Risk after SNB/ Lillie Shockney gets it wrong
Comments
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Hollyann,
I'll let Jane know about the survey issue.
Did you ever see our article on axillary web, a known risk factor for LE--I ran into the LE therapist who is convinced that my hand swelling wasn't LE, and he's still convinced. I don't get it...
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Kira
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Hollyann, Jane said the old links cause problems, she gave me a new link:
http://survey.constantcontact.com/survey/a07e2sl6jfhg6p59caw/a01bogagz3zul/greeting
And, we have a link to a great article by Stanton on how LE presents in a subtle manner: here's the abstract, and I have a link to the whole article
Diagnosing breast cancer-
related lymphoedema in the armAbstract
Background: Lymphoedema of the arm may complicate breast cancer treatment, including sentinel lymph node biopsy, but when it is mild it is difficult to detect. This study considers the difficulties of diagnosing mild breast cancer-related lymphoedema particularly in relation to the natural differences between right and left arm volume.Methods: Arm volume was measured opto-electronically in 33 women treated for unilateral breast cancer and in 37 age-matched healthy women. The ipsilateral arms of the breast cancer group were also examined closely for clinical signs of lymphoedema.
Results: On the basis of clinical examination, seven of the breast cancer group were found to have (previously undiagnosed) mild lymphoedema. The difference between ipsilateral and contralateral arm volume in three of these women was within the range of dominant minus non-dominant arm volume differences in the control group (and within 2 standard deviation [SD] of the mean difference). In
the other four women, arm volume differences were outside the normal range (1-2 SD in one, greater than 2 SD in three).Conclusions: Measurement of arm volume may not detect mild lymphoedema and close inspection of the arm is necessary. Early diagnosis and treatment are essential, as are detection and reporting for healthcare prioritisation.
Conflict of interest: None.
Anthony Stanton, Stephanie Modi, Russell Mellor, Rodney Levick, Peter Mortimer
Journal of Lymphoedema, 2006, Vol 1, No 1Here's a link to the whole article:
http://lymphedema-research.org/References/Stanton2006_LymphedemaDiagnosis_arm.pdf
I'm big on this article, because it admits that LE can be subtle and the 2 cm rule is not a "gold standard"
Kira
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Thanks for the new link. With my chemobrain I assumed when it told me that I had already taken the survey that I had. I got the new link to work
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I just tried the link and it says that I have already taken the survey. Help?
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Jane had a family emergency, but I'll pass it along. Also, if you go to the stepupspeakout.org site and contact her with an email.
She struggled with that survey software. It's not user friendly, to put it mildly.
Kira
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Indeed Kira, to say the software is not user friendly is an understatement.
Yellow, please go to the front page of StepUp-SpeakOut and click on the link where it says
PLEASE CLICK TO TAKE OUR SURVEY and it should work.
Edited to say, you can clink on the above link PLEASE CLICK TO TAKE OUR SURVEY and it should take you right to the survey greeting and let you take the survey.
Please e-mail me at info@stepup-speakout.org if you are still having problems.
Thanks for your patience!
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bump. don't let this thread be forgotten.
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I recently saw a conference that Lillie is a speaker on the emotional reaction to breast cancer. I have to find where I saw it. So, she's a psychotherapist now as well? The woman who advised the tyranny of positive thought as the only acceptable response to breast cancer?
It is so amazing in academia how forceful personalities can triumph over true knowledge.
Kira
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Hi, all,
I wanted to update my posts here, because I had mentioned earlier contacting the Avon Foundation, which sponsors Lillie's website. Their director emailed me that he would look into it and get back to me, but he has not contacted me again. I did send a second email reminding him of his offer to get back to me and requesting that he help us eliminate Lillie's archived lymphedema answers, but there has as yet been no action on that from Johns Hopkins.
It seems to me that if Johns Hopkins would like our trust, they would be concerned about responding to our reports about the misinformation that riddles Lillie's lymphedema board. But Kira has never received a reply to her email to the Breast Center director, and the archived information remains on-line and available to vulnerable breast cancer patients.
