Regional Recurrence

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farmerjo
farmerjo Member Posts: 518
edited February 2017 in Just Diagnosed With a Recurrence or Metastasis

Anyone have a regional recurrence to axillary node/nodes?

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2016

    one of my recurrent tumors was hanging out in the soft tissue near the axillary nodes, but not in the nodes. Are you dealing with an axillary node recurrence?

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    I was just diagnosed with recurrence to lymph node that attached to my chest wall. due for surgery in January. Got worse diagnosis and scared to death. Only way to get tumor out is to amputate my arm due to tumor being entwine in Brachial Plexus. I am so scared.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Yes cancer grew out of lymph node and attached itself to my chest wall to ribs #2-5

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    DIV I am shocked and horrified to read your post! Can't they try radiation first to see if the tumour will shrink? I've never heard of an amputation needed for breast cancer and my heart goes out to you.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    I have a very rare aggressive cancer call Metaplastic spindle cell that grows rapidly. I was on gemzar and carboplatin but tumor continued to grow. surgeon can do arm sparing surgery but that would leave part of tumor behind then hope that radiation and chemo would kill remaining tumor. Being as the chemo wasn't shrinking the tumor I don't think I want to take that chance. Surgeon said that no matter what the arm would be paralyzed.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    Oh sweetie, my heart just breaks for you. You really have no choice do you? I hope someone else here can help you through this. Why not start a new thread mentioning the amputation and hopefully getting some support here. I read your thread because you are newly diagnosed bit didn't expect to read your situation.

    Hugs, sweetie. You are not alone.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Thank you so much! Yes really scaredand not sleeping. See radiologist tomorrow to prep for radiation after surgery and also see oncologist.

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  • farmerjo
    farmerjo Member Posts: 518
    edited December 2016

    Hi KBeee -

    I chatted with you a while back, when I first found out about my recurrence. I have since transferred my care to another facility (long story) and I'm very happy. The consensus is this is a false-negative sentinel node biopsy, meaning it was there all along, so I really should have had chemo the first time. Some physicians see it as a recurrence. I wish I knew because the prognosis is different between the two. Sigh.

    With this change of events, I had a complete ALND - only the one node was positive but it was large at 2cm. Thankfully it was contained. I will not be getting rads.

    I was trying to see if there are other women in this predicament.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    Okay now, I'm confused why wouldn't they do rads for you? I thought any time a node is involved it's automatic rads. I might be wrong as I only have my own recurrence that I'm sure of....

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  • DiV
    DiV Member Posts: 231
    edited January 2017

    Barbe1958 and Kbeee thanks for your support and well wishes! I start chemo and radiation tomorrow. Treatment will be all day. Going to be a long day. My mom, dad and boyfriend will be going with me. Going to take cards and play rummy to pass the time. Hope everyone had a Happy New Year. Wish us all better health in this new year!

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  • amarantha
    amarantha Member Posts: 457
    edited January 2017

    Dear Div, I sure am thinking of you. I really hope the chemo and rads will do some radical healing for you. Do I understand it is combined ? I was treated that way for my IBC last time - (even though grueling, I was happy to know they were doing the works) - rooting for you so hard.

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2017

    Hoping you tolerate the chemo and rads well. Hoping the side effects are minimal and the cancer killing is maximum.


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  • farmerjo
    farmerjo Member Posts: 518
    edited January 2017

    Barbe1958 -

    The tumor board met and decided I did not need radiation. Maybe because I had a complete ALND? I do know I have to avoid ionizing radiation with the ATM mutation I have.

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2017

    That makes sense. What's their plan moving forward

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  • Sopravvissuta818
    Sopravvissuta818 Member Posts: 11
    edited January 2017

    Hello! I was also diagnosed with a "loco regional" recurrence in May of 2016 after an initial dx of IDC/lumpectomy, with no nodal involvement in August of 2014. I too believe the cancer was in the nodes despite a negative sentinel node biopsy. Since I've had an axillary node dissection removing 21 nodes, 5 were positive and extra capsulated. I completed chemo and radiation of the axillary region. Initially I decided on mx with reconstruction however the plastic surgeon told me I wasn't a candidate due to previous radiation and lack of tissue to use from other parts of my body. Three Drs told me there was no disease in my breast so I opted to keep it and do the ALND. I just started on anastozole (tamoxofin failed me) and am feeling some of the side effects, but I can deal with them! I try every day to move forward with a positive attitude, but the fear and hypochondria come lurking back every few days or so. What kind of follow up testing is your mo doing for you? Mine doesnt recommend any kind of blood test or screening unless there are symptoms. Any advice is welcome. Thanks in advance!

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2017

    I also had a locoregional recurrence. I get no imaging without symptoms. You will have mammograms and/or ultrasounds or MRIs though. The lack of imaging is standard, but it is scary

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  • farmerjo
    farmerjo Member Posts: 518
    edited January 2017

    KBee -

    I have had two second opinions, and the consensus is a false-negative sentinel node biopsy...cancer there all along. So that's three institutions on the same page.

    My chemo was stopped three treatments short due to neuropathy.

    At my original diagnosis, I was a candidate for the oncotype since I had a negative node. The results of the oncotype and SNB allowed me to skip chemo and rads. (The oncotype results were false since I had a positive node after all). There are three reasons for a FNSNB: improper administration of the dye, misread by pathologist, missed by surgeon. The unfortunate consequences of FNSNB are under treatment. I should have had rads and chemo in 2015. So of course, 2016 was a new year so I incurred another 3k in medical expenses. I could go on and on. I discovered my 2cm node myself, in the shower. Oddly, no one ever checked my axilla nodes during follow-up appts after my initial surgery. I have lawyers banging on my door.

