Sentinel node biopsy risks with ax on other side?

Lisbeth

Hi all,

I had 20-odd nodes removed many years ago on my right side (all clear) and now I've been dx'ed with some DCIS in my left side. Docs want to do sentinel node biopsy. I've depended on this left arm for everything over the years. I know that, all told, you have to take pretty much the same precautions on the side with the sentinel node biopsy as you do with the axillary node side. So what am I going to do?

I'm sure you all know the drill. I use my good arm to carry grocery bags, shoulder bags, lift heavy objects, do partial yoga poses, haul suitcases when traveling, vacuum, rake leaves, get blood draws, blood pressure readings, anesthesia, you name it.

First question: My team is emphasizing SNB but not forcing it. I don't HAVE to have it if I truly don't want to. But can't MRI find issues in the nodes too? This is such a huge quality of life issue that I would even prefer chemo over having SNB!

Second question: If I do wind up genuinely needing SNB, has anyone on these boards developed LE after SNB? And for those with nodes removed on both sides -- LE or not -- how do you live your lives?

Thanks -- this is a tough situation!

Beesie

Lisbeth, are you having a lumpectomy or a mastectomy?  

An SNB is NOT indicated if you are having a lumpectomy for DCIS.  An SNB usually is done with a MX, but not because of the DCIS.  It's only because of the risk that if some invasive cancer happens to be found, then it's virtually impossible to do the SNB after the MX has been done.  So at that point, if invasive cancer is found and if an SNB wasn't done at the time of the MX, more nodes would need to be removed because only an axillary node dissection would be possible.  But with a lumpectomy, an SNB can be done as a second surgery after the lumpectomy, should it turn out to be necessary because some invasive cancer was found. 

If you are having a MX, the question then is:  how high is the risk that some invasive cancer might be found?  If your biopsy pathology & films suggests a small low grade tumor, then the risk is low and you might be able to pass on the SNB with little risk. However if the biopsy pathology and films suggest a larger amount of high grade DCIS, then the risk is greater than some invasive cancer might be found and your nodes will need to be checked. 

Lisbeth

Oops - sorry Beesie - I'm having a lumpectomy for some high-grade DCIS and my team wants me to have SNB along with it. So far there was 4 mm of DCIS found and there is a 4 cm mystery blob that was found on MRI. Onc suspects that some of this is going to be more DCIS; this is what will be excised.

What you're saying totally makes sense - thank you. Yes, I hear you that they can be done as separate surgeries, which is great. So if they do the lumpectomy alone and do not find anything that has broken out of the ducts, should that be the end of it, or would they then need to do SNB regardless because the DCIS is high grade?

Thanks so much!

rk85

Lisbeth, I wondered about this a lot too, before I had my BMX and SNB on one side.  I had 4cm of high grade DCIS removed before the BMX.  But i always wondered, why couldn't they do a thorough enough examination of the path slides to look at all the tissue removed to see if any invasive slipped by?

I thought about asking my BS to locate the sentinel node, then put one of those tiny metal clips on it like they do after a stereotactic biopsy to permanently mark a spot in the body.  Then if they found any invasive on examining the removed breast tissue, they could go back and take out the marked sentinel node to check it too.  This seems like a more conservative approach - maybe you could ask your BS if this an option.  It would really be nice to save your one side! 

Lisbeth

Hmm, is that a technique that's done regularly? (clipping a node) Something to ask... thank you. I appreciate the kind words.

carol57

Lisbeth,

I've looked at a few studies that tried to quantify LE risk after SNB, but the studies are very inconsistent in terms of what constitutes an LE diagnosis, measurement technology, and length of patient follow up. The National Institutes of Health's 'Lymphedema PDQ' puts the risk at between 5% and 17%.(http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/healthprofessional#Section_27 )  

Also, 'sentinel'  node biopsy does not necessarily mean that only one node will be removed, and I think that most surgeons will label node excision as 'sentinel node' with up to 6 nodes removed.  That's worth discussing with your surgeon, I think.  I've not seen a study that correlates LE risk with the exact number of nodes removed, but common sense suggests that the more nodes removed, the greater the lymphatic system disruption, and the more scar tissue to impair lymph flow.

My own experience: bilateral mx with SNB on one side (and like you, an abundance of caution, not strictly necessary). My surgeon told me my LE risk was less than 3% so I gave a green light.  It turned out that she removed five nodes. And...I have lymphedema, although it is mild.

I don't think anyone really knows the LE risk with SNB, especially since most of the studies look for arm LE only. I believe that with lumpectomy/SNB, there is a higher risk of breast or truncal LE than arm LE, although I just searched and cannot find the study that I am thinking of.

What a difficult decision, and I wish you courage and clear thinking as you weigh the alternatives.

