negative nodes ending up with Mets - numbers?

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2009

    Please keep me updated! I might get a second opinion at PMH....

  • hrf
    hrf Member Posts: 3,225
    edited September 2009
    barbe, KerryMac has already started through Access Zometa. She's the one who told me about it. I'll let you know what happens. While it doesn't hurt to get another opinion at PMH, I'm sure you don't have to worry. .....easier said than done I know.
  • hrf
    hrf Member Posts: 3,225
    edited September 2009
    I just got off the phone with Access Zometa and my insurance company. OHIP will not pay for Zometa. My insurance will not cover Zometa. My med onc has prescribed it. barbe, it looks like, in Ontario, one might have to dig deep into one's pockets to pay for this drug.
  • MarieKelly
    MarieKelly Member Posts: 591
    edited September 2009
    : Ann Surg Oncol. 2009 Sep 24. [Epub ahead of print] Related Articles
    Axillary Recurrence Rate Following Negative Sentinel Node Biopsy for Invasive Breast Cancer: Long-Term Follow-Up.

    Kiluk JV, Ly QP, Meade T, Ramos D, Reintgen DS, Dessureault S, Davis M, Shamehdi C, Cox CE.

    H. Lee Moffitt Cancer Center and Research Institute (MCC), Tampa, FL, USA.

    OBJECTIVE: Sentinel lymph node (SLN) biopsy has replaced axillary lymph node dissection (ALND) as the definitive nodal staging procedure for breast cancer. SLN biopsy has been proven to cause less morbidity and be more cost effective than complete ALND. Short-term follow-up has shown that lymphatic mapping and SLN have a low false-negative rate, but there is limited data demonstrating long-term outcomes within a large consecutive series of patients. METHODS: Retrospective review of a prospective database of breast cancer patients at our institution was performed. The initial mapping of 1,530 patients with invasive breast cancer who demonstrated a negative sentinel node biopsy and no axillary dissection between January 1995 and June 2003 were collated and reviewed to achieve a long-term follow-up. These 1,530 patients were reviewed for follow-up time, local recurrences, distant metastases, and survival. RESULTS: 1,530 consecutively mapped invasive breast cancer patients had a negative SLN biopsy and no ALND. The mean invasive tumor size was 1.40 cm. Of 1,530 patients, 73% (1,121) underwent lumpectomy and 27% (409) underwent mastectomy. Mean follow-up was 4.92 years (range 0-12.0 years). There have been 4 (0.26%) patients presenting with local axillary recurrences, 54 (3.53%) patients presenting with local recurrences in the ipsilateral breast/chest wall, and 24 (1.57%) presenting with distant metastases. CONCLUSION: These data confirm that SLN biopsy is an effective and safe alternative to ALND for detection of nodal metastases in patients with invasive breast cancer and should be used as the standard tool for nodal staging.

    PMID: 19777181 [PubMed - as supplied by publisher]
  • pj12
    pj12 Member Posts: 25,402
    edited September 2009

    mariekelly,

    Thank you for posting that article.  It is very informative and puts numbers to our risk factors.

    Pam 

  • 4sandy
    4sandy Member Posts: 13
    edited September 2009

    After my cancer I went back to school for Reg Nurse.  I took care of a woman who had mets with no lymph node involvement, I was shocked, I had no idea this happened.  It is a small number but it happens.  I was shocked because before that I really believed that no lymph nodes meant you were safe.  After seeing that situation,I learned that we all must be aware of any changes, regardless of stage or nodes. If they offer treatment, take it if you are healthy enough to get through it. The Dr's know best, bring your questions to them. 

    Cancer can be very sneaky, do not take any chances.........fight your battle upfront

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2009

    Sandy, we ARE bringing our questions to our doctors and it's THEM that aren't on board. That is the problem!

    And then of course there is INTRA mammary lymph nodes....

