Studies on SNB?
I'm newly diagnosed and my BS has recommended a lumpectomy with SNB for what is most likely DCIS in one breast. (May still need more tests.) I'd like to understand the lymphedema risk as I make a decision and can't tell how high it is from the varous studies.
I've read a few stats on lymphedema risk after SNB and would like to read the studies these figures are based on.
Linda Miller reported 10%-12% in 2008:
www.breastcancer.org/treatment/planning/ask_expert/2008_05/question_03.jsp
On May 22, 2010, Bessie wrote in this forum "the research is pretty clear on the fact that even just removing a single node during an SNB can lead to lymphedema. It doesn't happen often - only in a small percentage of cases (I've read anywhere from 3% - 7%) but considering how many women have SNBs, that's a lot of women."
A UP November 2010 study I did find concluded that SNB did not increase risk:
www.ncbi.nlm.nih.gov/pmc/articles/PMC2976830/
But a UP 2011 study concluded the risk is 2%-17%.
www.oncolink.org/experts/article.cfm?id=2793&ss=6
Also, it seems the higher numbers may be for situations where there is more treatment than a lumpectomy?
Thanks for any feedback.
Ellen
Comments
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I had the sentinel removed on one side, and 23 nodes removed on the other. I was completely fine until I sterted chemo. By the end of chemo, I was having some problems on both sides, mild ones, but problems. So, yes, I think treatment beyond the surgery has a lot to do with it, and my onc said as much.
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Ellen, there are many factors we know about that contribute to lymphedema risk, and nobody-knows-how-many factors that we don't yet know about. Lymphology is a new and emerging science, with embarrassingly little good research yet done.
Some factors that increase risk are number of nodes removed or damaged, overweight, diabetes or other vascular conditions, previous surgeries or injuries to the chest/breast/axilla, surgical complications (infection, seroma, possibly axillary web syndrome), radiation (especially to some areas), certain chemo regimens, and most likely the make-up and functioning of your lymph system before treatment. (Recent research by Stanton in the UK indicates that those of us who develop lymphedema with cancer treatment had lower-capacity lymph systems to begin with -- but there is currently no way of knowing that beforehand.)
There are thin, fit women on these boards who had SNB with no surgical complications and few other risk factors who now have lymphedema. There are women here who had a couple dozen nodes removed, rads, chemo, infections, and they buck bales for a living and they've never developed lymphedema. I had a single node removed on the left (cancer) side and a prophylactic mastectomy on the right, and I have lymphedema on both sides. If you develop lymphedema, the risk was 100%.
On the other hand, there is some (also sort of nebulous) research, mostly from Scandinavia, that indicates that SNB + rads is resulting in an increased risk of truncal lymphedema over what might be expected with a mastectomy and ALND. That was a few years ago and I haven't seen recent figures on that.
In the face of all that, the National Lymphedema Network has recently published a Position Paper on Breast Cancer Screening that urges pre-surgical assessment and follow-up. It's here:
http://www.lymphnet.org/Best bet is a referral from any one of your doctors to a well-trained lymphedema therapist for baseline arm measurements, personalized risk-reduction tips, learning a gentle prophylactic lymph massage, and possibly fitting for a compression sleeve and glove or gauntlet (fingerless glove) to use for exercise and travel. Here's how to find a qualified therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmThere's a lot you can do to lower your risk. Knowledge is power!
Be well,
Binney -
Ellen, a large part of the problem of predicting risk of LE after SNB is that there is no diagnostic standard for LE--some people use 2 cm difference in arm circumference, others use 5-10% increase in arm volume, if they have the super-sensitive perometer then some studies have said a 3% arm volume increase, there is bioimpedance and it claims to help diagnose LE if the values change by 10 points from baseline and some other researchers use validated surveys of symptoms.
So, without a diagnostic criteria, it's apples and oranges.
The quoted range for SNB and LE is around 5% up to 20%, and the risk increases with radiation.
Not all surgeons do SNB for DCIS---so you might want to inquire why that is needed.