Also, considering that the powers-that-be here at BCO went to the effort of looking into the matter of Lillies qualifications as a bc coach, and writing us a statement of their intentions, it would seem logical that Lillie herself, who is posing here as our "BC coach," would by now know of our efforts to rectify the situation she's created, and could herself act to remove the erroneous archives. But she has not.
There WAS one post removed, which was a question regarding the one patient Lillie claimed that had developed LE after SNB at Johns Hopkins. It was a snippy reply ("fractured her arm!"), and that question and reply has since been removed from the board. So clearly someone -- whether Lillie herself or the JH lawyers or whoever -- has reviewed the situation and thought it best not to appear to be flip. But being flip was only a small part of the problem. Being seriously misleading is more to the point.
Goodness! Such things ought not to be!
Any thoughts on how we might responsibly exert our collective pressure to move this mountain of misinformation off the web? Should we approach Lillie directly, and if so, should it be through the JH site, or here as "our" bc coach? I hate to let this drop, especially since BCO has yet to upgrade their own LE information pages, so maybe some brain storming would be in order. Anyone?
Thanks!
Binney -
Binney, I think there's a pervasive lack of responsiveness and concern, both from bc.org and Johns Hopkins and Avon.
No response from their medical director to my email, no response from the Avon person who initially was quite concerned, and no change on the LE information on bc.org.
Are we and LE that low of a priority?
The sad thing is that it wouldn't take much to post accurate information--Live Strong does it--and to remove inaccurate information from "ask an expert" archives--even just for liability issues.
We are a resource and have volunteered to help correct the information. It's too bad this hasn't become a win-win situation.
Kira
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Kira,
I'm finding this info interesting. I am going in Wednesday for surgery and will have SNB at least and maybe a complete auxillay removal. Do you have any advice in how I should treat the injury after I get home?
Karen
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I have already developed lympedema and was just diagnosed in January. Had 7 lymph nodes removed after the SNB.
One love, Jackie
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Karen--another Kira--many centers are measuring women's arms prior to surgery, so they can follow them afterwards. Some even have a pre-op visit with a lymphedema therapist for advice.
Binney discovered that limiting the use of her arm--her first surgeon didn't want her to use anything above the elbow for the first week, was helpful. I'm going to put in a link for lymphedema risk reductions:
http://www.lymphnet.org/pdfDocs/nlnriskreduction.pdf
And to our website which has a lot of information on lymphedema
http://www.stepup-speakout.org/index.htm
From the American Cancer Society:
http://www.cancer.org/Cancer/BreastCancer/MoreInformation/exercises-after-breast-surgery
We have a section on what to do while waiting for a lymphedema therapy appointment, and I think it's a good general guideline for the first week after surgery: I've highlighted the points that apply:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting
What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist
DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.
1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;
3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;
5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;
7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.
Karen, there is a condition where the lymph vessels get clotted, called axillary web, and I think it can be brought on by too much exercise, too soon, so I'd advise taking it easy for the first week or two, and don't worry about getting your range of motion back, work on it a bit later.
Jackie: I'm so sorry you joined the swell sorority. I got it with just 3 nodes out. Are you getting treatment? Is it under control? Do you have a good lymphedema therapist?
Can we help?
Kira
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I vote again for a petition. Something that clearly lays out the problem that we can get other women to sign on to and then circulate it. Directors of the program at JHU. There advisory board to breastcancer.org. I don't know that they care but lets make some noise. I don't see any point in going to her directly.
Another idea would be to get very specific -- list the precise posts we want removed from the site, to make it easy on them to do it.
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I've just found this topic and read several of the posts. Could some-one clarify what the general consensus is? Are you saying that LS is wrong for saying that LE is unlikely after a SNB? If the reported statistic is 3-7%, is that incorrect? I would only call the removal of 1 node a SNB. If it's more than 1 node then it's not technically a SNB so maybe the 3-7% only applies to a true SNB.
