Angelina Jolie's Innovative Approach to SNB

Options
kira66715
kira66715 Member Posts: 4,681
edited March 2015 in Lymphedema

Her surgeon injected blue dye to indentify the sentinel nodes and only if the path was positive would go in and take them, to avoid LE and other risk of SNB



http://www.pinklotusbreastcenter.com/breast-cancer-101/2013/03/prophylactic-breast-dye-injection-an-innovative-idea-from-the-pink-lotus-breast-center/



sorry, can't seem to link on the iPad

«134

Comments

  • lpc
    lpc Member Posts: 303
    edited May 2013

    My surgeon did same thing on day of surgery. I assumed all surgeons did this.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    This is standard in Europe

  • beacon800
    beacon800 Member Posts: 922
    edited May 2013

    I think it's really important and never heard of this approach before.  This could be very, very helpful in cases where it is not clear that sentinel node bx is necessary.  I suspect it could prevent many cases of LE in those women.  Very generous of AJ to share those details.

    Seems like her docs have only been doing this for a few short months.  Simple and elegant solution! 

  • beacon800
    beacon800 Member Posts: 922
    edited May 2013

    Lily and apc - this is different from the standard dye injection and immediate node biopsy.

    The approach allows the surgeon to identify the sentinel node and NOT remove it until it is certain from subsequent pathology that there is invasive cancer present.

    This is not to be used for women who are known already to have invasive cancer, but for women who may or may not have it, such as women with LCIS, DCIS, BRCA mutation or widespread atypia who have elected to do a mastectomy. 

    It's great!

  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2013

    Lily, I know the SNB is standard, but is the PBDI being done too? If so, do you know any more about it--like who's doing it--so we can contact them for information about outcomes?

    Thanks!
    Binney

  • new_direction
    new_direction Member Posts: 449
    edited May 2013

    Its true its standard in Europe. Along with the ink there is a radioactive agent which can be traced. The majority of the breast is drained to the axillary region as "first stop". They use a tracer which identify where the first lymphnode is located. They take this one out - some places its rushed to pathology - and if further surgery is needed it can be done right away. Mine was just taken out and sent to normal pathology because I had neoadjuvant chemo and would need surgery anyway later on... So there was plenty of time to find out if I needed ALND.

  • lpc
    lpc Member Posts: 303
    edited May 2013

    I just checked with my surgeon to make sure I was rembrring correctly. We were not expecting node involvement as it did not show on mri so she rushed it to pathology before removing. When they (2 of3) came back cancer she moved on to axillary nodes which also did not appear on mri.



    Went into surgery stage 1 came out stage3a

  • beacon800
    beacon800 Member Posts: 922
    edited May 2013

    new_direction, what you are describing is standard here in the US and it is the procedure to find the sentinel node.

    What AJ had was a bit different.  In cases where a woman does not have known invasive cancer but does have an abnormality, she frequently has to make a choice about sentinel node removal while having mastectomy.  It is a very tough choice because chances are,  you will not find invasive and will have removed the node(s) unnecessarily which means elevated chance of lymphedema, a lifetime of protective requirements. 

    However if the same patient elects to forego the sentinel node biopsy and unexpected cancer is found, then she has a big problem because she likely will need auxillary dissection which is an even bigger procedure. 

    AJs technique solves the problem very nicely and would make a huge difference for a certain, unique patient population.

  • momof3boys
    momof3boys Member Posts: 896
    edited May 2013

    That's exactly what my surgeon did....I think it's standard

  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    What's not standard is to inject the dye and NOT remove the sentinel node if the prophy mx shows no cancer, but to assume the node will hold the dye and can be removed later at a second surgery if cancer is found in the prophylactic mastectomy. Currently many women get a SNB with a prophy mx as you can't go back later. This technique would spare the >90% of women who don't need the SNB as they have no cancer to stage.



    Yes, dye and tracer are standard, but using dye to identify the sentinel node and leaving it unless cancer is found is not standard, to my knowledge and as this surgeon wrote, deserves further study.



  • beacon800
    beacon800 Member Posts: 922
    edited May 2013

    AJs process can only be used for patients where there is NO known invasive cancer prior to mx surgery. 

    Obviously this is a confusing point.

    Sentinel node biopsy (which uses the tracer dye, etc) is well known and well used and the idea is to use it to avoid an aux node dissection if the sentinel is clear.  AJs process is where they DO NOT REMOVE the sentinel node at the time of the mastectomy at all.  They merely identify it and if needed based on the pathology of the breast tissue, then and only then will the sentinel node be removed to see if it has cancer cells.