I just looked at the NCCN guidelines ( you need to register as a professional to read them, but anyone can) for DCIS and their comments about lymph node sampling are:
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp
f
Complete axillary lymph node dissection should not be performed in the absence of evidence of invasive cancer or proven metastatic disease in women with apparent
pure DCIS. However, 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 may be 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.So, as someone who got LE with three nodes out, it happens and when it happens to you, it's 100%.
This is such a dificult time, and the decisions are so hard, it really sounds like you're doing your research and being an informed patient.
If this doesn't answer your questions, let me know.
Kira
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Ellen, keep in mind that 'sentinel' often means more than one node. My SNB removed 5 nodes and I have very mild LE of the upper arm. I consider myself very lucky that it is mild. I remain unconvinced that my SNB was actually necessary, and had I understood my LE risk (BS told me only 1-3%), I would have challenged the recommendation and done more research. Kudos to you that you are pursuing it now!
Carol
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Ditto what Carol said, except my "sentinel" was 3 nodes. I have mild trunkal and shoulder LE. And I was never measured beforehand, plus my SNB side is my dominant hand side, so measurements aren't reliable.
It's not clear if node removal actually helps survival rates in cases of isolated tumor cells or even micro-mets in the nodes, from the latest studies on SNB v AND.
I think LE is way under-reported. Best of luck to you in whatever you choose!
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Thanks so much for all the replies. I'm still waiting for my path report from my FNAs and then I'll have more info with which to calculate how much risk I face for lymphedema and recurrence or mets and be able to have an informed talk with my BS and maybe get a second opinion.
I've had a papilloma removed by this BS in my unaffected breast and was very happy with the results. I'm at NYU in NYC and notice that it's not a member of NCCN. Perhaps that has something to do with the recommendation to do a SNB, perhaps not, it's one of the questions I'll ask. Dr. Mei Fu, a lymphedema advocate teaches at NYU's nursing school, but that may not be relevant.
Probably not relevant to lymphedema, but my MRI turned up eight small spots some distance from the malignant tumor and the axilla that turned out to be connective tissue, fibroids and other noncancerous tissue. I think my BS wants to take that out too, not sure if I want that either. It's just another decision I have to make. Are there any studies about the likelihood of these turning malignant. I should probably post this in another forum? But I'm thinking that minimizing trauma is a way to prevent lymphedema.
I'd like to look at all the recognized DCIS treatment guidelines. Are there others besides NCCN and National Cancer Institute's PDQs? Maybe from other countries too?
If I decide not to have a SNB, are there any forms I need to ensure it won't happen prior to surgery?
Thanks again for the info and support.
Ellen
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I agree with others that LE is under-DXed and under-reported. I have definite swelling in uper arm and occasional mild swelling in the fingers. It seems to have been induced by the chemo and inflammation of the veins etc, but all my doctors dismiss it and won't call it lymphedema, because my arm has not ballooned to the size of an elephant trunk. On the other hand, they applaud my wearing a sleeve and seeing a PT, so they clearly recognize that it is a problem.
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Ellen, the NCCN are national guidelines, and to my knowledge no center is affiliated with them, but some centers are NCI cancer centers.
I know Mei Fu, and she has several active studies, and it's worth contacting her to see if you're eligible for one of them--she has a perometer, and is also studying biomarkers.
She's not really a clinician: in that you wouldn't be her patient and she doesn't employ therapists, but she does research. She does seem to enroll patients into the "Optimal You" program.
The post op considerations are that lymph tissue reconnects in a 2-3 week window after surgery, so you want to avoid seromas (Mei Fu presented an abstract at the SABC last year about axillary seromas and LE risk) and avoid stretch through the axilla for the first 10-14 days.
Totally agree with all the comments about the under recognition and under diagnosis of LE
Kira
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Hi Kira,
Thanks for telling me about "Optimal You," and the post op considerations.
