GRRRRRRRRR I HATE LE..........
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(((((Hugs Tina)))))
Thanks for the info Binney. I will have to wrap then because I am even swollen down to the wrist now. I guess that is what I get for cutting the azaleas back some so I could put lights in them. However the joy that I saw on my child's face last night when she saw them was well worth a swollen arm.
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Kitty - I got my dx last year on the Wed afternoon before Thanksgiving, so we're in the same era. My dh was driving a UHaul back to Dallas from NY with some of my oldest dd's stuff, since she was moving. My parents-in-law had just arrived at my house as I was in my appointment. My youngest dd (who has disabilities) was greeting them. When I got my dx, I had no idea what to do. I knew I could not go home right off, since I needed some time to process. My dh was on the road, but I called him anyway and nearly caused an accident. I forgot to ask him to pull over before telling him my news. We decided not to tell anyone for 3 days. So wild. It's been a heck of a year!
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hmmm
do they look like this?? lol 3jays 0 -
ROTFLOL It feels that way! Thanks for the laugh!
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So funny 3jays!!!!!!
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Suzy....... Right on !
Tina, I so feel like you . Your post hit my heart. It is tough to see pictures of myself three years ago... Breasts.......... thin........... long hair.....never had a pain in my body.....could have more children if I chose...........tiny arms...........
I want her back.... I mean, I like who I am now... on the inside. On the outside..... not yet...
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i am so glad you guys " get" my quirky sense of humour.. not everyone does. i just know that here, esp. if i don't laaugh, for sure, im gonna cry...wrap.wrap.wrap..ive replaced blah blah blah with that for my new mantra... BINNEY.. i thought we were suppossed to stuff the turkey.. oh, stuff it, then stuff it IN US.. i get it. Have a great Thanksgiving, girls. no matter what, we're still here, still supporting each other, laughing and crying with each other.. its a dang MIRACLE!! ok thats enuff of that... 3jays0
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3jays, your photo cracked me up. YES, my right arm looks exactly like that!!!!!
((((Tina))))) your post broke my heart. I had a bmx too. I have no breasts now. I have this LE issue. And sometimes it's just a heavy load, isn't it?
Thank goodness I have this forum...as much as your post hit home to me, it helps so much to know that there are women out there who understand.I got on the computer this a.m. and saw that my husband had been to a Vietnam vet website...I guess there's nothing like connecting with people who have 'been there'.
Now, Tina, go buy you a new lipstick, some new boots (this is my trick), a pretty scarf or something to make you feel better and just move on, girl. Don't sit in it or you'll get stuck there, you know??? (Yes, I am bossy.
) I may have lost my breasts and gained a big fat arm, but I'm still here and damned if I'm gonna sit around and be sad. I'm going to enjoy it. 
Cancer did not win.Love you guys!!!!
Suzy Q0 -
Thank you, all of you, for understanding and being so supportive. I fall down, I get up. And I usually let myself have these little "collapses" because I think crying is healthy, and so is feeling crappy sometimes. I know I won't stay on the ground for long, but I am familiar with the view from here and have made peace with it. It won't swallow me up and often provides great insight. In art, there is negative space and positive space - the negative is needed in order to see the positive. I think emotions are a lot like that.
A bunch of crazy stuff happened last week - way too much on my plate. Meanwhile, I've been researching exchanging my implants. Unfortunately, I found enough info to conclude that I need to let these implants go. In that respect, I do feel good to have made my decision. I had been told in the past by my lymphedema physiatrist and myofascial therapist that if the myofascial didn't work, that it would be best for my LE and health in general to remove the implants without replacing. I know in my heart it's the right thing to do. I need to be released from the pain of these implants so I can focus on other things and move on.
It's just hard to face losing my "breasts" all over again. The recon process was such a hard one for me, and giving up makes me feel like I went through all this pain for nothing. I'm a little angry with myself that I even did it, as I was on the fence to begin with. I know there was no way to predict the future, and I made decisions during a scary and stressful time. I did my best. Being in pain for so long has really taken its toll on me, and I know once I get on the other side of this I will feel much better. However, I feel surprisingly raw right now - I guess I never really had to face losing my breasts because the recon was a little safety net. I don't know what I will look and feel like, and, well, I'm just finding it hard to stop crying. And there's already this small thought in my head: I don't even know where I was or how to start once this is over.
Deep down, I DO know I will be okay and will figure this all out. I trust myself and have confidence in my ability to cope.
This morning I was greeted by this note from my husband:
Good morning
favorite wife who
has always been, is
now and will always
be beautiful in my
eyes and who is
funny and smart
and a good person
who is liked by every-
one and for good
reason!
