so scared of lymph node involvement

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Melissa1971
Melissa1971 Member Posts: 60
edited June 2014 in IDC (Invasive Ductal Carcinoma)
so scared of lymph node involvement
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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited January 2009

    I was recently diagnosed w/ invasive ductal carcinoma. I am 37 yrs. old w/ 2 little boys (and  great husband).I found the lump on my own and was told that it measured 2.3 cm on the MRI. I am scheduled for surgery on Wednesday 1/28/09 and will have a lumpectomy. I was told my lump is "clean" meaning no "fingers" branching out and was contained. I am so scared of lymph node involvement and what they might find during surgery. I was told that both the MRI and ultrasound didn't "show" anything in the nodes,but also know that cancer spreads microscopicly. I am just petrified that cancer has spread all over my body. This diagnosis came as quite a shock and I am trying to stay positive, but am so scared.

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2009

    Melissa, sorry you are dealing with this.

    Waiting for all the information is sooooooooo hard.

    And ...that is what you have to do...wait. The rest of the info helps determine what treatments will work the best. It is unlikely that you have distant spread...most are in earlier stages at diagnosis.

    No matter what the stage and grade many treatments are available, many people have great success stories.

    It is OK to worry and obsess but save room for optimism and hope.

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  • roberta37
    roberta37 Member Posts: 371
    edited January 2009

    Melissa1971 - this is the scariest part of all this - the unknown and the waiting.  Once you've had your surgery and find out what the best plan of action is for you it will get easier.  I have a 5 year old and a 9 year old and that was the hardest part for me but they were so amazing through everything you'll be amazed.  There are so many women on this board that are standing behind you right now and will help you every step of the way.  I ended up using ativan for those times when I just couldn't get my mind to stop racing and needed to settle my nerves.  I was also petrified and scared and a year later I'm feeling stronger everyday.  The best thing I did was to come to this support group and another one that actually helped me find two ladies close to home going through the same thing.  I'm sure there will be many that come along to offer up their experience and encouragement. Hang in there and know that you are not alone.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Melissa - you will read that this is the hardest time- the not knowing.  Once you know and have a plan it gets easier.  So far all of the info you have looks good.  Trust your doctors.  My diagnosis was also a shock - found on a routine, annual mammogram and I am 44.  My tumor also looked to be 2-3 cm on MRI but in reality was only 1.6cm.  My Doctors were somewhat confident that my nodes were clean prior to the sentinel node biopsy, and they were right.  I guess they base that on the ultrasound, and gut feelings. 

    If you have positive nodes, they have a treatment plan for you, and many women I have "met" (online) have been fine for years with node involvement.   Hormone postive cancer is successfully treated with tamoxifen or AI's to discourage additional tumor growth. I know these have their own side effects, but for some reason I get comfort from those stats.

    It is a strange feeling to look forward to a surgery, but I sure did.  Hang in there.  I have two kids too -probably older than yours, but had to keep a happy face for them.  Whenever I get scared, or down I just remind myself that at least it was caught NOW before it got worse.  

    Susan

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  • peeps1111
    peeps1111 Member Posts: 262
    edited January 2009

    Hi Melissa:

    It's great that they said it was contained.  They knew mine was not.  I only had a micrometastasis in one node that wasn't found at surgery but was found later and I declined the axillary node surgery and chose to have the axilla radiated since I was having radiation to the breast. Sounds like you won't have a node problem if there are no "fingers".  Even if it was in a node, chemo is an option which is very doable.  Things are different now and although sometimes it seems treatment is long, breast cancer is very treatable and they are finding things out daily that minimize side effects.

    You have lots of choices and it's always best to go with an educated "gut".

    Peeps 

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited January 2009

    I am so looking forward to this surgery. I can feel the lump and what it OUT!  I am staying busy with work and family, but like I said in my original post, so scared of the worst case scenerio....waking up from sedationand hearing it spread beyond the tumor...

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited January 2009

    My surgeon also said my tumor was "high grade". Can anyone explain what this means? I assume fast growing...

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  • juniper
    juniper Member Posts: 110
    edited January 2009

    Melissa,

     I am your age and have two young children as well.  I know how scary it is and what you are going through.  High grade is associated with more aggressive growth.  Here's the thing - as hard as it is, try not to get worked up until you have the pathology from your lumpectomy.  Lots of things show up (and don't show up) on scans, but pathology results are pretty concrete.  Wait until you have those results.