Here's a link to the member institutions of the NCCN: www.nccn.org/members/network.asp
From my research so far (seems as if I've been glued to medline), and assuming my final diagnosis is DCIS in situ, I have to weigh the risk of recurrence against the risk of lymphedema, and it seems the risks of getting LE are higher based on what I currently know about my diagnosis. (Of course I'll learn more after surgery.) I have yet to search for studies about false negative results with MRIs that don't show lymph node involvement with contrast dye, as with my MRI.
Also, from what I've read so far, if I understand it, some studies show no benefit to survival with SNB? Is it only used to see if it's likely that malignant cells are on the way to the axillary nodes or is there other info they reveal? (I suppose micromets?)
Still researching, but have to take a break.
Thanks again for all the help.
Ellen
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Ellen, the study was about the need to do full axillary lymph node dissection if only1-2 nodes were positive with a T2 or lower tumor--invasive--and no survival benefit was seen with those women who met the criteria.
Thanks for letting me know about the NCCN institutiions.
The study was in JAMA
http://jama.ama-assn.org/content/305/6/569.abstract
Axillary Dissection vs No Axillary Dissection in Women With Invasive Breast Cancer and Sentinel Node Metastasis
A Randomized Clinical TrialArmando E. Giuliano, MD;
Kelly K. Hunt, MD;
Karla V. Ballman, PhD;
Peter D. Beitsch, MD;
Pat W. Whitworth, MD;
Peter W. Blumencranz, MD;
A. Marilyn Leitch, MD;
Sukamal Saha, MD;
Linda M. McCall, MS;
Monica Morrow, MD[+] Author Affiliations
Author Affiliations: John Wayne Cancer Institute at Saint John's Health Center, Santa Monica, California (Dr Giuliano); M. D. Anderson Cancer Center, Houston, Texas (Dr Hunt); Mayo Clinic Rochester, Rochester, Minnesota (Dr Ballman); Dallas Surgical Group, Dallas, Texas (Dr Beitsch); Nashville Breast Center, Nashville, Tennessee (Dr Whitworth); Morton Plant Hospital, Clearwater, Florida (Dr Blumencranz); University of Texas Southwestern Medical Center, Dallas (Dr Leitch); McLaren Regional Medical Center, Michigan State University, Flint (Dr Saha); American College of Surgeons Oncology Group, Durham, North Carolina (Ms McCall); and Memorial Sloan-Kettering Cancer Center, New York, New York (Dr Morrow).
Abstract
Context Sentinel lymph node dissection (SLND) accurately identifies nodal metastasis of early breast cancer, but it is not clear whether further nodal dissection affects survival.
Objective To determine the effects of complete axillary lymph node dissection (ALND) on survival of patients with sentinel lymph node (SLN) metastasis of breast cancer.
Design, Setting, and Patients The American College of Surgeons Oncology Group Z0011 trial, a phase 3 noninferiority trial conducted at 115 sites and enrolling patients from May 1999 to December 2004. Patients were women with clinical T1-T2 invasive breast cancer, no palpable adenopathy, and 1 to 2 SLNs containing metastases identified by frozen section, touch preparation, or hematoxylin-eosin staining on permanent section. Targeted enrollment was 1900 women with final analysis after 500 deaths, but the trial closed early because mortality rate was lower than expected.
Interventions All patients underwent lumpectomy and tangential whole-breast irradiation. Those with SLN metastases identified by SLND were randomized to undergo ALND or no further axillary treatment. Those randomized to ALND underwent dissection of 10 or more nodes. Systemic therapy was at the discretion of the treating physician.
Main Outcome Measures Overall survival was the primary end point, with a noninferiority margin of a 1-sided hazard ratio of less than 1.3 indicating that SLND alone is noninferior to ALND. Disease-free survival was a secondary end point.
