SNB question...all thoughts & opinions welcome! !
Okay, I have read and read about doing the SNB for DCIS and the more I read the more confused I become. It seems controversial but much of what I have found online is from the past 5 years or so and not the most current. I really, really don't want it as I am almost more afraid of the lymphedema than I am of having cancer! Sounds silly, I know, but it's stressing me quite a bit. I am aware that if they find out from final pathology after mx that it is actually invasive rather than DCIS, then they will have to do the full axillary node biopsy, which is much worse than the SNB. But with the diagnosis of what they believe to be DCIS, my odds for it to have spread to my nodes seem to be low, and I am wondering if it is worth the gamble.
So, I am wondering if anyone here with a DCIS diagnosis decided to deny having the SNB and/or had a Dr that said they did not need to do it? Or I'd also appreciate ANY thoughts or opinions on this. Thanks!
Comments
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Like you, I looked at all the literature and found widely divergent conclusions. Despite the reportedly miniscule risk of LE with SNB (as oppposed to full axillary dissection), I was scared spitless at the thought of SNB - not the procedure but the possible aftermath since I seem to draw the short straw a lot of the time. I was also freaked out at the thought of any risk of LE in my dominant arm. I have a close friend with severe lymphadema (following a radical MX) so I know how truly miserable it can be.
I talked to multiple surgeons and found that the reccomendation for or against depended on whether I was having a lumpectomy or mastectomy. They did not recommend one at the time of my two lumpectomies (which never achieved clear margins), but felt that it was warranted at the time of my unilateral mastectomy for a large amount of multifocal Grade 3 DCIS since they cannot go back and do a SNB after a mastectomy. I had a skin sparing MX with immediate DIEP and it turned out that the surgeon was able to remove 2 senintal nodes through the breast incision so I avoided that uncomfortable extra incision in the axilla. I'm healing well with no problems so I apparently got the long straw this time.
In the end, all you can do is educate yourself, get lots of "expert" opinions and make an informed decision relying on your gut, inner voice or whatever you rely in to make difficult decisions.
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My breast surgeon from the Boston area did not recommend a SNB unless my final path was more than DCIS. Fortunately I had only DCIS and clean margins when I had my lumpectomy in April 2009.
Good Luck,
Becky
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If it helps any, SNB resulting in lymphedema is pretty rare... it does happen but not as much as with women that have many nodes out. .... Tami
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I've seen two BSs so far - both recommend lumpectomy for less than 1 cm lesion of med-high grade DCIS without the SN biopsy. A very good pathologist at Mt. Sinai also said not to have the biopsy. Havne't made a final deciison yet, so I suppose things could change.
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I had SNB on my first lumpectomy in Oct. Technically if it's just DCIS there should be no lymph involvement but you NEVER know what they'll find at pathology after excision of the tissue. They took two sentinel nodes, both clean and it was just one more reassurance for me that I didn't have to worry at all about it spreading had there been some pesky amount of invasive in there that the biopsy had missed. I have NO particular side effects from it and found the knowledge that I'm clean to be very reassuring.
As it turned out I had two lumpectomies and due to multi-focal, extensive DCIS, without good margins, I'm now facing mastectomy. I'm DELIGHTED that the lymph node issue is far behind me, and I don't even have to think about that part any more. Good luck.
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I had a SNB that failed, so the doctor took out three axillary nodes. I've had no problems whatsoever - it's usually when they take out a lot of nodes that lymphedema is a problem.
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My surgeon planned on a SNB, but the nodes didn't show up so she moved forward without it. (I suspect they were fried from radiation I received for a cancer I had as an adolescent.) Anyway, she told me before the surgery that if she couldn't find them she didn't think it was worth going after the axillary nodes. So there's another opinion.
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I had a mastectomy for widespread DCIS and skipped the SNB.
Susan Love counsels that it's a good option if you have a lot of high-grade DCIS and while I did have some high-grade I didn't have a lot (the phrase Love used was "mammogram lights up like a Christmas tree) and decided not to mess with my underarms which I do not regret. Even if you don't get lymphedema the surgery on that area, which is pretty tender, increases your post-operative discomfort.
My surgeon mentioned SNB and after I responded negatively he didn't bring it up again. Had he recommended it because he felt the possibility of more than DCIS was high I would have followed his recommendation.
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The medical profession seems to be moving away from node biopsies in cases of limited areas of DCIS. My lumpectomy was 8 years ago and I have a feeling that is why mine were biopsied.
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sejnboys,
Since you are wondering about the odds, here's my understanding of the risk levels on both sides of this issue:
- For those who have pure DCIS, an SNB isn't necessary. However, for those who are initially diagnosed with DCIS via a biopsy, there is approx. a 10%-20% chance that some invasive cancer will be found once the final pathology is complete after the lumpectomy or mastectomy. For women with high grade DCIS and/or with comedonecrosis and/or with large amounts of DCIS, the risk is higher. For women with small amounts of low grade DCIS, the risk is lower. If any amount of invasive cancer is found, even just a tiny microinvasion, then it will be necessary to check the lymph nodes, either with an SNB or an axillary dissection.
