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Lymph Node Positive Survivors

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Comments

  • moderators
    moderators Posts: 8,739
    edited January 2016

    Rarase-

    Welcome to BCO, and thank you for sharing your information! It's always so encouraging to hear from other survivors!

    The Mods

  • live_deliciously
    live_deliciously Member Posts: 183
    edited January 2016

    hi rarese. Thanks so much for posting and welcome to BCO. You've been through a lot of stuff. So good to hear other's successes as I then feel there is hope for me too.

  • Rarase
    Rarase Member Posts: 5
    edited January 2016

    Hi Live-Delici

    Reading here helped a lot coping with my diagnosis! Sure there is hope!

    Best whishes

  • fashion_mom
    fashion_mom Member Posts: 1
    edited January 2016

    A study on 173,797 breast cancer patients in the Netherlands between 1999-2012 has shown that "trastuzumsb (Herceptin) is so effective that HER2 positivity on survival has become negligible". The authors conclude that tumour size and nodal status are still the biggest indicators of overall survival. (BMJ, Fall 2015).

  • Tomboy
    Tomboy Member Posts: 2,700
    edited January 2016

    Here I am!

  • Tomboy
    Tomboy Member Posts: 2,700
    edited January 2016

    If you take a look at women with st. lV, many of them did not have a single positive node. And then there are things called 'skip' metastasis. And some of those women even had a low~grade, 'non-egressive' tumor. Really, no one can tell how or when or why or who, even if they have a pretty good idea. Mostly though, breast cancer is more dangerous to a younger woman.

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited January 2016

    fashion_mom That's amazing - would you happen to have a link? I would love to see the article if possible!

  • Butterfly66
    Butterfly66 Member Posts: 2
    edited February 2016

    hi all!

    Ched I agree with you on the er+pr+ risks of recurrence. My first bc dx was in Jan 2008 er+pr~ her2-

    I was just diagnosed with a recurrence almost 8 yrs out. Now I am tnbc. ( locoregional regional recurrence (16/37 nodes, axillary only)

    I too now have been told that er+pr + can recur many many years after. Compared to tnbc go figure!!

    Sometimes I wonder about all this, is it just luck? Is there any validity? Feeling a little unsure

  • lifelover
    lifelover Member Posts: 263
    edited February 2016

    I had 3 of 7 nodes positive. No recurrence. And it will be 5 years since my diagnosis on the 9th of February 2016. Trying to live life with positivity which can be a challenge ThumbsUp

  • ssgranados
    ssgranados Member Posts: 5
    edited February 2016

    I had 18/24 lymph nodes test positive with extranodal extension and I'm sick to my stomach. They would like me to participate in a clinical trial study of everolimus which is primarily used for Stage IV cancer patients. They would like to try it on Stage III patients to prevent recurrence but I don't know what to do. Has anyone come across this? Scared to death.

  • marijen
    marijen Member Posts: 2,181
    edited February 2016

    life lover, did you change your lifestyle after dx

  • moderators
    moderators Posts: 8,739
    edited February 2016

    ssgranados, you may find this page helpful Will Afinitor Work for You? in your decision-making process. You will need to weigh the pros and cons carefully, and see what feels right to you. Perhaps even a second opinion?


  • live_deliciously
    live_deliciously Member Posts: 183
    edited February 2016

    Ssgranados im in the swog everolimus trial. I just sent you a pm

  • MelZ
    MelZ Member Posts: 3
    edited February 2016

    Ssgranados - I have recently enrolled in the Swog study. Feeling like I have received a placebo. My MO felt it was worth a try. Also supplementing with vit d, iodine, magnesium, turmeric, mushroom mix, and green tea.

  • MelZ
    MelZ Member Posts: 3
    edited February 2016

    live_deliciously - I started the Swog study last week. Are you having any side effects? I am mpt and am scared that I have a placebo.