  • weety
    weety Member Posts: 1,163
    edited September 2009

    THat's what I worry about!   My tumor was inner breast right at cleavage area.  Sentinal lymph node (axillary) was negative, but what about the intramammary ones!!!!???  My oncologist said that a CT scan would show if there was any involved cancer in them, but then rushed me into chemo saying that it was better with an aggressive cancer to just treat it as soon as possible after surgery rather than waiting and trying to get more info about it.  She said with an aggressive cancer, staging and other things they use to help determine treatment, is really irrelevant.  Regardless, the treatment would be the same--you have to treat it as if "the horse has already been out of the barn" even if there is no evidence on paper.  Thrilling for me to hear, but I guess I should be thankful that we are doing all we could possibly do to prevent a recurrence.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2009

    At least you got chemo! I got nothing but surgery!

  • Sydney6
    Sydney6 Member Posts: 172
    edited September 2009

    barbe1958 - Everytime I think about your treatment it breaks my heart and I get so pissed off.  We should not have to beg to receive the best chance to stay alive.  You are in my thoughts and I hope you ae able to find someone who will listen to your concerns seriously.

    Sue

  • Sunris
    Sunris Member Posts: 120
    edited September 2009

    Any opinions on recurrence after my surgical pathology stated there was ADH ?  I had a lumpectomy 8-25-09.   Do you feel the ADH adds to my risk of recurrence? Especially already having Triple Negative?

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2009

    Thanks Sue...it breaks my heart too! I had to beg to see and onc and I saw one 7 months after surgery. She said it was too late for chemo, so don't worry about it. Doi!

    Sunris, you know we'll all say we aren't docs, but I had ATHP in my "good" breast so was glad I got that one off too. Triple neg is a different beast as well. What does your surgeon say?

  • jillyG
    jillyG Member Posts: 401
    edited October 2009

    MarieKelly, thanks for posting that study, interesting stuff. 

    Before I insisted on having surgery at a larger centre, I was originally scheduled for a mastectomy at a small hospital and the surgeon said he takes a sample of however many lymph nodes and tests them.  I ran for the hills and went with a major hospital that does SNB.  Here's a thought......are some 'negative node' pts who get mets skewing the numbers?  Should the numbers only take into consideration pts who had a SNB?  If he had just taken nodes willy-nilly and not the sentinel node, perhaps there would have been no cancer detected in the nodes he had taken so I would have been classified as node negative when really there was cancer in the SNB, does this make sense? 

    What I'm getting at.......is it possible that there are node-negative patients that develop mets that really weren't node negative, they just didn't test the 'right' nodes without using a SNB?  Just something I've been thinking about. 

  • sam52
    sam52 Member Posts: 950
    edited October 2009

    It is certainly true that a surgeon who is not very experienced at doing SNB or who takes nodes 'willy-nilly' could be throwing up false negative results. When I had my mast roughly 8 years ago, SNB was being trialled here in UK.I was at a hospital at first which was not part of the trial, and yet the surgeon was doing SNB.Like you, Jilly, I ran for the hills....to another hospital where they did the traditional full axilliary clearance.(Very few hospitals in UK were part of this trial at the time).I read repeatedly the the procdure is only as good as the competence of the surgeon doing it, so I am sure there must be some patients who were told 'negative nodes' when in fact they had nodal involvement.

    Of course, bc cells can travel in the blood; (ie vascular invasion) - they do not need to travel via nodes to give rise to mets, though this is usually thought to be the major route (I think).

    It's all a crap-shoot in the end.....

    Sam

  • sam52
    sam52 Member Posts: 950
    edited October 2009

    It is certainly true that a surgeon who is not very experienced at doing SNB or who takes nodes 'willy-nilly' could be throwing up false negative results. When I had my mast roughly 8 years ago, SNB was being trialled here in UK.I was at a hospital at first which was not part of the trial, and yet the surgeon was doing SNB.Like you, Jilly, I ran for the hills....to another hospital where they did the traditional full axilliary clearance.(Very few hospitals in UK were part of this trial at the time).I read repeatedly the the procdure is only as good as the competence of the surgeon doing it, so I am sure there must be some patients who were told 'negative nodes' when in fact they had nodal involvement.

    Of course, bc cells can travel in the blood; (ie vascular invasion) - they do not need to travel via nodes to give rise to mets, though this is usually thought to be the major route (I think).

    It's all a crap-shoot in the end.....

    Sam

  • London-Virginia
    London-Virginia Member Posts: 851
    edited October 2009

    You will be releaved to know that in the 6 years since Sam heard about SNB, this has been a researched and tried and tested method.