- For those who have a lumpectomy, if invasive cancer is found in the breast tissue removed during surgery, an SNB can be done later as a second surgery. However, for those who have a mastectomy, an SNB is no longer an option (an SNB requires that the breast be in place) so if any invasive cancer is found in the breast tissue removed during the mastectomy and an SNB was not performed, an axillary node dissection will have to be done as a second surgery. This is why the recommendation on whether or not an SNB is necessary often varies depending on whether one is having a lumpectomy (SNB is not usually necessary) or a mastectomy (SNB is often recommended).
- A number of studies have shown that the risk of lymphedema for those who have an SNB is approximately 3% - 5%. In other words, 3 to 5 out of every 100 women who have an SNB will develop lymphedema. Lymphedema does not always develop immediately. Once lymph nodes have been removed, the risk of lymphedema remains for the rest of your life. My understanding (but I haven't done a lot of reading up on this) is that the risk of lymphedema for those who have a full axillary dissection is somewhere in the range of 10% - 20%.
This study talks about the risk of lymphedema following SNBs and axillary node dissections: http://jco.ascopubs.org/cgi/content/abstract/26/32/5220
The decision on whether or not to have an SNB if you are having a mastectomy for DCIS is an individual one - it's all a question of how you view risk and which risk (the risk that invasive cancer might be found or the risk of lymphedema from an SNB) concerns you the most. There is no right or wrong answer; you have to decide based on whatever you are most comfortable with. But if you really are not comfortable having an SNB, it is certainly a reasonable option to say that you don't want to have one.
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I was told that the radio active dye procedure needed to do a SNB required a breast to be injected into. My BS injected it before the surgery. She used the same entry for the removal of the SN as the Mast. I do not have a separate incision. My surgery (unilateral Mast.) was 12/8 almost 2 weeks ago.
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ok, so what you really have to balance is the chance of snb now vs full dissection later, but only if you are having a mast.
Tough choice. If you are young and healthy, and have a surgeon who does a lot of SNB's, you might want to do it. The chance to avoid a second surgery, and losing more nodes seems like a reasonable trade off.
See if you can get some stats on the chances of your DCIS to be invasive, (size, grade?)
Does the lymphadema risk change with age or weight?
I had a 1.3 cm invasive tumor, so the chance of nodes was 30% but it was there, so I had 8 out.
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I am having my SNB and lumpectomy this Mon (12/21). I have high-grade, multi-centric DCIS. I have a question - will they be able to tell me if the ca has spread to the nodes this same day or is there a wait? Also, will they be able to tell me if the excised tissue contains invasive cancer the same day as well?
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Cookie, lymphedema risk is slightly higher with age, but considerably higher with overweight. Weight gained after your surgery is an additional risk. (Lymphedema can result strictly from obesity, in fact, with no cancer or surgery at all). Other risk factors include radiation; previous trauma or surgery to the chest; diabetes or other vascular conditions; and post-surgical infection, seroma or "cording" (Axillary Web Syndrome). Very recent research even suggests a genetic predisposition in some women, but there's currently no way to determine who that might include.
All of us who have been treated for breast cancer are at risk for lymphedema for the rest of our lives. Happily, there are steps we can take to reduce that risk. Here's a page with suggestions for reducing your risk:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htmBe well!
Binney -
Hi Sejn.
Just wanted to let you know that I had a SNB with my mx for extensive dcis and then I had rads over my tissue expanders. I'm over 3 years out and no lymphedema.
I went to occupational therapy after my surgery and they basically said it's a crapshoot of who gets lymphedema. So, if you decide to go for the snb, then give a little more care to that side and don't try and lift really heavy things and whatnot for a while. The healing part isn't too bad. yes, it takes a little longer to heal but nothing bad.
I know everyone is different and it is a very personal choice.
Best of luck to you!
Tara
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yikes, I have a post surgical infection now!
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I met with 3 different breast surgeons. All three recommended the SNB for me. My DCIS is high grade with comedo necrosis. They said if I were low or mid grade they would not need a SNB.
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Thank you all for the informative responses. I am so very torn about this. Some well-intended loved ones around me think I am making way too big a deal out of this SNB & lymphedema risk....to them it's a no brainer to have it done and make sure my nodes are clear, especially with the odds of developing lymphedema being low. But these people are not the ones who will have to live with that risk and/or condition the rest of their lives. Thanks again for all of you input.
Suzanne
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My friend had DCIS 13 years ago, and the doctors did not take out any nodes and had a lumpec (that's it). Her cancer "came back" two years later in her lymph nodes, and she swears that it was because they did not check the lymph nodes. So, then she had to go through the whole gammit of masectomy, chemo, radiation, etc. and of course is bumped up to stage 2 or 3?. She is still going strong now, but she had wished they checked the nodes. Maybe she was the 10-20%.
