Casualty of U cant have LE from sentinel nodes removal
Saw a breast surgeon today for a consult on my follow up care for my BMX for DCIS. I KNOW I have LE in both arms and truncal. I saw a LE therapist who measured me.
According to the breast surgeon I saw she said." DO you realize how rare it is for someone with just the sentinel nodes removed to get LE in ONE arm, LET ALONE BOTH?"
Then she asked,"How can they know you have LE if you were never measured before you surgery?" By this point I was crying and said, I have no clue. I don't have any training or a medical degree. If I had known I was going to go through all this crap, I would have been measured presurgery. All I can go on is what the doctors tell me. And my surgeon NEVER even mentioned getting measured before surgery."
She also can't stand the Lymphedema Network because according to her, they put out information without any evidence to back it up. She said they go by what this person said, and pass the information down.
Why can't I find good help?
Comments
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Oh, Cinnamon, they're playing mind games with you!
That is so hard, and I'm so very sorry.But I'm afraid the surgeons are usually the hardest to deal with, most threatened by the LE their surgery may have created, so least likely to take you seriously. As some one with bilateral LE after a single node removed from the cancer side and prophylactic mastectomy on the other side (no nodes purposely removed), I can tell you that this is not "all in your head," it's very much in your lymph system, both sides.
I guess in the end it doesn't much matter what they believe about the National Lymphedema Network if they're willing to look at the research themselves. If you think she might be open to it, have her try this page, written by an MD with LE after a sentinel node biopsy, and completely supported by research that's cited right in the article:
http://www.stepup-speakout.org/essential informat for healthcare providers.htmI'm so sorry you were brought to humiliating tears today. I hope you've done something richly chocolate to recover, and you'll soon be ready to get straight back into the fray. Onward, Cinnamon! We're here to help you get control of the stupid LE and keep it that way.
Big, gentle hugs,
Binney -
Me, too Cinnamon: sentinel node biopsy, told my risk was practically non-existant, and here I am. Now if you can just dig deep and find your most diplomatic self despite the hurt, the Step-up, Speak-out materials really are great--and I'm hoping you'll find a way to give them to your surgeon so she will put aside her preconceived ideas and take the time to read and consider the information.
It's horrid that you were treated that way. I am so, so sorry for anyone who is dismissed in this manner.
Carol
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OMG. Can you tell her to take all those words and shove em up....OMG. (edit....edit, Fuzzy....calm...breathe in through your nose....) Sorry, I'm back. Doctors should NEVER MAKE US FERL LIKE WE'RE WRONG WHEN WE'RE TRYING TO TALK SYMPTOMS!!! RARE??? REALLY??? What a bunch of crap. I'd be tempted to never see that one again. But, I'm a little bitter from a recent experience....sorry: )
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Her ignorance and defensiveness are stunning and there is evidence, not just anecdotal information. As the great Andrea Cheville has said, and it's on bc.org, " there is no one test to prove you have LE",
My surgeon was jerk too, and I just had three nodes out. -
Cinnamon--Hang in there. I too had SNB and have arm and trunk LE. My surgeon said I was not at risk. Many of us have been there. We are here to listen.
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Cinamonsmiles: LE was never mentioned to me pre-op. I had the same SNB on one side and bx. My surgeon immediately saw what was happening and sent me to the LE therapist.
I am so sorry for u to have this problem. I read the posts on the LE theme here everyday and it has helped me soo much. Kept me sane. The education from these ladies and the "gentle hugs" left for the ladies comes to me also as I read their posts.
Best of luck,dump the dr. If u can.
Beatmon -
Cinnamonsmiles, as for "evidence"--there was an article in New England Journal about the evidence of what is a sufficient margin for a surgical removal of a breast tumor, and despite all these surgeons having firm beliefs about adequate margins, they found that tiny margins were just fine--went against what most surgeons believe.
When Giuliano did his landmark study of not needing to do an entire ALND if only 1-2 nodes were positive in a T2 or less tumor, lots of "reputable" centers wouldn't participate because they didn't believe that a conservative approach could be appropriate.
So your breast surgeon needs to see the evidence? Well, I heard Otis Brawley, head of the American Cancer Society speak, and he's pushing evidence based medicine to limit over treatment of certain cancers, and a wise physician in the audience said "What to you do when there is NO evidence?" and he said "Excellent point. Strive to create it."
Well, for years there was no evidence for LE, as no one was doing any studies. Now there are more studies, and as usual, some conflict.