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He's a keeper! How sweet.
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Tina, your husband sounds as adorable as you do.
I can so relate to so much that you describe. Being without breasts was a major obstacle for me to overcome. I don't like not having them (although honestly, it doesn't really bother me so much anymore) but I don't like the idea of going through another really hard surgery, and like you, it would just not work with my lymphedema. So I am flat. And I am also married to an amazing man, which helps.
Another thing I thought about that I should have put in my original post is this - I could not get past the 'blue phase' or negative space, as you put it, until I was able to get a break from the pain. I take neurontin every night before bed, and between that and voltaren gel, I am able to be relatively pain-free. Before that, my LE was giving me fits. I had not realized how much the pain was draining me - I couldn't rest well, couldn't do anything really, without being in discomfort because of my arm.
I am so sorry that you are struggling with all of this - the implants, the LE - it's just a lot to deal with. I'm sending hugs and prayers your way, my friend. Hang in there.
S.
P.S. edited to say - When I say I'm flat - I mean I'm FLAT. I don't wear foobies b/c a bra really hurts my truncal LE on my right side. So I just walk around with no boobs and if somebody doesn't like it they can kiss my grits. I think I look pretty darn cute.
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3jays.... be quirky and a little " off" 'cause we DO GET YOU !!!! let loose and be freaky...LOL.. I love it!
Susy Q... you bring SASSY to this thread.... YES!
Tina... awe girl........ I am sorry I missed the post where you shared WHY you needed to remove your " foobs" now because of LE.... shoot......... I am sorry sweetheart...... that blows...................... Not the part about having no breasts/foobs... but the part about not having them DUE TO LE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! THAT PISSES ME OFF FOR YOU AND ALL OF US! I wonder if this is why I hurt so much ... I had rads and implants and LE. I feel like a walking time bomb...... ((((((((((((((((((((((((((((((((hugs and kisses to you)))))))))))))))))))))))))))))))
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GOOD AFTERNOON!!! And a Happy Thanksgiving to all!
Thanks again, ladies, for your support. It really has been a comfort. I feel so much better today.
3Js - I forgot to mention I thought your picture was funny. Actually, it's the sides of the trunk that I can relate to, vs. the arms! And, I, too, love your sense of humor. Can you bottle some of it so I can have for emergencies?
Suzy, I am so glad to read your comment about pain. That's great you found medication that works and you feel much better. I keep telling myself that once the implants and the pain they are causing are gone, that it will be easier to deal with being flat. I will have to see whether my truncal LE prevents me from wearing forms, but I'm thinking of going completely flat much of the time anyway. My plastic surgeon didn't put anything in my expanders at the time of my bilateral, and I had to wait a month before he started fills. I never stuffed or padded the whole time I was expanding and was fine with that. Before the expansion process started, I felt great. I'm hoping I will feel similarly, maybe even better since there won't even be expanders in there. Suzy, I just KNOW you look pretty darn cute!!! And I'm going to join you with the "kiss my grits" attitude!!
Laura, thank you for your support and kind words. I've been doubly blessed with capsular contracture AND LE.
Both are on the right side. When either one acts up, it makes the other feel worse. When they're both having fun, I'm definitely not. I have the beginnings of CC on the left side, too, and that seems to be causing some swelling on that side as well. I'm bailing completely on the implants because the research I found shows there isn't a very good success rate for replacing implants due to CC. I just couldn't bear to go through this again, and the surgery worries me as far as worsening the LE. I'd rather be done with it now rather than risk another failure. And I won't have to worry about their shelf life, when they will expire and require another surgery. I just need to make my life about something else again. I will be better able to manage my LE without the implants, too. I don't care enough about boobs to start involving other parts of my body, which might compromise the remaining good nodes that are already picking up the slack. Besides, the rest of my body looks pretty good for 54, so I think I'll just leave those parts intact. 0 -
Tina, I am glad that you found solid research regarding your decision about implant complications. When I was originally working through the decisions about bmx/mx, recon/no recon, I found the info regarding implants to be rather whitewashed. It took me days of researching to find what seemed like balanced info in order to make a decision. We do need to seek a place where we are really, really ok with our decisions. I'm glad for you to have found that spot.
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Hi girls,
I have stage 1 lymphedema and I am a hairstylist too like Laura. I do manual massage and exercises everyday to keep it under control.
Here is a name of a website that is giving away free LE alert bands...
