Enlarged Lymph Nodes

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Pokerkitty6
Pokerkitty6 Member Posts: 8
edited June 2014 in Triple-Negative Breast Cancer

Hi All!  I'm new here.  I have triple negative basal breast cancer.  Stage 2 grade 3.  I finished 6 months of chemo on Jan 13, 2010.  My hair is now growing back.  I will NEVER say I hate my hair again.  I am a 44 year old white female.  I have to have 2-3 PET scans a year due to this agressive cancer.  11 lymph nodes removed all negative.  My last PET scan and CAT scan showed 2 enlarged lymph nodes.  I have expanders in while waiting for my implant surgery on May28th.  I had a double masectomy.  Is it possible these expanders are the cause of my enlarged nodes?  Should I have a biospy done?  Can they biospy when they put in the implants?  I am scared of this particular cancer because my dr keeps telling me how aggressive it is.  What is the longest survival rate you have heard of with this type of cancer?  Has anyone filed for social security disability with this type of cancer?  I am a strong positive happy person, but this really scares me...........

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  • Pokerkitty6
    Pokerkitty6 Member Posts: 8
    edited April 2010

    ps...my enlarged lymph nodes are in my chest wall....

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  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    Kitty..I had a lumpectomy, chemo/rads...

    Not sure what the survival rate is but I can assure you that most of us tn's plan on being around for a very long time...yes..tn is agressive, but it responds well to chemo.

    I wouldn't worry about dying yet...I think you probably have a good long time...!  

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  • jenn3
    jenn3 Member Posts: 3,316
    edited April 2010

    TN is aggressive, but responds well to chemo - if you look around you'll see plenty of survivor stories from TN women.  I know it's hard not to worry, but try not to think about what might happen, because that's just what it is "MIGHT".  I can't answer the questions about the enlarged lymph nodes and expanders - I haven't started recon yet, sorry I can't help.  Your onc should be able to answer a lot of those questions and hopefully be able to put your mind at ease.

    As for the hair - I feel the same way.  I love, love, love my hair now, no matter what mood it's in.

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  • angelsabove
    angelsabove Member Posts: 363
    edited April 2010

    I am with the other ladies.....YES TN is very aggressive. I too am finding those survivors out there. I actually called a breast cancer network and was matched with someone with a similar dx to mine. She called and told me....she was 8.5 years post TNBC diagnoses. She does NOT even go to see her Onc. anymore. She said I was 32 years old with two VERY small children. 

    I said OH I JUST HEAR THE BAD STUFF......I go to cancer boards and I GET SOOOO SCARED.....She said of course it is scary and IT IS NORMAL to feel that way......

    She then told me that I need to remember MOST of the women that come on the boards are those starting treatment, going through treatment, or fresh out of treatment, or those with a concern or a reccurence.

    She said u dont see those like me because HONEY we are WAY to busy off LIVING.....

    I thought HEY she just might be right.......GOD IT WAS AWESOME TO KNOW AND HEAR THE VOICE OF ONE OUT THERE.......

    I too like Jenn3 have NOT done any reconstruction, I have heard of women with complaints and different areas of hardness and swelling from them.

    I hope someone comes along to help u with this.......

    JENN......we were just a couple of months apart in DX.....HOW R U SISTER???????

    MAY GOD BLESS US ALL 

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2010
    Angelsabove - the person you are matched was absolutely correct about the long-term survivors.  I have a friend who had TN at 29 (eight years ago).  She had 3cm with positive nodes...did chemo and rads and has since married and had two children.  She never posts on any websites or anything about her cancer. She has really moved on and has been a total inspiration to me through my ordeal. I also work with a woman who had aggressive hormone negative BC 8 years ago. She doesn't know if she was TN or Her2+ but either way, she's fine and has since moved on. I finished rads today so I guess now I need to get used to being done with treatment. Laughing
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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2010
    Angelsabove - the person you are matched was absolutely correct about the long-term survivors.  I have a friend who had TN at 29 (eight years ago).  She had 3cm with positive nodes...did chemo and rads and has since married and had two children.  She never posts on any websites or anything about her cancer. She has really moved on and has been a total inspiration to me through my ordeal. I also work with a woman who had aggressive hormone negative BC 8 years ago. She doesn't know if she was TN or Her2+ but either way, she's fine and has since moved on. I finished rads today so I guess now I need to get used to being done with treatment. Laughing
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  • Luah
    Luah Member Posts: 1,541
    edited April 2010

    Sugar77:  WHOO-HOO, done rads!  Congratulations, you must feel thrilled to be done, but anxious too, since that's the end of treatment for us trip negs.  I'm sure I will have very mixed feelings when I get there, but you're right, we have to move on and LIVE!  Hope you had a nice dinner out this evening.  (PS Did your skin burn very much? I start next month.)

