High number of positive lymph nodes

ausykaren
ausykaren Member Posts: 58

Can lymph node survivors please chime in here. I had 11 positive nodes,some broken open with cancer and grade 3. After 3.5 years this still really worries me every day. Would love to hear stories of long term survival.


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Comments

  • spookiesmom
    spookiesmom Member Posts: 8,078

    The first time around I had 11 positive nodes. Was stage 3, grade 3. Went a bit over 7 years NED. Found a lump on the other side, 7 positive nodes out. That made me stage 4. Currently on Ibrance/letrozole, doing well. NED. It’s not an automatic death sentence, many of us have progressed and doing well.

    Watch for unusual anything, get checked if you find.

  • ausykaren
    ausykaren Member Posts: 58

    Thanks spookiesmom, were you still taking hormone blockers when you recurred?


  • still-me40
    still-me40 Member Posts: 8

    I had 3/16 positive nodes and the tumor had created its own blood supply so.....not heaps of nodes but it was definitely travelling

    I was diagnosed 2018 so I'm not too far out but am hoping for many more years cancer free. I used to think about recurrence a lot but now I think about all the things I want to do. I don't want to waste any time wondering if/when it comes back, I want to live well x


  • sbelizabeth
    sbelizabeth Member Posts: 954

    This month, September, makes it nine years since I found the signs of inflammatory breast cancer. The sentinel node was so chock-full of cancer it couldn't even take up any of the dye or radioactive tracer. Today, I have to check my signature line to even remember how many nodes were positive!

    It takes time to recover from the whirlwind of treatment, and even more time for the fear and sense of doom to fade into normalcy.

  • spookiesmom
    spookiesmom Member Posts: 8,078

    Ausy

    Sent a pm.

  • sugarplum
    sugarplum Member Posts: 69

    Hi Karen - you know me! - just chiming in here to give others hope as well. 10 positive nodes, extracapsular extension and dermal involvement - but my surgeon did a great job cleaning up the mess. Looking back now from the vantage point of 14 years, I still don't ever want to get cocky - but I've obviously been fortunate to squeeze so many more years of life out of such a dismal diagnosis.

    Hugs & hope to us all - Julie

  • TectonicShift
    TectonicShift Member Posts: 102

    Same as you. Almost nine years ago, I had 11 positive nodes, some broken open with cancer (the largest node over 2 cm), vascular invasion, etc. My 6 cm of breast tumor was not palpable at all - it was more like a spider web. I have since had my blood test positive for cancer cells - the number of cells varies from test to test. So far I'm still alive. I assume it will come back - if it hasn't already. But also I know there are many treatments that may be able to keep it at bay for a good long while if / when that happens. I try to be realistic and face facts. It is very hard to live with the knowledge though, even nine years out. Life has never been the same and never will be. It is worse in some ways, better in others. I have both less peace and more peace at the same time. I am certainly wiser.

  • lucca06
    lucca06 Member Posts: 17

    I had 9 positive out of 18 after chemo. A nurse told me it was probably a lot more but it showed the chemo has worked as it was only 9 now?!! Apparently she thought she was being reassuring, clearly I freaked out! That was 9 years ago it will be 10 years since diagnosis next March for me. The only way I could cope with the fear was to just focus on each day as it came and went and tell myself that I was healthy today. No fear really now but I still do that everyday. Take care it gets easier.

  • lillyishere
    lillyishere Member Posts: 747

    Lucca, have you been using anti-hormonal meds?

    Spookiesmom, I have the same question if the recurrence have happen while in anti-hormonal meds.

    Thank you for sharing your stories. Gives the rest of us hope :)

  • spookiesmom
    spookiesmom Member Posts: 8,078

    I did 4 years on aramidex, severe joint pain made me quit. Did about 7 months on tamoxifen, same severe pain. Had about 2 years NED. So no, didn’t happen while taking it.

    Found a lump on the other side last year in the nodes. 7 out. Currently on letrozole and ibrance. I am tolerating the letrozole much better, so far. MO told me I could stop ibrance, stay on letrozole. He said I could reoccur on this.