Or is the general consensus that even if the risk is estimated to be 3-7% then women should still follow LE precautions?
I'm just trying to understand what is being said.
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ADDIT: I just remember asking my surgeon on the day after the operation, "How many nodes did you remove?" and he answered "One! That's the whole point of a SNB!"
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The average number of nodes removed in a SNB is three. Mei Fu PhD says if 7 or more nodes are removed in a SNB, then she considers it equivalent to a ALND.
I read a lot of path reports at work, and all these surgeons write, two nodes submitted, and then in the pathology report there are 7 nodes because what they saw at surgery and what was in the axillary tissue didn't agree. I do see a couple of surgeons who are always meticulous with the counter and the blue dye and when they say three nodes, that's what it is.
There was a recent article that we all got upset about looking at the risk of LE after SNB, and they took 2 measurements on the arm, at two times---before surgery and one time after surgery and if they were 2 cm different, defined it as LE (many of the women on these boards don't have LE by that criteria--including me) and they came up with 1) 5% of women with SNB by that very insensitve method had LE and 2) The number of nodes removed did not correlate to the risk of LE.
Otter has interpreted the study, and I've sent her interpretation along to Jane Armer PhD who very carefully follows over 250 women with multiple measurements, and she agreed that the flaw was in their method of defining LE.
So, even a very insensitive study, still found a 5% incidence of LE after SNB. Makes Lillie's claims even that much more inaccurate.
Kira
My surgeon took 2 sentinel nodes, and 1 that was "there", but she left me with a whopping seroma. The study did say the disruption of the axilla was important in LE after SNB.
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thanks Kira. So what do you believe a more accurate risk percentage would be? Do you think it may be 20% or 25% for example...or more? Also why is it called a 'sentinal node' biopsy if they usually take 3? Surely that is misleading to begin with. Maybe it should just be called LND x 3 (or how ever many they take)
Can women just be given a more accurate risk percentage and then make their own decision about whether to follow LE precautions or just carry on normally. I guess it's a bit hard if you are the one being asked "Do I need to worry about LE after SNB?". what should a person say? "Yes, because we don't have accurate enough studies yet" or "No, because why worry about something that may never happen" Or should they say "Maybe, so go and do your own research and make up your own mind"
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Farrah, the thread started because Lillie Shockney has written multiple times in her "Ask an Expert" column at Johns Hopkins that no one gets LE after SNB, that only one node is removed and that LE risk reductions are unecessary--pretty much for all women.
Because they inject the breast with nuclear dye and often with blue dye, the nodes that immediately drain the breast light up--and it's usually 1-3. Otter's surgeon told her the usual number she took is three.
The false negative rate on SNB is low, but they do want to take all the "hot" nodes--it may be just one, but it's usually a couple at least.
With SNB there has been an increase in breast and chest LE, while likely there is a decrease in arm LE--yet we don't know a "real" number, because there is no one definition of LE, so it's comparing apples and oranges.
That's why the rates vary between 5-41%, because it all depends on how you measure it.
This recent study defined it as TWO arm measurements--one on the upper and one on the lower arm, done TWICE--once before surgery and one time several years later. They agreed that their method was flawed--most LE therapists measure the hand and entire arm at 4 cm intervals, and when Jane Armer does that with the 250 women she follows closely, at any one time, 91% of women have at least one measurement that is 2 cm larger than the other arm.
Here's the study:
Ann Surg Oncol. 2010 Jun 24. [Epub ahead of print]
Morbidity of Sentinel Node Biopsy in Breast Cancer: The Relationship Between the Number of Excised Lymph Nodes and Lymphedema.Goldberg JI, Wiechmann LI, Riedel ER, Morrow M, Van Zee KJ.
Breast Service, Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York, NY, USA.
AbstractBACKGROUND: Despite the reduced morbidity associated with sentinel lymph node biopsy (SLNB), lymphedema remains a clinically relevant complication. We hypothesized that a higher number of lymph nodes (LNs) removed during SLNB is associated with a higher risk of lymphedema.