    The sentinel nodes are merely one or two nodes or so that drain from the tumour, i.e. they are the nearest ones in the chain running from that area of the breast.  It is just a descriptional name of those nearby nodes.

    It isn't likely that stats can show how or by what route mets may appear elsewhere in the body, so I am noit sure how the stats could really reflect that.

    In a wider sense, there is much information that suggeststhat those of us who are node postivive do have a higher rate of recurrence etc etc.

  • weety
    weety Member Posts: 1,163
    edited October 2009

    Well, unfortunately, SNB isn't always perfect either.  I read that it can be determined to be the actual SNB 95% of the time. I'm not sure, though--maybe someone has better information on this to clear it up.  THere also are the intramammary nodes inside the chest wall behind the sternum that are not checked or removed.  THe SNB is the best we have to go on.  And yes, the vascular invasion piece can play into it as well.  I agree with sam52, though.  I think nodal involvement is  a worse factor than vascular invasion.  Nodal involvement means established cancer (more than a single cell unless its just micromets)  where as lymphvascular invasion is usually single cells that have escaped.  I wish there was more known about how and when and where cancer cells travel!

  • Bold
    Bold Member Posts: 692
    edited October 2009

    Just a little info. Pet scan are a great help in seeing enlarged nodes in the intramammary area. If you have had one then this should help ease your mind. If anything can.

  • weety
    weety Member Posts: 1,163
    edited October 2009

    Darn,  I didn't have any scans in between diagnosis and chemo.  Oncologist wanted to get chemo started and didn't want to waste time waiting on scans. 

  • concernedsis
    concernedsis Member Posts: 256
    edited October 2009

    Ladies there is science to the SNB. But as with all science there are exceptions. My sis' mammo, sono, mri, ct chest abd pelvis (prechemo) & Pet & MRI post chemo showed no nodal involvement. Nodes were supposedly normal on palpation. When they did her SNB they took 3 nodes but said there was no clear sentinel node (we found out later that can happen in larger tumors) all 3 were negative but her surgeon did an ax dissection as the nodes felt and looked abnormal - 10 were positive in the final path (not including the 3 sentinel nodes which remained negative). Final path also showed DCIS in the affected breast (in addition to the IDC) which never showed up in any previous studies. The nodes did show extensive treatment effect which is a hurrah for preop chemo but even after 5 months chemo (dose dense A/C & 12 weekly taxols) they were still positive (doc said active cells over 2 mm = positive) so on to radiation.

    We try not to overthink it - might the cancer have spread or did the chemo blast it - if it did spread maybe the little buggers will starve once she starts Tamoxifen as she is ER/PR + like 90%. 

    What does the future hold - who really knows - I could get shot by my boss for blogging at work or get hit by a bus on the way home.

     At some point you gotta do your best, trust your team and live your life. Oh yeah and pray like hell!

    Best wishes to all!

  • London-Virginia
    London-Virginia Member Posts: 851
    edited October 2009

    concerned - I think you describe things very well.

    You can't tell anything without the finalo path re nodes.  Scans and the initial check during my op showed me as node neg.  It was the path that found the micromets.

     It is a damn tricksy diease.

    Anyway, good luck and best wishes all -

    xxxxxxxx

  • chainsawz
    chainsawz Member Posts: 3,473
    edited October 2009

    I have mets, and my SNB pathology was clear.  My surgeon explained that it can travel via the lymph nodes or the blood stream.  I think they really do not know everything about breast cancer and how it works so there are many unknowns.   As Sam said, it's all a crap shoot, but the odds are very good you won't become stage IV :>  lisa

  • London-Virginia
    London-Virginia Member Posts: 851
    edited October 2009

    Lisa - this is very useful to know.  Thanks for giving us the info.

    xxxxxxxxx

  • pip57
    pip57 Member Posts: 12,401
    edited October 2009

    That's what it really is isn't it?  Odds.  Nothing conclusive, just odds.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited October 2009

    Concernedsis, the fear is that a lot of us DON'T get chemo or rads when our nodes are negative. That's the whole problem. So we DO know that chemo would knock out anything not found, but we didn't get the chance to blast them!

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