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Lymph node involvement?

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leftshark
leftshark Member Posts: 7

Has anyone out there had lymph node involvement? I was diagnosed with IDC in October and had a bilateral mastectomy on Nov. 20.

My tumor was 6 cm and I had 9 of 15 lymph nodes involved. I had a CT scan today will have have a bone scan on Monday.

I'm terrified I'm about to die or that it's Stage 4. I'll know when the scans are back.

Has anyone else had this many lymph nodes involved? If so, how are you doing? I'm so scared.

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  • beeline
    beeline Member Posts: 193
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    Hi leftshark, im so sorry you’re here with us. You are at the worst part right now — waiting for all the info to come in. Once you have your results and a plan you will feel better. As you can see from my signature I also had a lot of nodes positive, 10 out of 22. Many, many of us here have. If you go to the stage 3 forum you can read lots of success stories in the 5, 10 and 15 years out threads. Lots of wome with many positive nodes are thriving years later, including one of my favourite posters whose username is “lottanodes”! Hang in there — you’ve got this!

  • Momchichi
    Momchichi Member Posts: 98
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    Hi leftshark,

    Great user name! I remember the shock of the surgeon calling me with the news that 16 of my nodes had cancer, including a couple just bursting with it. And this was after neoadjuvant chemo. I felt so hopeless and scared. I’m only a year and some months out so can’t offer you long term hope (yet!!!) but I could sense the panic in your post and wanted to reach out. I echo beeline’s suggestion to seek out the stage 3 forums, I’ve saved many topics there as my favorites. Best wishes on your scans, hope you get theresults soon and it’s good news!

  • Falconer
    Falconer Member Posts: 801
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    well, my mom had many many positive nodes; not sure how many, but that was almost 25 years ago. She's now 77, grandmother of 6 and still going strong. I hope you feel confident in your doctors- she still praises her oncologist and the technician who found the cancer in the first place. Good luck to you!

  • leftshark
    leftshark Member Posts: 7
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    Thank you all so much!!! My bone and CT scans came back clean. But I'm scared to let my guard down. I'm still totally freaked out that there's still cancer floating around. I should start AC-T chemo in two or three weeks before 34 radiation treatments.

    I'm super confused about the stage because my oncologist wrote 1B on my chart but told be I was Stage 3. 🤪

    I am so glad there are so many Stage 3 and lymph node success stories here.


    (And I went with left shark because my left boob failed me, just like the left shark failed Katy Perry in the Super Bowl halftime show. 😂)

  • pebblesv
    pebblesv Member Posts: 486
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    Hi leftshark - yes, I have (or had) cancer in 2 sentinel nodes, had a good cry when I learned of that, and am going through treatment right now and so far doing fine, and actually pretty upbeat now that I have a plan of action. Honestly the hardest part for me was waiting for the results of the CT scan and bone scan, and it was a huge relief when they came back clean - I'm so glad they've come back clean for you too! I took every silver lining I could see after the positive lymph nodes, and clean CT scans and bone scans are a huge silver lining.

    Mine was also a confusing stage. The pathologists write mine down as stage 1B because my tumor was 1.7cm (less than 2cm) and then my surgeon told them to change it to stage 2B because of the lymph nodes! Honestly, all it means is it's early stage. The best thing is that you (a) have a plan of action to conquer this and (b) there are a LOT of success stories out there, on these forums and in general!

    Regarding radiation - I am going through it now and just completed 25 out of 30 sessions, and I'm FINE! My skin has held up really well - I put 100% pure aloe vera gel (from Fruit of the Earth) on in the morning and evening and Miaderm immediately after radiation treatment. Definitely look up Miaderm when it's time for your radiation!

  • Nicnnat3
    Nicnnat3 Member Posts: 9
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    hello, glad your doing well. Well my journey just started. I was DX with idc stage 2b I believe, but my two sentinel lymph nodes were removed and tested positive for idc (a very tiny size. The 3rd node involved was in the axillery area and was negative thank god. My surgery was on 12/18. I now have to go back in for such a tiny piece on 12/31 to get clear margins. I’m not happy about that but hopefully that will be it. My surgeon and I decided to get back in there now. He didn’t think I needed a mastectomy just yet. The whole tumor and 3 nodes were removed but since it did go outside of the breast I now have to have chemo to make sure nothing is floating around. I already knew I need radiation but chemo I’m really scared. I’m doing a Pet scan soon and I’m so nervous. I know as long as the Pet is clear I can focus on the treatment plan they will have for me soon. Do you think there’s actually a high chance they will find It elsewhere? I pray they didn’t. My anxiety is through the roof making it so difficult. I don’t feel right and I don’t know if it’s just from being stressed for the last 2 weeks or is it the cancer?? I’m scared of doing chemo. Was it that bad for you? How long and how often did you get it? Any input you can give me I would appreciate it. Thank you so much
  • anna-33
    anna-33 Member Posts: 108
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    I had 9 positive nodes... Diagnosed two years ago.

