lymphedema after snb

Rachelvk, when I was reviewing the LBBC LE info, she talked about a tennis pro who did develop LE, but immediately went back to 5 hours on the court/day. The OT said, ideally, she should have worked up to it, but this was her life.

I think, if you go back to fencing in a mindful manner, gradually, you shoud be fine. And it's clear that it's something you love, and you don't want to give up something you love.

Just my opinion, but I vote that you fence.

Kira

Binney, I wish I had seen your post earlier!  I just took off the sleeve, had it on since 10 this morning.  I really didn't even feel it all day except that I couldn't move my fingers as easily as without the glove on.  I took it off and my hand was swollen.  There was a line around my wrist from the sleeve.  I think it must be too tight at the wrist.  I e-mailed my pt, will see what he says about it.  I celebrated getting the sleeve by eating some leftover Halloween chocolate.   Am hoping to celebrate the end of rads next Friday a little more.  Maybe I'll get some more expensive chocoalte.  BTW, chocolate covered pretzels are my favorite food in the whole world.  I would never turn down a good brownie though.

Thanks Binny!  I am not done rads until next Friday.  I did get a glove with it.  Maybe the glove isn't tight enough?  I think it is, I think the problem is the sleeve is just too tight around the wrist, but maybe it is the glove. 

Even though I'm not done rads yet, I'm loving the cyber chocolate covered pretzels!  I think I earned them any way.  Thanks!

I know this thread has wandered into many different places, but today, I did a pubmed search for LE and SNB, I found articles that said that only 4% of women got LE and had a low correlation with their perception and then I found this older article by the great Jane Armer:

http://www.ncbi.nlm.nih.gov/pubmed/15328760 

Lymphology. 2004 Jun;37(2):73-91.
Lymphedema following breast cancer treatment, including sentinel lymph node biopsy.
Armer J, Fu MR, Wainstock JM, Zagar E, Jacobs LK.
Source
MU Sinclair School of Nursing, University of Missouri-Columbia, Ellis Fischel Cancer Center, Columbia, Missouri 65211, USA. armer@missouri.edu
Abstract
To compare the occurrence, signs, and symptoms of lymphedema (LE) the arms of women after axillary lymph node dissection (ALND), sentinel lymph node biopsy (SLNB), combined SLNB and ALND (Both), or neither as part of breast cancer diagnosis and treatment, a concurrent descriptive-comparative cross-sectional four-group design with retrospective chart review was carried out. In a convenience sample of 102 women treated for breast cancer and receiving follow-up care at a midwestern United States cancer center, sequential circumferential measurements at five selected anatomical sites along both arms and hands were used to determine the presence of LE (> or = 2 cm differences between sites). Participants self-reported LE-related signs and symptoms by interview and completion of the Lymphedema and Breast Cancer Questionnaire (LBCQ). Retrospective chart review was carried out to verify lymph node-related diagnostic and treatment procedures. Based on node group, LE occurred as follows: 43.3% (29 of 67) of women who underwent ALND alone; 22.2% (2 of 9) of those who underwent SLNB alone; 25.0% (3 of 12) of those with combined SLNB and ALND; and 22.2% (2 of 9) with neither SLNB nor ALND. LE-related symptoms were reported by women who underwent ALND alone, SLND alone, combined SLNB and ALND, and neither. Among the node groups, three symptoms were more common: larger arm size, firmness/tightness in past year, and numbness in past year. We conclude that circumferential measurements of the upper arm and forearm may be critical for distinguishing LE from no LE. Overall, the proportion of women who experienced LE-related signs and symptoms was higher among women who underwent ALND versus SLNB. However, numbness and tenderness frequently were reported by those undergoing ALND, SLNB or both; and by women without LE. It is possible that some frequently occurring symptoms, such as numbness and tenderness, may be related to breast cancersurgery and not LE. Findings from this study can assist health professionals in educating women with breast cancer about LE risk factors, as well as early detection and management of LE by using the LBCQ and sequential circumferential arm measurements to evaluate limb changes subjectively and objectively concurrent with each breast cancer survivor's follow-up care.
And from Sloan Kettering where none of their patients get LE--and of 600 women, only 18 (??) "perceived LE":http://www.ncbi.nlm.nih.gov/pubmed/2146531 0nn Surg Oncol. 2011 Oct;18(10):2866-72. Epub 2011 Apr 5.
Morbidity of sentinel node biopsy: relationship between number of excised lymph nodes and patient perceptions of lymphedema.
Goldberg JI, Riedel ER, Morrow M, Van Zee KJ.
Source
Breast Service, Department of Surgery, Evelyn H. Lauder Breast Center, Memorial Sloan-Kettering Cancer Center, New York, NY, USA.
Abstract
BACKGROUND:
Sentinel lymph node biopsy (SLNB) is associated with reduced morbidity, although lymphedema remains a significant complication. Previously, we found no association between number of excised lymph nodes (LNs) and measured lymphedema in SLNB patients. In this analysis, we examined the relationship between number of LNs excised during SLNB and patient-perceived lymphedema.

