Anyone out there with more than 10 nodes positive?

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited January 2011

    Yes, we are all anatomically unique and our number of nodes will vary based on that uniqueness in addition to the degree of surgical removal the surgeon opts to use.

    Here is a fairly comprehensive article on Axillary Lymph Nodes found on the Ganfyd site which is similar to Wikipedia but is specifically a free medical knowledge base and collaborative medical reference by medical professionals and invited non-medical experts.

    http://www.ganfyd.org/index.php?title=Axillary_lymph_nodes

    The interesting point is that from a strictly anatomical classification they list 6 separate classifications of axillary nodes.  From the surgical viewpoint as it relates to breast cancer surgery, however, they define nodal locations by the term "station"  or  "level" of nodes.  So surgically they refer to 3 levels of axillary nodes. 

    Most Sentinel Node biopsies include just those nodes that light up first from the injected dye and possibly any surrounding or suspicious looking nodes in that area.  Typically a sentinel node will be in the Level 1 area of the axilla but not always....again we are all different and the pattern of lymphatic flow will vary in individuals.

    In recent years the term "axillary dissection"  is vaguely defined to mean the removal of level 1 and 2 nodes or even just level 1 nodes.  It is really up to the discretion of the surgeon.  Level 3 nodes typically are not removed unless there is known pathology and evidence of very locally advanced disease.

    We must remember that our entire bodies are covered by lymphatic vessels and lymph nodes.  Axillary nodes are only one component of our entire lymphatic system.  Even in the case of breast cancer, we have nodes that are considered surgically inoperable because of their location.  These would include the intramammary nodes that can be very near or underneath the breast bone making biopsy and removal difficult if not impossible.

    So when it comes to the difference in the nodal counts that we hear reported it can be a factor of how many levels of nodes were removed in addition to the normal anatomical variations between each of us.

    I had 23 nodes removed which included my level 3 nodes.  All 23 were found to be positive so my onc and I made the assumption than any nodes left behind were also positive. We have been aggressive in treatments though and are thrilled to be past my 5 year mark still NED! 

    Just remember ladies that positive nodes means a well functioning lymphatic and immune system doing its job, capturing and imprisoning those cancer cells that are trying to move out of the breast area. 

    I know we would all rather not have any nodes positive.....but we also know 0 nodes is no quarantee that cancer cannot still spread in other ways.  We have heard the story too often of Stage 1 ladies with 0 nodes ending up Stage IV.

    I say hurray for a strong lymphatic system and know that our future prognosis is not always "told by the nodes".

    Hang in there ladies!  Smile

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited January 2011

    Hi Sherri!  Good to see you are still holding down the fort around here!  You should get a medal for all the good advice and support you provide to the Stage III girls! 

    You are greatly appreciated.  Smile

  • Rachel1
    Rachel1 Member Posts: 363
    edited January 2011

    Lindalou,

     I love how you think!!

    "Just remember ladies that positive nodes means a well functioning lymphatic and immune system doing its job, capturing and imprisoning those cancer cells that are trying to move out of the breast area."

     I'd like this as a tattoo on my arm pit!!!

    I've got 7 out of 23 positive (to think 7 was once my lucky number) and I've been freaked by it. I just finished chemo AC/taxotere in October and 34 rads in December. I'm on tamoxifen. But this after the treatment stage has been HARD.  Thanks to all the ladies who have responded!! 

  • deenah
    deenah Member Posts: 178
    edited January 2011

    Add me to the IIICer club.  18/51 positive nodes, plus 2 mammory nodes and 1 supraclavicular node postive.  Inoperable.  10cm initital tumor.  Bilateral mx and removal of levels 1 and 2 axillary nodes.  Extranodal involvement between levels 1 and 2.  Did AC DDx4, then Taxotere DDx4 with Herceptin weekly.  Continuing Herceptin weekly until July.  Starting HER2 vaccine trial in Seattle next week.  I also have a PET/CT this Friday to check up on some lung and liver spots found on a CT in October.  Hoping and praying they aren't cancer!  Bone scan clear in October, and brain MRI clear 2 weeks ago.  It's a journey, but I have hope that I will beat this. 