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Laura...I didn't read all of the previous posts to see if someone has mentioned this already but, in New Orleans at The Center for Restorative Breast Surgery Center (where I had my reconstruction), they do lymph node transplant procedures.0
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I have truncal and arm lypmhedema. Been seeing a certified therapist and been doing MLD for some time now. We can't seem to get a handle on this. Therapist thinks that the scar tissue from double MX and axillary node removal as well as my port could be impairing drainage. I wear a sleeve during the day, have tried wrapping at night, but it keeps me awake - in addition to not sleeping well in the first place, it wasn't a good combination. My insurance only pays for two bras per year and I cannot get another order in until Dec 31. My question is - has anyone had swelling in the armpit area that causes slight tingling in the hand? I have been noticing this now for a few days.
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Leslie,
For me, the night time wrapping is the key to control, and I find "less is more"--less tension and the wrap feels actually comfortable for me.
Right now, I'm in a cast, because I fractured my LE hand, and am waiting to be able to wrap again.
Scar tissue can definitely impede drainage and there's only so many alternative pathways for lymph to take--you do form collaterals, but it can take time.
Re: the arm pit swelling--it sounds like some truncal LE maybe--and since your brachial plexus runs in the arm pit (the nerves that run down your arm), it makes sense that pressure in that area could cause hand tingling.
Does your therapist work on your chest/trunk area as well? Some of the women on this board who have arm pit swelling wear night time compression vests and use swell spots.
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Check out the compression bras/camisoles--perhaps that might be helpful.
Two bras a year?? That's not enough, IMO,
It sounds really frustrating for you.
Kira
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Ladies I have read your posts and I am so sorry for the misery bc and LE brings. I wear a Lymphedema Alert Bracelet and have spent over 7 years trying to protect my body from something I really don't know much about. Today I awoke with the right arm on the side by the breast I got bc in in 2003 and the upper arm felt painful like I had a rubber band in it. I could only see my Onc's Physician Assistant who it seems knows "nothing" about LE and she said it couldn't be the beginning of it because my fingers weren't swollen and they did not "tingle". She said the fingers always "tingle" as a sign. So instead she sent me off to get two ultrasounds for a "lump" she found which turned out to be a "fatty necrosis". I returned home still not knowing what is wrong with my right upper arm.
Would you please be willing to give me your opinion of whether or not she is right about whether the fingers have to tingle for one to have LE? I have never heard of that symptom. She never gave me any opinion of what I really needed help for so I still have the same problem. Maybe I just overused the right arm and strained it but I would like to end my fears of thinking it may be the beginning of the LE nightmare that you ladies are suffering with. I just think there are not enough doctors who really understand this horrible problem. If you have any answers you can share with me they will be greatly appreciated.
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medigal - I have no answers for you I just want you to know that I'm sorry and I hope you don't have it. My fingers did tingle, were numb and swollen ... it took several weeks even a couple of months before I realize what was happening. I sure hope it is nothing. Take care. {{{{}}}}
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I can say without a doubt your NP is wrong. I have no problems in my fingers and when I was first DX the swelling only started at my elbow. Now my fingers tingle and sting everyday of my life since chemo but that's from neuropathy. Thank you Taxol!
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Thanks so much ladies for your input. I read that link one of the other posters put up about Lymphedema and it gives a lot of info on how to help one's self. I printed out a lot of it and will try to use it to help myself. After reading your posts, I know this is nothing one should "wait" to see if it will happen. I never expected bc but it came anyway so I just hope I can prevent LE if at all possible. I do hope you all can be as well as possible under the circumstances. My thanks to you!
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Medigal - you are right that the docs are often not very aware of this problem. The ones who train in it, treat it and dx it tend to be specially trained PT/OT's who have done extra training, earning certification through LANA. It's worth seeing one of them if you are wondering about LE. A consultation or two could confirm or rule it out. Are you aware of overusing, or any other situation which could be causing the swelling? My fingers have never tingled, but my arm felt like it had a tourniquet on it. I also have swelling and discomfort in my trunk, alongside my breast. You are jumping in on it soon, if indeed it is LE. Good awareness!
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Thank you Christy! Good link!
I do know about the Node transplant. What I have read... and what Kira and Binny have told me also, it is not showing a good outcome. If it were a 100%fix... I would SO be doing it. I am sure we all would. Here is to hoping what comes in the future.
I do believe, a lot of my trouble is more than LE.
I have a lot of pain on my armpit.. no swelling. I have pain all down the arm... if I stretch it out.. I really feel the pulling. I know I have more issues than LE... but my doctors all just say...." hmmm".
So I really have not been back to them. I am so done. I now do MLD... and wrap and wear compression during the day. This is seeming to keep mine a bay.