METHODS:
A total of 600 women who underwent SLNB for breast cancer were prospectively studied. Measured lymphedema was evaluated by circumferential bilateral upper-extremity measurements taken preoperatively and 3-8 years postoperatively. Patient-perceived lymphedema was evaluated by interview at follow-up. The relationship between lymphedema, total LNs excised, and clinicopathologic variables was assessed with Fisher's exact test, Wilcoxon rank-sum test, kappa statistic, and McNemar's test.

RESULTS:
At a median of 5 years, 18 (3%) patients reported perceived lymphedema. More LNs were excised in patients with perceived lymphedema compared with those without (median, 5.5 vs. 3; p = 0.01). Only 6 of 18 women with perceived lymphedema had objectively measured lymphedema (kappa = 0.22). Patients with numbness more likely reported perceivedlymphedema (p = 0.03) and had more LNs excised (p = 0.02). Women with surgery on the nondominant axilla were less likely to perceive arm swelling, regardless of the presence of measured lymphedema.

CONCLUSIONS:
After SLNB alone, patient-perceived lymphedema is uncommon, but its prevalence increases with more LNs excised. There is poor agreement between patient perceptions and objective measures. Our data suggest that factors other than limb enlargement, such as sensory nerve injury resulting from retrieval of more LNs and laterality of surgery, may play a significant role in patient perception of lymphedema after SLNB.

And the huge Adjuvant Breast and Bowel Studyhttp://www.ncbi.nlm.nih.gov/pubmed/20648579 J Surg Oncol. 2010 Aug 1;102(2):111-8.
Morbidity results from the NSABP B-32 trial comparing sentinel lymph node dissection versus axillary dissection.
Ashikaga T, Krag DN, Land SR, Julian TB, Anderson SJ, Brown AM, Skelly JM, Harlow SP, Weaver DL, Mamounas EP, Costantino JP, Wolmark N; National Surgical Adjuvant Breast, Bowel Project.
Source
University of Vermont College of Medicine, Burlington, Vermont 05405, USA. takamaru.ashikaga@uvm.edu
Abstract
BACKGROUND AND OBJECTIVES:
Three year post-surgical morbidity levels were compared between patients with negative sentinel lymph node dissection alone (SLND) and those with negative sentinel node dissection and negative axillary lymph node dissection (ALND) in the NSABP B-32 trial.
METHODS:
A total of 1,975 ALND and 2,008 SLND node negative breast cancer patients had shoulder range of motion and arm volumes assessed along with self reports of arm tingling and numbness. Relative shoulder abduction deficits and relative arm volume differences between ipsilateral and contralateral arms were calculated.
RESULTS:
Shoulder abduction deficits >or=10% peaked at 1 week for the ALND (75%) and SLND (41%) groups. Arm volume differences >or=10% at 36 months were evident for the ALND (14%) and SLND (8%) groups. Numbness and tingling peaked at 6 months for the ALND (49%, 23%) and SLND (15%, 10%) groups. Logistic regression correlates of residual morbidity included treatment group, age, handedness, tumor size, systemic chemotherapy, and radiation to the axilla.
CONCLUSIONS:
Although residual morbidity for both treatment groups was evident, the results of the NSABP B-32 study indicate the superiority of the SLND compared to the ALND treatment approach relative to post-surgical morbidity outcomes over a 3-year follow-up period.
  So, what is the incidence of LE after SNB? 22%? 4%? 8%? Since there is no one diagnostic criteria, and per the second study, our perceptions are usually wrong, who knows.Kira 

Dawn-Hope: Jane Armer used 2 cm, the other study used >10% , Sloan Kettering used arm measurements, and I'd have to read their study to see the cut off--but I'd bet it's 2 cm, and National Breast and Bowel used >10% arm volume change (likely with the perometer). Validated surveys were used as well.

Apples and oranges?

Kira 

Well, apparently somebody needs to invent a feel-ometer. Or a percepto-puff-ometer,  to objectivize and render measurable what we feel.

Kira, these studies are real eye-openers for me. I feel more than see what I think to be LE, although what I perceive is more of an engorged feeling than any numbness or tingling. Numbness comes with the territory, doesn't it, after mx and recon? 

The real revelation for me here is that in pursuit of diagnosis, my SNB arm was measured via perometer at 10.21% greater than my non-SNB (and non-dominant) arm.  By the National Breast and Bowel measure that could be a real toss-up, no?  Now perhaps I have better insight into why an MD at the LE clinic I went to for evaluation on the fence-post about labeling it LE.

