NOLA in September?
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I also have lymphedema just from SNB. I had one sentinel node, but she (the best breast surgeon locally to my home) took out two others that were "close by". So I had 3 out total. Oddball, you can always watch that area with MRI and other scans, and you can have an SNB locally if you ever want one. It is not just this one time you can have an SNB. For instance. I was diagnosed and then had SNB during the staging process, then chemo and rads, and then my bilateral MX (after all that) in NOLA. So I had my SNB early on locally. You can have yours anytime later locally. You don't need to do it with your Mx. You should not feel pressured. If you are unsure, keep an eye on it and do it later. Get the MRI guided biopsy you want, later. There is no reason you HAVE to do this now. That is my input.
It is serious business to loose nodes. YES, if you have a dx of cancer, you get at least SNB on that side to make sure it didn't spread there, or have more out if it did. But if you are prophylactic, I would keep unless I was sure there was a reason to remove. And a biopsy is the first thing I would do. I would scan, biopsy, then SNB only if needed.
However, if you choose to do it to be on the safe side, that is up to you. Cancer is one bad ass thing and scares the crap out of all of us!!!
Hope this helps.
OK so "Extended Stacked DIEP" sounds like it is now the new term for what they used to call "Stacked DIEP/Lumbar". It is 4 flaps, 2 belly, 2 butt, and scar goes all the way around. I have that and others here. Mostly it happens when you don't have enough fat in either one place (belly or butt) to fill up your breasts. We survived it!!! And, in stage 2, they pay attention (as in lipo) both the front and back quite generously, so there is an upside. ha.
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Springtime said: "can have an SNB locally if you ever want one. It is not just this one time you can have an SNB. For instance. I was diagnosed and then had SNB during the staging process, then chemo and rads, and then my bilateral MX (after all that) in NOLA. So I had my SNB early on locally. You can have yours anytime later locally. You don't need to do it with your Mx. You should not feel pressured. If you are unsure, keep an eye on it and do it later. Get the MRI guided biopsy you want, later. There is no reason you HAVE to do this now. "
Actually once you have had a Mastectomy you can not go back & do an SNB. You need the breast to run the dye or whatever to mark the Sentinal node.
That is one of the reasons some BS push for it with a Mastectomy...As your only choice after the breast is removed is an Auxillary Disection.
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I had a prophylactic mastecomy on my non-cancer side and the surgeon convinced me to do the SNB on that side (in addition to the cancer side obviously). This is the ONE decision related to BC I regret. Yes, if there had been cancer on that side I would have been faced with a node dissection. But the chances of that were very small and now I have a risk of lymphedema on both sides and need to avoid BPs IVs and blood draws on both arms ( which has turned out to not be easy)
There's not one right answer here, but thought I'd weigh in based on my experience as well.
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Here is the link to the Scrapbook pictures, hope this works Spring!!!
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I had a bilateral mx, one side with cancer, the other was my prophy choice. Cancer side I did have SNB. Prophy side, did not. I was encouraged by LeGarde not to do it, since there was no thought of cancer over there at all. So, if you do not need to do SNB, do not do it. I don't think it adds any info to your picture at all, since you would be doing both breasts prophy to your BRCA status, not because of current cancer condition. Of course, in the end you'll need to do what feels best to you. I had LeGarde, had bmx, and her input was not to do SNB on prophy side.
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Pam, thanks for pointing out the error of my post. I have deleted it.
But Odd could still get an MRI guided biopsy of that area at any time after, right? Or a core needle biopsy. If there is any concern, even though SNB would be out, there are still other surveillance techniques?
Given my experience of getting Lymphedema from SNB, I would not do it on the prophylactic side unless there was a good reason. But this is an individual decision.
TAMMY - it WORKED!!! The are awesome!!! I am so glad I can finally see it!!! Thank you for doing that!!0 -
Odd--I had the same question, with BRCA1+ but no cancer PBM. Dr. D really explained things well to me and I instantly felt comfortable and confident in my decision not to have the SNB. You might post the question on the Ask the Dr. site? I can't remember his exact explanation, but it was something along the lines of where they inject the dye not being exact, # of nodes not being exact, etc. I did not have them, and no cancer was found. You are in excellent hands and they will give you wonderful information and explanations all along the way. I am an "info person" and it was hard for me to realize that ahead of time. Now that I've been through Stage 1 and 2 with Dr. D, I can tell you they are on top of it ALL in my opinion. Good luck!
