Lumpectomy Lounge....let's talk!
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On Monday my LEPT confirmed that I now have lymphedema. I've spent 2 days feeling sorry for myself but now it's time to grow up & learn how to best handle this. So many of you seem to have a much better understanding of this than our doctors that I'm coming here for information.
I have no idea what triggered my LE. I flew to CO but this was the 3rd flight I had taken since my treatment was completed & I had no previous problems. I did move from high to somewhat lower altitudes during my visit (& it was pretty warm at the lower altitudes) so that might have been the culprit.
My main concern is that I didn't notice any particular difference in the way my arm felt when it it swelled. If I hadn't put on a top with a snug band just above the elbow, I probably wouldn't have realized there was a problem. When I couldn't button the band (on the right sleeve) I knew I had a problem. (Why didn't I see the swelling? What can I say? I'm 67 & I don't have any desire to study my naked self in a mirror!)
I have been back at the gym since May & work out frequently. When I first went back I worked with a personal trainer on stretching & proper form since I'd been less active for 3 months. I had 6 sessions with an LEPT (& got back full range of motion & strength) & I continue to do (daily) the exercises & MLD routine she taught me. I'm also doing twice-weekly PT for my knee (long-term OA). This is my long-winded way of explaining that my current level of activity (combined with OA & maybe some aching from the Anastrozole) leaves me sore enough that I'm not sure I can recognize the LE ache. Additionally, my right arm is my dominant one & is probably bigger than my left even without the LE (& my arms are so not slim, as my 9 year old granddaughter has often pointed out to me). So I'm wondering how I'll know if I've triggered an LE episode in the future.
I've been measured & my LEPT has ordered a sleeve & glove. I'll wear them when I fly (& maybe if I change altitude significantly when I drive) but when else should I wear them? I don't think exercise has been a problem but obviously I'm not adept at recognizing the feeling of LE. My swelling is minimal now & I don't want it get worse. In addition, do you have any tips for dealing with the sleeve or with LE? I feel like I've been thrown in the deep end without swimming lessons!
Thanks in advance. Hopefully there will come a time when I can contribute to this site, as well as take from it!
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Sorry you find yourself in this pickle, JKL. My question is: Who is susceptible to lympedema? It appears all of us are. Neither of us had positive nodes, we had lumpectomies. We both had radiation. I'm flying to Colorado tomorrow and hope I won't have any problems. One thing to my advantage: I already live at the same altitude as my daughter. When I see my RO in a month, I'll ask her about it and see if I, too, should get a sleeve as a precaution.
MJ
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I just got messaged back by my LE doc. He says the “latest research” my BS’ NP mentioned is incomplete and flawed—it set 10% as the threshold for a volumetric increase indicating the presence of LE, and he thinks that’s simply too high. In my case, that would translate to a water displacement differential of 260 ml—8 fl. oz. Considering that when I first complained of swelling, after factoring in the larger muscle diameter for a dominant arm, the difference was less than an oz., and that there was none when last I was measured, 10% is way too lenient (especially with a high BMI). He says “keep on keeping on:” no needles (other than a cortisone shot or non-tourniquet tendon release surgery for unbearable trigger-finger) or BP on the R arm, and wear compression for all resistance & weight training (keeping it on for the subsequent cardio session as a “transition,” similar to the 1 hr after landing from a >4-hr. flight before removing it), flights >4 hrs., rapid and extreme ascents (sea level to mountains, or express elevators to the top of skyscrapers >75 stories), gardening (protection against burrs & thorns and microbes in soil) and repetitive arm motion against resistance (scrubbing, raking, shoveling, rowing machines and the handles on elliptical machines. He says it’s not necessary if I’m walking, swimming or biking on a non-training day. And this time of year, if there’s sufficient warning of a severe storm or impending tornado or microburst (with extreme air pressure drop), to put on at least the sleeve until the storm passes or has been going on for awhile.
Descents should relieve, not cause LE flares. The swelling is aggravated when the air pressure outside the body is lower than the fluid pressure inside it—and that happens when ascending rapidly. If your LE got worse down in the valley, it was likely the heat and not the greater air pressure. Higher altitude=lower barometric pressure. Lower altitude=higher barometric pressure.