Carol

Lisbeth

Thank you Carol - really appreciate this and I'm so sorry you have LE post-SNB. I spoke with an oncologist who told me that for a high-grade DCIS lumpectomy, having an SNB performed was not the standard of care and he considered it overkill. If there is extensive multifocal DCIS, or invasive cancer, or if a mastectomy is being performed, he said, then SNB would be warranted. He also said that MRI cannot say for sure whether cancer is in the lymph nodes -- that MRI only shows enlarged lymph nodes.

I will weigh the balances with my medical team and ask if there is any way some kind of compromise could happen should I need SNB in the future.  In the meantime, if anyone has had nodes removed on both sides, please speak up - I am interested in hearing your stories. Thanks!

Beesie

Lisbeth, what the oncologist told you is consistent with the currently accepted treatment guidelines.  And to your earlier question, if the surgery finds that your cancer is pure DCIS, then that will be the end of it. You will not need the SNB, even if your DCIS is high grade. 

"Lymph node surgery is generally not done with DCIS. However, the pathologist may find that you have invasive cancer and a sentinel lymph node biopsy would not be possible after some surgeries. Thus, having a lymph node biopsy before such surgeries may help decide which treatment you need."  NCCN Guidelines for Patients  Breast Cancer  See page 62.  Obviously, in your case since you are having a lumpectomy, it will still be possible to do the SNB after the breast surgery. This means that an SNB is not indicated at the time of your lumpectomy.  

I'll also confirm what Carol said, which is that having an SNB does not mean that only one node will be removed.  The surgeon should remove any nodes that 'light up' from the dye and/or isotope injection.  If the dye and/or isotopes flowed so quickly from the breast into several nodes, one could assume that cancer cells could also have moved into any of those nodes.  So all the affected nodes have to be removed and checked. I had 3 nodes removed during my SNB.  

Considering that you've had nodes removed on the other side and you've voiced concerns about having the SNB, I have to admit that I'm really confused as to why your team of doctors are recommending the SNB, particularly since it is contrary to current treatment guidelines. At this point your preliminary diagnosis is DCIS and you are having a lumpectomy, which allows for the SNB to be done later if necessary. 

Lisbeth

Thanks a ton Beesie for your detailed description of what happens there.

My surgeon just called me and said he thought I might be more at ease knowing whether my lymph nodes were affected or not, so he thought it might be a nice idea to perform SNB. (I'm cynically suspicious about this, of course.) He agreed that it was not truly necessary to do it in this case right now. He then reassured me that he would not do the SNB and that we could IV the arm on the side of the surgery rather than my at-risk arm.

I think he really believes that if you have SNB, there's almost zero risk of LE. This is very frustrating. I told him that's not true at all and that patients are developing LE after SNB. I said that if this possibility arises again, which it may if I choose mastectomy after all this, that we would have to talk about some kind of compromise to avoid having any more nodes removed, ever. I told him that's how much I cannot deal with it! I have no idea if there really is a solution there but I'm glad I voiced the concern.

kira66715

Lisbeth, unfortunately there was a recent study by the Mass General group where they looked at SNB for prophy mx--with the idea that you couldn't do one later, if pathology was found, and they "concluded" that there is no risk of LE with a SNB for prophy mx!

But, if you read their article in its entirity, it was a poorly done study, follow up was highly variable, and the graph that indicated LE with SNB actually showed that it was increased.

So, another study in the literature to reinforce your surgeon's belief that SNB is without risk of LE: well, I got LE three weeks after SNB. It does confer risk of LE.

Doing surgery "to put your mind at ease" when there is no medical need just isn't indicate, IMO.

Here is the abstract, and although they have a perometer, they relied on a survey, and it was just so poorly done, but check out the conclusion:

http://www.ncbi.nlm.nih.gov/pubmed/22941538

Breast Cancer Res Treat. 2012 Oct;135(3):781-9. doi: 10.1007/s10549-012-2231-1. Epub 2012 Sep 1.

Sentinel lymph node biopsy at the time of mastectomy does not increase the risk of lymphedema: implications for prophylactic surgery.

Miller CL, Specht MC, Skolny MN, Jammallo LS, Horick N, O'Toole J, Coopey SB, Hughes K, Gadd M, Smith BL, Taghian AG.

Source

Department of Radiation Oncology, Massachusetts General Hospital, Boston, MA 02114, USA.