    I assume that you will have a sentinel node biopsy.  Hopefully it will show that you have no node involvement.  Your scans sound promising.  After you get your pathology results, you can start a treatment plan.  You will find out if your tumor is positive for hormones or her2neu.  I wish you luck for your upcoming surgery.  Try to rest and give yourself permission to be optimistic.

    Jennifer

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited January 2009

    Thanks Juniper!

    I am trying to stay positive, but my mind keeps going back to "worst case scenario" mode. My boys are just 5 and 7 and it pains me to think I could die before they reach adulthood.I know bc is so curable these days, but then I read something in the paper or see on the news that someone just died of bc. I also have ulcerative colitis (diagnosed about 10 yrs. ago) and have stayed in remission for the past 9 years...I always felt empowered to deal w/ that disease because it isn't life threatening, but breast cancer seems so scary! Everyone keeps telling me I'll be allright, but I am not feeling as optimisitic. I am petrified! Glad I found this forum where other women can understand from a similar perspective....

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  • LizM
    LizM Member Posts: 963
    edited January 2009

    Melissa,

    I know how scary this all is before you know exactly what you are dealing with and what your treatment will be.  Of course we hope and pray that your nodes are clear; however, remember there are many breast cancer survivors with positive nodes.  My tumor was 2.1 cm and I had one positive node.  Because of the positive node I had more aggressive treatment but it has been over 3 years since I was diagnosed.      

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  • smokey
    smokey Member Posts: 7
    edited January 2009

    Melissa,  The surgery was scary.  The needle the doctor used to inject my nipple & breast prior to surgery was very painful.  Then, I was put in a gamma ray machine to try and detect exactly where the "centinal node" was located before surgery.  The surgeon did a great job.  When home, the incision on breast to remove lump seemed long...wide (but over time it shrunk up and became small).  The most irritating and painful recovery from surgery was my ArmPit where the lymphglands had been removed----best advice I can give is for you to roll up a nice clean dry washcloth and stick it underneath your armpit.  The dry washcloth will help so the skin is not rubbed.  It really helped me.

    You will be okay.  Hopefully the doctor will not remove more lymphnodes than is necessary; I had 7 removed.  After a year, my back armpit area is still numb (like the feeling of when the dentist injects the mouth with novacaine).  I know you are scared.  The road ahead is hard, but so many of us are here to help whenever you have questions or need support.

    Smokey

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited January 2009

    I was just on the phone with a friend of mine who has been through this...she also mentioned the needle in the nipple for the sentinel node test...why don't they do that AFTER you have sedation? She said it was extremely painful. I assumed I would be "asleep' through the entire procedure.

    I have been reading many of these past posts and can relate to so many of the feelings we go through after being diagnosed. CANCER SUCKS!!!!!!!!!!!!!!! I am glad we are in it together but I wish none of us were in this club. I am sure all of you, like me, thought it could never happen to you. I remember sitting in the radiologist's office waiting for my mammagram with about 9 other women thinking how sad it was that one of us would likely be diagnosed w/ bc...not really ever thinking it would be me. I am still trying to take it all in...hoping it is all a BIG mistake :-(

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  • koshka1
    koshka1 Member Posts: 678
    edited January 2009

    hey there melissa,

    the sentinel node biopsy is different for everyone.

    i had it done and the needle did not bother me at all.....honestly.

    hugs to you and be strong....

     kosh

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2009

    Interesting about Kosh from Vancouver. I, too live in Canada and had my SNB in December. As of recently they don't inject right into the nipple here. There are about 4-5 needles (very, fine, tiny ones) injected around the aereola. I barely felt them go in and if I wasn't watching, I wouldn't have known exactly when they were done. 

    My sentinel node was easy for my surgeon to find. Perhaps they have changed the procedure in your area too! 

    Yes, my under arm is still numb, but not painful anymore. Lots of stretching and massaging should be done. 

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  • Mom_of_boys
    Mom_of_boys Member Posts: 556
    edited January 2009

    Melissa1971...

    I had my lumpectomy, sentinel node biopsy, and port placement this past Friday.  I'm doing fine, AND my sentinel node was NEGATIVE! 

    As far as the needles for the SNB, it wasn't bad at all.  I didn't even flinch.  They gave me 4 little injections to numb the area, and then the 4 tiny injections.  Seriously... I'm with barbe1958 and koshka1... it was honestly NOT BAD!