Results Clinical and tumor characteristics were similar between 445 patients randomized to ALND and 446 randomized to SLND alone. However, the median number of nodes removed was 17 with ALND and 2 with SLND alone. At a median follow-up of 6.3 years (last follow-up, March 4, 2010), 5-year overall survival was 91.8% (95% confidence interval [CI], 89.1%-94.5%) with ALND and 92.5% (95% CI, 90.0%-95.1%) with SLND alone; 5-year disease-free survival was 82.2% (95% CI, 78.3%-86.3%) with ALND and 83.9% (95% CI, 80.2%-87.9%) with SLND alone. The hazard ratio for treatment-related overall survival was 0.79 (90% CI, 0.56-1.11) without adjustment and 0.87 (90% CI, 0.62-1.23) after adjusting for age and adjuvant therapy.
Conclusion Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival.
Sounds like it's time to have a discussion with your treating physicians
Kira
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Yes, I hope to tomorrow. I need to read my path and MRI reports first. I've just completed preliminary research online and found quite a few studies not recommending SNB for DCIS. I'm feeling pretty comfortable with that at this point, should my diagnosis continue to be low risk DCIS. I'll keep you posted.
Thank you again for all the info and help.
Ellen
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I have significant LE in my right arm--the side that I had a MX and 23 LN removed. I am going to have the other breast removed this summer and I suspect they will want to do a SNB on that side. Of course, I am worried about developing LE on the left side as well. Any data/experiences to bring to the party to suggest that those with LE are more or less prone to developing it on the other side?
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Cindy, there is an article from AW Stanton that showed that women who got LE on one side tended to have less robust lymphatic systems.
The lymph vessels in the arm pit have just a 2-3 week window to form new connections, so rather than stretching overhead, it's advised by LE experts, to keep the arm at the side for the first 14 days or so.
There was a recent study published on prospective management of patients: meaurement with perometer and early PT, and it seemed to head off some cases of LE--so close follow up with your LE therapist is crucial.
Good luck, and maybe they won't need to do a SNB, but you're still at risk with the surgery.
But, you're aware and proactive and that puts you way ahead of the game.
Kira
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It's been a while since I posted because I've been trying to absorb enough information to formulate the right questions. I've made some progress.
I joined a trial that Mei Fu is running at NYU for pre-op BC patients. It was wonderful to meet Mei and I'm thrilled to be in this study, both to help other women and to take the best care of myself.
Because of my concerns about LE, my BS suggested doing a lumpectomy first and discussing SNB after reviewing the path report. I'll be talking to a second doc about this in a few days.
What I'm not still clear about are the benefits of SNB. Will there be enough info to recommend the right treatment for me based on analysis of the tissue removed at my lumpectomy? How much does presence of mets in a node (or 2 or 3) matter as far as recommended treatment is concerned? I've read that in most cases, survival is not improved by SNB, that many docs now feel the dangerous cancer isn't local and is already in your blood or lymph system.This seems to indicate it's not that important to know the status of a SN.I've read on this site about the dangers of being both under and over-treated based on not having a SNB.
What are the implications for having radiation? Is my doc more likely to recommend radiation of the axilla if there is no indication my SNs are negative, and is such radiation likely to put me at more risk for developing LE than a SNB would? If I refuse node radiation w/o a SNB can I assume the chemo or hormone therapy I''m likely to get will take care of things?
These are the quesitons I've forumlated so far. Do they sound like the right ones? Is there anything else I should be investigating? And are there definitive answers to any of them or is it all opinion based on what studies to date show?
Another question I have: if I get a SNB, do I need to follow the lymphedema prevention guidelines forever? If people can develop LE 20 years out, I'm thinking a SNB will put me on permanent "prevention" restriction for life: no more grocery shopping (I travel by bus or subway to and from whole foods and carry as much as i can a few times a week), weight training as i'm used to, chopping vegetables because I may cut myself (i often do ), and limiting or stopping my work as a massage therapist because even adjusting a table's height or carrying equipment is heavy lfiting, not to mention adjusting and supporting heavier people on the table, etc.? Or do I just need to be careful for X months after surgery?
So far, it seems as if the risks of SNB outweigh the benefits, but I think I'm taking a risk either way. I'd just like to know how much of a risk for each choice and suspect that that's impossible.