I am SO conflicted over whether what I have is really truly LE or just transient feelings, and the studies shared here more or less legitimize my befuddlement. I (finally!) have a series of appointments lined up with a CLT, as in the end I suspect the therapist will decode the mystery for me: if the therapy improves symptoms, well then, must be LE.   

Source of my conflict is whether I should proceed with revision surgery in about a month from now, stage II of my diep reconstruction.  Maybe I'm grasping at straws, hoping this is not LE, so I can ignore the little voice that says be careful about more surgery (which includes liposuction)?

Regardless, I'm still really, really steamed that I was not given any kind of straight response when I asked my BS to assess my LE risk with the SNB, which in my case, was a super abundance of caution. I might have gone a different direction had I understood my risk was greater than the stated 1-3%, accompanied by the statement that there would be no need for any LE precautions.

Thank you for the study info, Kira. 

Carol

Kira,

That last story in your post simply drops my jaw. Rules out common sense as a job requirement to treat LE, which is very, very scary.

There's a lot to be steamed about in this LE world, I am discovering!

BTW, if anyone is wondering, the Lymphedema Speaks tell-your-LE-story is coming along.  More info soon, I hope!

Carol

good word, Binney!  Hadn't thought of it from their perspective.  Great wisdom and a great reminder!

So true Binney!  I really like my PT.  I feel badly though because he is working on his doctorate and it isn't in lymphedema.   It is in cancer and orthopedic problems following mastectomy or other cancer treatment.  I hope he will continue to do lymphedema too.  I think I will take your advice and tell him how great he is (I already did tell him that I think, but I'll do it again), and tell him I hope he continues to do LE along with other PT for cancer patients.  He is a real gem.

I have to chime in and say that I love my LE therapist, too! My LE physiatrist/doctor was also fabulous, but she just took a new position in Sept. I was so sad when I learned she was leaving and actually grieved that loss. She helped me make it through my implant nightmare, giving me solid info and her personal opinion about what might be going on with my body and best choices for resolving. After experiencing an undertrained LE therapist and one that just wasn't a good fit, I am so thankful to have a great therapist. I tell her that, too, because I know she works very hard.

Sarah, while I admire Dr. Rockson and his research, the language about early detection is all too similar to the Avon White paper, which on closer reading, is a push to use bioimpedance.

Thanks for alerting us to this, and it will be interesting to see who is eligible. Interesting that they're looking for surgical data.

Kira

Be careful of "nice looking" alert bracelets.  In an emergency, you don't want them to glance at your bracelet(s) and dismiss them w/ out examination.  Which I've been told by first responders happens...  I was told that they really need to be the "utilitarian looking" sort to be more likely to get attention when you need it (an emergency when you can't speak for yourself).  

About the most change I've heard suggested, is fabrication in a nice metal. 

Not really a fashion look, but there you go.

LisaAlissa 

I had my BMX/TEs on December 5th. Three SNs were removed on the left side, all were negative.

The morning I was discharged from the hospital, an RN came in to take my BP. We got to talking about how she was a BC survivor. Next thing I knew, she had that cuff inflating around my left arm. At the same time, we looked at each other in horror and yelled NOOOOOO!!! She quickly deflated the cuff, and angrily asked where "the sign" was above my bed, stating "No BP, no blood draws on left side". I told her I couldn't help her with that one. They brought in a sign a few minutes before I checked out.

In all my pre-op appointments, I consistently asked my BS and the Breast Care Coordinator about the possibilities of LE. I was consistently told "Shouldn't be a problem!"

I am a person who hauls a heavy purse on my left shoulder, drags in all the bags of groceries from the car instead of making several trips, and digs carelessly in my garden without using gloves.

Do you think it might have been important to give me, oh, say, a slight warning about how these activities might be harmful?

All I know is that in a few weeks, I'm scheduled to attend a Post-Op class for breast cancer patients that is taught by a PT/LE "expert".Perhaps she will see fit to mention some of these precautions.

Sheesh! Thank goodness for this forum!

Blessings, that story is way too familiar. In my hospital room, I had to insist that a nurse argue my case to get a sign posted for arm precautions. She was willing, but said she had to clear it with the breast surgeon first. The breast surgeon had emphatically told me that no arm precautions were called for, as I had 'only' SNB (5 nodes in all).  I had the impression the BS was humoring me, although the nurse definitely 'got' it and probably would have posted precautions against the BS's wishes, had the BS had the moxie to actually deny such a precaution.

Sad, sad, sad that we're put in these circumstances ever, but especially on the heels of our surgeries when energy is depleted, brains are foggy, and all you want to do is trust that the care providers will look out for our best interests.  No one ever gave me any information about LE whatsoever. As you said, thank goodness for this forum, which is where I learned what I needed to know about symptoms that indeed were early LE, and what I now know about risks and precautions.

Carol