Anyone with a Reg Rec in Supraclavicular Lymph Nodes-scared

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too_young_momof2
too_young_momof2 Member Posts: 93
edited March 2015 in Not Diagnosed With a Recurrence or Metastases but Concerned

I am just wondering if there is anyone out there who has had a Reg Recurrence in their Lymph Node in supraclavicular region?

I noticed a node back in Feb, forgot about it and re found it a few weeks ago. I have a ultrasound tomorrow and am very nervous.... What should I ask about the scan results? Dr said depending on ultrasound results will determine if I have a biopsy.

Originally diagnosed in '06 at age of 26, with  IDC with node involvement Er+ Pr+ and HER2+, I had bilat mast, chemo, Herceptin rads and multiple recon surgeries. I didn't tolerate tamoxifen very well, I did not take for long, I did however have Zoladex  injections for  3 years stopped all hormonal treatment 2.5 years ago. 

Any words of wisdom, or experiences with the same? 

Thank you all in advance :) 

Michelle

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited April 2014

    I hope I am not the only one....

    Ultrasound was inconclusive, went in worried about 1 node and they discovered two more. I have appointment no on Tuesday with surgeon to meet and discuss date for excisional biopsy .





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  • dutchiris
    dutchiris Member Posts: 855
    edited April 2014

    I have no words of wisdom or experience with this recurrence but I'm sure you aren't the only one.  You are doing what needs to be done.  I know you are afraid and worried.  I wish words could offer more relief.  I hope the surgeon can get this done quickly for you.  Sending hugs and good wishes.

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  • bluepearl
    bluepearl Member Posts: 961
    edited April 2014

    My friend had this and she has received more chemotherapy and hormonal therapy. They have to figure out IF it is local spread and if it is, if it still carries the ER/PR+ for hormones to work. If it is hormonally positive, maybe be put into menopause and then receive one of the alternative hormones (A.I.'s...there are many). I am hoping all is ok...just a false alarm.......I am very unhappy about your age....I hate this disease even more when it attacks a young person. IF it turns out to be cancer and it is ER+PR+...please continue to take your anti hormonals faithfully.  It is a "form" of chemotherapy to keep any mets from happening. I am sending BIG cyber hugs (((((((((((HUGS)))))))))) You hang in there sweetie!!!

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited April 2014

    Dutchiris : thank you you thoughts and hugs are well received :) 

    Bluepearl: I'm thinking that because my original dx being triple positive that this would be as well. And thank you soooo much for the Hugs :)


    I would have thought doing this again would be easier the second time waiting... nope not easier lol! 


    Michelle

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  • Bexter3
    Bexter3 Member Posts: 61
    edited May 2014

    hope every thing goes well @ appt. I have studied this because I'm in the same boat everything I've read says supra clavical is where it's most likely to return, and it is NOT considered mets, but regional recurrence. Keep hangin tough! We have similar dx and if you've come this far, you'll kick it's a-- again!!

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited May 2014

    My appointment went well, he is concerned with the "hole" in my armpit as well as the enlarged  nodes. After leaving him my armpit got infected and was on IV antibiotics for three days, they took me off and put me oral and infection came back instantly. 

    Surgeon moved my biopsy up to tomorrow!! They will do ultra sound of armpit and biopsy in both supraclavical and aux lymph nodes as he believes the hole in armpit may be a lymph node issue.

    I won't have results till next Tuesday... finding it hard to concentrate on work......

    It is strange they say supra clavicle is one of the places but find it hard to read on people who actually have had it recurrence there...


    Did you have regional recurrence or is it something you are going through now? Just worried.... I'll kick butt no matter what, but didn't really want to have to do it again....


    :) 

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  • KBeee
    KBeee Member Posts: 5,109
    edited May 2014

    No experience with this yet; having other lumps followed up on...just want you to know I am thinking of you.

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  • jgbartlett
    jgbartlett Member Posts: 112
    edited May 2014

    too_young - how did you go with the biopsy??

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited May 2014

    Biopsy was done last week. As usual I kept Dr and nurse laughing. Had male nurse and he asked if I was ok having male nurse and Dr... I was like doesn't bother me... it's not like the are real breast's lol. Husband could hear my nervous reaction of telling jokes and everyone laughing from the waiting room. Although I put on a tough skin I was shaking by the time we were done. 


