Posted on: Jan 15, 2011 02:42AM
Dx stage II breast cancer and now am going in for level I and Level II lymph node dissection. What is the "real" recovery time. Have already had 2 surgeries and sentinel node dissection.
Posts 1 - 30 (69 total)
Jan 15, 2011 03:03AM Sereena wrote:
Makingway, Could you elaborate?
Jan 15, 2011 03:20AM makingway wrote:
I imagine because you had 3 of 4 positive nodes you have been recommended chemotherapy-right? There is NO, I repeat, NO therapeutic benefit for having your lymphnodes removed. It is for staging purposes only. And since you've already been staged there is NO need to remove more lymphnodes. Ask a few radiation oncologists. If they are honest they will tell you this. As for recovery time, sometimes you don't recover. You risk developing lymphedema for which there is NO cure. When you first go to see a surgeon he/she might tell you the chance of develping lympedema is only 1-2% when it's actaully 49% over a 20 year period. I will post some links you can read. I have to search for them first.
Jan 15, 2011 01:20PM Sereena wrote:
Thanks for the information......Also, my surgeon was reluctant to stage my cancer. The sentinel node biopsy came back as I lay in the operating room as "negative". Turns out that was a BIG false/negative when there were 3/4 nodes positive (micro and macro). I was told the staging could change. The ILC is multi-focal with one area not having clear margins. This will be surgery number 3!!!!
Jan 15, 2011 03:38PM lago wrote:
I had level I nodes (10 total) on the left. I think what took time for me was getting my full range back. I do have mild LE on that side but so far nothing that I can't live with. You are already at risk for LE with both a sentinel node dissection and if you had a MX too.
My BS took level I without a sentinel because that is standard care with large tumors like mine (plus grade 3, HER2+ and very fast growing). He did state that if he found a need he would be taking more. In my case there was no need because there was no invasion.
But I would question why they need to take out level I and/or II. The more nodes the more you are at risk for LE.
Jan 15, 2011 04:07PM MaxineO wrote:
I am scheduled for axillary node dissection with my surgery. Can you tell me or direct me where to learn what level I and level II mean? This is completely new information for me.
I had a lymph node biopsy on a very large node, and my CT scan indicates there are a few more 'enlarged.' I will be having both chemo and radiation after surgery (still determining extent needed/wanted).
Jan 15, 2011 04:12PM lago wrote:
Also on both these pages look at the navigation on the left. There are more pages of info you might be interested in reading.
Jan 15, 2011 04:17PM - edited Jan 15, 2011 04:18PM by mollyann
From the NY Times: No survival value in axillary node removal. An obsolete procedure.
"The more extensive removal, called axillary node dissection, can cause restricted mobility of
the arm and painfully swollen arms or fingers.
The study presented here involved 991 women who had had lumpectomies, radiation
therapy and a positive sentinel lymph node. Half had the other lymph nodes removed
and the others did not.
After five years there was no difference in survival or disease recurrence between
the two groups. Some 82.2 percent of the women who had the dissection were alive
and disease free compared with 83.8 percent of those who did not. Cancer recurred
in the breast or nearby in 4.3 percent of those who had the operation and 3.4
percent in those who did not.
"The evidence is overwhelming that the operation might not be necessary," the lead
investigator, Dr. Armando Giuliano of the John Wayne Cancer Institute in Santa
Monica, Calif., said."
Jan 15, 2011 04:28PM lago wrote:Sereena If you have more than 3 nodes infected it will effect your staging and how you are treated. This might make a difference in survival and even how long you remain NED. At the same time I wonder why you BS has to take both level I and level II. I'm not saying he isn't correct but you should find out why he needs to take both levels.
Jan 15, 2011 04:41PM - edited Jan 15, 2011 04:49PM by mollyann
See the studies. Axillary node dissection is an obsolete staging technique.
The pathology report from the tumor has become so sophisticated that they don't need to do a procedure that causes lymphedema 49% of the time. You can stage without it.
At San Antonio Breast Cancer Symposium they discussed that it was going to take time for some surgeons to stop doing this unnecessary but profitable procedure.