    Allalone - I got an insane number of "second" opinions, and I asked the same question you did when I was at Stanford.  I didn't understand why I had 51 nodes removed and some people only had 8.  His answer was that it totally depends on the pathologist and how many he/she feels like counting.  I think every person has a different number of nodes in each level (they generally remove a minimum of levels 1 and 2, and sometimes take level 3), but that does explain the vast differences in numbers.  Sometimes they stop counting after 1 negative node, and maybe in my case they decided to count them all.  It made sense at the time, but after seeing more and more signatures on this site, I see that alot of women had all positive nodes (whether that number was 8 or 18), so that wouldn't seem to fall in line with the idea that pathologists don't count all that were removed.  Who knows what is right.  It is strange how different the numbers can be though.  I couldn't believe I had so many positive nodes, yet no spreading to bones, brain or organs.  Maybe it was because I had such a huge number of nodes to filter the cancer.  I like to believe that anyway!

  • Kathleen26
    Kathleen26 Member Posts: 210
    edited January 2011

    Another one for your exclusive club.   I had 8 of 16 axillary nodes positive, with extracapsular extension, plus inoperable nodes in the subclavical and pectoral areas.  Had neo-adjuvant ACx4, followed by Taxol x 4, then mastectomy, then 30 rounds of radiation.  I just started Arimidex about 3 weeks ago.   The docs have not done any more tests since the beginning which is a little disconcerting, but they are saying I don't need them if I don't have symptoms.  Right now, I feel great.

  • amlg1
    amlg1 Member Posts: 596
    edited January 2011

    I too love the you think LindaLou !IThey did there job.Yea!

  • Ihopeg
    Ihopeg Member Posts: 399
    edited January 2011

    Hi Girls,

     I'm a IIIc member too. I had multi-focal ILC in my right breast. The surgeon didn't think that I had much lymph node involvement before surgery.I had a radical mastectomy in 11/06. I was so shocked when the path report said 19 of 20 nodes positive. I remember, my mom was at my house when I got the call. We just cried and cried.The surgeon then told me that it was ILC. I so wish I had a double mastectomy. I had TAC, followed by 25 rads including superclav, then ooph, and I have been on femara since 8/07. I feel fine. the side effects of femara seem to have worn off the past year. PS. I had melanoma in 2001 and my then onc never said to take Vitamin D, but said stay out of the sun. I have read studies that show people with melanoma are more likely to get breast cancer too.

  • allalone
    allalone Member Posts: 448
    edited January 2011

    lago and LindaLou53 thank you so much for that info. I assumed wrongly, then, that the more nodes that were tested, the more of the armpit was excised (sort of like the dif between a lumpectomy and a mastectomy). So, someone with 8 nodes tested may only have had 8 nodes to start off with and ends up no better off than someone with 40 nodes tested - we all lost our armpits, we all lost lymph nodes necessary for catching a recurrence of cancer, and we are all at high risk of LE. Sigh.

    deenah 51 nodes removed?  Wow, you beat me - and here's hoping that the PET/CT this Friday shows all the lung and liver spots have vanished. Keep us informed, OK?

    ihopeg : So sorry you had melanoma before bc. Cannot believe that your onc never reminded you to take Vitamin D at the same time as telling you to stay out of the sun. Since so many of us had Vit D levels tested after bc and found them almost zero, I am beginning to think that the skin cancer campaigns out there have contributed towards an increase in bc and other cancers.

    Question for all: Anyone taking or has taken COQ10?  A recent study showed that post-meno women are more at risk for recurrence if taking this supplement. OMG.  

