I'm confused, can you explain how your mastectomies were unsuccessful? And what does BMX mean to you?

Amy

My best friend had a BMX in late April for DCIS in one breast and ADH in the other. She had 3 nodes removed for SNB on each side, fortunately negative. She had her surgery in a major SW suburban teaching hospital (Advocate Christ, whose residency program is part of UIC Med. School) with a highly-respected breast cancer program (not coincidentally, the same hospital where my husband is her cardiologist). OTOH, I am being treated at NorthShore Evanston Hospital’s Center for Breast Health and NorthShore Kellogg Cancer Center--equally well-respected, a teaching hospital for the University of Chicago’s Feinberg School of Medicine and affiliated with the Mayo Clinic. (In other words, Steph Curry vs. LeBron James). I had a lx, with 4 nodes out (also all negative). I developed intermittent cording and stage 0 LE despite following standard precautions for no needles or BP on the surgical-side arm. She is a good 60 lbs. heavier than I am and thus at far greater LE risk (although I had rads and she didn’t need them). Nonetheless, when I asked her surgeon and nurse-navigator about LE precautions, they said with SNB, LE is infrequent, that blood draws & I.V.s are okay as long as tourniquet time is minimal and infection precautions are followed; and the surgeon said that since LE is treated with compression, on an asymptomatic arm the brief compression of a BP cuff should be harmless. By contrast, both my surgeon’s NP and my LE specialist (who founded LANA) urge no BPs or needle sticks on the surgical side unless utterly unavoidable and absolutely necessary. (The exception, says my LE doc, is cortisone shots for trigger thumb, as well as tendon-release or carpal-tunnel surgery, so long as tourniquet time is brief and scrupulous antiseptic measures are taken--the long-term stress and pain of the tendosynovitis or the carpal-tunnel syndrome might be likelier to flood the area with lymph fluid than is the remedy).

So pick your opinion. It’s a tossup.

Dragon, from your description it appears you do not have invasive cancer. What makes you think they would be removing lymph nodes during BMX?

I basically do what ksusan does, but I also have a chemo port so can have blood draws taken from it as well, but only at the infusion center. Staff in other doc's offices (BS, PS, PCP) don't have this capability. I have bi-lat lymphedema, with my cancer/ALND side worse than my side that had only 2 nodes taken. I realize this is a crapshoot - am not endorsing this for anyone else, but I have excellent veins and it has been almost 6 years since that surgery, so I continue to roll the dice. My LE was not caused by any needle sticks or BP cuffs - it was caused by a sudden swelling event during chemo.

Hi Muska:

Even with apparently pure DCIS, if treated by mastectomy, it is within NCCN guidelines (Version 2.2016) to perform a sentinel node biopsy ("SNB"). SNB is appropriate to consider in view of the overall 10-20% risk of finding invasive disease at surgery, and because the mastectomy procedure disrupts the lymph channels, which must be intact for successful mapping and identification of the sentinel nodes. The NCCN guidelines note:

". . . a small proportion of patients with apparent pure DCIS will be found to have invasive cancer at the time of their definitive surgical procedure. Therefore, the performance of a sentinel lymph node procedure should be strongly considered if the patient with apparent pure DCIS is to be treated with mastectomy or with excision in an anatomic location compromising the performance of a future sentinel lymph node procedure."

In my case, in late 2013, with a diagnosis of extensive, apparently pure DCIS, both opinions (including the opinion from Mass General Hospital) recommended mastectomy with sentinel node biopsy.

With prophylactic procedures, a decision about SNB must be made in light of risk profile and imaging results, preferably including MRI. Members here have elected mastectomy without SNB for purely prophylactic procedures. Others have been able to request mapping of the sentinel node(s) on the prophylactic side, such that if the post-surgical pathology of the breast tissue reveals the presence of invasive disease, the marked sentinel nodes can be removed and assessed in a later procedure.

BarredOwl

Hi Dragonsnake:

I had 1 node removed on the left and 4 nodes on the right. I am right-handed. I have not been able to avoid all such procedures, but luckily nothing bad happened. If I can't avoid a procedure, it is done on left (non-dominant) side, which also had fewer nodes removed (1 nodes).

Arm blood pressure was monitored continuously while in recovery after bilateral mastectomy (and I suspect during the surgery itself). Manual readings were taken at intervals during the overnight hospital stay after surgery.

I had blood pressure taken on my left arm a few weeks after surgery, and it was so painful (perhaps due to cording) that I have since refused any arm readings at routine examinations. I request a "thigh cuff" (used for people whose arms are too large for the standard arm cuff). They place the stethoscope behind the knee and obtain a reading from the popliteal artery, and the readings were accurate the few times I had this done. My PCP did it herself.

During a colonoscopy, I had a left hand-IV. The hospital policy was that foot IVs are only used after axillary dissection, but not sentinel node biopsy. During the colonoscopy, continuous blood pressure readings were also taken on the left arm (1 node). This reflects a risk/benefit analysis (e.g., sudden dangerous drop in pressure while under).