    I take my pills, and move on with my day. I don’t worry about what if’s. I refuse to worry about it, or let cancer rob me of enjoying my life.

  • lucca06
    lucca06 Member Posts: 17

    Lilywashere - I took Tamoxifen to start with then had a oophrectomy 18 months after diagnosis due to a scare. Since then I have taken Exemestane (Aromasin)

    The stories here gave me hope at the darkest of times, so glad to be able to do that for others.

  • yatcomw
    yatcomw Member Posts: 53

    At least 17 positive nodes .....cancer spilling out of the nodes.....

    Out almost 16 1/2 years now......life is good.;)))))))


    Jacqueline

  • faithfulheart
    faithfulheart Member Posts: 25

    Hi there !!! How is everyone it’s been so long! Just passed 11 years in sept ... big 5cm tumor !! 10 positive nodes out of 17!! Was on tamoxifen for 8 and a half years ! Took a six month break .. went on Femara .. been off a couple months now of the femara it was making me depressed .... anyone want to advise me to stay on it!! I love you Karen !!! It will get easier !! We have great treatments way more then we had when I was dx.. there is lots of hope !! We have to live !! Fear is such a robber of life !! You are all my hero’s !! This journey is hard !! Some days too hard and others not at all...

    God bless all the beautiful warriors !!!!

    Love to you all...

    Stay strong!!!?

  • lillyishere
    lillyishere Member Posts: 747

    Thank you so much for sharing your experiences.

    To many other happy years to come.

    wine-glass-cheers - The Three Tomatoes

  • peregrinelady
    peregrinelady Member Posts: 413

    Faithful, magnesium and vit D helped me combat depression caused by these drugs. I wish you many more healthyyears!

  • karen1956
    karen1956 Member Posts: 4,291

    8/12 nodes during surgery but I had nodes tested during my second biopsy. I'm 14 years 9 months since Dx. Quit AI's in 2010 after enduring side effects for 3 1/2 years. As of my 6 month check last month I"m still dancing with NED.

  • jennaru123
    jennaru123 Member Posts: 1

    Thank you all for posting your positive stories. I'm a reader who needs them! I just finished radiation (after chemo, which happened after surgery) and the fears of recurrence is high. I had 43/43 nodes. Yup, 43/43. The drop down list when picking the number of nodes on this site doesn't even go that high (only goes to 40). I was diagnosed in my third trimester of pregnancy so we had to wait until it was safe to induce then do surgery and chemo. My oncologist says I have around a 20% lifetime risk of recurrence after surgery, chemo and hormone therapy (goserelin and letrozole) which should be lowered since I just found out my benefits cover ribociclib which I'll be starting this week along with letrozole. I have a 7 month old girl and a 2.5 year old girl. I need to live another few decades for them!

  • lkc
    lkc Member Posts: 178

    Hi Jennaru,

    I am another stage IIICer, now in my 16 year and well.

    the amount of nodes we all have varies from person to person. Over 40 is alot to have removed, but your surgeon did a great job in getting them all out.

    there have been so many advances in BC treatment over these years especially with immunotherapy resulting in dramatically reduced recurrence rates.

    Much much reason to have lots of hope. Wishing you well.



  • 7of9
    7of9 Member Posts: 472

    I am 9 yrs this spring. First time 0/2 nodes, 3 yrs later 10/14. Not sure how I missed this thread earlier. Recurred on Tamoxifen then had complete hysterectomy, rads, chemo, Arimidex ever since. Zometa 2x yr for 5 yrs. I swear its back but nothing conclusive so still rollin....just keep rolling. Back aches, lymphedema, (probably) stress eye strain, tinnitus from coming off of Attivan and heaven knows what. Working on the hiking merit badge with my 11 yr old and husband. He was 2 when diagnosed ( kid, not husband 😒 lol). We did the 5 mile one a few weeks ago, today another 4.2 mile hike to prep for our 10 miler next week! 2 more 10s, a 15 and a 20. Some women on here run marathons. Others count down days til son/ daughter goes to kindergarten, middle school, graduates...it doesn't matter....just set goals. Conquer. Repeat!