Jan 15, 2011 05:27PM lago wrote:
Mollyann that may have been true in my case where I didn't have any invasion in my nodes (although still not convinced given the size and agressivenese of my tumor) but in Sereena's case I don't think there are enough definitive studies to support that this procedure is obsolete.They really do need to know how many nodes. If they are not using nodes for staging then what "new" criteria are you talking about. I really think you are misunderstanding what they are saying.
Surgeons don't do this procedure to make money. I know for a fact my surgeon did not do this because it was profitable.
Jan 15, 2011 05:41PM - edited Jan 15, 2011 05:44PM by mollyann
You were just diagnosed so I can understand how you don't know about all the earlier studies that show the same thing that the most recent study proved. The tumor biology is the ultimate staging device.
You don't want to risk being crippled by an additional high risk procedure when you already know from your pathology report that you will or will not get chemo.
Please take Makingway's advice and review the earlier studies.
Jan 15, 2011 06:22PM - edited Jan 15, 2011 06:23PM by Sereena
Lago, Good question as to why Level I and II need to come out. I am putting together a list of questions for both the BS and Oncologist who I will be meeting w/on Tuesday. Thanks for the links. I also had a 2nd area removed that only had clear margins on 3 sides and because the 4th side was right up to the skin (not free of cancer cells) she is not doing a re-excision. I'm thinking that should be concerning! Why leave it in there?
Jan 15, 2011 06:38PM lago wrote:
Mollyann I wasn't just diagnosed. You say that every time I disagree with you on these boards. Stop trying to scare people to believe what you believe. Her surgeon has the medical degree and many years of experience with many breast cancer patients. You do not. This is why I state my position as something to discuss with her BS.
You keep posting the "scare" links but do not post the recent studies from the San Antonio Breast Cancer Symposium reference.That makes me question that you are not interpreting the information properly. If in fact the studies you post are old (2003) and are not from a site that I consider that relaible since the bias is to prevent lymphedama.Read their disclaimer:
"This website is intended as information only. The editors of this site are not medically-trained. Please consult your licensed health care practitioner before implementing any health strategy. The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician."
source: http://breastcancerchoices.org/faqlymph.html (bottom of page)
The materials on this World Wide Web site are provided for informational purposes only, do not constitute medical advice, do not necessarily reflect the opinions of any physicians, and are not guaranteed to be correct, complete or up-to-date. This World Wide Web site is not intended to create a doctor-patient relationship between you and The StepUp-SpeakOut.Org group, and you should not act or rely on any information in this World Wide Web site without seeking the advice of your own physician or healthcare provider. Lymphedema requires appropriate evaluation, treatment and education by a certified lymphedema therapist."
source: http://www.stepup-speakout.org/ (in body of page below fold)
Scaring her about being "crippled" just before her surgery is cruel. I have mild LE inmy left arm and I am far from crippled. I really don't do anything differently on that arm than I do on my right with the sentinel except for a sleeve one in a while. I have to take care on both arms even with just a few nodes removed.
Jan 15, 2011 07:18PM Sereena wrote:
Yes I am lago, right on the east coast.
Jan 15, 2011 07:24PM lago wrote:
Some of the top place out east. I'm from Boston orginally and my sister lives outside of PA.
Jan 15, 2011 07:29PM - edited Jan 15, 2011 07:30PM by mollyann
To all reading this board:
Here is a short video that spells out the 2010 research findings that axillary dissection is obsolete and dangerous.
If you are not convinced by the medical evidence, read at all the threads on women suffering with lymphedema.
Jan 15, 2011 07:41PM jacee wrote:
Sereena, I had 2 sentinel nodes positive, then had 9 more nodes removed at the time of my mx. One of those was positive. I haven't had any lymphedema, but realize it can occur at any time from now on. You can acquire lymphedema with even one node removed. One of my positive nodes was an intermammary node, and I am thrilled my surgeon was able to remove it. Please talk with your BS about your concerns, and get full explanation of his intentions. Only you can decide, but I would lean on the side of listening to your surgeon.
Jan 15, 2011 07:44PM OneBadBoob wrote:
I just wanted to jump in here and state, as one of the authors of StepUp-SpeakOut that I do not believe we have set forth any opinion at all one the use of axillary disection in place of or in addition to sentinal node biopsy in our website.
And as our disclaimer states, do your research and make your decisions with your physicians.
I myself have bilateral arm lymphedema and truncal lymphedema, and on the left I only had two nodes removed, and on the right, no nodes at all.