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Just tossing my experience in the pot on the SNB issue. I had SNB in 2001 when I had my 1st cancer. I got lymphedema in my breast and side, but be aware....you can also get lymphedema from Rads....not just SNB. not sure which caused mine, tho I tend to believe the rads since it is not in my arm. When I got my bilat BMX Dr LeGarde said SNB would probably not work twice, so we agreed to take all nodes on cancer side, but she never even suggested it for the other side. I guess I am just saying...it is all the luck of the draw. You just have to decide what YOU are most comfortable with and do it. No looking back and no regrets...life is too short for that, even without BC! Good luck with whatever you decide!
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I also wondered about SNB on the prophylactic side, and talked to Dr, Stolier about it, since he did the mast part. He also didn't think it was necessary and thought the risk of lymph. outweighed the risk of cancer in the nodes. I had never realized you could get that from just a SNB - which I had on the cancer side 4 years ago. Now I'm thankful for not developing that problem - which I didn't even know was a possibility at the time. But there's one thing that confuses me - I thought they injected the dye at the site of the tumor to determine which node was the sentinel for that part of the breast, and that there are different sentinel nodes for different areas of the breast. If you only find a tumor after cutting into the breast, it's impossible to locate the sentinel node for it. Or is this just some screwy misunderstanding of mine?
Dejaboo - When I was feeling your derriere, it did seem overly firm, altho I had heard that you were somewhat of a hard -ss!
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As I understand it, the breast will drain into one primary sentinel node. Sometimes it becomes 2 nodes if they are nearby each other and the drainage is shared. Once a mx is done, there is no way to check which is the "gatekeeper" node any longer, so if there is a suspicion of CA, they'll want to check the nodes along with the mx. However, if a mx is prophylactic, then no cancer is assumed. The risk for lymphedema is not a solid number at this time, as there are many variables, the primary one being how many lymph nodes were taken out. That said, there are those who have developed LE with no sentinel node disturbance - the mx surgery itself was enough. Things that can also set it off later down the road are: blood pressure taken, needle sticks, infected bug bites, pressure changes experienced while flying in a plane - anything which can compromise pressure or stimulate an inflammatory response. Some people are triggered more easily than others. Some swell more than others. It's good to know about, since those unclear percentages of how many of us get it are somewhere between 5-30%, depending upon which reports you read. A great site is: http://www.stepup-speakout.org which was created by some of our own breast cancer survivors who developed LE. They are medically trained, one being a doctor herself. I developed LE after Stage 1. By Stage 2 I had been diagnosed and had read up on it. While at NOLA, there were extra steps needed to care for my affected arm, as well as my now- at-risk other arm. This is very important to know about so as to prevent this, if possible. Once it develops, it is permanent.
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Thank you all for your feedback and explaining this to me. I think that it might benefit me to have the biopsy done via the MRI guided biopsy on the enhanced area and just get a little peace of mind about it. Just to rule anything out. If it turns out to be negative, then I can rest easy and not do the SNB. One nurse is recemmending that I avoid the MRI biopsy, but I think it would be best to move forward with this if it can help me make a decision to avoid SNB. I really do appreciate all the responses and honest feedback!! Any other advice appreciated. How bad is the MRI guided biopsy??? What do yall think about doing this so that I know where I stand?? Surgery is coming up and I am pressed for time!!!
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I leave for NOLA on Tues and Im getting more and more excited. Since I found out I'm doing the 3D nips there with Donn I realized I haven't researched this at all! I was wondering if it will hurt at all? I had my original mast 3 years ago and went without recon until this March so I don't really have any feeling there at all. Has anyone had it so delayed after their original mast? Funny thing is I have so much faith in NOLA I'm not concerned at all how they will look lol!
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Minn- I dont recall you feelign my Derrier! LOL
from what I recall- the tumor has nothing to do with locating the SNB. I think it is the nipple where they injecct or close to it. I cant remember- most of my research was 2.5 yrs ago before my Lump....And I dont remember alot of stuff.
