How many nodes did you have that showed C ?

trigeek
trigeek Member Posts: 916
How many nodes did you have that showed C ?
«1

Comments

  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Hi gals !

    I am still trying to make up my mind regarding getting an axillary dissection ( sentinel node biopsy showed 2/6 +) these were not palpable or did not appear in mri. I finished my chemo and need to decide on my action path since they pretty much left it up to me.

    Different doctors have different takes on it, some say chemo and rads should take care of anything that is left there.. and it seems like I might benefit from rads anyways. ( multifocal involvement, lymph.. vascular involvement ) although I had clear margins with my mastectomy. 

    Did you get a sentinel node Biopsy ? If so did anything come up as C.

    After the SNB did you get an axillary dissection too ? Did any other nodes come up as + ?

    I was trying to get information from a study(ACOSOG Z0011 and S9927.) but unfortunately I think it closed without reaching completion:

    Preliminary Outcome Analysis in Patients With Breast Cancer and a Positive Sentinel Lymph Node Who Declined Axillary Dissection

    Thanks !

  • marshakb
    marshakb Member Posts: 1,664
    edited January 2008

    Hi Trigeek,

    I had the axillary dissection done with the mastectomy, no SNB.  Mamm/ultrasound did NOT show node involvment but the tumor was 5 cm.  Surgeon took 13 nodes and one was microscopically positive.  I had chemo and rads, not for the small amt of node involvement but because of the size of the tumor.  I too had clean margins.

    I had 4 fields done with rads.   Axillary area, tumor area, mammary node area and supraclavical node area.  One doc said I needed rads one said no and one said I was borderline.  I decided to do everything, even going back later and having the other breast removed.  With that they did do a SNB which was clear of cancer as well as the "good" breast.  I just didn't want to worry with it down the road, being ILC and all.  Best of luck, Marsha

  • LizM
    LizM Member Posts: 963
    edited January 2008

    During surgery my sentinel node was positive and my breast surgeon took out more nodes.  The end result was one sentinel node positive, one sentinel node negative and 6 auxillery nodes negative.  My breast surgeon was happy with that results.  I did however, have rads to the auxilla by choice.  I was in the gray area with one positive node.  I also had multifocal and bi-lateral mastectomy with tissue expanders.  Ended up having rads to chest wall, supraclavical and auxilla.  It gives me peace of mind having the rads since I only had 8 nodes removed. 

  • twink
    twink Member Posts: 1,574
    edited January 2008

    During my mastectomy surgery, my SNB was negative.  Two weeks later, I found out that the IHC showed all three nodes (two sentinel and one volunteered) were positive for micromets (>.2mm, <2mm).  Sh*t!  To that point, nothing was palpable and nothing showed on the MRI or PET/CT scans.  I'd gone through neoadjuvant chemo and figured the nodes were probably more involved before chemo. Who knows.

    What I read at the time indicated around 50% of those with positive SN's turned out to have more positive axillary nodes.  My BS and Onc strongly recommended taking the remaining axillary nodes as is typical.  The complicated part of this decision was whether to go for the full dissection since only micromets had been detected.  In the case of MMs, some don't push the ALND but some studies suggest 15-20% of women with micromets will have macromets/mets in axillary nodes  (i.e. http://www.lbbc.org/news-detail.asp?news_id=1143&section_tag=G).

    I did a ton of research before agreeing with my BS and Onc to undergo the full ALND.  The additional 14 nodes taken in that surgery all came back negative.   Because of the micromets, the size of the original tumor, my triple negative status, extensive angiolymphatic invasion, neoadjuvant chemo with positive nodes showing up after the fact...I ended up with more chemo and radiation therapy.

  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Marsha, I hear you that is exactly why I asked for a bilateral mastectomy even when I was offered a lumpectomy, we have to hit this sneaky beast hard !

    Liz your stats seem to be similar to mine, you had 8 removed I had 6. Do you mind telling how your recon went ? My ps wants to swap the expanders out before rads. Did you have any problems with rads regarding recon ?

    Twink thanks so much for the link, very informative your SN's are same as mine <.2mm and >2mm. Did you have recon ? Howdid it go with rads ?

    .  

    The ILC was at least 2.5 cm, and the 2 nodes that tested positive were one  less than .2 mm and the other>2 mm. So I guess the latter could be considered macrometastases(versus micro).

    Even if more nodes test positive this will not change my treatment plans, I am done with DD AC/Taxol, and wish to get rads then will be off to Tamox.

    I just am not sure whether Axillary node dissection in my scenario is 'part' of the treatment or is just for staging/informative purposes since my treatment will not change, if not I do not see a need to remove them.

    Sigh..