Jan 15, 2011 07:48PM kira wrote:
I am one of the directors of the stepupspeakout.org site, and we do NOT want to give medical advice--just general advice about lymphedema and how to prevent and treat it.
The study that has been referred to was presented at an ASCO meeting, here's the abstract:
ACOSOG Z0011: A randomized trial of axillary node dissection in women with clinical T1-2 N0 M0 breast cancer who have a positive sentinel node.
Breast Cancer - Local-Regional and Adjuvant Therapy
2010 ASCO Annual Meeting
Session Type and Session Title:
Oral Abstract Session, Breast Cancer - Local-Regional and Adjuvant Therapy
J Clin Oncol 28:18s, 2010 (suppl; abstr CRA506)
A. E. Giuliano, L. M. McCall, P. D. Beitsch, P. W. Whitworth, M. Morrow, P. W. Blumencranz, A. M. Leitch, S. Saha, K. Hunt, K. V. Ballman; John Wayne Cancer Institute, Santa Monica, CA; American College of Surgeons Oncology Group, Durham, NC; Dallas Surgical Group, Dallas, TX; Nashville Breast Center, Nashville, TN; Memorial Sloan-Kettering Cancer Center, New York, NY; Morton Plant Hospital, Clearwater, FL; University of Texas Southwestern Medical Center, Dallas, TX; McLaren Regional Medical Center, Michigan State University, Flint, MI; M. D. Anderson Cancer Center, Houston, TX; Mayo Clinic Rochester, Rochester, MN
Background: Sentinel node biopsy (SNB) eliminates the need for axillary dissection (ALND) in patients whose sentinel node (SN) is tumor-free. However, completion ALND remains the gold standard for patients with a tumor-involved sentinel node. ALND achieves regional control, but its effect on survival remains controversial. The main objective of ACOSOG Z0011 was to compare outcomes of patients with hematoxylin and eosin (H&E) detected metastasis in SN managed with or without ALND and no axillary irradiation.
Methods: Clinically node-negative patients who underwent SN biopsy and had 1 or 2 SN with metastases detected by H&E were randomized to ALND or no further axillary specific treatment. All patients were treated with lumpectomy and opposing tangential field irradiation. Adjuvant systemic therapy was at the discretion of their physicians. Overall survival (OS), disease-free survival (DFS), and locoregional control were evaluated. Results: 446 patients were randomized to SNB alone and 445 to SNB plus ALND. Patients treated with SNB alone were similar to those treated with SNB + ALND with respect to age, tumor size, Bloom-Richardson score, estrogen receptor status, adjuvant systemic therapy, tumor type, and T stage. Patients randomized to SNB alone had a median of two lymph nodes removed whereas patients randomized to ALND had a median of 17 lymph nodes removed. 17.6% of ALND patients had 3 or more involved nodes compared to 5.0% of SNB patients (p < 0.001). Median follow-up is 6.2 years. 5-year in breast recurrence after ALND was 3.7% compared to 2.1% for SNB (p = 0.16) while 5-year nodal recurrence was 0.6% compared to 1.3% (p = 0.44) respectively. The five-year OS for patients undergoing SNB + ALND is 91.9% compared to 92.5% for SNB alone (p = 0.24), and DFS is 82.2% compared to 83.8% respectively (p = 0.13).
Conclusions: Despite the widely held belief that ALND improves survival, no significant difference was recognized by this study of SN node-positive women. Although the study closed early because of low accrual/event rate, it is the largest phase III study of ALND for node-positive women, and it demonstrates no trend toward clinical benefit of ALND for patients with limited nodal disease.
This is one study, and you can discuss it with your treating physicians--they need to interpret the study WITH the knowledge of your specific situation.
Recovery from axillary lymph node dissection involves a drain usually, and there may be soreness and some numbness in the area. Yes, there is a higher risk of lymphedema--but I got lymphedema after a sentinel node biopsy.
There are a lot of studies that show that pre-operative assessment by a qualified lymphedema therapist and early post-op treatment can help prevent lymphedema--especially with ALND. There was a study in BMJ that showed early lymphedema therapy prevented lymphedema. Here's how to find a qualified lymphedema therapist:
We can offer support and information, but you need to discuss treatment with your treating physicians, and you do have a right to question them as to the reasoning behind their recommendations.