  • allalone
    allalone Member Posts: 448
    edited January 2011

    As I received a private message about this, here is the article for anyone else who may be concerned about COQ10

    http://foodforbreastcancer.com/news/coenzyme-q10-(coq10)-might-increase-risk-of-postmenopausal-breast-cancer

    Coenzyme Q10 (CoQ10) might increase risk of postmenopausal breast cancer

    Last updated: September 19, 2010

    News type:
    Breast cancer study
    Publication:
    Cancer Epidemiology, Biomarkers & Prevention, September 2010
    Study name:
    Plasma coenzyme Q10 levels and postmenopausal breast cancer risk: The Multiethnic Cohort Study

    Two studies have reported conflicting results with respect to the association of circulating coenzyme Q10 (CoQ10) with the risk of breast cancer. Both studies are summarized below. The first study found that U.S. postmenopausal women in the highest third of circulating CoQ10 levels had 1.6 times the risk of breast cancer risk compared to those in the lowest third. The strongest association was found for postmenopausal women under age 60 (3.9 times the risk for the highest versus the lowest thirds).

    The second study, based on a Chinese population, reported no association between postmenopausal breast cancer risk and circulating CoQ10. However, premenopausal women in the highest fourth of circulating CoQ10 were found to have a 50% lower risk of breast cancer compared to those in the lowest quartile. Both sets of authors comment that future studies are needed to define the origin of circulating CoQ10, its physiological functioning, and potential role in cancer development and progression.

    Implications of the studies

    CoQ10 is known to be beneficial for congestive heart failure patients and has been suggested as a treatment during anthracycline chemotherapy to prevent heart damage. The first study results suggest that such treatment would be unwise since it might contribute to breast cancer recurrence. Other antioxidants (for example, beta carotene) have been found to be associated with lower cancer risk when consumed as part of food while promoting cancer when taken as a concentrated supplement. It is possible that the U.S. population with the highest circulating CoQ10 were more likely to achieve this level through supplementation than the Chinese population. While CoQ10 is found throughout the body, it's normal functioning is not well understood. How CoQ10 functions in breast cancer cells has not been determined. Therefore, we would advise against taking CoQ10 supplements based on the available evidence.

  • Paljo
    Paljo Member Posts: 15
    edited January 2011

    Hi,

    I'm new to these forums and scared shitless. The stages are messing with my head. I thought I was stage 2 and it really through me for a loop when my oncologist told me i was stage 3. I can't seem to get my head around it at all. I don't know why I am so hung up on the stage 3 diagnosis.

    I just had my second of six chemo treatments yesterday. This will be followed by 25 radiation treatments. I had a radical modified mastectomy on October 20th, 2010. I understand that I will be on tamoxifen for ten years, also.

    My question is...."when do you ever get to the point that cancer does not occupy your every waking thought?"

    I feel so overwhelmed. I really didn't think that I would be diagnosed with cancer at 49. No history of BC in my family, non smoker, healthy lifestyle.

  • ktn
    ktn Member Posts: 181
    edited January 2011

    Palijo~ we have all been where you are at now. I ended up with a tumour in each breast with 4 + nodes on the left and 5+ on the right....basically 2 stage 3 tumours. I was devastated! I had the mast, chemo, radiation and am now on arimidex. I barely slept initially and was so scared. As I finished the different treatments I realized I was stronger than I thought. I am doing well and looking forward. These boards are an amazing source of support. Best of luck and keep writing!

  • gillyone
    gillyone Member Posts: 1,727
    edited January 2011

    As ktn says, we have been there and know how you feel. It is 18 months since diagnosis for me and though I still think about cancer every day, it does not occupy my every waking moment as it did at the beginning. I can't imagine getting to the point of getting through a whole day without a cancer thought, BUT it is so much better. It just takes time.

  • lmc1970
    lmc1970 Member Posts: 168
    edited January 2011

    Hello all-I'm a TN lllcer. In 2006 I had a 9mm tumor removed from my left breast. I also had radiation at the time. Last year they found 15/23 cancerous lymph nodes in my left axilla. I chose only surgery and prayed like crazy it wouldn't come back. Unfortuantely this year I found one of my supraclavicular nodes had swollen to 2cm. That CT showed nothing else....or so I thought. A CT scan taken two weeks later showed a 5cm tumor in my axilla. How the flip did they miss that??? So grumpy...anyway I am on chemo now. 6 lots of Abraxane have shrunk the node but not touched the tumor-makes my mind boggle how that happens! So now I have to try another chemo-A/C. Will be trying that in a couple of weeks....any advice would be greatly appreciated! xoxo

  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2011

    Palijo - just want to welcome you to the forum. You might want to start a new topic introducing yourself, as you will get more replies and more support!