  • paige-allyson
    paige-allyson Member Posts: 781
    edited January 2008

    I'd have to get back to re: more specifics after another look at my pathology report but the short answer is yes and yes. I had positive sentinel nodes and more positive axillary nodes- 6 total- none of which had showed up on mri. Allyson

  • twink
    twink Member Posts: 1,574
    edited January 2008
    Hi trigeek.  I did have recon and time will tell whether these new puppies survive rads well.  Watching, oiling, massaging, and hoping...
    As for the nodes, I had the same dilemma, is it for staging or is it treatment?  It's both.  So, although I didn't care particularly about the staging, I did want all cancerous nodes out of my body, assuming they were regional.  Hence, I went for it.
  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Twink did you do the exchange before rads or after rads ? My ps wants to do it before rads cause he thinks there will be less problems with healing that way and he could fix if the rads mess up something, later.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008
    Tri - My Sent Node was positive. My surgeon was quite adamant about the importance of an AXND. So I did. And 11 of 11 were negative. But...I've never heard of anyone having an AXND after all treatment has ended. I'm not being much help here...sorry. I guess if you had the AXND and some were positive, it would be a very good thing for them to be removed, to prevent further metastisis.?
  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    You are right Laura, my initial group said that I needed rads no matter what so they did not want to do Axil dissection.

    But then I switched groups and my oncologist is now pushing for the axillary removal after chemo..(he does not think I should have rads if no other nodes test + - they will also be looking for scar tissue on removed nodes to see whether any c cells were killed by the chemo)

    Then he wants me to skip rads if no other nodes were /are positive.

    ,

    BUT the same groups radiation oncologist wants me to do rads no matter what ( lymphatic invasion, multifocal tumor ) .. I wonder if he is following ' If you are a hammer the world is a nail' even though I am a screw. ( ok that sounded weird but you got what I said )

    Urghh....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    OMG - I love it...I have to remember that one! LOL

    Okay...I'm confused. I've never heard that radiation would kill cancerous nodes. I was told that chemo could possibly kill any micro mets to nodes. But...I think the standard is "removal" of cancerous nodes, as opposed to treatment of cancerous nodes. I'm really surprised that with 2 malignant Sent Nodes, an AXNB wasn't immediatly done. JMO - If I had vascular involvement and positive lymph nodes, I would want every possible treatment. But like I've said b/4 - I am a paranoid chicken sh**.

    I hope someone with more knowledge chimes in here...

  • twink
    twink Member Posts: 1,574
    edited January 2008

    Hi again trigeek,

    I had immediate reconstruction (silicone implants and Alloderm).  My PS also commented that he was glad I'd had that done before radiation because it would have been iffy to do afterwards.  I've heard of other women who have success following radiation but that was my PS' opinion.

    My PS, BS and current onc all said I could probably find a radiation oncologist who'd radiate me and the PS used that same adage... to a carpenter, everything looks like a nail.  They were right, I did find a radiation and medical oncologist, both who strongly believed my pathology warranted radiation therapy (and adjuvant chemo), despite the mastectomy.  I recall asking my BS before surgery (when radiation was still a possibility), what would it take for him to recommend radiation.  He told me 'positive nodes'.  He subsequently backed-of that statement because the mets were micro.  After I consulted with the radiation oncologist at a local teaching hospital, he had me convinced that rads would be worth it.  Much like the ALND decision, it took some convincing.  I never want to look back on this and wonder whether I would've, could've, should've... you know what I mean?

  • twink
    twink Member Posts: 1,574
    edited January 2008

    Laura,

    In my case the sentinel nodes were negative intraoperatively but the IHC later showed them positive with micro mets.  This might have been the case with trigeek.  Also, there's some controversy about micro mets and full ALND.  One of those gray areas I think.  My surgeon was of the opinion that micro mets or not, without the ALND, there is no way of knowing whether there's further spread or of removing any remaining potential cancerous nodes.  He strongly recommended the ALND for those reasons.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Exactly...this is what I'm confused about...you're right. How WOULD/COULD they know without doing the AXND.

    But it's ironic you would bring up the intra vs. IMC...that was my exact situation. But my surgeon still felt strongly about the AXND even in light of this.

    tri - I hope this all helps...I'm sincere, in that I really want you to get the best and most accurate care. Hopefully more will chime in.

  • twink
    twink Member Posts: 1,574
    edited January 2008

    Oh so did my BS.. he felt very strongly that they needed to come out, despite the fact that it meant another surgery one month after the mastectomy Frown.  In any case, from my reading, I understand that the IHC is turning up more micromets than ever before.  So, it's probably not unusual to have the HE produce negative results intraoperatively and the IHC to produce positive results postop. 