Sometime I think.... I would overlook a recurrence, writing it off as yet ANOTHER complication of LE or breast surgery in general... rads... whatever. If I ran to my Onoc every time a pain does not do away after two weeks...... I would be there weekly.
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estepp,
Have you ever seen an OT or a PT? When I was seeing the OT lymphedema specialist she also did some ... I probably won't spell it correctly or have the right name ... faschia release ... before she did those massages I had pain all down my left side and my left arm was soooo tight. I have very little pain now and no tightness. If I don't go to my 2x weekly yoga class it tightens a little but I'm able through exercise to loosen it up again. Maybe this could help you ... ?
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medigal, IMHA, and its not nearly as informed as many here.. this is whats with me.. i have neuropathy in my hand, as well as LE.. the tingling seems to come from the neuropathy more than the le.. swelling is a sign of le for me, and a certain"deadness" feeling, which i get from the extra fluid..doesn't sound like narp knows what she talking about.. my arnp didnt. dr. sent me poste haste to le clinic here. i hope you get help... 3jays0
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Medigal: finger tingling is not a sign of LE.
So many people get swelling in their upper arm, and the forearm and hand are not involved at all.
The diagnosis is often difficult to make: you look for arm circumference changes, changes in skin thickness, sometimes there are color changes--lymph is "white" and can lighten the skin color.
Often the best people to assess for lymphedema are lymphedema therapists.
So, is your arm swollen--can you measure a couple of points on the arm that hurts against the other arm, does the skin look "tight"--no wrinkles--if you hold your arms with elbows bent--do your elbows look the same? Is there ANY redness??
Also, the rubber band thing makes me think of a cord: do you feel a "piano wire" in your armpit? Does it hurt to reach for something?
Most health care providers are not taught about LE, and this PA is dangerous with her "finger tingle" belief.
Was one of the ultrasounds to rule out a blood clot?
Lots of questions, but you deserve answers.
Kira
Here's a good article to send the PA:
http://caonline.amcancersoc.org/cgi/content/full/59/1/8
Here's the paragraph she needs to read:Signs, Symptoms, Diagnosis, and Evaluation
It is important for healthcare practitioners to be aware of signs and symptoms that may be precursors to the clinical diagnosis of lymphedema. A study of patients with breast cancer treatment-related lymphedema was performed to ascertain the predictive and discriminatory validity of using their symptom experiences with limb volume change to determine the presence of clinically measurable lymphedema.55 This would allow for the detection of lymphedema at an earlier stage of development using self-reported symptoms. The study found that the symptoms of "heaviness in the past year" and "swelling now" were predictive of a maximal limb circumference difference of 2 cm.55 Incorporating the findings of this study into daily practice may provide the best clinical assessment data for the identification of changes associated with postbreast cancer lymphedema by using both symptom assessment and limb volume measurements.Signs and symptoms that the patient may present with include a feeling of heaviness or tightness in the limb, aching or discomfort of the limb, restricted range of motion of the limb, and swelling in a portion of the limb or the entire limb. Swelling may also be present in the adjacent upper quadrant of the trunk. Lymphedema patients do not usually present with severe pain. The color of the skin is generally normal, and the temperature of the skin typically feels normal to touch. The swelling is usually unilateral and may include the dorsum of the hand or foot. A deepening of the natural skin folds may be noted. The patient may also present with a Stemmer sign.56 It is possible to have a false-negative Stemmer sign, but to our knowledge, there cannot be a false-positive.56
The risk for lymphedema is lifelong; therefore, the onset may occur at the time of the initiation of treatment or be delayed for several decades.57 If a patient does present with a new onset of swelling after undergoing surgery or radiation therapy, a through history and physical examination should be performed to rule out recurrent or metastatic disease that may be causing tumor blockage of the lymphatic system, as well as to rule out deep vein thrombosis. Once the physician eliminates these possibilities, the patient should be referred to physical therapy for an evaluation to confirm the diagnosis of lymphedema and to objectively quantify the amount of edema present in the limb.