    It will help people and I have not heard of it.  If there are doctors using it widely it will be great to know who they are so potential studies for subsequent lymphedema can be done.  Potentially it is a great solution for certain patients.

  • beacon800
    beacon800 Member Posts: 922
    edited May 2013

    I had the impression from reading the procedure blog that this would be a separate surgery (if needed) at a later date, subsequent to the path of the breast tissue.

    It's certainly at an investigational stage and they don't know how long dye will last.  It seems not too difficult to create a dye additive that might dwell longer in the node than it does now, but that is just a guess on my part.

    I thought it was one of the most exciting things about AJs story.  I never heard of this idea. 

    When I had bilateral mx, I actually asked if we could "mark" my sentinel node, like with a titanium clip or something, so we would know where it was if we needed it later.  My surgeon told me this would do little good as once we cut into the lymphatics, the risk will exist.  Ultimately I did the surgery without sentinel node removal.  I got lucky and we didn't find invasive but it was a big worry.  AJ's procedure would really help  people in the same position!

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2013

    I had a pbmx w no nodes taken and Idc was found. I had to wait about three weeks for the tissue to heal and then I had a sentinel node biopsy.

  • beacon800
    beacon800 Member Posts: 922
    edited May 2013

    Hi FarmerLucy!  I remember your story.  How did they identify the sentinel after your MX?

  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Just heard from a prominent LE researcher who said as they normally inject the tumor, where do they inject with no tumor, but then how do they identify the Sentinel node in prophylactic mastectomies?



    Not so long ago, the Mass General group got an article published arguing that the LE risk from SNB was so low, at their institution, that it should be done in all prophylactic mastectomies.



    well, those of us with LE after SNB would sure like to see unnecessary staging eliminated. In my case it was indicated, but I just argued my way out of lymphadenectomy for precancerous endometrial changes due to tamoxifen. Had my hyst 2 days ago, and my gyn onc agreed there was no benefit in my case, but many other gyn onc's wouldn't have listened. She got approval for me to wrap my arm and leave it on in the OR and hospital and considering the way information got lost during shift changes, it was one less thing to worry about.

  • beacon800
    beacon800 Member Posts: 922
    edited May 2013

    "Not so long ago, the Mass General group got an article published arguing that the LE risk from SNB was so low, at their institution, that it should be done in all prophylactic mastectomies. "

    What hubris!!  Even if there was low risk, it does not exempt the patient from the required preventative strategies, e.g. blood pressure cuffs, blood draws etc, which would be unnecessary if the SNB were not done.  In the case of bilateral MX, this is a significant lifetime burden. 

    Plus, we know plenty of women who do get LE from SNB alone. 

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2013

    Beacon - I guess they used the path report and the location of the tumor to figure it out. I am ignorant on all such matters so I'm not sure. I went in, the lady put in the dye, said "I've got it" and they whisked me off to surgery. The bs said if they had tried it earlier the nodes would have all lit up.

  • new_direction
    new_direction Member Posts: 449
    edited May 2013

    beacon thanks for explaining that.
    Lovely flowers by the waySmile

  • kareenie
    kareenie Member Posts: 339
    edited May 2013

    My understanding of the AJ procedure was that a surgical clip or suture would be placed to ID the SN for possible later removal in case of positive breast pathology.

  • kareenie
    kareenie Member Posts: 339
    edited May 2013

    PS. To Beacon800's doc's concern: the clips are pretty tiny. I know they place them when you have a core biopsy so they can apparently be placed thru a needle which wouldn't cut into the lymphatics much.

  • boobookitty
    boobookitty Member Posts: 21
    edited May 2013

    kira, I hope you are healing well and taking good care of yourself after your hysterectomy.  Thinking of you.

  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited May 2013

    I had my surgery yesterday(lumpectomy left breast)..I had nuclear medicine sentinel node dye injection 3hours before surgery....we feel very encouraged that (this is where it get foggy,surgeon had said he would take three node) surgeon told family that the tumor was large and that two nodes were clear....so did he take only two or did he take three...we 'll find out everything on Thursday next. My diagnosis was IDLC. Left breast...RT breast jwire procedure was done. I don't think we know anything about that yet....I have to be honest..the dye injection to the tumor area was the most painful thing ever in my life. Far worse than kidney stones or giving birth.... They couldn't deaden the areas to be injected with the dye. 4 injections of dye lasting about 20 seconds each. I was literally and shamefully screaming..louder with each injection... I keep looking on this site for someone who has had this procedure this same way. .anyone

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2013

    You know it's ironic, I am a big baby about pain, my PS says I had the worst pain of any patient ever, but the tracer shot was not especially bad. Go figure!