  • Nicnnat3
    Nicnnat3 Member Posts: 9
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    sounds like your doing well?

  • Nicnnat3
    Nicnnat3 Member Posts: 9
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    what kind of treatment did you have?

  • anna-33
    anna-33 Member Posts: 108
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    Is it me you are asking? I had 4xEC (epirubicinecyclofosphsmide), 12 taxols, 15 rads, aromasin, zoladex, zometa and Ibrance. I am NED.

  • alicebastable
    alicebastable Member Posts: 1,946
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    Nicnnat3, are you sure you will need chemo? If you're ER+/PR+ Her-, won't you have the oncotype test run to determine that? I think it's three positive nodes or less. I had a re-excision, one positive node, and no chemo due to oncotype of 17.

  • aglaja
    aglaja Member Posts: 4
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    I had 6 positive nodes. I was diagnosed i September.

  • CaliKelly
    CaliKelly Member Posts: 198
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    Hi, I had 8 out of 20 nodes positive AFTER neo adjuvant (before surgery) TAC chemo. Had mastectomy, on my birthday😂!, clean margins, but those pesky positive nodes😉. So, radiation, tamoxifen, now anastrazole , then another,oral, chemo called Xeloda. Reconstruction etc. All that in 2015-2017 . Now , all good😃. 1st chemo, not fun, but not as bad as I expected. Radiation, no big deal for me, I used to go to the gym right after. Xeloda, I got bad hand-foot syndrome, but really only side effect, even though it significantly affected my activities. Now I'm NED* (no evidence of disease) and doing GREAT. You'll find you can do anything you have to do, take it step by step, try to keep to your normal life as much as possible. I send you Hugs and positive thoughts!💜

  • Onlyme64
    Onlyme64 Member Posts: 12
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    Ok, reading these posts making me feel a little better. me had 5 positive and PET Scan. Tomorrow, I am get my results. Of course, I am still nervous. everytime I feel a pain I start freaking.



  • spookiesmom
    spookiesmom Member Posts: 8,178
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    11nodes out 7 years ago. Doing fine. Chemo, surgery, rads.

  • CaliKelly
    CaliKelly Member Posts: 198
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    So normal to be nervous, only time I've ever had antianxiety meds! But only til I got going on treatment. Then you know what to expect and that takes away a lot of anxiety. Just try to keep life as normal as possible, take care of yourself, nutritionally, etc. Food will taste a lot different if you have to have chemo, so good to get good nutrition, so you'll be as strong and healthy as possible for chemo. Good luck, also don't feel bad, freaking out over aches and pains, I think we all do at first! I think generally if a pain lingers more than a couple of weeks, then get it checked. Keep checking in as your treatment progresses💗

  • CharSue1
    CharSue1 Member Posts: 5
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    trust me. I get your confusion, and your panic. You are not alone. “Hope" is what we all need when battling cancer and I would like to spread some to you. 😍

    I had one lymph node positive and I did not do chemo because they took 7 more which were all clear and my oncotype score was 20. It's risky yes, but I do have an amazing product in my corner. It's called modified citrus Pectin (PectaSol-Cand it will make whatever cancer cells left in our body, sillpery. I drink it 3 times a day and that's the plan for life. After 5 years I might decrease to twice a day. It also detoxes your body of heavy metal and is a great source of fiber. I buy the largest powdered form container which is 454grams. I still freak out sometimes, but mind over matter. Stay positive and trust your body🙏🙌

    Best wishes💗

  • CharSue1
    CharSue1 Member Posts: 5
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    trust me. I get your confusion, and your panic. You are not alone. “Hope” is what we all need when battling cancer and I would like to spread some to you. 😍

    I had one lymph node positive and I did not do chemo because they took 7 more which were all clear and my oncotype score was 20. It’s risky yes, but I do have an amazing product in my corner. It’s called modified citrus Pectin (PectaSol-Cand it will make whatever cancer cells left in our body, sillpery. I drink it 3 times a day and that’s the plan for life. After 5 years I might decrease to twice a day. It also detoxes your body of heavy metal and is a great source of fiber. I order it from the only company who has proven data. Econugenics. I buy the largest powdered form container which is 454grams. Trust me. I still freak out sometimes, but mind over matter. Stay positive and trust your body🙏🙌

    Best wishes💗

  • CharSue1
    CharSue1 Member Posts: 5
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    AliceBastable, 😍 I have been looking for someone like you! I too had one node positive and I too had the oncotype test which gave me a score of 20. What I don’t understand and I can’t seem to find anywhere, why when it’s in the lymph node, can you skip chemo? Trust me, best news ever but I’m just curious. I believe in my body and now that I have gotten this warning I have made many changes. I believe I have dodged a bullet and I plan on living a cancer free life style for the rest of my life. Sounds like you are on the same boat. Please share your journey with me:)

    Best wishes

    CharSue

  • footloose
    footloose Member Posts: 25
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    Hello everyone, you all had a bit of digging around in your axilla. Can I ask if anyone had a problem with an axillary cord post op??