METHODS: Six hundred patients with clinically node-negative breast cancer who underwent SLNB were prospectively studied. Circumferential bilateral upper extremity measurements were performed preoperatively and at 3-8 years after surgery. Association of lymphedema with total number of LNs excised and other clinicopathologic variables was analyzed by the Spearman rank correlation coefficient, Fisher's exact test, Wilcoxon rank sum test, and logistic regression.
RESULTS: At a median follow-up of 5 years, 5% of patients had developed lymphedema. Factors associated with lymphedema included weight and body mass index. There was no association between the number of LNs removed and the change in upper extremity measurements or in the incidence of lymphedema. Among patients with lymphedema (n = 31) compared to those without, the mean (3.9 vs. 4.2), median (4 vs. 3), and range (1-9 vs. 1-17) of number of LNs removed were similar (P = 0.93). Among the 33 women with >/=10 LNs removed, none developed lymphedema.
CONCLUSIONS: In this population of 600 women who underwent SLNB, there is no correlation between number of LNs removed and change in upper extremity circumference or incidence of lymphedema. These data suggest that other factors, such as the global disruption of the lymphatic channels during axillary lymph node dissection, play a larger role in development of lymphedema than does the number of LNs removed
Their actual conclusion about the global disruption of the lymphatic channels and LE is interesting, but the two point, two time measurements is VERY Insensitive--I don't have LE.
So, SNB removed the draining node(s) from the breast, and the incidence of LE afterward is just not known because we don't have one diagnostic criteria for it, but it is real, and to tell women they're at no risk and that lymphedema risk reduction guidelines are never needed is dangerous and innacurate advice. Some expert. Just who I'd want to coach me...
Kira
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I am a certified lymphedema therapist (CLT-LANA) practicing for MANY years. Just recently dx and I told my surgeon that I do not want SNB or ALND or Radiation. No matter what physicians say, anecdotally I have seen once the architecture of the axilla is disturbed, issues may and many do occur, lymphedema, postmastectomy/postlumpectomy pain syndrome, axillary web syndrome, latent stage pain issues. I was told by many that my view is distorted, however, my surgeon was very kind and stated that in fact it is a priviledged view.
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Taking any nodes at all is an outdated staging procedure from the 1990s. Now there are much better staging tools which aren't crippling such as the tumor pathology tests. Somehow surgery hasn't caught up with the scientific research and surgeons get a bigger paycheck if they do node procedures.
They have known for years that removing nodes in breast cancer patients --even if they are cancerous--does not extend survival. So removing nodes has no therapeutic value and obsolete staging value.
When will will they change this crippling standard of care?
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I think we need to be careful not to mix apples with oranges and then claim we've made a milkshake.
lymphtherapist, if I'm not mistaken, you had DCIS -- not invasive cancer. So, you had the prerogative to decline the removal of any nodes and feel pretty safe afterward. As I mentioned in another thread where you told your story, the value of node removal (via SNB) in DCIS is questionable. Women who have "pure" DCIS and have a lumpectomy + radiation can safely skip the SNB, according to current NCCN Guidelines. Women who have DCIS and opt for a mastectomy (or must have one because of multifocal tumors) cannot go back at a later date and have SNB, because the lymphatic drainage in that breast will be badly disrupted. So, some surgeons recommend doing SNB if mastectomy is being performed on a woman with DCIS, because they can't go back and map those nodes later if the pathologist finds invasive cancer in association with the DCIS.
Janeluvsdogs, I'm not sure who "they" are or where you're getting your information. I'd love to see something in the current, nationally accepted guidelines for breast cancer surgery that recommends against removal of any nodes at all. The NCCN Guidelines (National Comprehensive Cancer Network, a consortium of major cancer centers in the U.S.) stipulate "axillary staging" for all stages of invasive breast cancer except the most advanced stages. The "standard of care" these days for axillary staging is SNB. That's according to the American Society of Clinical Oncology, as well as NCCN.
