DCIS w/BMX is Sentinel Node Removal needed on prophylactic mx??

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Jennliza
Jennliza Member Posts: 184
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

At this point, I am still diagnosed with pure High Grade DCIS in my right breast after the MRI. Because of location and size of the DCIS compared to breast size, my BS suggests a mastectomy with Sentinel Node Biopsy....which makes sense. I mentioned that I am considering a BxM since I most likely would need surgery in my left breast since I am so small....might as well have piece of mind and know that occurrence and reoccurrence reduces to @ 2%. My surgeon then said she would do the same surgery on my "healthy" breast as my breast with DCIS. Meaning she would do a sentinel node removal. While I understand her reasoning, that if the healthy breast comes back with Cancerous cells, then it will be too late to remove the sentinel node to see if it spread. If there weren't real risk of Lymhedema....I would say sure. but reading about LE, I am wondering if that is the best choice.

Wondering what others decided...if you got a BxM (prophylactically of one)....did you do sentinel node biopsies in both sides? Have you had complications? Lymphedema?

I am so confused....I could just leave my left breast alone...and wait and see. ..but think I would always worry.

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  • Islandgirl17
    Islandgirl17 Member Posts: 28
    edited April 2014

    I am in a similar situation.  Diagnosed with DCIS, low grade.  But I am leaning heavily towards a bilateral mastectomy.  I just got my diagnosis yesterday, so I haven't met with the oncologist yet.  My appt is May 6th.  There are several reasons for my not wanting to keep both breasts and just do radiation.  I'm 53, and my peace of mind is worth more than my breasts.  My tumor was removed during the lumpectomy, but I don't like the idea of worrying about what is hiding in there.  It is truly confusing, and I don't even have the details of what they will do during the mastectomy (sentinel nodes or not).  I can't help you in any way because I too am new to this, but I'm there with you.  Let us know what you find out.

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  • Ariom
    Ariom Member Posts: 6,197
    edited April 2014

    Hello ladies, I am sorry you find yourselves here. It is a tough time when you are just  diagnosed and you don't have a whole lot of information to draw from. We have a member here, named Beesie, who has compiled a huge amount of information and stats about DCIS, it is available to all of us and can be printed off. I made copies of it for my friends and family, when I was first Dx so they knew exactly what I was dealing with. I learned a huge amount from it too.

    I just wanted to touch base and mention to you both that there are many women here who have been in the same situation you find yourselves. Many have had a Lx and Rads, some like me, had extenuating circumstances and had a Umx with a SNB and still others chose to go all the way and have a BMX. Please arm yourselves with as much knowledge as you possibly can, before making your final decision.

    I know what it is like to feel that fear, but in saying that, when I had to make the decision over Lx with Rads or Mx, I couldn't in good conscience, remove a healthy breast, so I opted for a Umx and SNB, without any reconstruction. I have never regretted my decision. I certainly would have preferred not to have the SNB, but I understood the reason my Surgeon thought it was a good idea.

    I am not saying that my decision would be the right one for either of you, but just to really weigh all options, before making that final decision.  

    I wish you both, all the very best!

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  • Rubiayat
    Rubiayat Member Posts: 144
    edited April 2014

    This is such a difficult decision! I agree with Ariom - arm yourself with as much information as possible. My advice is to not rush your decision - you do have time to weigh all your options.

    As for the SNB, this was just brought up on another thread and the woman there was proposing to have the dye injected and if cancer was found in the healthy breast upon removal, then the SNB could be done.

    Wishing you both all the best:)

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2014

    scared - here is a link to the procedure they did for Angelina Jolie. She had the dye put in, as Rubiayat described, but no nodes were taken. After the breast was examined by pathology and IF any cancer was found they could have gone back in a few days later for the sentinel node. Apparently the dye marks the nodes for several days or more.

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

    This seems like the best of both worlds. IHMO it is worth the risk of having to go back in for a small surgery instead of taking the node out for no reason.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited April 2014

    Good to know!  Does anyone know where this is practiced?    If I asked my hospital, they would say, "Yeah, we don't do that here."  Everyone print this out.  I would travel anywhere to have this kind of treatment.  

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2014

    info - that surgery was done here, but just like SNB did not used to be done routinely either - just axillary dissection, this will catch on eventually.

    http://pinklotusbreastcenter.com/


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  • beatrice00
    beatrice00 Member Posts: 103
    edited April 2014

    I had BMX with SNB on the cancer side at Sloan-Kettering. My excellent surgeon never mentioned SNB on the prophylactic side, so it seems to be unusual. I would not do it if not necessary. I have arm lymphedema with only 1 node removed and my arm is numb to the elbow and down to some fingers. Do one side if you can. Good luck. 

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  • danawp
    danawp Member Posts: 99
    edited April 2014

    My surgery was like Beatrice00.  I went to Sloan also, which is a top cancer center in the country.  They recommended the SNB on the side with the DCIS, and no SNB on the MX on the prophylactic side.  Seemed reasonable.

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  • LAstar
    LAstar Member Posts: 1,574
    edited April 2014

    I just posted about this on another DCIS thread.  I had 2 nodes taken on the cancer side and none on the prophylactic side.  I have had several small bouts of LE on the cancer side. My symptoms include aches and pains all through my arm and some swelling in my hand.  I use lymphatic drainage massage and a sleeve to take care of it.  I've had problems after forgetting and getting a shot on that arm (didn't I feel silly?), getting a mole removed on that shoulder, and after a fall while cross-country skiing.  It's a nuisance!

    Some surgeons are willing to use the dye pre-MX to locate the sentinel nodes then mark them (with something like a titanium marker) so they can be taken later if an invasive component is found in the MX pathology. A woman on these boards asked her surgeon about it and he was happy to do it -- it makes so much sense!  The only issue with this approach is if something is missed in the pathology report AND the lymph nodes have been affected.

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  • Ridley
    Ridley Member Posts: 634
    edited May 2014

    I also had a discussion with my surgeon about "marking" my SNB, but we found DCIS on that side before surgery so it was a non-issue,

    But, we did have a discussion of how it could be "marked". He said he would just use the blue dye and then go back in after a few days once the path was back.  He didn't want to mark the node with a clip, because he said the process of moving the nerves, tissue, etc, to find the node and mark it could cause nerve damage, etc.  I think that is how AJ's surgery is described as well.  He said the dye in the node lasts long enough to be able to find it days later.

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