    Ditto to Laura's comment trigeek...hope some of this is helping and that you get the best medical advice possible to aid in your decision.

    t

    Late edit:  oops, think I got the HE and IHC backwards...

  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Thanks Gals you are the best !

    I am going to bite the bullet and use all the ammo to blast this sneaky b..stard. I am strong and will build myself up again after the dust settles.

    .

    Now  trying to schedule the PS and BS.. arghhh .. what a nightmare, the radiation oncologist wants me to start latest 6 weeks from last chemo, but with the surgery date they are giving February 14(new boobs as a Valentine's day present for hubby) - calculating 3 weeks before rads this stretches out to 8 weeks. I hope 2 months after  chemo is not stretching the rads too much.

  • LizM
    LizM Member Posts: 963
    edited January 2008

    trigeek, Here's my story:  My breast surgeon (Chief breast surgeon and Director at Johns Hopkins) did not recommend rads after bi-lateral.  He felt very confident taking out only 8 nodes.  He did however refer me to a rads oncologist (also at Hopkins).  My rads oncologist discussed two studies with me which showed rads after mastectomy with 1 to 3 positive nodes did reduce chance of local recurrence to the auxilla from 15% down 5%.  He left the choice up to me.  Because my  tumor was multi-focal, close to the chest wall, close to the skin plus only removed 8 nodes, I chose to do rads.  It was a tough decision because of my tissue expanders and I knew that my plastic surgeon would not be thrilled and I could lose my implants.  At first I was going to do the exchange after chemo before rads but my white blood cell counts were still too low after chemo and I didn't want to wait on rads so I went ahead and had rads on tissue expanders.  My plastic surgeon wanted to wait at least 6 months after rads before final implant exchange.  I ended up having my tissue expanders in for 15 months before I finally got my final implants.  I have had my final implants for almost a year and have had no problems.  However, my plastic surgeon does not want to take any chances with nipples so I am nippleless which is fine by me cause I never have to wear a bra (always seem to find a silver lining).

  • LizM
    LizM Member Posts: 963
    edited January 2008

    Also as to timing.  I ended up doing rads 7 weeks after chemo.  My rads oncologist said he was OK with waiting up to 8 weeks.

  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Hey Liz,

    Thanks so much for the input. How many of the 8 nodes tested + were they >2mm or between .2 and 2mm ?

  • golfer779
    golfer779 Member Posts: 1,378
    edited January 2008

    trigeek, one more story to ponder ... had mast and s/node which came up negative in frozen path.  One week later, got final path report and 1 of 2 had a 3mm spot.  Was recommended to get full A.N.D. they took 32 more nodes and 1 was positive. 

    Doing CMF for 6 mo., then rads, due to tumor size and margin at chest wall, then hormone (probably tamoxifan or something similar) therapy.

    All the best, Carol

  • Hattie
    Hattie Member Posts: 414
    edited January 2008

    Why is this never simple?



    I had a big @#@#@#@ tumor and surgeon felt one enlarged node, so I had neoadjuvant chemo (after biopsy, before surgery), then had a lumpectomy and full dissection. I had asked for SNB but surgeon said he needed more. I had 17 negative nodes out of 17, and was found to have not just IDC but ILC and DCIS and LCIS. I would have wanted them out if they were cancerous. The enlarged node didn't test as cancerous, but the chemo could have knocked out the cancer there and elsewhere without leaving enough scar tissue to know for sure. I had a re-excision for better margins, then had rads. My docs are pretty sure I'm done. Keeping my breasts was right for me then and I can live with it now.





    Micromets are kind of a new area of research and thought. Maybe before more recent techniques, they were viewed as negative and now we say positive.



    Ask all your docs all your questions. Make sure you know the risks/benefits for you for each path you might take.



    One of my docs told me "If two docs you trust give you different opinions, then both are right and you take the path you can live with". Made sense to me, and that's how I made some of my decisions.



    The study you cited had a really small number enrolled and has only run for a short time, so there is not data to say not doing the ax is safe, but it sounds like some researchers are thinking it might be safe since chemo should take care of cancer in the nodes.



    When you get your questions answered and get the info you are seeking, you'll be able to make a decision you can live with.



    Sounds like you are doing what you can to take the next best step for you, which is always healthy.



    Take care,

    --Hattie

  • Hattie
    Hattie Member Posts: 414
    edited January 2008

    I forgot to say, I had some weird nerve feelings for months after the ax. di. and had some scarring (cording) that resolved with physical therapy, but I haven't had any other problems and after a year, all was well and at 2 and a half, still all is well.



    Take care,

    --Hattie

  • LizM
    LizM Member Posts: 963
    edited January 2008

    trigeek, of the 8 nodes removed only one was positive and it was

    8 mm.  Were your 2 nodes considered microscopic or just positive?  It is my understanding that up to 2 mm is micro and anything more than 2 mm is just considered positive. 

