Prophylactic Mastectomy... SNB necessary?

As in all things LCIS, it is controversial.  It may depend on your individual situation, but the NCI said there is no need for nodes if nothing worse than LCIS is found. 

Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS.

1. Observation after diagnostic biopsy.
2. Tamoxifen to decrease the incidence of subsequent breast cancers.
3. Breast cancer prevention trials, including the National Cancer Institute of Canada's trial (CAN-NCIC-MAP3 [NCT00083174]), for example.
4. Bilateral prophylactic total mastectomy, without axillary node dissection http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5

 Your doctor may not agree with this, and/or your situation may be different.  If I were you, I'd ask him/her about his/her thought process in your situation,  and see if it makes sense to you.

If you have pleomorphic LCIS, then this may not apply to you either, because they know even less about PLCIS than LCIS. Lots is NOT known with LCIS, and LCIS is different than DCIS in many respects.

This article opines there there MAY be a place in SNB for LCIS PBMs. However, patients at higher risk for whom SLN surgery should be considered include older women and patients with a history of lobular cancer or LCIS.http://www.ncbi.nlm.nih.gov/pubmed/16955504

My good breast had a small amount of LCIS and my BS did to a SNB. In my case 4 nodes lit up so he took all 4. Ideally they don't take more than 1 or 2 but in some cases they can take up to 6.

I do have LE in my 10 node side but so far I don't in my 4 node side. I still won't do blood draws and BP in either arm. I'm not taking any chances since I already have LE in one arm.

Thank you, Anne!  shabby - yes, most (not all,but most) oncologists do NOT consider LCIS is cancer.  Some do, but most don't. 

Even if they do consider LCIS as cancer, that doesn't change what they know of the disease - by definition, LCIS is restricted to INSIDE the lobules and ducts. 

Here's an analogy: The network of lobules and ducts in the breasts are like a twisted sagebrush - or a complicated, twisted series of streets (ducts) that have dead ends (lobules).   The streets (ducts) intertwine but almost never intersect.  (They don't know if the lobules intersect because they're too complicated.)  Normally, there is a single row of nice shiny new <insert your favorite small car name here>  lining the street.  The LCIS cells are like big bashed up cars that not only line the street, they also fill up the  paved streets at the dead ends.  At the dead ends, these bashed up cars fill up the entire dead ends.  (LCIS is sometimes said they look like 'marbles in a bag', to mix metaphors.)  The basement membrane is like the sidewalks that line all the streets and dead ends.  By definition, if they saw any of the big bashed up cars that drove up the driveways that had driven up the driveway, past the sidewalk (the basement membrane), into the area where the houses are, then you'd have invasive breast cancer.

Hi Shabby-

I'm getting close to the decision about BMX as well.  Like you, I was wondering what they do about SNB, because if they found anything worse than LCIS in biopsy of tissue afterwards, they couldn't do a SNB at that point.  I'd hate for them to have to take a bunch of nodes just to see. . .   One surgeon said sometimes they do SNB, one said they do NOT, and my own br surg. said this used to be more of a concern, but now they can do some genetic testing of cells to help determine how to treat.  I still don't understand how this helps them determine if c has gone to lymph nodes of not.  Will clarify this when i talk with them before the surgery.  Confusing. . .

My surgeon and second opinion surgeon both felt node biopsy was not necessary, so I didn'thave it done. I hadplain lcis, nothing more.

Shabby, is the surgeon looking to do the SNB on both sides or just the side that you just had biopsied?

Considering that you've already had an excisional biopsy - which should have removed the most suspicious area - and no invasive cancer was found, personally I think your surgeon is being overly cautious in recommending that you have an SNB.  But it's up to you. Since you do not have invasive cancer, an SNB is certainly not medically necessary - it's just being done as a precaution in case some invasive cancer is found - so ultimately the decision is yours, not your surgeon's.

