Supraclavicular Mets - Are you like me?

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dtown
dtown Member Posts: 6
edited March 2019 in Just Diagnosed With a Recurrence or Metastasis

I am waiting to hear the official, official word from my doctor but I have been told a supraclavicular node (that I found) i had biopsied tested positive for breast cancer. I do not have the full report but what does that really matter today - I have cancer for the 3rd time since Feb. 2012, bottom line. I will have a PET/CT next week to determine if the cancer is elsewhere, almost surely it is, based on some back pain I can't shake.

I am looking for other women who started with an ER/PR+ HER2- IDC that metastasized to their supraclavicular node. I am a young mother and just really need to hear from women who are surviving with this because right now all I can think about is how little time is left and how terrible it might be.

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited June 2015

    Hi,

    I am really sorry to read that you have to go through this yet again!!! 

    I don't have your experience but I wanted to let you know that today I read on Fight like a girl (facebook page) the story of a woman that started this journey very young (in her early 30s) and it came back but she survived it for over 30+ years and is a grandmother now. If you have a FB account you can check it out.

    I hope some of the other ladies chime in but I wanted to let you know that I am thinking of you and pray that you live a long life to see your kids grow up. 

    Big hugs!!!

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  • dtown
    dtown Member Posts: 6
    edited June 2015

    Thank you so much Lolis, I will absolutely check it out. Best wishes, Danya

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited June 2015

    I have it on my superclavical too. Had a/c chemo and rads to that area.

    My lower back pain isn't cancer. Just muscles that are weak from chemo. PT did wonders.

    The fear can get to you, especially in the middle of the night. Just keep making memories with your little ones.

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  • theziz
    theziz Member Posts: 159
    edited July 2015

    Hang in there dtown you will also fight like a girl.

    I'm 38 with 2 young kids and the cancer came back on my lower neck less than a year after I finished treatment.

    On a target therapy now and still fighting

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  • dtown
    dtown Member Posts: 6
    edited July 2015

    Thank you for your encouragement theziz - I received my PET/CT back and it's in supraclavicle, subpectoral and high axilla (which I thought were all gone the second time around).

    Several breast surgeons are trying to figure out if they are operable at all or not. Did they remove yours? How is Ibrance treating you so far? That is one of the targeted therapies my onc suggested we will likely use after we figure out how to try and kill the existing disease.

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  • dtown
    dtown Member Posts: 6
    edited July 2015

    Thank you Zillsnot4me - was your supraclavicle node part of your original diagnosis?

    I've pretty much had everything in the book in terms of surgeries and AC/T chemo, radiation, complete hysterectomy, targeted therapy, hormone therapy, the list goes on.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited July 2015

    Yes it was part of my original diagnosis and treatment. They couldn't get the tumor out because it was wrapped around something. Chemo brain. Sorry. It's got a marker on it and is felt every appt and looked at every scan.

    I'm sorry it's back. Are you sure it's still hormone positive?

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  • dtown
    dtown Member Posts: 6
    edited July 2015

    I am. 95%ER, 23%PR, still HER2-. Met with the surgeon today and she is very confident we can remove them so we are going for it. Not so confident it will be of any help to me prognosis wise but doing it anyway because I'm so young.

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2018

    dtown, I have a friend locally who just finished chemo, had her surgery, and is in the middle of rads. She had IDC in axillary pectoral, and supraclavicular nodes as well. She had PCR from chemo!!! Surgery went well and hopefully rads will take care of stragglers. I cannot obviously say how things are long term sicne she's still in treatment, but so far, all is well.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited August 2015

    I have a recurrence behind my sternum and supraclavicular area.....had 10 months of Kadcyla...went into remission. Now it is back in original sites plus level 5 cervical area in my neck-SUV is 17.

    Now back on Kadcyla. Praying that it works again. Surgery is not an option since I need systemic treatment.