  • ssgranados
    ssgranados Member Posts: 5
    edited February 2016

    Hi MelZ, I haven't started the everolimus yet, I have to finish radiation first. What is mpt? Are you trying any other supplements? I am also Stage IIIC, 18/24 nodes, ER+ (low positive)/PR-, HER2-.

  • marijen
    marijen Member Posts: 2,181
    edited February 2016

    Hi, Doctor said I the nearest lymph node was the positive one - it was way up under in my armpit.

    Here it says the nearest is the sentinel node. My question is why was my surgery called ANLD then? Twelve nodes in all removed.

    *When breast cancer is removed, the lymph node closest to the cancer -- called the sentinel node -- often is removed and sent to a pathologist for evaluation. Removing just this one node is called sentinel node biopsy or sentinel node dissection.

  • specialk
    specialk Member Posts: 9,262
    edited February 2016

    marijen - the difference between SNB and ALND is that sometimes when a SNB is positive some surgeons will then remove additional nodes (usually levels 1 & 2, leaving level 3 intact), and this removal of additional nodes is called ALND.  SNB nodes are in the axilla (underarm) and are different than intramammary nodes, which are in the breast itself.  SNB is not testing nodes in the breast - it is used to determine whether cancer has traveled outside the breast to the loco-regional area of the axilla - this spread can be an indicator of risk of spread outside the breast, but not always.  In your case it was done in addition to the SNB, possibly due to the size of the positivity in the SNB, or the preference of the surgeon.

    Edited to add - I am a node positive survivor of 5 years.

  • live_deliciously
    live_deliciously Member Posts: 183
    edited February 2016

    hi melz and others. There is a thread on here for the swog Everolimus study you might want to join. I'll update there as well. Yes I definitely know I am on the real drug. I've had side effects. Nothing to stop me from taking it tho. Pm me if you want to talk

  • live_deliciously
    live_deliciously Member Posts: 183
    edited February 2016

    Hormone Therapy with/without Afinitor (everolimus) SWOG-S1207


    Here is the name of the thread. I don't know how to make it a link. Sorry.
  • marijen
    marijen Member Posts: 2,181
    edited February 2016

    SpecialK thanks for that clarification. I got a pre radiation CT report last night and it looks like all is clear in the vicinity from adrenals to abdomen! Yay! Oops except for mitral calcification.

  • beth1965
    beth1965 Member Posts: 203
    edited February 2016

    17 positive nodes with a 2 cm and 1 cm tumors in nodes as well and 9cm tumor in breast.

    I have just hit year 4 since dx.

    I try to get light exercise -walks - eat raw garlic, tumeric and green tea. I have been in last 6 months starting keto lifestyle eating - very low carb no sugar high fat eating. Try to keep positive happy people tend to be healthier

  • edwsmom
    edwsmom Member Posts: 270
    edited February 2016

    hi guys,

    I'm so happy I came across his thread. I'm super nervous about the nodes involved in my breast cancer.

    Basically I was diagnosed with occult breast cancer. They have never been able to find a primary tumor in either breast. They saw an enlarged node on my left side during a routine mammogram. It was 3.5 cm

    I am triple positive and completed TCHP chemo. Out of an abundance of caution I chose to do bilateral mastectomy (since they never found where the cancer originated...though it would have been the left). They also did axillary dissection.

    I received the post surgery pathology report back. Nothing at all was found in either breast...not even microscopic cancer cells.

    During the axillary dissection, They removed 21 nodes (levels 1 and 2). Of those 21 removed, two had malignancy. The main node that we knew about was reduced by the chemo to 1.1 cm and did have some malignant cells left. Unfortunately, no full response.

    I have a call into my surgeon bc the pathology report was very vague in some areas. For example, it said that the main node had "extra nodal extension". My surgeon said that the cancer had broken through the coating of the node (15% of the node), but it hadn't entered the fatty tissue surrounding the node. What does that mean? Is it a good or bad thing? Should I be worried?

    There was also no detail in the report about the second (new) node at all. I've asked the surgeon to find more out about it. Was it contained? How big was it? Was it the same kind of cancer?