Ellen
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Ellen, it is my understanding that the pathology from the lumpectomy will show if any of the DCIS has become invasive. If that happens you can always go back in and have a SNB. You cannot "undo" a SNB so it is good to be sure of exactly what you want. A doctor cannot perform a SNB as a last minute decision in surgery. Without the dye he/she wouldnt know which are the sentinal nodes to be removed, and you sign papers before surgery stating exactly what the doc is going to do to you.
I went to 2 very highly regarded Onc's in NY, one at Mt. Sinai and one at Sloan-Kettering and ended up going with the doctor that took a wait and lets see approach. The other doc was hounding us to get the SNB and I felt as though I was part of her research more than her "patient". As it turned out my pathology came back with no signs of invasive cancer(yay) and a SNB would have been an uneccesary procedure for me.
I do not think there is a "right" answer to your question. If you had a lumpectomy and then some invasive BC was found would you be upset that you didnt have SNB or would you feel comfortable then going in and having another procedure?
HTH, Elana
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Here is a study from Jane Armer from 2004, using 5 point measurement and symptoms and found around a 22% incidence of LE in SNB. The incidence really varies by how it is measured and determined:
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.
SourceMU Sinclair School of Nursing, University of Missouri-Columbia, Ellis Fischel Cancer Center, Columbia, Missouri 65211, USA. armer@missouri.edu
AbstractTo 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 cancer surgery 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.
I also found studies that said there was a 5% incidence of LE with SNB and 18% with ALND--based on "clinician evaluation"--I need to see the article in detail to figure that out.
Ellen: I'd always go with the rule of you can't put things back, and if there's no need, why take it out. You can always go back in later for the SNB, if it's not clinically indicated up front.
Kira
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Kira, We need a research-review article that explains the LE/SNB studies' measurement/criteria inconsistencies, citing all the studies you have found, including what you wrote here, and basically helping all of us sort out the LE risk. --Carol
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I've been going back and forth about whether to get an SNB as I learn about lymphedema and cancer diagnosis. My doctor is willing to do just a lumpectomy and see what the path report says, in fact she suggested it when I expressed concern about lymphedema.
But I keep changing my mind as I try to process a huge amount of information. When I think it's likely I have IDC, I think I should just get the surgery over with quickly in one operation. Then I realize I don't actually know if it's IDC or DCIS and I think I should be conservative find out b4 getting an SNB.
I'm uncertain about so many things. How are IDC and DCIS diagnosed? With FNAs? Only with a path report? With a node biopsy? (That one seems unlikely to me but I read it somewhere.) I have more than nine masses, two were biopsied. If there are so many, isn't it IDC or an early sign of IDC? But the one that was biopsied is only "atypical." But that can become cancer. When I think I have IDC or early signs of IDC, I think I should get an SNB and see if it's spread to the nodes. But then I think, wait, I don't know what it is without the path report of all the tissue. I'm finding it so hard to think clearly.
Can someone can help me make a sensible decision based on my tests so far? I've posted them below my signature.
A caveat: Is this question getting too far away from the lymphedema issue? Should I post this in another group? If so, which group? (My goodness, I can't even decide which group to post a message in! Cancer has destroyed my critical thinking ability!) I hope it's okay to paste my test results here. But, if not, I will delete this message and move it to the group it belongs in.
Thanks for any and all help.
Ellen
12/07/11 – Mammogram – Routine Screening
Comparison is made to exams dated 12/1/10, 2/5/10 and 12/8/09. There are scattered fibroglandular elements in both breasts that could obscure a lesion on mammography. There is a mass with punctuate calcifications I the right breast at 11 o’clock anterior depth. No other significant masses, calcifications, or other findings are seen in either breast.
Impression: incomplete needs additional imaging evaluation. The mass in the right breast is indeterminate. Spot magnification views as well as a possible ultrasound are recommended.