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  • babs6287
    babs6287 Member Posts: 2,021
    edited September 2015

    I originally was diagnosed ER PR + hernu2- with IDc in left breast and16/26 positive nodes. My Ca came back after 2.5 years in supraclavicular node and inframammary nodes. They excised the supra clavicular node for testing purposes ( gnomes) but the ca was too small to test. I'm on Ibrance/ letrozole now. This week I go for my second round of scans and hoping for the best( last round was inconclusive )

    Praying for everyone dealing with this!!!

    Babs

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  • Daczahow
    Daczahow Member Posts: 45
    edited June 2017

    I was originally diagnosed in January 2015 staged as 2b at 35 I had a lumpectomy with zero auxiliary node involvement underwent chemo, radiation and a hysterectomy due the estrogen positive path results I was just about to finish up my one year of herceptin when I had a reoccurrence in April 2016. At that time it spread to the supraclavicular nodes. Staging was changed to 3C and I underwent chemo and radiation once again!! Ugh! All of my recent scans have been clear! But I have been struggling with this current staging! I feel overwhelmed with the idea of it being so close to stage 4 !!! Of course nights are the hardest and this is certainly one of those nights considering it is nearly 4 AM! Sorry to be so matter-of-fact and glum! I know logically that there is every reason to be hopeful!!

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  • deemendoza
    deemendoza Member Posts: 84
    edited June 2017

    Hi Ladies,

    I'm in the middle of rads 6 of 28 after recurrence 35 of 38 lymph nodes tested positive for cancer even after 4 round of a/c and 4 round of taxol.

    Can I ask what made you check your supraclavicular area? and what did you experience? I ask because yesterday as I was done with rads I went in to get dressed and lather up on lotion and I felt a small very movable lump right above my collar bone. I guess I fidged with it too much because the base of the left side of my neck got a bit puffy. I met with my RO today and I will be discussing this, just curious what everyone experience.


    Thanks Dee


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  • marijen
    marijen Member Posts: 3,731
    edited July 2017

    My BS said I wouldn't be able to feel my supraclavicle nodes if I was worried about cancer there

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  • Daczahow
    Daczahow Member Posts: 45
    edited August 2017

    I felt mine ... I was laying in bed and just happened to scratch an itch just above my right collarbone and it felt puffy and the i felt the lump

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2017

    I have a small lump below the collar bone MO said it feels like it's on the chest wall but they said not to worry because it's movable. It feels like glass grinding into me when I press on it. Did any of you have movable lumps that were cancerous?

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited August 2017

    Yes, my breast lump, near the nipple was movable when I first found it. Just another misconception. Later, I read that early breast cancer lumps can be movable. It also caused pain eventually, another misconception.

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  • kcat2013
    kcat2013 Member Posts: 391
    edited August 2017

    Lovinggrouches, I had a movable lump on my chest wall just below my collar bone right near the center of my chest. Both my MO and my BS examined it and felt it most likely was not something concerning but also felt it was prudent to rule out malignancy. I had an ultrasound, MRI and eventually minor surgery to remove that stupid lump because the imaging wasn't terribly helpful and it was determined that removing it was best way to get definitive pathology. It was a lipoma. Can you have your BS look at it and give their opinion?

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2017

    Thanks all for the replies! I meet with MO again next month and will have him check again. I did think about going to breast surgeon also. I haven't seen him since a few months after my surgery last year. Hope you are all well!!

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  • Daczahow
    Daczahow Member Posts: 45
    edited July 2018

    I know this is a topic that hasn’t been touch in over a year but I just wanted to say that my lump/Knot that was just above the collarbone was moveable !!

    I couldn’t move it much however... I messed with it so much it made it quite sore !!!!

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    Daczahow

    Hi. Did you have multiple lymph nodes positive ? How were they treated? Was it considered a reoccurence?

    After 20 years no evidence of disease I recently discovered a 40 x 30 mm lump below my collarbone that was biopsied on July 13 and turned out to be positive. Now I'm waiting to get into my initial appointment at a Cancer Center. I'm scared.