The evaluation of lymphedema should begin with a thorough medical and surgical history. Observation of the limb, including inspection of the skin and palpation, should be performed with the skin mobility, tissue consistency, and the presence or absence of fibrosis noted, as well as whether the edema is pitting or nonpitting. Pain level should be noted as well as the presence of the Stemmer sign. Digital photography and measurements of girth and volume should be performed. Some practitioners consider a maximum girth difference of 2.0 cm or a volume difference of 200 mL in the involved limb versus the uninvolved limb to indicate a positive diagnosis of lymphedema.43 Other practitioners prefer to use a 10% girth or volume difference between the affected and unaffected limb because the former definition does not take into account the patient's body habitus (slim or obese).14,58 Girth measurements are determined through circumferential assessment using a tape measure at predetermined sites on the involved versus the uninvolved limb. The sites of measurement should be determined by the practitioner, and should be a standard point of reference that is reproducible. Anatomic landmarks can be used, or measurements can be taken in intervals along the limb. For example, the leg may be measured circumferentially at 2-inch intervals from the heel proceeding proximally. Volume measurements can be assessed using several different methods: calculation of estimated volume, water displacement, bioimpedance, and infrared optoelectronic assessment. Reliable volume estimates can be calculated using the disk model method on circumferential measurements.59 A volumeter can be used for water displacement with the assessment of the displaced water measured in mL using graduated cylinders. Bioimpedance spectroscopy determines volume by comparing the composition of fluid compartments within the body using resistance to electrical current. This type of impedance analysis has been found to be a reliable and accurate tool with which to measure volume of both the upper and lower extremities in the evaluation of lymphedema.60 Infrared optoelectronic volumetry is a computerized analysis that also can be used in the assessment of volume. The disk model method and optoelectronic volumetry have been found to have better reliability than water displacement volumetry or the frustum sign method of calculation for volume.59 When the diagnosis of lymphedema is confirmed, the patient should quickly begin a treatment program, regardless of the stage or severity of the disease.
An evaluation of the breast tissue in the involved quadrant should also be performed. The onset of breast lymphedema can be early or late. An early onset occurs within two months of surgery, whereas a late onset occurs 20 months after surgery or radiation therapy.61 After breast conservation therapy, all patients are considered to be in a latency stage of lymphedema because there has been some alteration to the mechanical structure of the lymphatic system. Although there may be no visible or palpable edema, the patient may have subjective complaints of breast heaviness or fullness, aches, pains, or a sensation of "pins and needles" (paresthesias). When there is a clinical presentation of lymphedema of the breast, it should be noted whether it is pitting versus nonpitting; whether there is increased volume of adipose tissue8,9; fibrotic versus nonfibrotic changes; peau d'orange skin changes; and subjective complaints of painful, heavy breasts or nipple pain.40 To our knowledge, information regarding the assessment and treatment of breast lymphedema is lacking. Breast edema may be assessed during clinical examination using a subjective classification of mild, moderate, or severe or by comparison to the contralateral breast and determining whether the involved breast is equal, smaller, or larger in size.41 The clinical assessment of breast edema should include clinical history; observation of skin texture, integrity, and color changes; and digital photography.
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Kira, very interesting to read what you wrote about LE often in the upper arm not forearm or hand. I thought that was unusual.......that's the way mine presents. Initially when I tried to tell my Dr. about it she said "oh that's not too bad". Sheesh!!!
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Dear All,
I've just been diagnosed with LE and would love to hear from you what's been mostly helpful in keeping your LE at bay (if that's possible). I had a double mastectomy at the end of June and have just completed 6 rounds of chemo (taxotere, carboplatin, and herceptin). I've done well in managing chemo's side-effects, so this diagnosis comes as a big shock and feels like the straw that's breaking the camel's back. Right now, I have some swelling in all of my limbs and a rash on my arms and torso -- presumably a reaction to the taxotere. But, my left arm (where 9 nodes were removed) is the concern, as it's notably more swollen than my right arm. I'm typing with a compression sleeve on and a glove, and I wrapped for the first time last night. The good news, I suppose, is that I've caught the LE early -- if that makes any difference. (I called around everywhere in the DC area, where I live, to find a LE therapist who could see me and teach me wrapping on short order.) I have no pain or weakness in my left arm. I'm 54 and I love to exercise (step aerobics, Pilates, etc.)
I'd love suggestions about books to read, strategies to try, etc., etc. I've read much of this chain and been moved by your candor, bravery, tenacity, support for one another,and anger.
Big thanks in advance and big thanks for all you've already written!
Katherine
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Kira: Thanks for all the info. May I have an appt. with YOU?
The problem is in the upper left arm where 27 nodes were removed. I have no swelling (at this time) but if I try to stretch out my arm I feel a pulling sensation (not really pain). It seems to be a bit better this morning. The phy. assist. told me yesterday I may have just strained a muscle. I am watching it and if it gets worse will seek better help. She never told me she was looking for anything but the "lump" with the 2 ultrasounds yesterday. I reported her to the office manager so I probably won't hear anything else from her. She had no right to scare the dickens out of me and DP and rush everything like my life was on the line yesterday! One thing I know about cancer lumps is they grow slowly. That is why so many are missed by Oncs and even mammos. I will still be on the watch for other symptoms of LE. Thanks again for all the info and your help. 0