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  • Pokerkitty6
    Pokerkitty6 Member Posts: 8
    edited April 2010

    Thank you all for the feedback.  My dr said I couldn't have radiation because my tumor was right behind my nipple and it would have burned me.  Now I have 2 enlarged lymph nodes and that concerns me.....

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited April 2010

    What does your group of doctors say, Kitty? I'd think, as yourself, they'd like to address those two chest wall nodes etiology too. Prior surgery can stir up local lymph nodes, in other words there are inflammatory or infectious reasons for lymph node enlargement in addition to other. Did you have a PET/CT scan prior to this one as a baseline?

    It usually is possible to obtain a biopsy of lymph nodes by CT or MRI-guidance or even ultrasound , especially if they are close to the skin incision and can be visualized well. If they are far back behind the expanders, that's more difficult. Maybe something can be worked out to biopsy them at time of replacement.

    Sorry about this finding, always so anxiety provoking. You're right to get answers so what ever they are from you can deal with facts.

    Hope this helps a little,

    Tender

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  • Pokerkitty6
    Pokerkitty6 Member Posts: 8
    edited April 2010

    Thanks again.  I had a Pet scan and then they sent me for a Cat scan.  They both show the same thing.  Now my dr says they are not sure what it is.  They no longer think its the lymph nodes.  Maybe its the expanders.  They will be removed on the 28th when I get my implants put in.  In the mean time, my dr wants me to keep my port.  I was hoping to have it removed on the 28th.  Cancer can be so tiring....I also have high blood pressure.  Now I have to go see my primary dr to take care of that.  I have too many drs and too many bills.  This is crazy.  I'm sure you can all relate!  CANCER SUCKS!!!!

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  • Pokerkitty6
    Pokerkitty6 Member Posts: 8
    edited July 2010

    Hi all!  I just had another Pet Scan and it is showing a 2.2 cm mass in front of my heart.  The scan does not indicate it is cancer.  The scan showed no cancer anywhere.  Should I be concerned about anything right now.  I just had my 1 year cancer anniversary on June 9th.  My implants were put in on May 28th and I will finish reconstruction later this year.

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  • Pokerkitty6
    Pokerkitty6 Member Posts: 8
    edited July 2010

    Good Morning all!  My dr just called and wants me to have a Cat Scan tomorrow.  Should I have it?  March 3- Pet Scan  March 17- Cat Scan  July-7 Pet Scan tomorrow Cat Scan.  How much is too much?  I feel the Cat Scan will show exactly the same thing and then what....

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  • Pokerkitty6
    Pokerkitty6 Member Posts: 8
    edited July 2010

    ok....my dr. is now sending me to a lung specialist.  She feels my thumous gland is enlarged.  She does not think it is cancer, and the cat scan dr. doesn't feel it it cancer, but they are playing it sage by sending me to the lung dr.......

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  • Pokerkitty6
    Pokerkitty6 Member Posts: 8
    edited September 2010

    Hi all!  Just an update.  The lung dr. sent me to a thyroic surgeon, who attempted a biopsy on me but had to abort because it was too close to my heart.  Went to Shands in Gainesville, Fl and the surgeon there was surprised where he cut me, right at my clevage line.  I'm going for another opinion at the Mayo Clinic on the 14th.  If my thymus gland is not enlarged, they are saying the lymph nodes are infected with the disease of breast cancer.  I am in the process of getting paperwork sent to Moffit in Tampa, which I think will be the place for me.  In the mean time, I am switching my local ongologist.  I never had radiation because they said my tumor was too close to the skin and it would burn me.  What do you think?

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited September 2010

    Hi Pokerkitty,

    I think whenever you have had conflicting care and follow up, a second opinion is warrented. It sounds like you had a mastectomy on both sides? If the tumor was removed, and not close to the chest wall, perhaps radiation was not warrented?  But you are getting bounced around, and that is incredibly stressful.  I'm curious, who felt that this was cancerous lymph nodes if it was not the thymus? 

    I am glad you have been diligent with updates, because we get involved and care about a person's outcome, then worry if they disappear.  You have an appointment on the 14th at Mayo Clinic....where is exactly is this (please excuse the geographical ignorance.) We will be hoping for an easy answer and a non-malignant cause of this swelling/mass.

    traci

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