I never experienced LE pain itself, just some tightness of my ring (and the gauntlet I was wearing in flight was too short and I had been eating salty stuff); and the sharp pangs of cording. But it’s pretty easy to differentiate DOMS (delayed-onset muscle soreness) or joint pain post-workout from LE pain. Exercise pain is localized and transient—brought on only by motion or touching a soft-tissue injury closer to the surface. Otherwise, it doesn’t hurt. As I understand it, true LE pain is duller, achy and constant, waxing & waning gradually.
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My RO is the only doctor who has ever mentioned lymphedema to me. He checks me every time I go in, but has never said anything about a sleeve or glove(gauntlet?). Just to be sure I wear gloves when I am working outdoors and not to lift anything heavier than 20 lbs (preferably 10 lbs) with the right arm. I had 5 nodes removed; all were clear.
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KB, YAY on good mammo results! I know what you mean about getting tense before. I was the same.
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Elfmcg - I had two lumpectomies. For me the hardness gradually decreased. I still have some put really have to push around to find now.
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ChiSandy, thanks for all the info. You always seem to have the answers I need!
Maybe I should purchase a ring for my right hand purely as an LE monitor? (I'll explain to DH that it's medically necessary.)
BTW when I mentioned the change in altitude as my LE trigger, I should have said I thought it was going from the lower altitude of Durango back to my DD & SIL's cabin a couple thousand feet higher that caused the LE . And maybe it exacerbated by a 4-hour walk in the heat in Durango (nothing slows me down when I'm shopping). I honestly don't know when it was triggered. I didn't notice anything until the next day. With OA in too many locations to list & some old rotator cuff tears that occasionally bother me, low-level arm/shoulder (shoot, whole body!) pain is pretty much my constant companion. Old age isn't for sissies!
Is the sleeve really hot during exercise? (I am already ridiculously warm.) And do you wear the lymphadiva sleeves? I'm thinking that if I have to wear a sleeve, I might as well go all in. And it might impress my granddaughter - she went off to college last fall & returned with TWO tatoos. (My daughter was appalled.) BTW, did you see the tattoo exhibit at the Field Museum? Fascinating!
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JKL - I won the lymphedema prize too. My understanding was the more lymph nodes that are taken out the greater your risk is. I only had 2 removed and they were both clean. In my case my arm and hand was set on fire maybe 2 weeks into rads, I would wakeup in tears it hurt so bad. RO didn't think it was related. I also had 2 more doctors tell me it is unlikely that I had lymphedema. The severe pain subsided but it still bugged me enough to keep complaining. Finally, my MO referred me to PT, "to see if they could help at all". After 2 sessions of talking to me, trying exercises and finally measuring she came to the conclusion that if "it walks like a duck..." no matter how unlikely, it's highly likely lymphedema. It's a mild case with just over the threshold of lymphedemamonitoring so gave the docs a pass on not noticing. She's taught me MLD, shown me excursuses and how to wrap while we work out insurance covering a glove and sleeve. Luckily with just the MLD and exercise the numbers have gone down. And that's with not doing it as often as I should. I HATE the wrapping so it only happens when it's bothering me badly enough to pull out the bag of wraps. This reminds me to bug the insurance, again, about this.....
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Hi CC2016! I understand your frustration. When all we've had is SNR, it seems most medical professionals believe LE is unlikely. (However, I see we both had radiation & that is supposed to increase our risk.)
My LEPT has a theory that sentinel nodes are often the 1st nodes serving the arm & thus are highly likely to affect lymphatic activity in the arm. Makes sense, yes? It also seems that many of us who experience cording and/or seromas get LE. (I have both; how about you?) So maybe there's a connection there? I just wish these conditions were studied more. I do see discussions of surgery for LE but I'd have to think hard about that! In the meantime, stick with the MLD; I do it twice daily & it seems to help. And reach out if you ever feel down & need to vent - I'm here for you!