    I can't concentrate on anything.... I am a researcher and have been on everyday trying to find others with same issue.... I look at my kids and I am so scared to get my results tomorrow... I even thought maybe if I just don't go all will be ok.... My son is 19 and I am his only parent I couldn't break his heart again.... 


    My frustration is they did a fine needle biopsy of the smaller nodes they found by collar bone, I wanted complete excision, I told DH I will absolutely lose it tomorrow if they say "well the FNA is inconclusive..." 


    Big rant nervous, scared, angry, so many emotions.   My husband now was not with me in original dx and the relationship I was in at that time ended just after completing treatments.. I don't want to lose him he is my world.... ugggggg I hate this. :( 


    Trying to stay positive but sooo hard.

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  • bevin
    bevin Member Posts: 1,902
    edited May 2014

    Praying you have benign test results today and no inconclusive notes allowed!

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited May 2014

    Well I am back into the club.... so far they know it's a regional re occurrence, waiting to hear of dates for more scans to see if it has gone further then Supraclavical nodes.


    So angry and scared



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  • belleeast
    belleeast Member Posts: 653
    edited May 2014

    I have been following your post,I am sorry about your biopsy results.

    I have some issues going on with swelling in my sternum/mediastinal area for the last 2 wks. Then last week noticed swelling right under my right collar bone(BC side) . Is this similar to what you had? I don't go back to my onc til Sept for my 6 months check up. I am trying to decide if I should call or not! I hate this crap!!!

    Wishing the best for you and your family. I hope you get good news on your next scans. In my thoughts.

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited May 2014

    From what I have learned if you have a feeling of doubt be pro active and fight for a answer :) just received appointment with oncologist for Friday, I am so happy that I was aggressive n getting a answer.


    Big hugs, let me know what happens :)

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  • jgbartlett
    jgbartlett Member Posts: 112
    edited May 2014

    So sorry to hear that Michelle. Thinking of you. Keep us updated.

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  • belleeast
    belleeast Member Posts: 653
    edited May 2014

    Michelle,thank you,I will. I'm going to call tomorrow. I have grandkids today.

    Good to hear you have an appt with your onc. Wishing you the best. (((Hugs)))

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited May 2014

    Thank you to all :)

    Belleeast please let me know how your call goes :) 

    ((((hugs))))

    Thank you 

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  • belleeast
    belleeast Member Posts: 653
    edited May 2014

    Michelle,thinking of you today,I hope your appt goes well.

    I called,my appt is June 6. They had an opening next Wed but I watch my grandkids that day. I didn't talk to the nurse or dr,just receptionist.

    Let us know how your appt went,when you get a chance.

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited May 2014

    Appointment went well... MO amazing. Because they only did a fine needle biopsy he wants another one done to make sure the cancer is the same, he says 85% it is exactly the same but some times  it can change its hormone receptors. 

    I am scheduled for chemo in 3 weeks and between now and then will have biopsy, PET scan, MRI and blood test. He says we are going aggressive so I am happy about that.


    Belleeast So happy you made a appointment even though it may be nothing it is the price of mind that you took control to find out. I will be thinking of you 

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  • belleeast
    belleeast Member Posts: 653
    edited May 2014

    Michelle,glad to hear your MO appt went well. Happy to hear things are moving quickly. Hope you get good results on scans!

    Thanks,I agree may be nothing but piece of mind is everything. I had my daughter feel it,she said she could feel it but how did I know it wasn't normal for me?? I said once you have had BC,you are very aware of when anything changes! Sometimes too much so,Lol 

    In my thoughts...

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited May 2014

    I don't think there is any "normal" everyone told me that because my lympnode  moved around when I touched it probably wasn't anything serious.... my original tumor had a mind of us own too... moved around and caused sharp pains... all we can do is be aware of any changes and be pro active :)


    :) Michelle 

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014

    Michelle,

    I'm sorry to hear about your reg. rec. I notice you are Her2+. I wanted to pass something along to you.

    In very recent years scientists have figured out that Her2+ patients who have a particular mutation of the PIK3CA gene tend to fail on Herceptin.