    How are you doing now?

    take care,

    Amica

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  • Daczahow
    Daczahow Member Posts: 45
    edited July 2018

    Amica it was multiple nodes positive ... and it was considered inoperable because they were all clustered around tendons... I had radiation directed to the area and I also went through chemo again (4 rounds of dose dense A/C followed by 12 weekly taxol) .... knocked it out ! So far so good !! Although I am not technically considered stage 4 I find it very hard to say that I beat it ! So I will simple say since NED since August 2016!!

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    Daczahow

    thank you for taking the time to reply!

    Sorry I have so many questions, but how did they determine that there were multiple positive lymph nodes? because I thought they usually have to surgically remove and biopsy them to discover that. Did they do multiple needle biopsies? or Were they found with an imaging technique? Also, did they repeat the same chemo you had before because I thought the same type of chemo could not be delivered a second time?

    I am so glad for you that you are NED !!!

    Amica

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  • Daczahow
    Daczahow Member Posts: 45
    edited July 2018

    I know they removed multiple nodes I am not sure if they told me how many total but I know at least 9 of the removed lymphnodes were positive Er+Pr- like my original diagnosis except it was her2 negative this time which my MO thought was odd ... I also had a pet scan and that area above my collarbone lit up like a Christmas tree! Lol!

    As far as asking questions no worries !!! I have always had a terrible memory!! And that was before chemo!!! Lol!!

    But ask away !!!I will do my best to answer!!

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    So they did remove multiple nodes and biopsied them to determine if they were positive, but others were inoperable and were treated with radiation?

    And, you mean that on a PET scan, positive lymph nodes show up? or light up?

    I hope you are recovering well from your recent mastectomies. That is a lot to go through. Were prophylactic mastectomies recommended because of the positive lymph nodes?

    thank you so much & HUGS

    Amica

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  • Daczahow
    Daczahow Member Posts: 45
    edited July 2018

    I felt the lump and told my MO about it at my normal herceptin infusion appointment. She sent me for a PET/CT scan and the scan showed a lot of activity in the supraclavicular lymph nodes. I then had a surgical biopsy ... the surgeon said she removed as many nodes as she could.

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    Daczahow,

    I see. OK. You've really been through it.

    Thanks. That really helps me understand how things might proceed for me.

    I wanted to have a surgical biopsy once the ultrasound came back as suspicious, but here in Ontario, even though I was fighting mightily for it, they would not do an excisional biopsy, they insisted on a needle core biopsy, which brings images of them punching a hole in the tumor and releasing all those cancer cells all over my body. Oh well. It is what it is.

    take care,

    Amica

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  • Daczahow
    Daczahow Member Posts: 45
    edited July 2018

    I have had a few scares in my right breast over the last few years also the radiation caused the breast tissue to hardened. Which made it very difficult to see clear images on the mammograms ... so after having my7th needle biopsy on my right breast back in April 2018 I decided it was time to explore other options !!!! So had both removed with immediate reconstruction started....unfortunately I developed an infection and both of my tissue expanders had to be removed .... my plastic surgeon is confident that after I heal up for a few months he can complete the reconstruction!! I am just glad that I will never have to have another mammogram again! Silver lining .... I guess!!

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  • Daczahow
    Daczahow Member Posts: 45
    edited July 2018

    oh yes very familiar with the core needle biopsy !!! Ugh

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  • Amica
    Amica Member Posts: 488
    edited July 2018

    Daczahow

    7 needle biopsies, and then mastectomies & infection after reconstruction --OMG, I feel for you. That is so much to go through. And you had the prophylactic ovary removal...I had that too along with hysterectomy. It's like--hey, what more can you guys cut out of my body? lol Biopsies, surgeries, ugh---they're all awful. But that is good news that your plastic surgeon is confident he can complete the reconstruction in a few months, and I wish you safe healing ahead.

    Did you have positive lymph nodes on both sides? << again with the questions! lol so sorry

    Here's to your continued NED!

    warmest regards to my southern sister in survival, (I lived in KY for years)

    Amica


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