There have been reports published recently that show no survival benefit from full ALND when only one or two nodes are found to be positive at SNB and when the patient will be receiving radiation therapy as a part of her treatment. I am not aware of any clinical trial findings or statements from bona fide oncologists' groups that agree with your statement about node removal being "an outdated staging procedure from the 1990's." On the contrary, examination of axillary nodes is still the principle method of staging of breast cancer.
Imaging (PET, CT) is far too insensitive and nonspecific, and is not recommended for staging of early-stage BC. This is what the NCCN says about using scans in those patients: "The use of PET or PET/CT scanning is not indicated in the staging of clinical stage I, II, or operable III breast cancer."
I would love to see the "scientific research" documenting those "better staging tools which aren't crippling such as the tumor pathology tests." Do you mean there are "tumor pathology tests" that work better than axillary node staging? Tests like the Oncotype DX recurrence score can estimate recurrence risk, but they won't reveal whether the tumor has already spread.
otter
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Otter, it would be helpful if you didn't refer to consensus-based guidelines and instead referred to actual evidence about node dissection. "Guidelines" only means the docs voted regardless of whether it was based on evidence. "Guidelines," according to some of the docs on bc.org, refer to "right now we think." Or, put differently, "it seems like a good idea for now."
The "guidelines" lag way, way behind the evidence. Just like the "guidelines" recommended chemo for ER+ women until ten years ago when they found it didn't really work and many women suffered for nothing. Now the "guidelines" recommend various hormone blocking strategies which will no doubt be replaced by a different strategy in another ten years.
And regardless of what the Uber researcher Fisher found many years ago about removing the nodes providing no survival benefit, no doubt, needless crippling surgeries will continue, regardless of recent or previous studies showing lymph node dissection to be without survival benefit.
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Okay, Janeluvsdogs, I'll take the bait.
Since you're the person who discounted the value of node removal, saying it "has no therapeutic value and obsolete staging value", and since you also said there was "scientific research" supporting "better staging tools which aren't crippling" ... I would love to see the "actual evidence" supporting your claims.
At least I noted that my source consisted of consensus guidelines developed by nationally recognized oncology organizations.
I think we should both keep in mind that this debate is off-topic. Personally, I'd like to hear what kira thinks about SNB being an "outdated staging procedure." I know she is really, really p*ssed off about developing LE after an SNB, and about the failure of so many surgeons to talk to their BC patients about LE precautions (hence the purpose of this thread).
If she agrees with you that SNB is "obsolete" because it has no therapeutic or staging value, and because there are "better staging tools" that do not involve any axillary surgery, I'll ... um, I'll ... well, we'll just wait and see.
otter
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I know this forum has gotten off topic, but as I have to decide by Tuesday or Wednesday morning at the latest if I will ask my Dr. to stop with just the SNB. Janeluvsdog, I respect your views, and to a large extent I agree with you. Sadly at this time these seems to be nothing else the "authorities" are using to decide if the cancer has spread or not. So with that knowldege in mind Otter, I am kind of leaning towards telling the BS SNB only. If the cancer has spread to the LNS then I know I need radiation and cemo, and will very likely have a mastecomy as well. I do thank all of you for the info given, and Kira thanks for the info about the care I will be following the advice given after the surgery.
If anyone has anymore advice or suggestions please let me know, as I said Wednesday at 10:00 I will have surgery so my time for decisions is fast approaching.
Karen
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Karen,
Put it in writing in advance on the surgical consent form exactly what you want done in the surgery and the limits you insist upon. Read the consent form before you are flat on your back in pre-op, vulnerable in your hospital gown. There will be a paragraph that reads, you consent to have the surgeon and his/her designates do anything they deem necessary. You can cross this part out and write in that they can do anything necessary ONLY to SAVE YOUR LIFE.
Taking extra nodes is not a life-saving procedure so if they do that you can sue them because they will have violated your expressed directions.