They are finding increased Lymphedema of the Trunk & chest in recent years & they think that may be from SNBs...Meaning SNBs may be more apt to lead to that kind of Lymphedema vs the arm.
Oddball- I think having the MRI guided Biopsy is a very good idea. That will help you with some answers & help you on your decision. I had an Steriostatic Core biopsy...so I am not familiar with the MRI one.
I would be very excited too Melinda. If you do not have any feeling there. I dont think it will hurt much if any. Good Luck next week!
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I follow this thread daily as I'm preparing for Stage 1 in Charleston. I will be having a prophylactic mast on my good side then DIEP or SGAP. This whole SNB discussion is interesting, as now I am very confused. Like Minnesota said...I, too, was under the impression there had to be a tumor before SNB could be done...that the sentinel node was the first node(s) in the drainage path of THAT tumor. On my initial mx on my right side, I had SNB with the blue dye and radioisotopes. My tumor was on the far right side of my breast. I had 2 sentinel nodes identified...one axillary and one intramammary node..in the center of my chest by the breastbone. So, my tumor drained to an area that far from the initial site. Both nodes were cancerous. BUT, I have never heard of an SNB when there is no tumor...so never dreamed I needed to consider this with my upcoming mast & recon. Am I totally misinformed here???
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You do not have to have a tumor...Or all the BS that do a SNB on a Profalactic side wouldnt be able to do it. With an SNB They are looking for the Sentinal node to check that for Cancer cells.
In some cases maybe the tumor is used for the injection. But in what I have read it is often injected subcutaneously to the areola.
I wonder if someone wants to start a new thread for this...That way others will see it & you can get more opinions on SNB on a Profalactic side.
Beesie might be one to ask also...She probably has some studies she can bring up & also I bet she can explain how the SNB is done
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Two things from me:
Spring- will you go ahead and put me on for Stage 2, Aug. 6, @ Fairway. It's going to be stage 2, but I'm also having a mini-flap taken from my abdomen to augment my left side so that it matches the beautiful new right-side reconstructed breast.
Oddball- I had SNB done by Dr. LaGarde in March when I had my mastectomy. It turned out to be a prophylactic mastectomy, but going in we didn't know what it would be. I had a very suspicious spot on mammogram that was thought likely to be DCIS (which is what I had in my other breast in 2001 when I had my first mastectomy/reconstruction). So, with there being any risk of cancer there, I was advised (and agreed) to do the SNB. HOWEVER: I give you this warning about Dr. LaGarde. We discussed at my pre-op how many nodes she would take. I was hoping for only 1 (which is how many I had removed with my 2001 mx), but she said she likes to take 2. So I agreed to that. But during surgery, she said there was a cluster of 3, so she took 3. I was not happy about that, but she swore she'd never had a patient who developed lymphedema from a SNB/no rads, so I trusted her. But then when I got my path report back (everything was benign, BTW, my entire breast, and the lymph nodes were clear), it stated that there were FIVE lymph nodes sent for biopsy. FIVE, not three, as I'd been told. I called her office and when I spoke to her, she said that it was really just a cluster of nodes, and was actually only 3, but that the pathologist sometimes counted each "bump" in the cluster as one node, hence the 5 they counted. UGh, I was so confused and felt so violated--to me, if the pathologist counts 5 nodes, it's 5 nodes. I saw my oncologist once I got home after my surgery, and he shook his head at Dr. LaGarde's explanation and said that he goes by what the pathologist states, and that if they counted 5, then I had 5 nodes removed, which he thought was way too many for SNB. So for my SNB, I lost FIVE nodes (and 3 minimum). I'm terrified now that I'll develop lymphedema. My advice to you is, if you go with a SNB with LaGarde, BE SURE to tell her NOT TO TAKE more than 2 nodes--period!! Especially for a likely prophylactic mx. Good luck in your decision.
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The dye for the SNB is injected around the nipple. (This is still very fresh in my mind 8+ mos later as I thought it was really painful-another subject entirely.) My understanding of the way the lymph system works in the breast is that the lymph nodes are uniquely located in each person but there is generally a clump of them in the underarm and some more spread out between the nipple and the underarm with one or two first in line (ie sentinel) in the lymph drainage path. So regardless of where the tumor is they are looking for the one/ones first in line, adn exactly where those are varies from person to person.