  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Hey Liz

    6 were removed.

    1 was .2 mm -- micro..

    The other was >2mm.

    But the path report said 2/6 positive..

    Hmm.. wonder why it said 2/6 instead of 1/6.

  • LizM
    LizM Member Posts: 963
    edited January 2008

    I read that if you have at least one positive node, any other microscopic nodes will be considered positive as well.  I had one positive and 7 negative.   My rads oncologist told me they like to see 10 removed but I only had 8 in the first level.  Guess I don't have as many nodes as some other people.  Both my breast surgeon and rads oncologist were OK with just 8 removed.  Have you decided to have more nodes removes even though you had six removed already?  I feel very confortable as do my doctors with 8 removed along with chemo and rads to the auxilla. 

  • twink
    twink Member Posts: 1,574
    edited January 2008

    Nodes with micromets count as positive nodes but for TNM, N=1.  That's my understanding.   ITCs don't count. 

  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Liz.. that has been my whole dilemma as the groups are not aggreeing on surgery.. or rads.

    The surgeon said that she had not removed 1st level but there happened to be 6 in the area that she removed.

    My original plan was to do rads only but now I have scheduled an axil dissection then will decide on whether to get further rads or not.

    Reading the last published paper about the increased risk of ex-smokers getting lung cancer after radiation also scared me. ( I quit 13 years ago)

  • RaeMN
    RaeMN Member Posts: 52
    edited January 2008

    I had no node involvement. 

    Chose to have chemo (CMF) and rads, plus on Aromisin.

    Rae

  • susaloh
    susaloh Member Posts: 103
    edited January 2008

    Here´s my story! I had a very large ILC tumor (9x10 cm), three nodes were suspicious at diagnosis. Thanks to neoadjuvant chemo, the tumor shrank all the way to 4.5 mm (yes, millimeters) though leaving 4.5x5 cm fibrosis behind. As to the nodes, they took out 11. Out of 9 level I nodes, one had 1mm micro metastasis. Two level II nodes were free. However, all 11 nodes - scary - showed strong fibrosis meaning that all of them must have been positive before chemo.

    Now, I was left with the decision, rads or not, because I had had a mastectomy and the chemo had done such a good job. The decision to have rads to the chest wall was easy enough. But there was also a recommendation to have rads to the axilla just in case there were more infected nodes. So I did quite a bit of research about rads to the axilla and was not convinced. Apparently there´s controversy about the benefits and if at all they are very small because lymphnode metastasis is rare anyway. On the other hand, the chance to get lymph edema goes up significantly through axilla radiation. And that was the one thing I was really paranoid about.

    So I decided not to have rads to the axilla. Basically I felt the odds were that the one micromet was all that was left - after all 10 nodes didn´t show a single cancer cell. I still feel good about my decision. So far no edema - couldn´t imagine quality of life for myself if I contracted one.

    Once I had made my decision my radiologist said she felt comfortable with it because for once I would be on AHT which should take care of anything left in the nodes and second because at regular checkups they can have a good look at the axilla in case something shows up. Ultrasound seems to be quite effective for that purpose as I´m thin in that area. In case something crops up, I can still get rads then. I would even have committed myself to more chemo only to avoid more risk of lymph edema which as I said is my biggest fear!

    All the best to you!!

    Susaloh

  • LizM
    LizM Member Posts: 963
    edited January 2008

    I do not consider ultrasound very reliable at picking up cancer in the nodes.  When I was first diagnosed by ultrasound it showed my tumor to be 1.4 cm and they throughly checked my nodes by US which showed no evidence of cancer.  When I had my bi-lateral my sentinel node was positive and it was 8 mm.  I still don't understand how the ultrasound picked up a 1.4 cm tumor and a 3 mm tumor in my breast but could not see an 8mm tumor in my first lymph node.  I also am extremely thin and have absolutely no fat anywhere.  I opted for rads to the auxilla with only one positive node because of two studies I read, one from Canada and one from Europe which showed a reduction in recurrence to the auxilla with rads.  I believe having rads to the auxilla reduced my chance of recurrrence to the area from 15% down to 5% plus they believe in theory this would also increase survival since a local regional recurrence could ultimately affect survival.  I know that I was extremely aggressive with my treatment by having a bi-lateral, chemo and rads to chest wall, supraclavicle nodes and auxilla but it gives me peace of mind.  Yes I have increased my risk of lymphadema but lymphedema is not life threatening and cannot kill you.  I am two years out from surgery and so far I have no evidence of lymphedema and having rads has not hurt my implants either.  This is a very personal decision but for me doing every thing I could do to increase my chances of survival was the driving factor. 

Categories