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VinRobmom
I had my surgery 12/7, I was told about nod involvement when I woke up, but I was told that was from the 'frozen section'. The final path. came the next day, that included the nodes and invasive answers. In my case they were the same as the frozen section, negative.
Good luck on the 21st.
Jane
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Thanks Jane, and glad to hear that you got good news about it.
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My lumpectomy (half-breast-ectomy) margins still weren't clear (multi-focal), and there's a combo of intermediate and high grade. I'm having a bilateral mx on 1/6/10. I'm actually very relieved to have the SNB done....I know there are risks involved and the obvious challenges later, but I just want to make sure all is ok....I don't want to have anything hanging over my head.
That's also why I'm choosing to have the other side taken....The left side is the one with DCIS...nothing showed up in the Mammo or MRI on the right side, but I've read enough to know, I don't trust their results entirely.
I hope I'm not making a mistake....
Of course, I'm not looking forward to ANY of this....I'd rather not be dealing with any of it...but since I do, I want to get a good swipe and get on with thingw without a cloud hanging over my head...
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I had a mast. on my left breast with DCIS--my choice. (Nov.18) I asked the BS to do the SNB just to be sure. He said it is so much easier to get to with a mast. than during a lump. Everything was all clear for me, for which I am very thankful. The peace of mind is priceless. I wanted to do all I could while I had the chance. Dr. also said I wouldn't have LE with one node removal and I am fine so far. -- no pain either-- This was my expereince.
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robin
I am similar to you. My dr said with high grade he would do a SNB, I was relieved. I know there are risks, but I want it checked so that I don't have to wonder what if. I am also having BMX for the same reason. I want it done and over with, one time is MORE than enough for me.
I get so caught up in researching and reading and figuring out all angles of the surgery and recon, that I "forget" the reason and what is going to happen to me. Then I kind of 'wake up' and have a WTF moment where I can't believe I am going to walk into a hospital and allow them to do this to me. When researching it all, and making choices between unilateral or bilateral, impants vs. tissue it makes it almost seem voluntary. Of course, then reality slaps me in the head
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I had bilateral MX (left was prophylactic) for multi-focal medium grade DCIS. I went with my dr. who said that due to the extent of the DCIS in my breast he recommends SNB. After the pathology came back, it came out that I had also LCIS and had microinvasions (ILC, ICC) and the SNB came back positive. I'm supposed to have more axillary nodes removed after finishing chemo. Without the SNB being done, and all the wait for the reconstruction surgery to heal, can you imagine I wouldn't be able to function because of the worry. I do have a mild swelling under my arm on the side of the SNB, and the oncologist said it's a mild lymphedema.
And even with this, I think facing alow risk of developing a lymphedema vs. pulling your hair out and having to do more surgeries later - it's worth it to go for the SNB.
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I had DCIS, both sides, and had SNB done at the same time as my bmx. After surgery, the bs said everything "looked good" (lymphnodes). But after they got the path report back, I had one positive node on the right side, so I had additional surgery a couple of weeks later (lymphnode dissection) on the right with removal of 23 nodes. None of the other nodes were positive for cancer. It has been almost one year since my surgery, and I have full range of motion of my right arm, no lymphedema, no pain. I have a custom made sleeve that I am supposed to wear for doing yard work, vacuuming, painting, etc. I haven't worn it yet. Last spring/summer I wasn't able to garden, and I turned over the vacuuming chore to my husband. Anyway, so far so good. I would recommend the SNB for peace of mind. Just FYI, I am overweight, so I should actually be at higher risk for lymphedema.
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My surgeon recommended the SNB and I opted to do it. When I talked with my Med. Onc. she said that there is a very very small risk of lymphedema on SNB. They only took out 4 nodes on me. She said there is a greater risk if a full axillary node biopsy is done.
Hope this helps.
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I did not have a mastectomy, and my surgeon and I both agreed that I'd not have a SNB unless the path report came back showing something more than pure DCIS. Yes, I'm setting myself up for a possible second surgery, but I didn't want to risk the SEs (even though the risk is low) without a good reason. Waiting on path report now.
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I did decide to go ahead and do the SNB with my lumpectomy last week - because of where my DCIS is he said that he would be disrupting the lymphatic flow with the lumpectomy, so I just finally gave in. Fortunately he only took one node, which was clear. I am now headed to bmx with DIEP and I realize the mx itself can cause lymphedema....just seems to be no way around the lymphedema risk! Thanks for all of your input! Suzanne
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Suzanne I'm glad the node came back clear!! I too had a SNB (with Mx, not with initial lumpectomy) and it was only afterwards recovering in hospital that I too realised that the lymphodema risk exists from Mx alone...like you say there's no way around it. However it seems the risk is much less the fewer nodes you have removed, and our best defence is being vigilant, avoiding injury & infection and seeing a lymphodema specialist immediately if even a slight problem develops. I wish you a quick recovery and all the best with your Bmx and DIEP.
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