There's a great article in the New Yorker about the inherent problems in ANY scientific study, it's called The Truth Wears Off, and the head of LANA sent it to all the LE community.
http://www.newyorker.com/reporting/2010/12/13/101213fa_fact_lehrer
I once heard Janice Cormier, surgeon at MD Anderson talk and she said "I don't treat LE: I cause it."
If only the other surgeons could hear this and understand that it happens, and it doesn't mean they did something wrong, but denying our reality is painful and causes adversarial relationships.
Do oncologists get bent out of shape about chemo brain and neuropathy? And taxanes cause LE also.
Sorry for the rant, but my surgeon was and is a royal jerk about LE, and it obviously still bugs me when someone else is forced to justify their reality.
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Cinnamon, So sorry you had to run into this Doc. please don't give her the time of day. Stay with us where you can get support and validation. I just hate it when Doc's try and make us feel like "it's all in our heads"
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cinnamon-I agree your surgeon is a jerk. I don't understand why others don't understand!!!! Granted, they recieved very little training in LE but they have to listen to their patients & work with them. Even if your surgeon doesn't believe LE exists, you & others do. They need to treat you accordingly. Error on the side of caution, it's not that hard!
I had recent outpatient surgery. I told my GYN that I couldn't have IVs or BPs in either arm(BMX with 4 nodes/5nodes removed). No argument. He said he'd call over to the outpatient surgery dept & tell them they'd have to use my legs. Things went fine with the nurses. The anesthesiologist showed up while the nurse was checking my feet out for my IV. The anesthesiologist offered to take over & placed the IV in my foot/ankle. Then he said to me "the risk of lymphedema is overstated. You shouldn't have to go through life getting IVs in your feet." I replied "hopefully there won't be to many more surgeries for me". I also told him that 95% of cases of LE occur within the first 3yrs of surgery(I did read that somewhere) & I'm less than 2years out. Then I could hear some discussion in the hallway about not using my arms & how somethings would have to be moved around in the operating room(SO!!!!, move them around, how hard can that be!)
I have to say the nurses were great. One of them offered to write on my arms "no BPS or needle sticks". I told her that if I went bad on them & if they had no choice, I'd be OK with my left arm being used.
It's so wrong that you have to struggle with doctors like that.
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I have bilateral and truncal LE after having sentinel node only removed on both sides. My surgeons and primary dr told me it was not possible. I am having to educate everyone along the way. Had a blood draw on my less symptomatic arm last month and it puffed up and hurt so badly. It is still sore. I am headed back to my LE therapist. I told my dr I won't allow any more sticks on my arms. I had an IV in my foot for my endoscopy 2 weeks ago. But my dr says they won't do blood draws from my foot at our hospital. I am not looking forward to this fight...it should not be this difficult to protect ourselves!
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Thank you ladies so much for your support. I am still lost here, but trudging on. Luckily I never have to see her again. I didn't mention that she also told me that since I had gained weight there is no way to tell if I have LE. SO to her, people who are gaining weight can't get treatment for LE.
Surprisingly, her words aren't bothering me much anymore. BUT, she is sending my family dr. her notes. My family dr. is the one that writes my scripts for my LE garments and therapy when I have it. Hopefully, I can convince my dr. not to cut all that off.
My partner, Brian, is so unaware of stuff that I could come home with purple hair and he wouldn't notice. I can hang stuff on the walls and he won't notice. But within the last month, he was looking at me and said something like, omg, you right arm is huge compared to your left arm. So that right there tells me I have it. I know I have it. I can feel the swelling.
BUt best of all, I have all you ladies at my back, supporting me, encouraging me, tellling me your stories and helping me.
You all are so important to me. More than you all will ever know....
Charging forward because you help give me strength...
Cinnamonsmiles
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Cinnamon, Glad we could help and build you up. I know that you will be able to help the LE gang and I one day to, cause we are all in it together and we are a cool bunch of banannas.
By the way I hardly have swelling in my arm and hand but I feel tight and a bit achy at times, so we all don't need that huge arm that the "Doctors In Denial" are looking for. I think they are wanting us to look like the elephant man before they admit to LE. So they can't see the forest for the trees!
Carol and I are going to stick the "Docs in Denial" on top of the Seattle space needle all wrapped up in our dirty bandages one day. Your invited to help. I can feel it coming sooner by the day everytime I hear a story like yours.
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Cinnamon-I think I'm married to Brian's twin
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Coraleiiz, No... I think You,Myself and Cinnamon are all married to triplets bros. I have the "Brian type "also.