12/16/11 – Ultrasound of right breast
Comparison with 12/7/11, 12/1/10 and 12/8/09
On right spot magnification views, there is a 12 mm irregular mass with indeterminate calcifications extending anteriorly. Additional small mass is seen anterolateral to the index lesion as well. Mild scattered fibroglandular pattern is background.
Cad also utilized.
Real-time ultrasound was performed on the right breast. There is a highly suspicious lobulated mass with ill-defined margin at right 10:00 N4cm, measuring at least 13 x 7 x 10 mm. Additional small irregular and subtle 4 mm masses just medial to the index lesion and approximately 4 cm more peripheral are seen, likely additional disease.
Index lesion was USFNA’s with three passes. Preliminary result of malignancy is concordant.
Impression: Known biopsy proven malignancy. Now biopsy proven malignancy, right upper outer breast with likely small satellites.
12/16/11 – FNA Right Breast
Diagnosis: 10.00 axis, 4 cm from nipple: adenocarcinoma
12/27/11 - MRI Bilateral Breasts
Comparison mammogram 12/07/11, ultrasound 12/16/11
Findings: The background parenchymal enhancement is mild
Within the right breast there is a 1.2 x 0.8 cm irregularly-shaped homogeneously enhancing mass at the 10 o’clock position 4 cm posterior to the nipple consistent with the known breast cancer.
There are multiple scattered enhancing foci and small, irregular masses within the upper outer right breast, anterior and middle depth likely representing additional foci of disease. The largest mass measures 0.7 x 0.6 cm and is located at the 11 o’clock position approximately 6 cm posterior to the nipple. This mass is located 4.5 cm posterior and superior to the known cancer.
The left breast demonstrates no suspicious enhancing masses or areas of ductal enhancement.
Both axillaeare unremarkable. The bone marrow signal is unremarkable.
Impression: A 1.2 cm irregular enhancing mass is seen in the 10:00 axis of the right breast consistent with the known cancer. Multiple enhancing masses are seen in the upper outer right breast suspicious for satellite lesions.
12/28/11 – Ultrasound of right breast
Real-time ultrasound was performed on the upper outer right breast to identify these enhancing lesions. An irregular hypoechoic mass with cystic components measuring 0.7 x 0.6 cm and is located at the 11 o’clock position approximately 7 cm posterior to the nipple. This mass is located posterior and superior to the known cancer.
A few subtle sub-centimeter hypoechoic mass were seen on one-plane only and could be identified with certainty to proceed with a biopsy.
Impression: Benign
A 0.7 irregular mass is seen at the 11 o’clock position approximately 7 cm posterior to the nipple and likely corresponds to the MRI finding. An US guided FNA biopsy with clip placement is recommended.
12/28/11 – Ultrasound guided Fine Needle Aspiration Right Breast with Marking Device inserted and post digital mammographic marker imaging
Clinical Indication: Nodule for USFNA
Correlation is made to prior exams.
A fine needle aspiration was performed for the 7 mm mass located in the right breast at 10 o’clock middle depth 7 cm from the nipple. This was described on the previous ultrasound and MRI reports.
12/30/11 – Clinical History and Pre-Operative Diagnosis
Diagnosis: Breast, right, 10-11:00 axis, 7 cm from nipple: ultrasound guided aspiration biopsy – atypical papillary lesion, carcinoma cannot be excluded
Comment: The current sample partially resembles the previously diagnosed carcinoma in having papillary features and cellular smears, however, it shows less cytologic atypia and dissociation and lacks the necrosis seen focally in the previously sampled lesion.
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Ellen, I'm not the expert on these reports, and I hope someone or several women will come by to give you some interpretational help. But I will say that I think your critical thinking skills are in top form. I wish, wish, wish I had questioned SNB more than I did...with only 5 nodes out (b/c 'sentinel' does not necessarily mean just one node), I have LE. Mild (so far), but LE nonetheless, and I agreed to my SNB as an abundance of caution. In hindsight, now that I know the true LE risk with SNB, I think I inadvertently accepted a more-than-minimal risk in exchange for a SNB that did very little to reduce my bc-related risks. Good for you to pursue the question until you are satisfied you have an answer you can understand and on which you can confidently base your decision.
