New to Board - Dx IDC with Positive Lymph Nodes

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mmdj43
mmdj43 Member Posts: 45

Hi Everyone,

I'm fairly new to this board and during the past 2 weeks it has been a complete emotional rollercoaster ride.  I was diagnosed on 2/16 with Invasive IDC (not sure of correct way of saying it) and was just informed that my biopsy on one of the 3 enlarged lymph nodes came back positive, which now puts me at Stage III rather than Stage II as I was told yesterday.  Hormone Receptor test came back positive (which is a good thing) and the HER2NEU is still pending results.  I'm scheduled for a breast MRI, CAT scan and BONE scan this week along with an appt w/my breast surgeon.  I met with my Oncologist today who already told me that I will definitely need chemo, radiation and surgery.  He's recommending I get the chemo first to shrink down the tumor than have the surgery with radiation somewhere in between or after (don't recall).  He also said not to be surprised if the breast surgeon puts a port in on Friday when I meet with him because he's looking to have me start on chemo as early as next week.  I'm nervous about the side effects from that (hair loss, nausea, fatigue, etc.) but more concerned right now about getting the results from the scans to see if the cancer has spread anywhere else.  I know once it goes into the lymph nodes it becomes a huge concern.  I'm just not understanding why they would need to wait till surgery to determine how many lymph nodes had cancer cells in them.  So I have all these tests being done this week and I'm so nervous about all this.  I was forced to learn more about breast cancer but at the same time I'm ready for a fight.  I am more mad about it than I am upset.  Maintaining that attitude will help get me through this, along with the wonderful friends I've met in just a short amount of time that are BC survivors and willing to take the time out of their schedule to support me.  It truly is amazing, and an enormous blessing! 

Comments

  • revkat
    revkat Member Posts: 763
    edited February 2009

    Welcome! I'm sorry you have to join us, but this is the best place to be if you have to be here (did that make any sense?) It sounds like your doctors have things all lined up for you -- everything looks to be pretty much the standard procedure. All this testing can cause a major case of "scanxiety", perfectly normal to be feeling like you've stepped on to a train that is rushing ahead and that you have no control over at this point. Deep breaths, xanax if you want it, hold a friend's hand (or even one in cyberspace) and you will get through this. Check out the "starting chemo in Feb. 2009" type thread and meet some folks who will go with you every step of the way!

    From what you wrote it sounds like you had a Sentinel Node Biopsy and of the three nodes the surgeon removed only one had cancer in it. (Doesn't it sound better that way?) They can't tell about other nodes until they remove and biopsy them. If you weren't having chemo first they would probably do that right away, but since you are having the chemo first they will remove more nodes when they remove the lump (or breast, depending on what surgery you end up having.) Because you are having neo-adjuvant chemo (chemo first in normal language) you may never be sure how many of the nodes were affected -- sometimes they find dead cancer cells in the nodes, but more often not. It's not necessarily that important -- knowing that it had spread to at least one node and having a larger tumor put you on the chemo train. And it's just a good to have the chemo knock out anything that may have been in those nodes as it is to have them be clear in terms of treatment options at this point.

    Mad, sad, upset, shocked, determined, depressed, whatever you're feeling is normal and will probably change over the course of your journey. Best wishes.

  • VisaliaMom
    VisaliaMom Member Posts: 12
    edited February 2009

    The intensity of the side effects will be determined by the kind of chemo you receive and by how your body reacts.  Every body is different.  You will find your SE's are different from the lady sitting next to you receiving her chemo.  You will lose your hair approximately two weeks after your first treatment.  Many of us opt to shave our head or have the hair cut very short prior to the hair falling out or when it begins to fall out.  If you decide to wear a wig, you may consider getting it before the hair falls out.  This will give you the sense of being in control of the situation.  For many, fatigue doesn't set in until after the second chemo treatment and accumulates with each treatment.  Yet there are women who are able to keep working throughout their treatments.  Before you have a treatment, you will probably take medication by mouth to help alleviate or keep nausea at bay.  You may even receive medication intravenously before the infusion begins.  Afterwards, if you start to feel nauseated, you'll have medication on hand to help.  Once again, every body is different.  Hopefully, you will go through this stage of your journey with the very minimum of side effects.  Best wishes and lots of hugs!

  • lisaelder1972
    lisaelder1972 Member Posts: 171
    edited February 2009

     You sound alot like I did upon diagnosis.But I wanted to let you know that once you get started with treatment,you will find strength that you never knew you had and you will fight AND you will win!Take things as they come,live day to day and come here often for support.Take care.

  • mmdj43
    mmdj43 Member Posts: 45
    edited February 2009

    My Onco just called to tell me that the CT scan revealed a small spot (~1.3cm) on my spine and 3 small spots on my liver.  he's waiting to see the results of the bone scan which will be available in the morning.  but in the meantime, he's really worried about these spots and suspects it's cancer.  this will then put me in stage 4 and i'm sure you know what that means.  my onco said that will most likely want to biopsy the two areas.  i have no clue how painful that will be.

     i just can't believe this is happening to me.  i'm 39 yrs old, married and we have a 6yr old daughter who depends on me so much.  i just don't know what to say.  i'm still in complete shock.  my husband is having such a hard time dealing with this now that the recent news will completely devastate him.

    how can i not help but worry about this when i know that it's just a matter of time?  i'm so emotional right now.  i even noticed the swelling under my arm back in November and my doc and i just thought it was from a torn muscle from my lifting weights.  none of this really got noticed again until the end of january. 

    what can i possibly do (nutrition, etc.) to help keep me strong enough to handle the treatments and the best quality of life for who knows how long?