Abstract

Women diagnosed with or at high risk for breast cancer increasingly choose prophylactic mastectomy. It is unknown if adding sentinel lymph node biopsy (SLNB) to prophylactic mastectomy increases the risk of lymphedema. We sought to determine the risk of lymphedema after mastectomy with and without nodal evaluation. 117 patients who underwent bilateral mastectomy were prospectively screened for lymphedema. Perometer arm measurements were used to calculate weight-adjusted arm volume change at each follow-up. Of 234 mastectomies performed, 15.8 % (37/234) had no axillary surgery, 63.7 % (149/234) had SLNB, and 20.5 % (48/234) had axillary lymph node dissection (ALND). 88.0 % (103/117) of patients completed the LEFT-BC questionnaire evaluating symptoms associated with lymphedema. Multivariate analysis was used to assess clinical characteristics associated with increased weight-adjusted arm volume and patient-reported lymphedema symptoms. SLNB at the time of mastectomy did not result in an increased mean weight-adjusted arm volume compared to mastectomy without axillary surgery (p = 0.76). Mastectomy with ALND was associated with a significantly greater mean weight-adjusted arm volume change compared to mastectomy with SLNB (p < 0.0001) and without axillary surgery (p = 0.0028). Patients who underwent mastectomy with ALND more commonly reported symptoms associated with lymphedema compared to those with SLNB or no axillary surgery (p < 0.0001). Patients who underwent mastectomy with SLNB or no axillary surgery reported similar lymphedema symptoms. Addition of SLNB to mastectomy is not associated with a significant increase in measured or self-reported lymphedema rates. Therefore, SLNB may be performed at the time of prophylactic mastectomy without an increased risk of lymphedema.

A read of the entire study, and it's just so poorly done, so much for Mass General....doesn't support the conclusion. IMO.

A failure of evidence based medicine is: garbage in/garbage out. And so many surgeons will just read the title, or maybe the abstract.

Kira

Lisbeth

Thanks Kira. What did you observe in the study methods that indicate that the study was poorly done? Appreciate your insight.

Beesie

I just signed on and haven't had a chance to read the full study, but I'm a research junkie (and have worked with a lot of research (non-medical) over my career) so Lisbeth, your question caught my attention.

The first thing that sticks out to me is the small sample size.  The base of comparison was women who had the MX with no nodes removed, and that was only 37 of the 234 mastectomies.  With such a small sample, the difference between the two groups (no nodes removed vs. SNB) would have to be quite large in order to be statistically significant.  So this means that even if there was a difference, if it wasn't large enough to get past the statistical significance bar, the official finding of the study would be that there is no difference.  I've seen this happen before with lots of small studies.  They can be quite misleading in this way.  The result might be 85% significant (which in my business would have been enough to consider it a valid / actionable result), but if it's not 95% significant (I believe that medical studies all use the 95% bar) then the result isn't considered valid. 

That's my first take on this study. 

Lisbeth

Thanks Beesie for this clarification! Makes sense.

kira66715

Lisbeth, sorry I didn't get back to you:

They studied a small number of women over the period of 2006-2011.

The amount of follow up was variable and short: "The median number of follow-up measurements after the 3 month post-op period was three per patient with a range of 1–9."  (So they included women with one follow up in their analysis.)

In their conclusion they state: Although it was not found to be of statistical significance in this analysis, our data suggests a trend toward increased lymphedema symptoms reported by patients with SLNB compared to those without axillary surgery. This should be further explored in a larger sample of patients with greater follow-up. Opponents of prophylactic SLNB also note that the incidence of an occult invasive cancer detected at the time of prophylactic mastectomy is rare.

Also: Our study is limited by its retrospective nature, the non- randomized selection of patients for SLNB versus no nodal analysis at the time of mastectomy, and the relatively small sample size. Of note, the mean length of follow-up for the cohort who underwent modified radical mastectomy was 1 month greater than follow-up for patients who underwent mastectomy with or without SLNB. This should not result in a bias as most patients returned to follow-up at 3 month intervals. Symptoms associated with lymphedema may be under-reported since this information was captured at the most recent follow-up, at which time patients may not have been able to recall symptoms that occurred at an earlier time. Finally, our analysis included mastectomies per- formed for both treatment and prophylactic purposes.

So, rather than a prospective randomized study, this was a retrospective study, subject to bias, with short follow up and variable follow up.

They used both perometer and a survey as their methods of measurement.

And yet, they firmly conclude, that SNLB causes NO LE in the setting of a prophylactic mx.

I couldn't copy it, but there is a graph in the study that clearly shows increased incidence of LE in the SLNB patients.

They argued in the study that althought SLNB causes LE in 3-11% of women with lumpectomy, this may not be the case in mastectomy. Maybe, but this study doesn't prove it.

So, the yield is tiny, and the potential harm could be life long, and rather than say there was a trend toward LE in patients with--likely unnecessary SLNB--in the setting of prophy mx--they firmly state a conclusion they did not prove, IMO.

And few physicians will look up the article and read it. They'll just cut to the chase.

Kira