Carol
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If I were in your shoes I would first determine if you have IDC or DCIS. The difference betwen the two has to do with location - DCIS is contained in the ducts, IDC has broken out of the duct and invaded the surrounding area. Often IDC has some DCIS nearby or surrounding it. If you have DCIS your physician may not feel a SNB is necessary at all, especially if you have a lumpectomy and not a mastectomy. Some ladies have so much DCIS that a mastectomy is their only option, just because you have a scattering of suspicious areas it can still all be DCIS. If you have IDC than I would advise a SNB because you would need to know if your IDC has moved beyond the breast. This will help determine treatment options. My IDC was diagnosed with a hollow core needle biopsy, and confirmed with an MRI. I was initially diagnosed with a suspicious lesion by ultrasound, it did not show up on mammography. I had bi-lat mastectomy with bi-lat SNB. In the OR it was thought that my (cancer side) SNB was clear, but post-op pathology indicated a micromet. My BS (an experienced and forward-thinking oncological breast surgeon coming from an NCI center) insisted on complete axillary node dissection, which was not done until 5 weeks later. It revealed an additional 6mm positive node. This was an outpatient surgery done at an ambulatory surgery center. Hope this helps!
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Ellen--I had a lumpectomy with SNB last February. Two nodes were removed. If I knew what I know now I would have not had the SNB. I developed lymphedema two weeks later. My surgeon was worried that I did have IDC. It was Grade 3. Anyway it ended up being only DCIS. If I could have gone through two surgeries I would rather have done that. The surgery was nothing compared to all of the work with lymphedema. But....I am grateful it was only DCIS. I was aware of lymphedema but really did not know all about it. I even told my surgeon just before surgery that I was afraid of getting lymphedema but he said I wouldn't with SNB. But who knows the state of each person's lymphatic system. Good luck with whatever decision you make. Becky
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Ellen, you really need to discuss this all thoroughly with your treating physician.
I read path reports daily at my work. I do not see DCIS mentioned in your report, only "adenocarcinoma"
The bottom line is that this is a situation where you need to confer and discuss with the treating physician to arrive at a decision.
Good luck.
Kira
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I finally decided to remove only the lump and eight unidentified masses but not have an SNB during my surgery on Thursday, 1/19. Thank you so much everyone for patiently answering my questions and sharing your own experiences. This journey is so difficult and it's so very helpful to get the support I've found here. I would never have been able to plow through all the information without your help. If it turns out that I have invasive cancer, I suppose I'll have to get an SNB. We'll see when I get the results of the path report late in the week beginning 1/22. Thank you again, everyone, my brave and wise new girlfriends. Ellen
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Ellen, fingers crossed for good news and rapid healing.
As Binney says "May all the hands that touch you be healing hands."
Kira
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Thanks, Kira.
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All the best to you tomorrow Ellen. Becky
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Ellen I did the exact thing you are doing. I had a dx of high grade LCIS and an MRI with a lot of enhancment. I elected to do bilateral excisional biopsies first and if we found no invasive, to do my risk reducing BMX without sentinel node removal on either side.
Bet paid off. The surgical biopsies did not find invasive, nor did the bilateral MX. This procedure worked wonderfully for me and reduces my future lymphedema risk very much. Good luck to you and I hope your path report is very good! I wish more women were given this option.
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Thanks Becky and Beacon,
I'm about to leave for the hospital. Not as nervous as I expected to be. Now that I've made a decision on the type of surgery to have, I just want this _insert curse word of your choice_ cancer out! Because of the holidays, I won't get my path report until late next week.
I'll keep you posted. And thanks again for the support and good wishes.
Ellen
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My surgery went very well yesterday. Hardly any pain today and I'm resting comfortably.
Next step: path report. Should be late next week or early next.
Thanks again for all the support and guidance. I could not have gone through this without all of you.
Ellen
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glad things have gone well so far, Ellen!
Dawn
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