    Anyway, I don't have a clue what to think about all of this. Is it a good result? How worried should I be? Anything else I can do?

    I start radiation on the left nodal area next month, so I guess that's a good thing. I'm nervous about that.

    I think I need to seek out a dietician who specializes in cancer to talk to and change my habits.

    For those of you who have been through this what do you make of it? What else should I be asking? I'm trying to be as aggressive as possible. I have a 3 yo so and I want to see hi grow up....


  • Optimist52
    Optimist52 Member Posts: 144
    edited February 2016

    As you are hormone positive, have you been recommended hormone therapy? Perhaps your docs are waiting until after radiation therapy. Wishing you well with everything.

  • edwsmom
    edwsmom Member Posts: 270
    edited February 2016

    Hi Optimist,

    I had neoadjuvent chemo and I will have hormone therapy after radiation.

    I'm still waiting to hear back from my BS with answers to the questions I asked at the beginning of the week.

  • marijen
    marijen Member Posts: 2,181
    edited February 2016

    Hi edwsmom, I also have an occult primary, maybe gone with Letrozole treatment

  • LM070917
    LM070917 Member Posts: 68
    edited February 2016

    hey marijen, when you say occult, do you mean your lymph nodes on one side are enlarged but no breast lump can be found? Have you had any tests or biopsy to check the nodes for cancer?

    When I originally had my diagnosis back in sept 2015, my ct scan before surgery said bilateral enlarged lymph nodes. They took out the nodes on the right side completely, 2/14 cancerous, and breast tumour but they left the left side nodes in, as there was no lump and thinking that the chemo would get them, if cancer was there.

    I think only one node on the left side was enlarged. Now I've finished chemo and not sure what to do. I've had an ultrasound since on the left nodes and breast again, but no lump and now apparently the nodes seem only slightly bigger than normal. I'm due to have mascretomy on the left breast (cos i have a lot of cysts/fibros), but not for 6 months. Just worried about the left and don't want anything missed. Can ultrasound work as well as ct? Is it possible I could have occult on the left side? Probably overacting.

  • marijen
    marijen Member Posts: 2,181
    edited February 2016

    Ultrasound may be as good as mammogram, I don't know about US vs CT. You had a 6cm IDC on the right? How is that occult? You had an ANLD it looks like on the right? They look at nodes with US to see if there is increased vascular activity. And Pet Scan shows any hot spots in the whole body. They will find what you have on the left side when you have your mastectomy. You have to ask your doctors these questions, tell him you are worried about the cancer spreading. Doesn't look like you had a PetScan. I had the works, Mammo, US, Petscan, Full body CT, breast MRI. No primary tumor, just one node. The RO thinks maybe one rogue cell got into the lymph and multiplied. It was only 3mm after surgery in the pathology report, but it started at 4.1 cm. The rest was non-cancerous material.

    Can you move up your mastectomy, why six months?

  • LM070917
    LM070917 Member Posts: 68
    edited February 2016

    hey marijen, yeah I had IDC in the right breast and 2 lymph nodes, so had mascretomy and axillary removal sept 2015.

    It's the left side I'm now worried about, because the ct scan said enlarged lymph node but there is no tumour in the left breast. I haven't had a biospy.GS wanted to see if chemo would get it, if it was cancer. It's this side I think could be occult. My most recent ultrasound (2 weeks ago) said the node (which came up previously) on the left side was slightly enlarged but not pathological suspicious. My GS is keen for me to have a mascetomy on the left anyway, but wanted to wait 6 months after chemo (which i just finished) and rads so my body could recover. But I am concerned and have booked an appointment with her next Tuesday. I haven't had a pet scan Thank you 😀

  • marijen
    marijen Member Posts: 2,181
    edited February 2016

    You have already had enough cancer to justify a biopsy on the left. I don't get why they can't take the be safe not sorry approach. Maybe you need to be more demanding. Chemo doesn't always work. I would be worried too

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