma with 3 out of 5 lymphnodes infected.  i go to see the oncologist on tuesday to see what course of treatment i  need.  i have two kids ages 8 and 7 so need to be around a long time for them.  i am wanting treatment asap and will take whatever is offered.  i am not thrilled about the possiblity of chemo, but if it get rid of this horrible disease so be it.  i was totally shocked with my diagnosis.  i had no breast lumps and went for physicals every year.  my dr said no mammograms until 50.  well jut before i turned 45 i found a lump in my armpit.  i have been going tfor tests since march 5.  finally i got some answers.  i am scared that it is in the lymphnodes, but i am reading about many women having this and surviving.  thank goodness i found this website!

  • AngieC
    AngieC Member Posts: 5
    edited June 2010

    Rachel,

    I was diagnosed with breast cancer the end of January of this year.  I was 31 years old at the time.  My kids were 2 years old and 6 weeks old at the time.  I live in Pittsburgh and it is protocol here to give neoadjuvant chemotherapy (chemo before surgery) to shrink the tumor.  This was very hard for me mentally b/c I was so worried the cancer was going to spread b/c I was not having it surgically removed first.  I have finished chemo and am scheduled for surgery on July 1st.  I do know I had one lymph node involved because it looked abnormal on ultrasound, was biopsied, and was positive for cancer.  On top of that, I work in a hospital where we admit a lot of metastatic breast cancer patients.  We don't see the breast cancer patients that do well, only the ones that do not do well.  So for the first few months after diagnosis, I walked around thinking I was going to be one of those patients that don't do well and leave my kids and husband behind.  Mentally I was going through HELL!!!  I didn't think I would ever feel happy again.  But now that I am finally having surgery and have finished chemo, I am starting to see the light at the end of the tunnell.  I am starting to see that there is life after breast cancer.  I know how afraid you must be because I was there 5 months ago but I promise you it will get easier as you get through treatment.  Try to stay positive and keep  fighting.  And remember, the majority of people with breast cancer do very well whether they have lymph nodes involved or not.  On the day I found out I had breast cancer, the radiologist who did my breast and lymph node biopsy told me that I was going to be OK.  She said this year would suck but that I was going to be fine.  I have held on to those words through all of my treatment.  So just remember this year may suck but you will get through this.  

    Angie         

  • bailey1958
    bailey1958 Member Posts: 199
    edited June 2010

    Hang in there Rachel, there are so many amazing women on this site who are WARRIOR Women - leading the way for you and I and all of the newly diagnosed women - showing us through their words and their actions that it is possible to overcome this. 

  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited June 2010

    Rachel, I'm not sure that I have any more wisdom than has already been written here, but I just wanted to say that you will get through this.  Right now you are facing some tough decisions about your treatment, and you are the only one who has the right to determine whether or not you want to be told, but knowledge is power.  You won't be able to take control unless you know what it is that you are fighting against.  From my experience, finding out that I had positive nodes was more difficult than being told that I had breast cancer.  After meeting with my medical oncologist, and learning what I could expect from chemo, I was depressed and considered not going through with it.  But, I decided that I had to be able to look at my husband and kids and tell them that I did whatever I could to rid my body of this disease, and that if I didn't go through with the chemo and it came back, I would always wonder "what if...."  I am now halfway through, and although it has been difficult, I know that I will come out on the other side feeling that I made the right decision.  If, down the road, I have a recurrence or mets, I will deal with it.  Good luck.

    Welcome Rackie.  I'm glad that you found this site, it has been a wonderful support and information network for me.  Good luck to you, too.

  • Rainenz
    Rainenz Member Posts: 93
    edited July 2010

    You are at a difficult time in your Dx with so many decisions to be made.  As for having positive nodes.  For me that has been a good thing, it showed that they were doing there job and stopping this disease going any further.  This is from someone who had 6 pos node nearly 14 years ago and 29 pos nodes on the other side 4 years ago from a new Dx. I had chemo and rads both times.

    As for the worry of recurrance or mets if it is  to happen I know I have done everything I could to prevent it.  In the mean time I try to enjoy life to the max.  I had 2 teenagers when 1st Dx and now am a Gran to 3 beautiful cherubs.

    Wishing you all the best with your treatment.