    If you have not had a Caris report (done by Caris Life Sciences) on your tumor, please fight to have one done. It will tell you if you have the PIK3CA gene mutation.

    If you DO have it, the way to counteract it is to go on Everolimus at the same time you are on Herceptin. For some reason my onc. tried to explain to me but I don't quite understand, Her2+ patients with this mutation tend to fail on Herceptin UNLESS they are also on Everolimus. This is what my onc. says the science shows. He's very up on the latest science.

    I am just such a patient and I am on Herceptin and Everolius and I have the mutation. I believe about 30% of BC patients do have it.

    Great to hear your onc. is aggressive. This cancer is small and immature and the apoptosis pathways are still open. It can be killed off.

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited May 2014

    TectonicShift

    Thank you for the info. I will be sure to talk to him about this. He sent me home with what regime he predicts I will be on Docetaxel, Herceptin which I had last time and Perjeta which will be new to me.... How ever still in limbo until we do second biopsy and pathology on it.

    PET scan was booked today for June 20th .... Not as quick as I was hoping :(

    Again thank you for the info going to do some research on it  now 

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited August 2014

    Even if you don't get a big enough biopsy of the new nodes (Caris needs a certain size of tissue sample), you should be able to get a sample of your original tumor for testing. The original path lab will still have it.

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  • belleeast
    belleeast Member Posts: 653
    edited June 2014

    Michelle,hope you are doing well. Have you had any other scans,yet? In my thoughts.

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited June 2014

    Belleeast 

    Nothing yet..... Biopsy June 10th, PET June 20th, still waiting for MRI for arm.... 

    I am ok when with people around me..alone I am a wreck scared, frustrated. I don't usually cry but lately everything makes me cry. I went to nephews Confirmation and had to stand at door because the Lord's Prayer made me cry... ? 

    We have decided to move closer to the cancer center and DH family, so June will be filled with appointments and packing. Feel like my life if crumbling in front of me. Moving from beautiful 3500 Sq foot home to a 500 Sq foot suite. Trying to make things easier finacially, while I am off work DH doesn't want me going back until everything is all completed. (High stress job)

    Thank you for the thoughts it definitely lifted my spirits today :)


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  • belleeast
    belleeast Member Posts: 653
    edited June 2014

    Michelle,big ((((Hugs)))) It must be so hard for you and your family to move.It will  be a big adjustment for sure. But having family close by to help will make a world of difference in support. 

    How old are your children? How are they coping with everything?

    Your husband sounds very supportive,that must make you feel good!

    Sounds like you will be very busy over the next month! I hate moving,packing etc. that alone is very stressful!! 

    The emotions you are going thru are very normal and understandable! Once your treatment starts,I think they will settle down! It's ok,to cry,rant,rave,to let it out!

    My heart goes out to you and yours! In my thoughts!

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited June 2014

    Thank you Belleeast

    My son is 19 (had him when I was 15) and my daughter will be 12 on the 11th. My son had a very hard time, very upset with me....my daughter I don't think has quite computed the whole situation. 


    Yes DH is awesome he wasn't with me the first time but is trying very hard to.be strong.


    Xo Hugs to you as well

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited June 2014

    Belleeast let me know how your appointment goes today :) thinking of you

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  • belleeast
    belleeast Member Posts: 653
    edited June 2014

    Michelle,well... MO's nurse practioner didn't seem too concerned about the thickened area,said she couldn't feel or see any difference. But obviously I knew my body better than anyone else. But during the exam,she found a lump in my left breast(non bc side) so they moved my diagnostic mammogram and ultrasound of both breast from July 20th to this Monday! I told her I would feel a lot better if they would do an ultrasound on the thicken area,she said to tell the tech about my concern and they would check that area! They better because I won't leave til they do! Lol 

    How are you doing? In my thoughts...

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  • too_young_momof2
    too_young_momof2 Member Posts: 93
    edited June 2014

    that is great they moved the date up! Waiting game sucks :) 

    I am doing ok, went to GP as I am still struggling with pain and infection in armpit, he believes because of all the antibiotics I have been on that it has caused a yeast infection there..... He thinks it has caused issues with my lymph nodes in that area to not drain properly causing the pain.

    I should try you tactic camp out in office till they start treatment lol

    ((hugs))

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