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Clavicle lymph nodes and axilla after DCIS 9 years ago

LeeLeeLynn Member Posts: 5

Back in October I felt a lump above my clavicle, after a biopsy and MRI I was told DCIS from 9 years ago has spread to Supraclavicular and axilla and pec region. There was a 1 % of this happening after the lumpectomy and 30 rounds of radiation 9 years ago. I just finished 4 rounds of Adriamycin and 4 rounds of Taxol. The areas shrunk 50% in the armpit and 75% in the clavicle.( I am ER +, PR + and HER 2 negative).

The next step being recommended is complete axilla removal by breast surgeon and ENT surgeon doing surgery on clavicle region which he feels confident doing. The clavicle surgery is avoided by half the doctors around the world from what I’ve researched and heard, due to the complicated area.

After (possible) surgery would come 6 weeks of radiation to axillla, pec and clavicle regions and 10 years of AI pills and CDK? pills.

I read 2 Chinese studies that said surgery isn’t as successful for patients with my hormone status, WHY would that be? (I’m ER+, PR+, HER2 negative.

Any guidance would be greatly appreciated, thank-you.


  • obsolete
    obsolete Member Posts: 333

    Hello LeeLee, I'm bumping your important topic. I'm really sorry you're finding yourself in the unfortunate 1%, even though I don't have direct answers. Hopefully someone will be along to offer better advice, but below is some food for thought. Hugs & best wishes!

    Does Inflammation Cause Breast Cancer? Can Stress Management Stop The Spread?

    Social Well-being Is Associated With Less Pro-inflammatory And Pro-metastatic Leukocyte Gene Expression In Women After Surgery For Breast Cancer

    Cancer Res Treat. 2017 Aug.

    Antioxidant, Inflammation Levels May Reveal New Diagnostic Tool For Breast Cancer

    Cancer Surgery: How May Anesthesia Influence Outcome?

    Yoga and Breast Cancer

  • sksawyer
    sksawyer Member Posts: 4

    Hello Leeleelyn. I am new to this site, and have a similar situation to yours. I am 6 years out from invasive ductal carcinoma. I was triple positive in 2016, and had 6 rounds of chemo and then double mastectomy (my choice vs lumpectomy). Stage 2, small tumor and no lymph node involvement. On May 30 I noticed enlarged lymph nodes in clavicle area and CT indicated slightly enlarged nodes in chest area. Biopsies revealed cancer recurrence but now ER slightly positive, Progesterone negative, and HER2-low. Low burden of disease with no symptoms other than palpable nodes in clavicle area. My doctors have recommended 2 treatment options: 1. 12 rounds taxol; 2. faslodex monthly with CDK4/6 inhibitor (pill) like ribociclib or abemaciclib. There is a clinical trial DESTINY08 that I might qualify for. This trial combines T-DXd with various other anti cancer agents.

    I am posting here to see if anyone has had any experience with these treatment options and can offer any information to me. It is a very hard decision as to which treatment I should start with and any guidance is appreciated Thank you.

  • aprilgirl1
    aprilgirl1 Member Posts: 743

    Sksawyer - I had a distant lymph node recurrence 11 years after stage I small tumor no lymph node breast cancer (chemo, rads, surgery and 7 years of femara with the stage 1 dx in 2008). My cancer did not return to the actual breast. Since I was stage 1 originally, standard of care follow up was mammogram and chest xray for the first few years and then only mammograms (blood work too but my tumor markers have NEVER been elevated, even with the distant recurrence). Mamograms have been completely clear for 11 years (so frustrating that I was never given add'l surveillance, even every 3 years or something).

    My recurrence was in my superclavical as well as lymph nodes deeper in my chest area (medistinal, hilar, and many more) but no spread to bones or organs per scans. The distant spread makes my case stage IV. My biopsy of the recurrence was the same as my original which is highly er+, pr+ and her2-. I have responded really well to Ibrance/fulvestrant and within 6 -8 months had no evidence of disease on scans and thankfully that has continued.

    Question for you - have you had add'l petscans to make sure nothing lights up elsewhere? After treatment in 2016 did you take an A/I? I am assuming you did since they are discussing faslodex. How long did you take the A/I? Ibrance/fulvsetrant have been easy for me to tolerate. I am not a doctor but in your case since your er is only slightly positive now and you are pr- and her2 low, I would have concerns with the 2nd choice since it is for hormone positive patients and is it enough for a patient that is slightly er+, pr-? I would probably be looking to target the her2low part if you can. I am not well versed in clinical trials. What phase would you be in of the Destiny08 ? I haven't experienced Taxol (yet). I did CMF with my stage I cancer in 2008. It is possible that Ibrance and fulvestrant work well with slightly er+ breast cancer but I don't know enough about that to advise you. You have come to the right place as far as looking for help! Hopefully, some of our sisters with more experience with her2 low will chime in!