It took DH a month to notice I had new glasses that were completely different! -
Re: husband's in denial--mine is big time denier--he doesn't want anything to be wrong, and I heard a story about a husband whose wife developed a Bell's palsy (paralysis of the face) and she yelled for her husband who looked at her closely and said: "You know, maybe you NEVER could blink that eye...."
So, I'll say that line to my dh and he gets it immediately.
I'm so OCD with my wrapping that my LE arm is smaller, but I sure still do have it. I've had experienced therapists look at me and say I don't, and then they feel my arm, and realize I sure do. And check out my hand when it swells!
Cinnamon--my primary care doctor writes for all my scripts and admits I know more than she does, and she's my strong supporter.
Right here on bc.org:
http://www.breastcancer.org/treatment/lymphedema/evaluation/diagnosis
According to Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at Mayo Clinic, it’s important to look at the whole picture: not just size and volume measurements, but the appearance of the limb or other body part. “There is no one value or standard you can use to say, ‘OK, if you meet that you have lymphedema, and if you don’t, well then you don’t have it,’” says Dr. Cheville. “For example, there may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm. So it’s important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture’ — an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger.”
Just send that to your primary, Andrea Cheville is a top researcher from Mayo Clinic in Rochester.
Maybe you never could blink that eye....
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or skin that is less wrinkled and therefore looks younger.”
Ooooh... and LE bonus for a change ?!
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that since I had gained weight there is no way to tell if I have LE.
This is so infuriating, and BALONEY!
I just lost 20 lbs since OCT, but my ring (size 4 1/4) will still not fit most of the time - it did when I was 20 lbs heavier, 7 mos ago. and did not have LE yet The proof is in the pudding, as I always say! -
Boy you guys make me feel good. But I am dreading going to see my family doc and have to complain about yet another dr. that talks out of their ass. (I am currently dealing with a neurologist who makes no sense...finally got the notes from him...he said I had a hip CT scan..what a moron...I NEVER had hip problems and NEVER had a hip CT scan...there were mulitple other problems...he said back in March 2012 that they sent me on my way with a Vitamin D replacement...umm, no asshole, you NEVER told me I have a Vitamin D defecincy so I haven't been taking a supplement. Good grief..its been how many months with a Vit d deficiency cuz of this jerk. I was looking at all my lab reports and Brian says...can you trust that those are YOUR labs? Since he already mixed me up with some other patient in his notes.") My family dr. says my standards are too high for drs and surgeons...
I am not expecting exceptional care, although it would be nice, I am settling for adequate at this point.
I have not been able to wear a bra due to pain issues since I had my BMX (oh, and BTW...that stupid surgeon didn't disagree that I had extremem pain levels.) So something for my truncal LE was out. The ladies at the mastectomy boutique had me try on a sports bra thing that zips in the front. It felt wonderful. And I don' have to worry about clasping the bra in the front, then twisting it around my body which would feel like a blow torch.
THey also suggested I wear my light weight foamy prosthetics (which I bought but never wore since summer 2011). Well, I put them in. Walked over to Brian sitting at his computer, so my boobs were at his eye height. He said nothing. I coughed. He said, yes? I coughted again. He started laughing cuz he knew he was missing something and said, I love you honey. I started laughing. I had to shove them so close to his face for him to notice. I guess he doesn't care if I have fake boobs or I am flat. It was pretty funny he didn't notice though, but knew he was suppsoed to be noticing something and trying not to get in trouble.
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Cinnamon, Brian sounds like a pretty good human being, if you ask me!
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Cinnamon, hooray for the boutique ladies! A+ for them for caring enough to help you come up with a workable garment!
Actually, I'll bet they're as pleased as you are--when you really care about people then it's such a relief and delight to see them get what they need.
Brian's a hoot! How affirming that he's not hung up on the boobs, fake or othewise. YES!
Let us know what your family doc has to say. Hugs,
Binney -
I certainly hear purple re. the ring size. My marker is my bras. I have bras that fit great before surgery. They removed a tennis ball sized lump from my breast and my bras became too small. I lost 30 lbs and the bras were still too small. Finally at 36 lbs lost the old bras fit unless I flare like I am now.
Grrrrr
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I have not read all the posts above, just skimmed so don't know if the following info is already mentioned but:
I've read there's up to a 10% chance of le with SNB. The more nodes taken the more at risk for le you are. There's about the same chance that even tho the sentinal node and other nodes checked are clear that another node with with mets is there.
Some surgeons who do breast surgery are general surgeons who may or may not have an abiding interest in breast cancer per se. I think those who do bc surgery with no medical/surgical interest just might not keep up on breast cancer and its surgical sequelae.