There are a couple of well known breast cancer advocates who had a cordial relationship with their surgeons UNTIL the surgeons decided they would remove a boatload of nodes while they were out cold. These women are crippled for life.
I apologize if the previous posts seem off-topic. I would argue that they are on topic. They will certainly seem on-topic a month or year from now if your arm swells up, a nerve is cut and you are unable to lift your child or carry groceries be cause of out-dated "guidelines."
Best of luck to you, Karen. Please report back.
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Janeluvsdog,
I really didn't mean you were off topic in that way, really for my decision making you were right on topic, but this thread I think is about SNB can cause LE which it seems to me it can. I will read and change the language as you suggest on the consent form. In fact I'm going to have my husband read your post as he will be with me during that time as well. He is also in agreement with me there is no way I want to place that kind of control into the hands of my BS. I really wish there was a better way to treat us than this, and yes it is barbaric. You have been very helpful to me, and as I said all advice is welcome.
Karen
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Kira1234,
If you decide that you definately don't want to end up with an axillary node dissection no matter what's found, make sure your surgical consent form does not allow one to be done - they'll usually always say that you are consenting to the possibility of an axillary node dissection.
When the surgical consent form was presented to me for my signature shortly before the surgery, I noticed that it read something to the effect of " left breast lumpectomy and SNB with possible axillary node dissection". Since I absolutely didn't want anything further done other than a true SNB (1-3 nodes), I crossed out and initialed the "possible axillary node dissection" on the consent form and then wrote in that I consented to only 1 node being removed and that up to 2 additional nodes could be removed ONLY IF the first node was very suspicious or blatantly involved. I also made very sure that my surgeon was aware that I did this and rather loudly, told him (any anyone else in earshot) as he visited my bedside just prior to the surgery. I also made sure the person who wheeled me into the OR and the anesthesiologist knew. If it had happened that no sentinel node lit up after the dye was injected pre-op, I would have refused the SNB outright rather than have a clump of tissue removed blindly.
My tumor was small and low grade, but I still would have done the same had it been anything else.
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Kira, I had a mx with SNB. Surgeon took 3 nodes -- I thought she'd only take one, since it's called sentinel node (singular) biopsy. I did not agree to them taking all the rest out after a quick-read pathology if it was positive during that sx. Turned out I only had ITCs and not micro-mets or larger mets.
And then at the June '10 ASCO a report was presented which found no improvement with taking all the nodes instead of just SNB for most women. That report is somewhere under research news on this site.
"Andrew Seidman, M.D.: We actually have a wealth of new data from this year's American Society of Clinical Oncology meeting. There was a study that showed that sentinel lymph node biopsy is indeed a safe alternative to full axillary lymph node dissection when the sentinel lymph node does not contain cancer. This supports what has already become common clinical practice. The sentinel lymph node procedure typically results in less pain and, importantly, less lymphedema. "
"There was additional provocative data from the ACOSOG Z11 trial that even called into question the role of axillary lymph node dissection at all in patients with a small axillary tumor burden, generally favorable tumors, who underwent breast-conserving surgery. However, it is important to note that this trial fell quite short of its target patient accrual and patients should discuss the possibility of omitting axillary lymph node dissection directly with their breast surgeons. "http://www.breastcancer.org/news_research/ask_expert/06_2010/#q5
I dislike even this site's wording about how you can "prevent" LE. We don't know how to completely prevent it unless you don't have surgery! I am thin and don't smoke, yet I had seromas, cording, and now trunkal and arm LE (mild, thank the deities).
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MaryKelly,
Your idea for telling the BS only 1 and 2 more only if suspicous or blatantly involved is a great idea. My tumor is also small only 7mm they believe but it is a grade 2. I really don't know quite what the difference is between grade 1 and 2 and what that means as far as my outcome for the future. I am talking the BS Tuesday morning and will be telling him my decision, and he can take it or leave it he works for me not the other way around.
Karen
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