Good luck, hope all goes well.
And yes, those of us with lymphedema aren't happy to have it, but we're over on the lymphedema thread sharing information and encouragement, and occasional frustration.
Jan 15, 2011 07:56PM lucy88 wrote:
My surgeon is at John Wayne Medical Center where Dr. Guiliano from the video practices. She considers axillary surgery barbaric and will only do it if the patient has pain in a node.
This is a serious operation. Please read up what you can. My sister was diagnosed ten years before me and her arm is now useless. There was a lymphedema therapist on the group who was diagnosed six months ago. She saw so many painful cases that she would not get any lymph node procedure. This is a haunting picture below but it could be any one of us.
Jan 15, 2011 08:18PM makingway wrote:
lago-I don't believe Mollyann was trying to scare Sereena into believing what she herself believes. I think she was trying to educate her. Unfortunately this is a scary subject. You put yourself at risk for suffering permanent damage. It's especially appaling when you find it is a completely unnessary procedure. I do not understand how you make the connection between a Lymphedema prevention website and being unreliable...The information provided on the www.stepup-speakout.org/ is provided by credible lymphedema specialists-most of which are doctors. Read this before making assumptions. http://www.stepup-speakout.org/About_Us.htm
You're posting of the disclaimers on the websites mentioned to try and discredit them has no realevance. All websites have disclaimers, even this one:
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There are many articles published on the subject. It's unfortunate that most doctors don't educate themselves on this subject. I guess they're just too busy...We assume that our doctor knows ALL. They don't. They 'specialize' in certain areas. You must do your own research. Because you aren't suffering at present from an ALND doesn't mean you won't be in the next 20 years. It's a wonderful thing that you haven't been 'crippled' as you wrote, but many others suffer immensely because of this procedure-myself being one of them. I'm posting a few studies from PubMed online. It appears they are very careful when making 'new' recommendations. It's more than unfortunate that it takes a lifetime for things to 'change' in the medical industry, it is appaling.
Completion axillary lymph node dissection not required for regional control in patients with breast cancer who have micrometastases in a sentinel node.Arch Surg. 2010 Jun;145(6):564-9.
Micrometastasis in the sentinel lymph node of breast cancer does not mandate completion axillary dissection.Ann Surg. 2004 Jun;239(6):859-63; discussion 863-5.
Prognostic and therapeutic impact of sentinel node micrometastasis in patients with invasive breast cancer.Tumori. 2002 May-Jun;88(3):S4-5.
Comparison of sentinel lymph node biopsy alone and completion axillary lymph node dissection for node-positive breast cancer.J Clin Oncol. 2009 Jun 20;27(18):2946-53. Epub 2009 Apr 13.
Jan 15, 2011 08:19PM NannaBaby wrote:
I got level 1 and 2 removed Dec 14 and I feel good. Recovery time is short... 2 weeks approx. Lymphedema is a risk whether or not you get your nodes removed or not. Chemo will damage your lymph nodes if there's any cancer in em. And radiation will damage them too.
Jan 15, 2011 10:22PM Beeb75 wrote:
My understanding is that the purpose of axillary dissection is not ONLY to stage the cancer, but also to ensure that all the cancer is physically removed. If one node is positive, they want to remove the others just in case they are harboring any cancer cells themselves. And there IS evidence that removing more lymph nodes correlates to to better cancer outcomes -- perhaps it's because some of those other lymph nodes actually have cancer cells in them (even though our current technology may not detect them.)
Check out this study: http://www.ncbi.nlm.nih.gov/pubmed/20421053
It basically found that people who had a low ratio of positive lymph nodes to all lymph nodes removed ratio had better outcomes. So a person who had 1/30 did better than the person who had 1/2 who did better than the person who did 1/1.
I did see the other study referenced above by other posters and thought it was interesting (and worried I'd had an ALND for nothing) but studies contradict one another all the time -- no one should make a decision based on a single study but on the weight of all the evidence. You can research lymph node ratio to find other studies on that topic.
My surgeon is at Memorial Sloan Kettering in New York, and I know everyone there stays on top of all the data and acts aggressively on all fronts to get better survival rates. For me, lymphedema is a risk, but it was a risk I had to accept for a better chance at survival. (And yes, I had to rely on my brilliant surgeon's experience and wisdom to guide me.)