As for the number of nodes removed, I never understand how a surgeon can say in advance how many nodes will be removed when he or she does an SNB.  That seems to go against what an SNB is all about. With an SNB, dye and/or isotopes are injected into the breast and given time to travel to the nodes. The premise is that the dye/isotopes will follow the same path and move into the same nodes that cancer cells would have moved to, if any cancer cells from the breast had moved into the nodes.  So the nodes that 'light up' with the dye and/or isotopes are the ones that are removed.  The problem is that until the dye and/or isotopes are injected, it's impossible to know if you have one guard node, or 2 or 3 or 4.... If 4 light up, you don't want the surgeon to remove only 2.  After all, if the dye/isotopes are able to move into 4 nodes so quickly, then it's enitrely possible that cancer cells could have moved into any or all of those nodes too - provided, of course, there was any invasive cancer in the breast that actually had the ability to move into the nodes. LCIS and DCIS do not have that ability.

I'm an analytical type so I would weigh the risk of doing an SNB vs. the risk of not doing it.  The risk of having the SNB is that you might get lymphedema.  I'm not up-to-date on the numbers but last I read, the risk of lymphedema from an SNB was estimated at about 7% - 10%; since lymphedema is not always diagnosed properly, this may be understated. The risk of lymphedema is with you for life after you have nodes removed; while most women develop lymphedema within a short period of their surgery, an injury or infection or stress to your arm/nodes could cause lymphedema to develop years after your surgery.  So if you are inclined to take precautions (not everyone does), then you will need to take precautions for the rest of your life.  And if you develop lymphedema, it's a condition that you will have for life. (Those are the basic highlights of lymphedema that I am familiar with; you will get much better info from the women in the LE forum on this board.)

What if you don't have the SNB? If no invasive cancer is found during your BMX, no problem. The SNB wasn't necessary. But if invasive cancer is found, then it becomes necessary to check your nodes. So what is the chance that some invasive cancer will be found? For those with large amounts of high grade DCIS, the risk is around 20%.  For someone with LCIS, I would think that the risk is considerably lower - maybe 5%?  Anyone know this?  Since you've had the excisional biopsy already, I would think your risk is probably quite low - this is something you might want to ask your surgeon about. 

If it is determined that your nodes need to be checked, what happens?  Generally it's assumed that an SNB can't be done after a mastectomy - after all, there is no longer a breast in which to inject the dye and/or isotopes.  I did read about one women who had the injections made into her arm. That's unusual, however.  Usually instead of an SNB, an axillary nodal dissection will be done, with removal of the first level of nodes and possibly more. Surgeons generally try to remove as few nodes as possible, particularly if the risk of nodal involvement appears to be small, but it's still likely that more nodes will be removed than during an SNB. This will leave you with a somewhat higher risk of lymphedema.

So, your choices are:  Expose yourself to a small lifelong risk of lymphedema by having an SNB that probably isn't necessary.  Or don't have the SNB but accept that there is a small chance that invasive cancer will be found and you will need a more serious procedure later.  It's your decision. 

Shabby I faced this too. Is your surgeon taking nodes from both sides?  To me, that is quite a big deal and I didn't want it.

I talked with one surgeon who "always" does SNB ev en in the context of a prophy mx.   I didn't go with her.  I had long talks with numerous doctors about the options.  My oncologist told me something very important and this totally swayed me.  He told me, "node removal does not increase survival time, it merely helps us stage your cancer."  Good enuf for me.

If figured I would skip the SNB and deal with what we might find.  My work up was exhaustive, but even that is not a full guarantee as we have seen from some ladies who had totally occult cancers come to light post MX.  However I did not want the lifetime increased risk of lymphedema and went without SNB.  It worked out for me and I am very, very often I took the chance.

I had a prophylactic mastectomy 6 months after  my original cancer mastectomy.  I had a mammo of my other breast and an area of calcification near the chest wall was found.  They did a biopsy and the biopsy came back benign.  HOWEVER, at that time I decided that I wanted that breast removed (actually I wanted it removed from the beginning but my surgeon talked me out of it) - this time she agreed with me.  We both agreed that removing any nodes....because of the the benign status of the biopsy wasn't necessary.  She did however tell me that there was a possibility that cancer would be found.  Regardless, I did not want any nodes removed. 

 Thankfully, my breast was clear of any cancer so was happy that the nodes were left alone.

That was my experience.

Mary Jo

Hi Mallory,

You are right that without their being a SNB the recovery was much different.  To be honest with you, I didn't find the 1st mastectomy with SNB that big of a deal, however, without SNB it is a much simpler recovery.  If it wasn't for the drains it would be almost nothing.  I never felt pain from either mastectomy, however, the SNB makes for a bit stiffer and sorer as far as the under arm goes.  Good luck with whatever happens.