  • AB45
    AB45 Member Posts: 148

    Hi All

    I just received my pathology for my lupectomy. I thought i was a stage 1 and when pathology came back from.surgery, I am now a stage 111 due to the lymph nodes being positive. I am scared to death, especially about chemo. Need some encouragement from any stage 3 survivors

    Thanks

  • TectonicShift
    TectonicShift Member Posts: 102

    Hi AB, I had 11 positive nodes. Very similar story to yours. They didn't think I would have any - no lymph nodes showed on my ultrasound. But I came out of surgery stage 3c. It is SUCH A HUGE SHOCK. I think I cried for about 3 months straight. I still cry sometimes! But that was in 2011 and I'm still here. You have a hard job ahead of you (chemo, rads, and maybe more surgery and estrogen blockers if you're ER positive) but take it one day at a time and come here and ask questions. With time you will adjust to a new normal.

  • AB45
    AB45 Member Posts: 148

    Thank you,I am struggling so much and can't seem to move today. I am going to try. Did they order a CT scan for you after surgery to determine treatment plan? Had the lymph nodes metastasized anywhere else or did the node trap it from.moving to the bone? Sorry if too personal, just wondering and scared

  • TectonicShift
    TectonicShift Member Posts: 102

    Yes, I had CT scans of chest abdomen and pelvis, as well as a bone scan. You will have that too. It is standard. You will have chemo and radiation too I would think. I think most all stage 3 people do.

    In my case it had not spread to bones as far as they could see. Sometimes the lymph nodes do their job and catch and contain it.

    I had a lumpectomy first, then a mastectomy because the lumpectomy didn't appear to get all the cancer in the breast. When they did the mastectomy they took more lymph nodes from under the arm and that's when I found out just how many I had positive!

    It's okay to cry, scream, be sad, be scared, be paralyzed. It's totally normal. If possible try to get outside and move around every day. It helps keep your mood up and is good for you too. If your diet is bad, try eating a very healthy diet. It is no fun but it can make you feel better in the long run. (And MAY be anti cancer too!) Break out your favorite movies and your favorite music. Dance and get yourself organized. Stay busy if you can. But also stay in bed and sleep when you need to. There are no rules.

    It is such a shock and so scary and depressing. We all know it and we've all been through it. As I said you have a hard job ahead of you. In some ways when I got my diagnosis is when I really grew up. I have wisdom now I never expected to have.

  • AB45
    AB45 Member Posts: 148

    Thank you so much! With encouraging stories and faith I am learning stage 3 does not mean death. Stage 1 does not mean it will not reoccur. I read all the stats and realized that every person is different but one thing is the same, we are all struggling.

  • TectonicShift
    TectonicShift Member Posts: 102

    I also had a brain MRI at diagnosis. My doctor did not want to order it because it is not a standard test for newly diagnosed BC. But my grandmother died of breast cancer that went to the brain so I insisted.

  • AB45
    AB45 Member Posts: 148

    I am awaiting chemo apt but was wondering what type of chemo was suggested for hormone positive cancer stage 111 IDC. I saw somewhere someone said chemo injections instead of IV, is that a thing? Totally new to the chemo world.

    Thanks in advance

  • moth
    moth Member Posts: 3,293

    AB45, the only common cancer injections are hormone treatments.

    Chemo is intravenous (IV). It is given either by putting an IV in your arm/hand or through a port, which is an access device surgically implanted on your chest, below the clavicle. Chemo has to go in the vein because it will burn other tissues. In a vein the blood dilutes and spreads it quickly throughout the body.

  • AB45
    AB45 Member Posts: 148

    Thank you! I am assuming most people get a port? Do they out you to sleep for that?

  • moth
    moth Member Posts: 3,293

    I wouldn't say most. It really seems to depend on the region/healthcare system/MO and the patient. I didn't have one in 2018 and was 6 months into treatment in 2020 before I got mine. At my treatment center most people do not have a port. They inserted mine under conscious sedation.

  • jduvallsmith
    jduvallsmith Member Posts: 2

    I had at least 9 positive lymph nodes and some were clumped together to 3 cm. I am now 11 years out (!) and have had no problems... I believe in the concept of not worrying unless I develop symptoms of recurrance.