Recovery was slow and steady, but I am close to full range of motion now (4 months after surgery) and have no sign of any lymphedema at all. I was advised to try to stay at a healthy weight to keep that risk low.
Jan 15, 2011 10:33PM Binney4 wrote:
Ladies, there seems to be a lot of confusion on this thread between discussions of surgery types and discussions of lymphedema. All of us with breast cancer are at risk for lymphedema, no matter what treatment we elect, but making breast cancer treatment decisions based on fear of lymphedema is risky at best and sorta senseless anyway. Our current science doesn't allow us to predict with any accuracy at all just who will or won't develop lymphedema. Recent research indicates there's even a genetic pre-disposition involved, and no way to predict who might be so predisposed.
More to the point: Lucy, there is no reason whatsoever that any woman here should fear to end up like the picture you've unfortunately posted. If we are aware of our risk and alert to the proper treatment, it need NEVER progress to that state. But even if it did, proper treatment would reduce it with gentle directional massage and compression -- nothing surgical or pharmaceutical involved. In fact, the "after" picture of that woman's arm post-treatment is available on other sites on-line, and you will be encouraged if you see it, because it looks perfectly normal. Being haunted by such pictures is not only distressing, it's completely unnecessary.
As for the lymphedema therapist who was here a few months ago spouting her own personal fear of lymphedema, her diagnosis was DCIS and therefore has absolutely nothing to do with this particular discussion. She has indeed seen lots of very difficult lymphedema, since she treats people with primary lymphedema (caused by in-born defects of the lymph system) which frequently goes undiagnosed for decades and has progressed to truly serious stages. So that also has zero to do with our situation. All that just to say, lymphedema is no treat, but it's absolutely nowhere near as threatening to us as the breast cancer beast -- they're not even in the same class. Please let's sort out these subjects and not continue to discuss them as though they were on a par. An ALND does NOT equal lymphedema. And a SNB (or even just a prophylactic mastectomy) does not excuse anyone from having to take sensible precautions to prevent it.
We can do this! We're strong, smart women! Sereena, wishing you smooth sailing and only good outcomes!
Jan 15, 2011 10:44PM lucy88 wrote:
You're right, lymph node dissection doesn't automatically equal lymphedema.
There is a 49% chance of lymphedema according to Sloan Kettering.
If it improved survival, that would be one thing but it doesn't. Did you read the studies the women sent?
Jan 16, 2011 12:00AM Binney4 wrote:
Lucy, I'm well aware of those studies, but not at all a participant in the argument about whether to do lymph node dissection or not. It's a decision women need to make in consultation with their doctors, always assuming they feel comfortable discussing the evidence and limitations of the current research as it applies to their own specific situation.
My point is, making any decision based on fear of lymphedema is unnecessary, and possibly dangerous. It's a moot point: we're all at risk. If it happens to you, the risk was 100%.
All lymphedema risk rates, by the way, are flawed because there is no agreed upon basis for diagnosis, and therefore no way to make sense of any study without consideration of how they've defined lymphedema, much less to compare studies and arrive at any broad concensus about lymphedema rates. There are serious researchers who believe the rate of lymphedema following ALND is actually higher than that, and other researchers who think the rates quoted for risk following SNB are way too low, especially since they don't reflect the increased risk of truncal lymphedema that appears to be developing with the use of lumpectomy/SNB/rads. Unlike most arm lymphedema, truncal lymphedema is often quite painful, and it goes undiagnosed for longer periods than arm lymphedema, so very frequently results in serious repeated infection.
So once again, my point is that we're smart women, aware of our lymphedema risk (whatever the actual percentages may be), and free to make important but very individual decisions about how best to protect ourselves, both before and after surgery and other treatment. We are also free to make our breast cancer treatment decisions apart from fear of lymphedema risk, as the two are separate issues. We have no need to be haunted by pictures of out-of-control lymphedema in some unfortunate woman who was not informed of her risk or offered the prompt treatment she deserved (though perhaps we do have an implied obligation to spread lymphedema awareness to our doctors, fellow bc Sisters, and the community at large).
To that end, both the StepUp-SpeakOut site and the National Lymphedma Network site offer risk reduction guidelines we can all consider. I hope none of you ever have to join our Sisterhood of Swell.