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Maybe this will help with the lymph node discussion?
http://www.imaginis.com/breast-health/lymph-nodes-2
It seems a little outdated in that most of the women I have read have had SNB instead of auxillary, but otherwise a good read.
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An even better resource!
www.youtube.com/watch?v=Cdl2JhhTfYc
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Great video Sue! So according to this video the tracing substance can be injected around the tumor OR around the nipple.
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There are a lot of good threads on the forum "Lymphedema After Surgery" about SNB, etc
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MRI guided biopsy - I had 2 of these. They are lengthy to do, which may be why a nurse is not recommending it. There is a dye inject through an IV to identify the area in question, then they numb the targeted area and go in through the side of the breast over to the area in question, then they confirm they are in the right area - all this with an MRI, back and forth, and it all takes time. You are numbed for it, so in that way it is manageable, but there are some moments where it can be uncomfortable. The reality is, it's over soon enough and you'll get a definitive answer. I'd take an MRI biopsy any day rather than have an unnecessary SNB, for sure!
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Oddball~I'm so glad my pics helped you out! It was all the awesome women who posted before me that helped me and I just want to pay it forward.
Melinda~that's awesome you are getting your tattoos! No pain for me...I wanted some!!! But nada. I didn't have any sort of tattoos or nipples for 16 years. It was awesome to see my breasts look like breasts.
camiam~that totally sucks how violated you feel. I'm so sorry.
I can't lend any input to the SNB debate. They didn't do SNB when I had my mx in 1992 and 1993. I had DCIS both times. The first one with microinvasion to the chest wall and huge tumor, so that side had 7 or 8 nodes taken out. That's the radiated side as well. The second one hadn't really formed a tumor and then still took 5 or 6 nodes.
Lymphedema can show up years later. Mine did!!!!! I was just dx. Although in learning and reading about it, I think I have truncal in my back and under my arm for several years. I've seen so many docs for the pain in my shoulder and no one ever though LE or the scar tissue and fibrosis from radiation.
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Hi Gals, Lots to catch up on... I am getting very nervous. Stage 1 is scheduled for 7/29. I hope to go back to work on desk duty 2 to 3 weeks after surgery. Is that do able or am I dreaming ?
Regarding lymphedema. I did not have Rads or SNB and still have lymphedema in my left arm and chest where my implant got infected and had to be removed. My massage therapist who is trained in proper massage techniques for lymphedema, said that the lymph glands can be disturbed by drains or surgery. She also said that abdomenal drains can also cause lymphedema in the abdomenal area as well. Not really sure about this but I do know that my left arm and chest swell every day and then the swelling will go down after I rest.
Have a good weekend all,
Lynn
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Hi ladies, read thru pretty quickly so sorry if I'm repeating or missed something.
Oddball, my BC was diagnosed via MRI guided Biopsy. I was high risk as I had an area of ADH=atypical ductal hyperplasia in the other breast previously removed after it was diagnosed on my first screening mamo 2 yrs b/4 the BC diagnosis. My 'suspicious area' on the breast MRI didn't show up on the mammo or ultrasound and looked to be only 8mm. My local MDs are pretty high tech and aggressive and it's a big center SO the question wasn't IF I would have a biopsy it was whether it could be ultrasound guided or we had to do MRI guided...BUT I did not have a prophy BMXscheduled as you do at the time of my issue. My BRCA came back negative-nonetheless I was still considered 'high risk'....At any rate.......The MRI guided biopsy-they use a very large bore needle-like 9 gauge! but numb you up. It is more invasive and my axillary lymph nodes enlarged a few days later following the MRI guided biopsy because they were reactive from the trauma-they were doing their job-BUT it scared the heck out of me because I could feel them and worried it was cancer in the nodes.......My local BS assured me this was what was going on because she was unable to palpate them prior to the MRI guided biopsy-nonetheless, we did an US just to ease my mind. Initially I had a lumpectomy and snb and 3 or4 nodes were removed-some of mine were stuck together, they all came back clean.