 God is good...

Mary Jo

I had pleomorphic LCIS.  For my BMX BS and I made the decision together to skip SNB and wait for the pathology to warrant it.  I lucked out and my pathology showed nothing (not even more LCIS) so I didn't have to do the SNB.

Hello Everyone, I am recovering from BMX on 3/5/2012. I went into surgery knowing I had DCIS on right and ADH on left. My post surgery pathology report also showed LCIS in both breasts and ALH in right. No invasive cancer!  I had a SNB on both sides for peace of mind. One on left was taken and two from right. It never occured to me to ask to wait for the SNB. I'm told LCIS doesn't show up in mammograms. If that is true, how did you find out you had LCIS? AND why is LCIS not considered cancer and DCIS is?  Seems to me they are the same just one in lobe and the other in duct.  (I hope I'm not getting too far off topic)  Shannon

LCIS is usually an *incidental* finding on a biopsy.  So, for example, if they find suspicious microcalcifications or an architectural distortion on a mammogram, they often want to biopsy it.  If LCIS is found on core biopsy, its often not found *at* the site of the lesion (in other words, not *at* the microcalcifications or architectural distortion) but nearby. I think more LCIS is seen on MRI, but LCIS is not *reliably* seen on MRI. 

They often do a surgical excision after LCIS (and nothing worse) is found on a  core biopsy because there's about a 20% chance that there is something worse (i.e. DCIS or invasive) near the LCIS.

There is controversy about how to classify the in-situ carcinomas (i.e. LCIS or DCIS).  Most (but not all) oncologists consider LCIS as benign (noncancerous).  I think a lot more oncologists consider DCIS as cancerous.  But some oncologists do not consider DCIS as cancer.

Cancer means 'uncontrolled growth'.  While you can get some idea of how quickly the cells are growing by looking at how many cells are dividing in a sample, its a lot harder to directly measure them, and to tell if its 'uncontrolled'.  I've been told its easy to tell invasive breast cancer from in-situ breast carcinomas.  The in-situ breast cancers haven't invaded the basement membrane; the invasive cancers have broken through the basement membrane.

Cancer is not a 'line in the sand'.  There are clearly normal cells, and there are clearly carcinomas.  There are also some cells that have some normal characteristics and some characteristics of cancer.  So different docs can disagree on how to classify cells.  Some people get 2nd opinions on their pathology to get someone else's opinion about how to classify cells, and sometimes even experienced pathologists disagree.   Some docs think cancer should be 'the ability to kill you'- needing chemotherapy, radiation, etc.  Others don't think that way.

There is more controversy in the LCIS world than in the DCIS world.  One reason is that there is about 7 times less LCIS than DCIS, and you can more often see DCIS on a mammogram than LCIS. LCIS is a weird disease.

Yes, the excisional with LCIS is to check the adjacent area.  Yes, roughly 20% of the time they find something worse (i.e. DCIS or invasive) near the LCIS.

No, they don't know if there are other areas of DCIS or invasive around.  They do know that after you get the excisional, and if the excisional shows nothing worse than LCIS, then usually  (not always, but usually) there is ROUGHLY a 1% per year chance of getting DCIS or invasive.    Since most women get LCIS in their 40s or 50s, that means that the majority (i.e. at least 50%)  of LCIS women will never get DCIS or invasive because they will die in their 80s or 90s.  

In this Chuba study, they found a minimum of 7% of LCIS women got bc in 10 years. http://jco.ascopubs.org/content/23/24/5534.long (which turns out to be a minimum of 0.7% per year.)  Possibly because LCIS women are followed more closely, about 5% of the general population (that didn't have a history of LCIS) got diagnosed with >5cm cancers, whereas <2% of the women who had a history of LCIS got diagnosed with >5cm cancers. So they were probably catching breast cancers earlier in the LCIS women (or the LCIS women had slower growing cancers.)

If women chose not to have BMXs, the idea is a) with watchful waiting: they are trying to catch bc at an early stage or b) antihormonals cut the risk of bc by about 50% and they also try to catch the remaining cases early.

There are no 'riskless' options.  There are just the risks and benefits of each choice.

I wish no one had to make these choices.  These 'gray areas' are awful.