To SNB or Not to SNB..that is the question

hurleygirly

I am scheduled for a nipple sparing double mastectomy in one week and all of a sudden today, I realize that I am not scheduled for an SNB. My situation may not be the norm in that my DCIS was found hiding in a palpable schlerosing lesion (radial scar with multiple papilomas) which was excised a few months ago. The excised biopsy was thought to at first be benign until 3 institutions/path departments diagnosed me with DCIS. I was diagnosed with Grade 2, about 5 mm I believe of DCIS and I had some solid pattern and some commedo with necrosis.

I'm only 35 and just did not want to deal with DCIS or IBC cropping up again which is why I chose a bilateral NSM. My surgeon said that I did not need the SNB and I am wondering now if I should push the issue? I do know that he removed 1/4 of the breast tissue from the excisional biopsy so I am guessing he figured that since minimal amounts of DCIS were there and he believed it to be contained, that chances that any other DCIS or even a microinvasion being elsewhere were completely low? Any advice would be greatly appreciated.

KAR

Hurleygirly:  This is a tough call, I would at least speak to another Dr about if they concur with no SNB.  Do you have an oncologist you can speak to?  My surgeon did SNB in my case but said it was very unlikely that with my dcis that it was necessary, but the thing is after they do a mastectomy you can't go back and have SNB because all the breast tissue has been removed. (if you actually do have invasive).  I struggled with this also, and was actually kinda annoyed that my SNB procedure removed 3 nodes, I was under the impression 1 maybe 2 nodes would be it.   Sorry I'm not much help but good luck with the mx, its a rough week or two but you'll be back to almost normal in no time.   Love your dog pic -so cute.

hurleygirly

Thanks KAR for your post. It is a controversial topic when you research it. I called my surgeon's office today and spoke with his admin. Hopefully he will call me on Monday. So, if I didn't get the SNB and my final path report came back with even micro invasion, I would then need another surgery to remove all of the lymph nodes on that side correct? UGH...I feel like everything is a gamble with bc! I think I will just call my oncologist and get her opinion.

I have two of these doggies (Bostons)...they are little rascals! (= 

hurleygirly

Kar, I just noticed your doggie picture! CUTE!

roseg

Your risk of lymphedema with an SNB is low, but not zero.

Surgeons often downplay this because they don't tend to live with the outcomes, but remember in your decision that there are women here who've even had mastectomies without SNB's who have lymphedema. 

hurleygirly

I spoke with my oncologist and she had told me that I had 5 mm of DCIS which was very small in her eyes and which was excised and so she told me that my chances would be extremely rare BUT she understood wanting to sleep at night and having that piece of mind so she honestly didn't know what I should do! I also spoke with my PS today who works with my BS all of the time, and she said that he usually removes a few nodes, but doesn't do the SNB all of the time for DCIS patients. I wonder how he knows which nodes he is getting? Can they distinguish the sentinel node by eye?

Dazdnfused

Hi HG!  I'm a fellow Bay Area girl!

It sounds like you had a fairly extensive biopsy because of the radial scar issue-so maybe it is all about the margins?  If your oncologist already knows you have 5mm of DCIS and you had negative margins, perhaps that is why they aren't doing the SNB.  However, it seems like a good question to ask, since you know they will do pathology on your NSM tissue anyway.  You seem so smart for being so young and after reading more about you on your situation, it looks like you are really thinking this through in planning for future children.  

We have so many great breast care centers in the Bay Area and most of the care providers-BS, Onc., Radiologists, etc. are never offended if you push them for every possible scenario and question.  I would direct this question right back to them again and explain all your concerns.  Even if you feel like you are asking the same thing, it doesn't matter.  Until you get a feeling of confidence in the SNB issue, you should keep pushing for clarity about it.  (And that is easier said than done...)

I don't believe the surgeon can distinguish the SNB by eye-I believe that it either must be traced with dye, made radioactive prior to surgery and found with a "geiger counter" type of device, or in some cases, both.  But I'm not a doc either!  

You take great care of yourself!  It's so exciting that you are going to start a family soon-those kids are going to have a great mom!  Since we are both in Bay Area, feel free to private message me any time! 

Beesie

No, a doctor absolutely cannot identify the sentinel node by eye.  In fact, even with the full SNB procedure with the injection of the dye and/or isotopes, it's not always easy to find the right node.  This is why it's always recommended that SNBs be done by surgeons who are experienced in the procedure - you don't want a surgeon who only occasionally does SNBs to be doing yours!

I had a mastectomy and had an SNB but I had no choice - my microinvasion of IDC had already been found during my excisional biopsy.  And even it if had not been, with 7+cm of high grade DCIS with comedonecrosis, my risk of invasion, and therefore my need to have an SNB, was high.  If I'd been in your shoes, with 5mm of grade 2 DCIS, and knowing what I know now, honestly I don't think I'd go for the SNB.  Having had one, I'm now in a position where for the rest of my life, I have to watch out for my SNB arm. Once you have nodes removed and you mess with the lymphatic system, lymphedema becomes a possibility - and it's not just an immediate risk but could occur years later.  So I don't get blood draws or blood pressure taken on that side, and if I get a scratch or a cut, I immediately put on antibiotic ointment.  I'm always conscious that something could happen to trigger lymphedema and once you have lymphedema, it's there for the rest of your life. 

I had read that the rate of lymphedema after an SNB is about 3% but recently someone else posted a study that showed the rate to be 7%.  That's not high by any means but it's high enough for me to always take precautions.  In your case, with 5mm of grade 2 DCIS, I would guess that the chance that you might have some invasive cancer - which would trigger the need to check your nodes - is probably in the range of 5%.  So the risk you expose yourself to from the SNB is probably about equal to the risk that you might have invasive cancer (and therefore need the SNB).  It's a tough call.

hurleygirly

Hi Dazednfused! What a small world.