Re the lymphedema-most physicians and most patients think/believe the loss of lypmh nodes leads to lymphedema.......on a total dissection or LOTS of dissection- yes.........most lymphedema therapists disagree w/ the typical surgeon thinking/teaching that the LE is from removing lyymph nodes. The LE therapists, physical therapists and handful of lymphologists in the word will say it is ANY interruption in lymphatics which exist THRUOUT the body/skin that causes LE(lymphedema)......these people also believe high dose radiation-which I also rec'd is one of the biggest offenders. My own LE therapist says lymph cannot travel thru scar tissue.
I hope I am not scaring you oddball! I think you are wise to get your MRI guided biopsy so that you can know how aggressively to proceed.
When I made the decision to move forward w/ prophy BMX last summer I had developed truncal LE on my BC side. W/ all that said, I knew if my screening MRI and mammo came back clean I wasn't going to do an SNB.
ok, aNOTHER long post!
Oh yeah Jamieh- yes, I had some major pain/soreness when I finally returned to previous exercises and I waited a long time-it was almost like I could feel EXACTLY where the vessels came out or where he plicated? Our bodies have been thru a lot, are still healing but I'm so excited to regain/ improve strength there. It was definitely alarming the first few times I felt it.
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Personally, I would not have a SNB on a prophylactic mastectomy. Period. But that is certainly my opinion. I have LE on the cancerous side - which developed during rads (and also had axillary dissection) - the MD that did my prophylactic mastectomy never even mentioned possibly doing a SNB on that side. And thank goodness she didn't because I can't even imagine having it on both arms. LE sucks the life out of you at times (or at least it does me) - so, if there is another option, certainly go that route. It sounds like the MRI guided biopsy would be much less invasive, yet still be very informative and a good diagnostic tool.
Everyone with surgeries coming up - you know you will all be GREAT.
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Biopsies I've had them all, stereotatic, US guided and MRI guided. I found the US biposy to be the easiest since it is hand guided and you don't have to be in that vice thing. Both the sterotatic and MRI guided biopsies place your breast in that vice grip thing so that you can't move. With the MRI biposy you have to lie very still on your stomach, they do not want you to move and then you have to put up with all that knocking sound. Very doable.
I too had Dr Lagarde for a SNB on my cancer side during my BM. During my consult she stated that she would remove 1-3 nodes. I was surprised to find out that she had removed 5 nodes. I spoke to her afterwards and she told me that she intends to remove 1-3 nodes and that she removes a clump that looks like it would contain 1-3 nodes. The lymph nodes are contained in fatty tissue so it is really unclear how many lymph nodes are present in a clump until examined under a microscope. Every woman is different but you have between 30-50 nodes in your armpit. On a cancer side I think it is pretty standard to perform a SNB since you only get one shot at the nodes to determine whether there is any lymph node involvement. I agree with Nordy, I would pass on the prophylactic side.
On another note I have been indulging in massages with a therapist that is skilled in scar therapy. I would highly recommend this. It really helps improve the blood flow to incision areas, softens up the scars and helps with nerve regeneration. I get more and more feeling back in my butt each time I go so I can now feel my pants sliding off my ass.
Have a great weekend everyone.
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hmmmmm, hmmmm, hmmmmm.... I think I might be able to throw some tattoos in before I leave on the plane in November (our end of Oct. trip)... Just meandering thoughts... think I might need to call Katie on Monday... I need to go to bed!
PS has anyone stayed at Pere Marquette? I can book it through my reward points for free... supposedly it is in the Marriott chain...
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Hi girlies! Nordy I haven't stayed at Pere Marquette but it looks nice(It's rennaissance?...is that same as Marriott?) and gets good ratings on trip advisor. I have been watching fares/packages and so far best price for me is thru AA pkge and staying at Intercontinental -Pere Marquett was my choice BUT is 120 more so... ya know! Hoping to book in the next week or 2......... arrive 10/28 am and leaving 11/1 pm.
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Nordy-yes I guess pere marquette/renaissance is in Marriott chain-duuh you probably knew that! I just had to check to see if I could do any better...my best deal still to book thru AA from here - unless of course- I have to splurge on the way home and check a bag for 25 bucks......ok I can do this......and hopefully accomplish my other goals: Train for and complete the half in less than 3 hrs and make the final pmt to Dr. D/ CRBS before I go(well before initially negotiated-They were awesome w/ me in finding a way to work things out financially). Ok talk is cheap-off to make it happen! Will let you all know when I click purchase!
Melinda413-it's all about you this week!
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