    I just want to say we have all been where you are, it is awful and overwhelming and so, so frightening. It does get better, but a lot of us had/have help! If you feel like you are not coping, please tell your Onc - she can refer you to a Oncology Psychiatrist, or prescribe some medication to help you get through this tough time.

    All I can say is I am two years out, I still think about cancer every day, I still get scared at times, but it doesn't dominate my thoughts. Hang in there!!

  • janda
    janda Member Posts: 19
    edited January 2011

    Gillyone: Was just wondering the same, will i be able to stop thinking of this only for an hourLaughing. Well, life must go on, but sometimes it`s not that easy.

    About check-ups: Did you got pet-scan after your treatments? I had ct scan right after my surgery and bone scan, and they were both clear..

  • clariceak
    clariceak Member Posts: 752
    edited January 2011

    Paljo - you're in the right place for support and women who truely understand what you are going through.  Since you are new, you limited to 5 posts for the first day or so.  Feel free to send me a private message if you want. 

    Since you're on chemo, you're probably receiving steroids as well.  They can wreak havoc on your emotions and can amplify any anxiety you have.  For me, steroids and the emotional mess they caused was one of the worst parts of chemo.

    My "cancer radio" was on full blast on some points during the first few months of treatment.  It destroyed my quality of life so I opted for a very short prescription of anti-anxiety meds which broke the cycle.   I know it's can be especially hard for women  to opt for more medication when they came into this with a healthy lifestyle, but sometimes a short dose can stop the thoughts from becoming obsessive.

    Although you may not be able to stop thinking about cancer for some time, you will get to the place where you can view it with some detachment and enjoy your life.  But on the bad days come back here for support and encouragement.  You will get through this.

  • gillyone
    gillyone Member Posts: 1,727
    edited January 2011

    Janda, after surgery I had a head MRI, CT scan, and bone scan - all clear. Then chemo and rads. My onc is in the no scans unless symtoms camp and so since finishing treatment, I see my onc every three months (next week!) and have not seen rads onc since finishing rads, or surgeon since post-op check up.

  • allalone
    allalone Member Posts: 448
    edited January 2011

    TammytrustsGod : How are you? Are you still following this thread you started? I note that your last login was September 3, 2010 and that you had an extensive treatment regime lined up to take you well into 2011. As soon as you feel well enough, please let us know how it all went for you.

    And how is everyone else in this particular "club"?

  • lisamed123
    lisamed123 Member Posts: 186
    edited January 2011

    Hi all,

    Just approach my 3 years of everything.  Surgery anniversary will be March 5.  10/21 positive nodes and triple negative and still hanging in there.  I did AC/Taxol and radiation.   Also a bi-laterial mastectomy.  We through everything at it available and so far so good.

    Lisa

  • janda
    janda Member Posts: 19
    edited January 2011

    Allalone: Just finished my treatment one week ago. Nearly 7 months of treatment, puh, what a ride. So now, it?s time to go on living life, right? It feels a bit scary on my own now, but i guess that is a normal feeling? Forgotten how life was before this disease, what did i do? What did i think before? Feels like cancer is the only thing that occupied my mind this daysSmile. Anyway, must try to do the best.

    TammytrustGod and I started at the same time with treatment, and we also have the same diagnosis, so would be nice to hear from you tammy.

    Lisa: Great news to hear that you are almost 3 years out. Hoping to get thereLaughing

  • margyc
    margyc Member Posts: 2
    edited January 2011

    Hi Tammy,

     I had 16 positive nodes, a mastectomy, a bone marrow transplant and  radiation. I was 43. That was14 years ago. I'm doing great, no sign of disease. Didn't think I'd see my children grown. I was the mother of the bride last year! There have been so many great strides in treatment since then. I took Tamoxifen for 6 years, along with Bonefos (for ten years). I now take Femara and am on a tetrathiomolybdate clinical trial. I joined the trial because I wouldn't be here if not for other women in other trials.  

    You can get past this.

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