As for criticism for reading on the internet-hogwash. So many respected medical journal articles and information from various physician organizations are on line and available. Docs who don't realize that are closed minded to realities of information technology today and are really insulting.
I was given the good advice to measure my arm before I get on a plane next month and your post is such a reminder for me to do that.
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Am i ever glad I found this thread on my first REAL visit. (I have been reading here for several months, but just signed in) My LE is part of the reason I wanted to sign up to post.
I also only had SE nodes removed but have never recovered from LE. It has spread to both arms, hands and trunk. the trunk is probably the most painful for sleeping !
i also have problems wearing a bra (did have reconstruction) . I found 2 that are OK. One is from Victoria's secret ....it's the only bra they carry without underwire. The other Wacaol....I think it is their only bra w/o wire also
I did find some relief recently from an Under Armour garment. It's like a extra long tank top. the straps are cross-back and it goes down low...way past your waist. I have only had it for 2 weeks. I have worn it every day and night for 2 weeks. (yes I wash it )
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Have any of you tried "LymphaDiva" garments ? I am so sick of these U G L Y sleeves everywhere I go.
The LymphaDiva's are so pretty, but pricey. I just want to make sure that they wash well and hold the compression.
Anyone ?
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Natalie, you might want to start a post on the lymphadiva sleeves and gauntlets--I've never warn them, but I've seen them and know the owners of the company.
There's so much to learn with lymphedema....
One of the things you can do is "search" the lymphedema thread for lymphadiva, and another is check out our website, started by women on these boards: step-up-speak-out.org:
http://www.stepup-speakout.org/
Carol has written a wonderful article about the relative risks of developing LE: and as there's no diagnositic criteria, rates vary, and it was posted on the lymphademablog:
http://www.lymphedemablog.com/2012/09/08/the-risk-of-breast-cancer-related-lymphedema-over-time/
The rate for SNB, with radiation/lumpectomy is 3-23%--how's that for a range?
Kira
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Hi, Natalie, and welcome!
Sorry you had to join our Swell Sorority, but glad you found us. There are several other sleeve/glove makers who make garments in a range of colors: Juzo, Gottfried, Barton-carey. Juzo also has tie-dyed sleeves that are getting good reviews from some of the women here. Less pricey than the LympheDivas, and they can be custom made too.Have you found a good therapist? Usually with treatment the pain from the truncal can be eliminated. Do you have night garments that are working for you now? So glad you've found solutions for the bra problem! Takes some real searching!
Be well!
Binney -
Thanks for all of the information. Yes have night garments...expensive ones..they help but certainly not total relief
Kira - I also meet the 2 ladies that started LympheDivas...................small world.
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Natalie, I never met Rachel--her family has carried on after her death and I've met her parents and her brother Josh, who is now the president. The other woman works for the NLN in San Francisco now.
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I'm a rare case too. I got LE with NO nodes removed. No surgery, no radiation.
The doctor thinks the chemo fried my nodes. SO no one was warning, watching, or expecting it. I don't even know what the statistics are, but I've yet to meet anyone else like me.
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EX. DVD UPDATE:
Hi Ladies
I should begin by stating that I am planning to post this on several LE threads. I would greatly appreciate replies by P.M.In order to add some more credibility to the EX. DVD project, I have been in contact with LOTS of people, incl. but not limited to those in the med (research ) field. I am a tad discouraged ( NOT about the DVD, but for us LE pts )
Prestigious people are suddenly also ' thinking ' about making a DVD! I have been directed to links of DVDs for BC patients that have MISinformation! (made by DRS)
This is upsetting to say the least.At first, I thought- FINALLY! More options for us . Then, after following a link I see things like radiation causing LE ( but I didnt have rads) obesity ( Skinny all my life and now just ' mid weight) People who are inactive . ( I was active to my ability level) People who had lots of nodes removed ( SNB/ 2 here ) etc etc ... yadyadyadyda.... You've heard it all before. I've also seen the use of resistance bands touted, which I believe are contraindicated.
SO, I feel the need is greater than ever and perhaps a bit more 'urgent' for lack of a better word.
PLEASE PM me with your thoughts and whether or not you can be involved ( filming in MA) because if I cannot get enough Lymphedema Ladies from bc.org, I may have to consider my more local support groups. I MUCH prefer you ladies, who I have come to know and care about , but I wonder if the geography will stall the project. One thing I know for sure is that I would like everyone in the DVD to REALLY have LE. I appreciate your support .PLEASE PM me either way.
THX!
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