    Good luck to you!

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  • saraand45
    saraand45 Member Posts: 47
    edited January 2009

    Melissa1971

    I too was scared of the dye injection for the SNB.  I heard all kinds of bad things about it.  I had myself so worked up pre surgery I was ready to go to the Mall and call it a day!!!   My husband and nurses talked me out of that dumb idea.   It wasn't bad at all. Barely felt a thing.  I held my hubby's hand looked the other way and it was over.  The shot didn't go directly into the nipple either a little bit above it mine went.  The reason I was told they don't sedate you is because after the injection you have to wait about 1 hour for it to go through your system.  Then they sedate you for surgery.  You will be fine.  If you are really that scared the day of the surgery ask the nurse if they can order you some Xanax or Ativan to take the edge off.  I did it helped alot. 

    Good Luck,

    TinaSmile

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  • Emily2008
    Emily2008 Member Posts: 605
    edited January 2009

    HI Melissa.  I know how scared you were and remember it so well!  FWIW, my MRI showed nothing in the lymph nodes of concern.  My breast surgeon felt pretty confident that they would be clear since MRI is so sensitive.  Sure enough, they were all clean.  So, put your mind at rest.  It's very likely that if there was cancer in your nodes the MRI would've shown it.

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  • jancie
    jancie Member Posts: 2,631
    edited January 2009

    Melisa  - I had a sentinel lymph node biopsy done just last Wednesday, Jan 21st.  I too dreaded the idea of anyone sticking needles in my nipple.  I begged for 10 mg of Valium and the doctor approved it.  I also asked my breast surgeon why they couldn't do the nipple needle part while I was put under and he said because it took awhile for the dye to work and he would have me under longer than he wanted.  So my thinking was "ok, some surgeries take 8 hours or longer, what is another half hour of being under anethesia if the surgery only lasts for one hour to begin with"  I guess my line of thinking didn't quite work with the surgeon - LOL.

    In any case, the valium worked WONDERS!  The lidocane shot hurt the worse as they shot me right outside of my aeroela and then after that I didn't feel a thing.  Yes, I did scream when I got the lidocane shot, I have zero tolerance for pain.

    Ask for valium or xanax - you will be glad you did!  I thought for certain that I had cancer in my lymph nodes since my tumor was 4 CM - quite large!  But, I didn't.  The surgeon removed 5 lymph nodes and they were all negative.  I am having chemo done strictly for the reason that I want to try to reduce the size of my tumor so I can have a lumpectomy versus a masectomy.  I have small breasts so they would literally massacre my breasts if they took out the tumor right now with the size that it is.

    I stayed in bed on heavy drugs for 3 days straight and just now feeling half way coherent to get back on here.  I slept probably 18 hours a day because of the pain and of course the meds just kept putting me to sleep which wasn't a bad thing.

    You caught your cancer while it was still small - be so thankful and be positive but hey....it is ok to be scared senseless and pissed off at the same time.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2009

    I had my injection 24 hours before my surgery to make sure it had moved through my system. That meant 2 visits to the hospital. Kind of like a practice run the first day.

    I don't think an MRI can show whether a node is cancerous or not. Not trying to be negative, but if that was the case, none of us would need an SNB! 

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited January 2009

    Had surgery today and was quite anxious about it. The 4 injections needed for the sentinal node biopsy weren't that bad. They used a topical numbing cream...the first 2 hurt for a few seconds, but the last two weren't as bad. The surgery itself was fine because I don't remember a thing...thank goodness for anesthesia! I had a lumpectomy...there was one "walnut" sized lump which came out solid as the dr. told my husband and they took out margins for the pathologist to check. The BEST NEWS is that my sentinal node was CLEAN !!!!!!!!! I am so relieved as that was what I was so worried about, hence the title of this thread. I can rest alot easier tonight and feel very confident that all will be okay. Of course the fight has just begun with chemo and radiation in my future, but I can handle that...

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2009

    Good news for you Melissa.

    Hope your treatments go well.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2009

    Melissa, you are lucky to have heard right away about your nodes. I had to wait until the pathologist dissected mine with my breast! I've heard some hospitals can do it on the spot but mine didn't, they sent it to a larger city near me (Toronto). I already knew my breast had cancer, my big worry was my lymph nodes. I had to wait 3 weeks through Christmas and New Years! But I gave myself a 3 week "vaction" from waiting for the phone to ring.

    Congrats! 

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