My situation was super bizzaro. A week after my excisional biopsy, the hospital pathology came back benign, then a week later, Stanford pathology thought they spotted DCIS in it but weren't 100% sure so my biopsy went to a private Bay Area pathologist whom used to be at Stanford. He thought that it was DCIS and then a week after that, my biopsy was sent to Vanderbilt. 3 out of 4 pathology departments concluded DCIS, but it took a month to get the final diagnosis and all 4 places thought that I had the strangest specimen. Maybe it is sitting in a museum right now! The strange part is, that this lump that was removed has been there since I was 22 and I am now 35...never grew...doctors never thought anything of it!

I digress, but I honestly don't know if even the last diagnosis was right. I have had it with 3 months of back and forth with all of this. Back in January, before my excisional biopy, I was told I had IBC and then 4 days later, was told it was a mistake and was a radial scar! It's been a lousy roller coaster ride and my choice in double mastectomy was to make a very drastic move that hopefully would really, really, really limit my chances of any of this stuff happening again. Fingers crossed.

This SNB thing is the last part I am just so decided on. This is a tough one!

Beesie—I totally was confused when both the oncologist and PS told me that he can check my nodes and remove some while in surgery without doing the blue dye. I did ask the PS about the sentinal and she said that he knows what he is doing (um,I really have no idea what that means exactly). I do know that my particular BS is the surgeon to go to here in the Bay Area...he only does breast cancer and has been doing it for over 20 years BUT I am still going to ask him on Monday exactly what he has planned. It's hard trusting another person's judgement especially when it comes to your life! You are right in that this ia a tough call. I feel like evrything has been a tough call these days. Nothing is black and white. I just want to get through this mastectomy and move on. I sometimes wonder if I will ever be the same. I hope so.

Beesie

If your surgeon is going to be removing nodes without using the blue dye or radioactive tracer, then in all likelihood he is going to remove the entire first level of nodes.  That's probably fine, in terms of ensuring that he gets the sentinel node, but it means that he may be removing more nodes than necessary.   And that increases your risk of lymphedema.  

The thing about lymph nodes is that they are often all clumped and stuck together.  So finding and removing the sentinel node, without benefit of the dye/tracer, is pretty much impossible. Taking out the whole clump or the whole first level of nodes, on the other hand, is much easier.  With an SNB, the dye and radioactive tracer is injected into several locations, either in the tumor or around the nipple. If all the injections travel through the breast and then converge at the same node, that's the sentinel node.  Usually 1-3 nodes will be removed - the sentinel node and sometimes the one or two nodes that follow.  With a full axillary node dissection, the blue dye and radioactive tracer aren't used; instead, the entire first 2 levels of nodes are removed.  My guess is that without doing an SNB, but given your very low risk of lymph node invasion (well under 1%, based on your pathology), your surgeon plans to do something in-between, removing just the first level of nodes.

They give a fairly good explanation of lymph node removal on this website:  http://www.breastcancer.org/treatment/surgery/lymph_node_removal/

And there's another website with a good explanation of the procedure:  http://www.emedicinehealth.com/sentinel_node_biopsy/article_em.htm

hurleygirly

Beesie, if I were to forego any lympnode removal and my final path report came back clear, I would be in the clear correct? I would only have to worry about a path report coming back with a form of mico invasion or ibc right?

Thank you for helping me on this issue. It's another choice I don't want to make!

Beesie

Yes, that's right.  The reason that women with DCIS sometimes have SNBs is not because of the DCIS but because of the risk that some invasive cancer might be found once all the breast tissue has been removed and examined under a microscope.  Those who have a diagnosis of pure DCIS do not need to have an SNB.  But with even just a microinvasion of IDC (i.e. 1mm or less), there is approx. a 10% risk of lymph node invasion.  So any amount of IDC means that the nodes must be checked. 

Because SNBs cannot easily be done after a mastectomy (because there is no breast in which to inject the dye and the radioactive tracer; axillary node dissections, which don't need these injections, can easily be done), women who have high risk DCIS that appears most likely to be hiding invasive cancer often have an SNB when they have a mastectomy, just in case some invasive cancer is found. This saves them from possibly needing to have more nodes removed later (because an SNB can't be done after the mastectomy), should invasive cancer be found. The types of DCIS that are highest risk to have a microinvasion are grade 3 DCIS, DCIS with comedonecrosis and/or when there is a lot of DCIS (at least 2cm; some say at least 4cm).  While on average about 15% of women who initially have a diagnosis of DCIS from a biopsy are subsequently found to have some invasive cancer, obviously the percent is higher for those who have this riskier DCIS vs. those who have less risky DCIS.  Your preliminary diagnosis, with less than 1cm of DCIS and being grade 2, isn't right at the bottom of the risk scale but I'd say it's on the lower half of the scale.  That's why I said in my earlier post that you probably have about a 5% chance that something more than DCIS may be found - that's just a guess but it's probably in the ballpark. 

Given that your surgeon doesn't plan to do an SNB anyway, you could wait and not have any nodes removed during your mastectomy surgery.  If it turns out that you have a microinvasion, then you could have the type of node removal that your surgeon is planning to do anyway. 

hurleygirly

Thanks Beesie,

My path reports are just so odd. One report states 5mm of DCIS. Another report states that there are at least 5 foci up to that size which completely confuses me because does that mean 5 areas of 5 or 5 foci that totals 5mm. Ugh. I have both solid and cribriform showing some areas of central comedo-type necrosis.

I just feel that I am so inthe middle! I can tell you that my biopsy perplexed many pathologists. It would just be a bummer to find out later that I needed the axilla dissection. It would be on my right side and that is the side I do everything with. Ugh..frustrating!