    This whole genetic/systemic theory of LE really makes sense to me.

    If you have a bad lymph system, a SNB can give it to you.

    I have to admit I that Mass General thing made me so mad.

    Tell them to go to the beach with a damn sleeve on.

    UGH just HATING LE this week.

    KIRA so glad you stopped them from taking nodes.

  • Fearlessfoot
    Fearlessfoot Member Posts: 165
    edited May 2013

    Dear sarajaneevans,

    Reacting to pain and discharging your emotions is nothing to be ashamed of, in my eyes.  I think screaming or crying when in pain is a way to process it and helps in the recovery.  But I am so sorry you went through that.  Sending you healing thoughts... May you find comfort and peace in connecting with everything good around you.  As I tell my son, let out the sad and the mad, to make room for the glad. 

  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    MassGeneral can go blow wind! I went there.

    My BS has published papers on avoiding taking too many nodes.

    They used the dye on my clean nodes and took 2 , and I have LE , which went unDX though it was brought to their attention at least once a month for the following 5 mos.  I called and kept questioning the mottled area in 1 breast and the swelling  .  Instead of saying: " Come in and we'll take a peek" or referring me to my local LE therapist, I was told each time that I was being silly or that I might have an issue from rads ( DOH!  But I didnt have rads ) etc etc .. .  I was made to feel like an anxious PEST.
    FINALLY, when I went for my 6 mos follow up and SHOWED the BS where I could no longer wear my wedding ring after 30 yrs DESPITE losing weight, she said :  " OK, I see it.  Have your ring size changed"

    Boy, if that was all LE was , huh ?!

    EDITED TO ADD:
    I am in their sham of  an " LE study" where I dont even believe my LE has been reported or recorded. I was never ever given a single  sentence or pamphlet on warnings or risk reduction. I will never ever know if  this could have been prevented <by me>.  I owe them a $3000.00 co-pay, and I am certain I'll be spending more than that on their ' iatrogenic LE"  .  I honestly dont think I should have to pay, considering  I was told NOTHING.  They apparantly are ' too good to be bothered">  Just thinking of MGH gets me furious.
    I wish I had stayed closer to home.


    Dount I could have been worse off.

  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited May 2013

    Thanks for the response kayb-I didn't know this-  I am still not as clear as I would like to b e regarding the lymph/sentinel nodes..hopefully after tomorrows appontment I will have a more clear understanding..I am making a list of questions to ask from the responses posted here... I usually have a high pain tolerance, but not in the case of this procedure...BIG OUCH

  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited May 2013

    @cookiegal, generally I have a high tolerance to pain, so when they told me it was going to be very painful I shrugged it off the first and second time.. by the third warning I got nervous about it-rightfully so-I saw a video posted by a gal who had the biopsy and said it was a piece of cake,nothing to it-- for me it has  the worst part so far-- I hope to get some kind of explanation as to why it is so painful for some and seemingly a walk in the park for others..

  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited May 2013

    @Fearlessfoot-thanks for the response-at the moment I was going through it, I decided if I didn't scream with it the whole procedure would go very badly-so for the first time in my life I went with it, so to speak- I am curious why it is so painful for some and not so much for others.. once the procedure is completed the pain disssipates with no lingering effects except the memory of how painful it was, so that is a good thing..

    I am constantly in awe of the numbers of woman on this site, the courage and persistence of each and every one- you are all true warriors..

  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited May 2013

    Ok, I don't know exactly if all these SNB injections are done the same?

    And I know we all tolerate everything differently

    Here was my experience...

    When I had my surgery they had me put an ICE PACK on my aureola (sp?) and told me to leave it there. This was about 10 minutes prior tonthe needles. It was IMPRESSED upon me that it was in my best interest to leave the ice on as it was the ONLY thing that would make me NOT feel pain. Needless to say, I did not remove the ice pack! I felt NOTHING! All they used was the ice, they had told me they found this was the best way to numb the area and numbing crimes didn't do enough.



    I know that doesn't help the majority of those who have had this done already, but maybe it will help the next person?

    Pat

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    I, too, found the dye injection the most painful part of the whole thing. Actually, the most painful event of my whole life. I am dreading doing it again. I didn't scream (I'm not a screamer) but my poor husband almost lost fingers I squeezed so tight!  I'll try to remind him to take off his wedding ring before he gives me his hand this time! LOL.

Categories