  • sksawyer
    sksawyer Member Posts: 4

    Hi aprilgirl1,

    I had full body scan brain MRI, and bone scan, and thankfully all were clear. I was on tamoxifen for 5 years and then switched to Anastrozole a year ago, with plans to only take for 2 years. The DESTINY08 trial is Stage 1, and I would be the only participant in the study locally (UNC Lineberger Comprehensive Cancer Center). This would be the first trial with humans. After learning more about the trial this morning, I am not leaning towards participating, for a number of reasons. I was told I could potentially participate, if I qualified, at a later time if there were modules open. I had TCHP in 2016 with additional herceptin infusions for an entire year. The taxol would be given weekly - 3 weeks on, 1 week off, for 12 doses. ENTHERTU has been mentioned also to be given once every 3 weeks, but I need to clarify if that would be along with either of the other 2 treatment options.

    Thank you for your response and the information you shared. Very helpful.

  • LeeLeeLynn
    LeeLeeLynn Member Posts: 5

    Ladies, I am sorry you have to deal with this again. I made the decision to have surgery back in May. I made out well, the neck incision is barely noticeable (5 of 8 lymph nodes were cancerous In clavicle region). In pec and armpit area (4 of 4 in each area cancerous). I am 2/3 through radiation (30 treatments). Then I will begin 10 years of Letrozole and 2 years of Verzenio. I am sorry I could not be more helpful, but if you do decide to take the taxol chemo, definitely use ice on your feet and hands to try to prevent neuropathy. I did but still got mild neuropathy in right fingertips and right foot. Most cases supposedly resolve in 3-5 months, it’s been 4 for me and it’s not any better despite taking vitamin b6 and b12.

    I wish you both good-luck with your decisions

  • stina
    stina Member Posts: 5

    Hello, it's been six years since my first diagnosis I was ER+, PR+ and HER2-. Three auxiliary lymph nodes were involved. One with 22mm visual metastasis. I had double mastectomy. I now have an enlarged Supraclavicular lymph node on the same side as my BC. I had ultrasound and my Dr. wants a biopsy. I am waiting to be scheduled for this. One surgeon was going to book me out 6 weeks! I said no way. I need to have this done now. I am literally waiting for the phone to ring to get my appointment.... hate the waiting! And the wondering.

  • LeeLeeLynn
    LeeLeeLynn Member Posts: 5

    hello Stina,

    I hope you get an appointment very soon. I finished radiation a month ago and the radiation burns are completely gone. I hope this is not cancerous but if it is, definitely see an ENT surgeon not a breast surgeon. I can’t even see my neck incision from my May 10 surgery.


  • stina
    stina Member Posts: 5

    Thank you. I have a PET Scan scheduled. The FNA (fine needle aspiration) is in 2 weeks. Still just a waiting game.

  • princessofmeh
    princessofmeh Member Posts: 74

    Original dx in 2015, weakly pr+, stage IIIb. A/C + Taxol, BMX (15/15 lymph nodes pos) followed by rads. Recurrence to a single supraclavicular lymph node only in 2019 (approx. 3.5 years out), triple neg. Carb/Taxotere with complete path response halfway through treatment. No rads because that area was hit in 2015. Scar tissue but no surgery to remove, unless evidence of active cancer, due to the risks. I'm 4 years out from my first clear scan this month and will be 4 years out from the end of treatment in August.

    Just had to post because I've never heard of anyone like me, with a (regional) supraclavicular recurrence without distant mets. I've had 2 oncos so far, with a 3rd coming later this summer, and thus far, none have ever seen a patient like me. The ENT specialist I was sent to, to evaluate me for surgery, had a patient similar to me that required surgery (no complete response), but nobody else.

    I'm kinda astonished to find there are actually people like (or similar to) me kicking around, honestly. Here, I'm a medical oddity, LOL.

  • sanantonio
    sanantonio Member Posts: 1

    Originally diagnosed dcis with 4mm invasive ductal carcinoma HR+ (ER>95%) in 2009. Age 39. Bilateral mastectomy and 7 years of Tamoxifen. Surgery and reconstruction with expanders and implants at MD Anderson in Houston.

    Complete hysterectomy in 2012. 14 years later diagnosed with metastasis to ribs, spine, pelvis, and skull. Such a shock! I’ve been on Verzenio and Letrozole since April and my Signatera ctDNA numbers have dropped from 735 in April to 212in May to 83 in June. Headed in the right direction.

    Definitely struggling with fear. I’m hoping to be able to enjoy life again without all the worry. No side effects from medications.

  • moderators
    moderators Posts: 7,688

    @sanantonio, we're sorry to hear about your progression, but glad to hear that treatment is working! If you are interested, we have virtual (Zoom) meetups happening every week if you want to meet other Stage IV members who are in similar shoes. You can register here: MBC Zoom Meetups: Register Here to Share Face-to-Face.

    Hope this helps! Let us know if there is anything else we can assist you with!

    The Mods