  • IowaDiva
    IowaDiva Member Posts: 76
    edited February 2009

    Wow!  You must be scared.  However, this is also beatable!!  Believe it and own it!  I know it's normal to go to our "dark place," but you have to believe that you can beat this!!  You have the right to get a second opinion.  Do not give up!!

    I, too, have a 6-year-old (a boy) and two teen girls for whom I'm fighting.  You CAN DO THIS!!  One step at a time.  We are definitely here for you!!!

    Hugs,

    Carol

  • apple
    apple Member Posts: 7,799
    edited February 2009

    the beginning of your cancer journey sounds exactly like mine.  one moment, i was flying along, living my life and then BOOM.

    everything changes.  I am confident my treatment is going well.. it's very extensive (more so than yours at present).  my docs are confident and hopeful.  it's been almost a year since my initial diagnosis.  

    wishing you luck and welcome.

  • LizM
    LizM Member Posts: 963
    edited February 2009

    I am so sorry you are dealing with this.  I hope and pray that the spots are not cancer but if they are I recommend you go to the mets and recurrence forum .  There are many women there who have been living for years with stage IV breast cancer and can provide you loads of support.   Hang in there.

  • Bethie1
    Bethie1 Member Posts: 393
    edited February 2009

    Sorry you had to join us!!  Please know we're here to support you.  I felt it when I joined group in mid Dec '08.  Had my mastectomy in mid/late Jan '09 and now have gotten through a round of chemo! Good luck, and fall back on us when needed!

  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited February 2009

    Hey there. I was where you are a few months ago. I was diagnosed with what they thought would be stage 3 and then the scans came and knocked me into stage 4. I am sorry.  Stage 4 is not a death sentence, it is a chronic condition that we live with.  I am going thru neoadjuvent chemo now.  8 treatments, then getting rescanned and then the decisions for what is next.  If you do get staged at 4, there is lots of info under the recurrence and mets index. We have women posting on there that have had mets for 16 years and still going strong.

    If you want to talk more, you can pm me!!

  • mmdj43
    mmdj43 Member Posts: 45
    edited February 2009

    I'm sorry I have't replied sooner but this past week has been nothing but a whirlwind and an emotional rollercoaster ride.  The results of the bone scan did indicate 'minimal activity' in the T3-T5 of my spine but also indicated that it displayed 'no more' than the usual activity that would occur, but recommended a PET scan.  So basically it came back inconclusive.  Then we saw my breast surgeon yesterday and he read all the test results and told me that right now I'm at Stage 3 and feels that's where it'll remain.  He didn't seem so drastically worried about the spots on my liver and spine, but yet the Onco expressed the exact opposite.  So the surgeon recommended that we start the chemo ASAP and in the meantime he'll schedule the PET scan and the PORT install.  So yet again more tests to further investigate the spots.  I meet with the Onco again on Monday to discuss what kind of chemo but according to the surgeon, "we're going to throw the book at you.".  Guess I'm expecting that I'm going to be given a heavy dose of chemo.

    I was a complete and emotional mess when my Onco had called me on Thursday but I snapped out of it.  Every time I get upset, it turns to anger that I have this thing inside me and I wanna fight it.  And that's what seems to help me get through this, along with being at work.

    I truly appreciate all the help, prayers and support you ladies have given me.  It's truly a blessing to have such special people in my life.  I'll keep you ladies posted.

    Thanks again!

    Mary

  • samiam40
    samiam40 Member Posts: 416
    edited February 2009

    Mary, thanks for checking in and letting us know how you are doing.  You will make it through this--you have to believe that--although it probably seems so overwhelming right now.

    I have 4 kids, including a 5 and 3 year old, and I can recommend the book "Mom has a Polka Dot Boo Boo" that you can read to your daughter.  Have someone get it from the library for you; it has a really sweet and gentle way of explaining breast cancer to young kids.

    You might also want to set up a caringbridge.org blog so that you can keep family and friends updated without having to constantly be on the phone telling the same story over and over.  Feel free to check out mine at the web address I list in my sig line.  I have found it to be very helpful and cathartic.

    Please know we are praying for you and your family.

  • mmdj43
    mmdj43 Member Posts: 45
    edited February 2009

    samaim40, thank you so much for recommending that book.  I'm heading to the bookstore tomorrow to get it.  I was planning on talking to my daughter this weekend and so far have chickened out.  She was so excited today because her first tooth came out that I didn't want to get into a discussion that would have ruined the moment for her.  I'm also hesitating for fear that she may ask a question that I may not know how to answer (if I would even have an answer for her). 

    I'm going to check out the website now and more than likely create my own blog.  Sometimes it can be exhausting explaining this more than once, much less even finding the time to speak to everyone about it when I'm still trying to do some research.  This is still all new to me and at times I feel as though I don't know where to begin or what to look for in terms of getting some answers.  But this website has been amazing and I'm definitely taking notes on some of the things to ask my dr's. 

    Thanks again and I'll post an update on Monday.  Have a great weekend everyone!

    Mary

  • KinAZ
    KinAZ Member Posts: 180
    edited February 2009

    Hi Mary,  I want you to know....everything you are feeling is normal.  It is a rollercoaster-ride.  But as mentioned, you will find strength you didnt know you had!!!!  The meds are great for side effects..s/e  Be sure to take all your prescribed meds.  And report any little thing to the doctors.  Prayerfully you will have minimal s/e from the chemo.  Accept all help that is offered.  Sometimes its hard to let go of control, but your focus needs to be on you right now.  Be sure to come here when you need support from others who have been there.  And ask any question you have.  There is some great info on the chemo board as well as the other boards.  Keep us posted and know you are in my prayers.

    Hugs, Karen 

  • Calif-Sherry
    Calif-Sherry Member Posts: 124
    edited February 2009

    Mary, hang in there..... I'm thinking good thoughts for you.

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