  • mymorganhorse
    mymorganhorse Member Posts: 4
    edited July 2010

    Hello.  I'm going through the same thing. About 2 years ago I was diagnosed with DCIS and did nothing because I had 3 different doctors tell me 3 different things.  After almost a year it came back in same place. I had the first lumpectomy in August 2008 and then in June 2009 I had 3 lumps removed at the same time.  My first lympth node removal in 2008 was negative but I was her2 positive and then my second surgery and tests said I had 2 swollen lympth nodes but I don't think they were removed because they came up on a PET Scan.  I am a difficult case because now I am IDC with HER2 positive/neu and estrogen and progesterone negative but it's in my skin nodules. I have gone through chemotherapy and now on Tykerb still getting Herceptin.  Don't know myself where this will go but I keep thinking positive.  There are so many things that the doctors can do now and so many chemo regimens they can use.   Good Luck

  • rachel5738
    rachel5738 Member Posts: 920
    edited July 2010

    Hi there--Was just diagnosed with IDC, Grade 1, Stage 2, positive lymph nodes 1/3--surgeon will be going back in for axillary dissection to take a look at other nodes. When I heard the news of a positive node, I was disappointed but since reading these threads--I know that I am not alone. My family GP said to me last week---you will look back on this in a year and say "wow" look at me, what an inspiration--then she said, I know you don't believe it now--but you will. I take that and wait for the time in a year when I have gone through this and WON!

  • marcy4
    marcy4 Member Posts: 162
    edited July 2010

    RAchel, 

    I was diagnoised with IDC and well in January and initally was told my lymph nodes should be negative, however that was not the case once the SNB was done.  I too thought this was the end of the world and spent 4 days crying and thinking I was dying for sure.  However after reading so many posts from women with both negative and positive nodes I think we all have the same opportunity to do very well with the many treatment options that are open to us. I am presently in Chemo with rads to follow and doing quite well.  I do not think of dying, I think of being cancer free at the end of all this and if a reoccurance happens, I know there are many other treatment options out there for all of us.  I have 4 kids ages 7 - 13 and we carry on life as normally as possible.  I want my kids to see me just as Mom and not as ":Mom with Cancer".  It breaks my heart sometimes when I hear them use the words "chemo" and "cancer" as part of their regular vocabulary, but I want them to see their father and I as treating this as something that we can deal with and that cancer just means I am sick for a little while.(Which I really hope is the truth!). Best of luck to you and whatever news you get, you will find the strength to deal with it..  We all do.

  • rachel5738
    rachel5738 Member Posts: 920
    edited July 2010

    Hi Marcy--Thanks for posting--fellow Ontarian! I am back at surgeon next week for potential next surgery and also meeting with radiation doc next week. My meeting with oncologist went well and although I had a lymph node positive, I wasn't terribly upset--yeah it sucks--but I will get through this. I have two young boys and also hate it to hear them use the terms chemo/cancer--I would of hoped that they would have got through life without this touching them--probably not a possibility in these times.

  • melania
    melania Member Posts: 117
    edited September 2010

    Hey ladies,

    Your posts brought tear in my eyes.

    You are so wonderful.thanks for being there.

    I am 38 and diagnosed with IDC,the tumor grade 2 and its 2.5 cm. ER /PR+

    My drs also wan to start with the chemo before surgery.

    We are not sure about lymph nodes yet. My initial biopsy showed 2 enlarged nodes, now i ahve to go back and do another biopsy for lymph nodes. My question is before doing surgery  how did u find out about positive nodes? the initial  first biopsy which also diagnosed you for breast canser  or you did an extra biopsy for the nodes?

    please tell  me.

    thanks

  • Kathy044
    Kathy044 Member Posts: 433
    edited September 2010

    Hi Melania, I had a fine needle biopsy of an enlarged node at the same time I had the core biopsy of my tumour. It was a very simple procedure, so I wouldn't worry too much about having to go now to have the biopsies on the lymph nodes done. In my case I'm quite happy to have known about the cancer in the node ahead of time so I didn't need to come back to have nodes removed after surgery.

  • juli0212
    juli0212 Member Posts: 1,415
    edited September 2010

    I did not know until after surgery and nodes were removed (tested) that the sentinel node was diseased (to me the worst part was them injecting the blue dye into 4 sides of the areola the day before surgery...ouch-OOOOH)  I think if ANY of the nodes are affected, it changes the protocol for treatment, go more aggressive (read:  radiation after chemo).  Good luck to all.  ~juli

  • radno
    radno Member Posts: 1
    edited September 2010

    Hi Angie, I was reading your post and I am from Pgh. too. I have just been diagnosed with IDC this past week. Was going to have surgery, but I had lymph node biopsy and there is cancer. So Dr. is sending me to oncologist next week to have chemo. I was wondering if you could give me any info on a good oncologist. Or if you would be willing to chat.

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