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  • DiV
    DiV Member Posts: 231
    edited January 2017

    Hi ladies, an update on my treatment. Started chemo and radiation January 9. Completed 1 cycle of chemo and i'm on 14/25 rads. Start chemo again on Feburary 6th. Things are going well. Only bad side effect i have is a really sore throat from radiation. Saw my oncologist and had exam. Oncologist said tumor feels like it's shrunk from an apple to almost half the size. Touched base with radiologist my skin looks great don't even have any redness yet. Radiologist stays in contact with my orthopedic, thoracic and plastic surgeons. I will need another petscan prior to surgery to make sure cancer hasn't spread. My surgery will be in the middle of March. Been really busy getting signed up for social security disability which has been approved and signing up for Medicaid. Still waiting to hear about Medicaid. My social worker wanted me to get all this accomplished before surgery.

    Thanks to all you ladies for your well wishes and prayers!

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  • 7of9
    7of9 Member Posts: 833
    edited January 2017

    Another regional recurrence survivor here. Just hit one year. 10/16 nodes positive. False negative on 2 nodes first time around after neoadjunct dose dense and mastectomy. I could kick someone for not doing rads first time or taking ovaries. Had an ALND and full hysterectomy last Jan. Admittedly the rad effects kicked in hard after six months. I'm not used to being stiff every damn day. But I'm here and after complaining I got an US in October - clear - and just had a CAT Monday, clear. I needed to be certain I wasn't sitting on another recurrence though one round of clean scans aren't guarantee of anything with this 3 headed monster. Though it showed I had 3 broken ribs at some point last year (I guess I have a high tolerance for pain). Given tougher situations listed above, God bless you all and we'll all press on together. We ain't dead yet sisters, not by a long shot.

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2017

    Though my MO does not schedule routine scans, if I have any symptoms at all, he addresses them immediately and does not hesitate to order one. I have not had reason to haev a PET scan or anything, but I do get a lot of lumps, so I have had a few MRIs.

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  • farmerjo
    farmerjo Member Posts: 518
    edited January 2017

    I also wanted to add to my post above - my AI failed me also...I was taking letrozole at the time.

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  • Poodlelover
    Poodlelover Member Posts: 26
    edited February 2017

    Glad to find this group. Found out yesterday that my lymph node biopsy was positive. I had an ultrasound 6 months ago due to a reactive node. Recheck last week and that node is stable but they saw a different suspicious node which is cancerous. I was 0/8 nodes in March. Not sure if this this is a recurrance or false negative on the SLNB - how can they tell? I have surgery scheduled for Wed and then heal & start radiation. Nervous about all of it

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2017

    Poodlelover - that stinks :( Good luck with your surgery tomorrow.

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  • starwoman
    starwoman Member Posts: 73
    edited February 2017

    Sorry you're going through this Poodlelover. I was told by the surgeon before SNB that cancer can sometimes skip the sentinel nodes.


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  • KBeee
    KBeee Member Posts: 5,109
    edited February 2017

    Poodlelover, SNB is 90-95% effective, but that means they do sometimes miss some. Sorry you are dealing with this. Hoping you have plan in place soon for treatment.

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  • Butterfly66
    Butterfly66 Member Posts: 21
    edited February 2017

    hi 7of9, hi kbee

    I was diagnosed with a loco- regional recurrence last November 2016. I had my first Breast cancer in 2008, er+, pr+ Her2 - 2cm Tumor on my left Breast and DCIS stg 0 on my right breast. I had a double mastectomy, did chemo ACT, radiation, 2 yrs tamoxifen and 51/2 yrs Femera. I also had a oorophectomy.

    The recurrence was on my right axilla. 16/36 nodes. Imagine no palpable lump, no sign of anything. It was just a routine yearly ultra sound when it was detected and even then the radiologist thought it was a swollen lymph node due to a virus.

    Thank god I have a lot of nodes. everyone has different amounts of nodes. I did Carbo/taxol, radiation and I'm now back on tamoxifen although the pathology changed, this one was triple negative. That's why some of the docs think it was always there. 8 years ago They didn't do a SLN on the right side.

    Anyway all is good now. I'm Just nervous about my pet scan on feb 27. I Feel fine physically. God I hate this anxiety.

    I'm really happy to have found this board.

    Thank you

    Butterfly66


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  • DiV
    DiV Member Posts: 231
    edited February 2017

    Butterfly66 hi! So sorry you have to go through this again. Welcome there is a wealth of information here and experiences other women and men have gone through with their treatment.

    I just finished (Feburary 10) chemo and radiation at the same time. It really did a number on my throat. Have had the worst sore throat of my life. Swallowing was like eating glass. I could only eat creamed soups and mashed potatoes and gravy or noodles with gravy. I was finally able to eat yesterday. I still have no voice it's just a whisper. Now it's recovery time until petscan march 14 and mri march 16. If scans still show tumor is contained i will have surgery (arm amputation) march 20.

    Praying for everyone. Praying for a cure too...

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  • Butterfly66
    Butterfly66 Member Posts: 21
    edited February 2017

    hi Div

    Thanks for your reply. I'm sending you positive energy,

    Yessss a cure, I'm sure it's not far.

    Keep well

    Xx

    Butterfly66



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