    If so , what was done about it and how long did it last?? My arm is so tight and I'm 4 weeks post mastectomy. I have some mobility but can't reach the top shelf in a cupboard, or put my arm straight up b/c it has a cord [palpable] which is now extending through my elbow and halfway down my forearm.

    Any info you can share would be greatly appreciated.

    TY, Strock


  • trishyla
    trishyla Member Posts: 698
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    You need to see a physical therapist for your cording, Strock. Ask your MO or PCP for a referral. Just make sure you find someone who specializes in lymphedema/cording issues. Good luck!

    Trish

  • CaliKelly
    CaliKelly Member Posts: 198
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    Oh yes Struck I second that, I had bad axillary cording, had 20 nodes removed. Stretching is a must!! And will be ongoing, get some Physical therapy, they can give you massages, exercises etc. But I stretched and stretched and got a massage roller up and down my armpit and arm over and over every day, gradually improved. But if I don't stretch for a few days, tightens back up. Also radiation tightened it up again. So get on it ! P.T. first, but do stretches at home too, and get a massage roller, handheld you know, roll it up and down your arm. It'll improve, just work at it😊👌

  • CaliKelly
    CaliKelly Member Posts: 198
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    Oh yes Strock I second that, I had bad axillary cording, had 20 nodes removed. Stretching is a must!! And will be ongoing, get some Physical therapy, they can give you massages, exercises etc. But I stretched and stretched and got a massage roller up and down my armpit and arm over and over every day, gradually improved. But if I don't stretch for a few days, tightens back up. Also radiation tightened it up again. So get on it ! P.T. first, but do stretches at home too, and get a massage roller, handheld you know, roll it up and down your arm. It'll improve, just work at it😊👌

  • footloose
    footloose Member Posts: 25
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    CaliKelly,

    Thanks so much for your response.

    I'll get at the massage rolling right away. When you stretched did you do it past the point of discomfort? 'i want to do as much as I can but don't want to overdo it for fear of tearing something. Sure was scary having it move down my arm.

    Thanks again,

    Strock


  • misha13
    misha13 Member Posts: 71
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    Hi Strock! I had cording as well but my PS told me I had a month to see if I could do it myself before she made me do p/t. She taught me to walk the wall, which yes was uncomfortable, and to stretch and do a deep massage at the same time, which was also uncomfortable! However, it did work and I do not have any more cording.

    It was actually cool when one of the cords snapped! I could feel the snap and then the release of tension! One of those cool but gross things!

    I have done p/t before as well as yoga, so I felt comfortable doing this myself, however, I would recommend you try the professional!

  • rah2464
    rah2464 Member Posts: 1,192
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    Strock I also had cording on my lymph node removal side. And a knowledgeable PT is the way to go. One who is familiar with cording and lymphodema. They will give you exercises but mine also manually stretched my arm to free up motion. And yes, like Misha13, I also had those cords snap. I remember one happened when I was sitting at breakfast, it just released. You could almost hear it break. Didn't hurt actually felt good not to have things "stuck" in there.

  • footloose
    footloose Member Posts: 25
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    Rah2464 and Misha13 - thanks so much for your input. I can tolerate stretching farther than is comfortable, I was just afraid of doing more damage if I did. Like tearing a tendon. My PT was a triple negative, so she knows the ropes.

    I've also found that using a soft ball to roll over the cord seems to help. So glad to know that yours didn't stay forever!

    Hope you're both doing well.

    Strock


  • CaliKelly
    CaliKelly Member Posts: 198
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    I did stretch to discomfort, not pain, but i did it over and over throughout the day, rolling and rolling very firmly . I was actually trying to snap those dang cords, but they just wouldn't!😂. I still do stretches every day, the cording still tightens up if I don't. But I've got full range of motion back, all good😊

  • footloose
    footloose Member Posts: 25
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    CalliKelly, thank you for your input. You mentioned "rolling" - what do you use to roll? Oddly enough I put on a tight ace bandage

    around my chest [b/c I still have drainage] and it seems to have made the cord more comfortable too. Or it's a coincidence.

  • footloose
    footloose Member Posts: 25
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    CaliKelly, You are so right! I had one day of not stretching b/c of attending a function and by that evening they'd tightened up again.

    Nice to know I didn't screw up - thank you. Footloose.