I have been having blood drawn from the foot (with an order from the treating hospital, which is good for one year). Usually, I have to wait around for an experienced nurse. I guess foot draws present their own risks (somewhere here there is a thread about it), but my arm veins are very small and present a challenge, and I don't need anyone digging around in there with a needle,

I have chosen not to wear preventive sleeves and glove/gauntlet for air travel (~6-7 hour flights), but others chose differently.

For more information, see these sites:

http://www.stepup-speakout.org

http://www.lymphnet.org/le-faqs/nln-position-papers

BarredOwl

Thanks, BarredOwl. I have two questions you might be able to answer. If it's not easy, no worries--I just haven't had time to pull the article yet.

1. What does "RLNR" stand for? I assume it's "X lymph node removal" but I'm not familiar with it.
2. In the same statement you quoted, "Patients who have a BMI [greater than or equal to] 25 lb/in2, underwent ALND or RLNR, and have had an episode of cellulitis..." I'm interpreting the "and" as additive--X plus Y plus Z, rather than as an "or"--X or Y or Z. Is that how you interpret it? I've found the grammar in the parts of this article that I've read to be a little ambiguous.

Thanks.

Hi ksusan:

Thanks for the questions, and I edited my post above to explain the abbreviations.

(1) RNLR = regional lymph node irradiation

(2) It is not exactly clear to me either. My understanding is not aided by my struggle to understand what "univariate" and "multivariate" analysis mean. I think methods of univariate statistical analysis assume that the variables under analysis are unrelated, while multivariate analyses attempt to address the possibility of some relationship between risk factors. Or not, who knows? In this case:

"The multivariate model was chosen by starting with a model that included all variables that were significant at the .10 significance level in the univariate analysis, as well as all nonprecautionary behaviors, and removing one variable at a time until only significant (P < .05) variables remained. Because cellulitis is in the causal pathway between the risk events and arm volume increase, it was not included in the model selection process to avoid overadjustment bias."

My layperson's take on what is intended (and I could be wrong) is that any of the four factors alone is a risk factor, based on other language in the text, and the way the data is presented separately for each risk factor:

"By multivariate analysis, factors significantly associated with increases in arm volume included body mass index [greater than or equal to] 25 (P = .0236), axillary lymph node dissection (P < .001), regional lymph node irradiation (P = .0364), and cellulitis (P < .001)."

"In our study, BMI [greater than or equal to] 25 lb/in2 at diagnosis, ALND, RLNR, and cellulitis were significantly associated with arm swelling. High BMI, RLNR, and ALND are consistently cited in the literature as risk factors for arm swelling and lymphedema, and our data further support these claims."

Fig 2. Multivariate analysis of risk factors associated with arm volume increases. ALND, axillary lymph node dissection; BMI, body mass index (in lb/in2); RNLR, regional lymph node irradiation; RVC, relative volume change; WAC, weight-adjusted volume change:

The results for cellulitis in particular are worth noting, and should provide added motivation for maintaining skin integrity through precautions like avoiding sunburn and insect bites and wearing gloves for gardening or household chores.

BarredOwl

Here's what I found on the NCI website: National Cancer Institute. The section about Sentinel Node Biopsy - I suppose the OP would be getting SNB - reads:

"For patients with breast cancer, sentinel lymph node dissection has gained favor over axillary lymph node dissection for the axillary staging of early disease because of decreased morbidity and because of the questionable survival benefits of axillary lymph node dissection, as shown in a phase III randomized study (ACOSOG-Z0011) of axillary lymph node dissection in women who had stage I or IIA breast cancer and a positive sentinel node.[18][Level of evidence: I] Several studies have shown that lymphedema is more prevalent in breast cancer patients who undergo axillary lymph node dissection than in those who undergo sentinel lymph node biopsy.[19][Level of evidence: II] One study evaluated 30 patients with unilateral invasive breast carcinoma who underwent sentinel lymph node biopsy and 30 patients who underwent axillary lymph node dissection. This study found a 20% rate of developing lymphedema in the axillary lymph node dissection group compared with none in the sentinel lymph node biopsy group.[19] Rates of lymphedema among women who undergo sentinel lymph node biopsy have been reported to be between 5% and 17%, depending on the diagnostic threshold and length of follow-up.[20-22] The majority of diagnosed lymphedema is mild.[21][Level of evidence: II]"

Hi dragonsnake:

Be sure to distinguish "sentinel lymph node biopsy" (SNB, SNLB) which removes one to a few nodes and has a lower incidence of lymphedema, from "axillary lymph node dissection" (ALND) procedures entailing the removal of many more nodes, with a higher associated incidence of lymphedema. SNB is a form of axillary staging, and the terminology used in the scientific literature is inconsistent and can be confusing.

This paper notes (parenthetical added by me):

http://oncology.jamanetwork.com/article.aspx?articleid=2239092

"The SLNB is known to reduce both short- and long-term surgical complications compared to ALND.(46- 48) However, some risks remain, with a reported incidence of 6% to 7% for lymphedema and 3% to 9% for paresthesias [with sentinel lymph node biopsy], compared with rates of 11% to 75% for lymphedema and 19% to 68% for paresthesias in patients undergoing ALND."

BarredOwl

Hi dragonsnake, lymphedema is certainly a concern but please keep in mind that surgical techniques have improved over years and SNB is less invasive/risky than ALND.