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Yep. I blame the radiation. Especially since that's when it started. My PT also suggested it since lymph nodes are so close to the surface getting zapped. Truth told I was PISSED when she broke the news but have gotten better. It was just another step to remind me that I will never be "normal" again. There will always be another medical thing to deal with. Today I saw my PCP office for a throbbing pain in my side...she suspects ovarian cysts or appendix issues. So now more lab work and a CT scan. Been messing with my ovaries with suppression and switching to AIs so suspect that's it but....ugh! And a pregnancy test just to rule that out. It HAS to be negative...could you imagine if not with all the scans and drugs I've had in the last few months!? Just one more thing to worry about..."but stay positive". These folks need some new catchphrases
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Chiming in on the LE. Was told by RO that I was low risk of LE, no need for sleeve/gauntlet when flying. Yesterday, at 6 mos post surgery follow up with BS - discussed this, along with range of motion issues in left (surgical) arm - Referral to Physical Therapy LE Specialist on Mon 7/17. It is perplexing to me that standard of care does not involve taking proactively taking measurements up front so we can monitor for LE.
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CC, my radiation was APBI (with the SAVI) so I don't know whether it affected any nodes (but I guess it doesn't really matter now). I agree with you 100% - it's just another reminder that I'm not normal. I'll send prayers & positive thoughts that your pain is nothing serious & that it's easily resolved. Keep us posted, pls.
CeliaC, I'm crossing my fingers that you don't get an LE diagnosis. (I hope your range of motion issue is something you can resolve with exercise.) I've had your exact thought about pre-surgical arm measurements. I so wish I had done that! My BS mentioned that she was thinking about referring her future patients to LEPT before surgery. That would be the perfect time to get measurements, a post-surgical exercise plan & comprehensive LE info. I'm going to lobby for that the next time I see her. Maybe we can make things easier for future patients. If you do have LE, there are many knowledgeable & generous people on this Board that can help. Reach out if you need anything.
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I'm on the LE train with you girls! I have been receiving PT since April 23 and have a few more weeks to go. I have 4 sleeve's total. I got them instantly so I did not have any of the wrapping. My day sleeves are all Juzo. I have 2 plain ones and one with a print that everyone tells me they like my tatto. I also have a Tribute for night time. It's bright pink! It feels so good at night. The sad part is I had not even noticed that my arm was bothering me. The pain was exactly as Sandy described. The swelling is more in my trunk and surgery area. I wear a compression cami to. I wear the sleeve all the time except when I am around my parents or other people who still do not know I had surgery or BC. Something are better off kept a secret. The exercises really help and the MLD. I get my husband to do that because it feels so good!
Stop the train I want to get off!
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I started with a Juzo sleeve & gauntlet—was measured pre-op by my BS’ NP and bought them locally (at a bc boutique) after surgery in preparation for the European trip I had planned for after rads. She told me that even if I was never diagnosed with LE to wear compression for any flight >4hrs. Once I did develop LE (and especially for playing deep-bodied guitars in warm weather or at high altitudes), I bought a bunch of sleeves & gauntlets (their gloves won’t work because they come in only one finger length and my fingers are too short) in different patterns from LympheDivas. (Juzo’s gauntlets are too short for my palm, and their and Mediven's gloves too stiff and uncomfortable). Because I only wear them for an hour or so at a time for exercise (as well as the length of semiannual intercontinental flights) and not every day, and wash them after every couple of sessions, I haven’t had to replace any yet. I have three different tattoo patterns (koi, lotus dragon, “Music City”), patchwork denim, and leopard-spotted. Also red, black, and fuschia/purple.
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Thank you so much for your response. After I posted my SNB area got worse. Ice was helpful to an extent. It felt like acid being poured under my arm, which turned out to be an angry nerve that was hit during surgery that wasn't happy about post surgical bra support. My breast surgeon put a few lidocaine shots in the nerve and told me to wear my normal underwire to give me the support needed to calm the nerve. So I didn't travel via flights this week after all. But will next week. Path report on Monday, next attempt a to flying on Wednesday. Sending positive thoughts to all.
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My BSO had me see a LEOT before surgery. She did measurements and gave me exercises to do after surgery. I saw her again at postsurgical check- up. Did measurements again, gave me new exercises to do and told me how important to do them during radiation. She also wants to see me once a week during radiation. I had 4 lymph nodes removes and was told that I was at lower risk for developing LE, but that it certainly can happen. Just started rads this week and my shoulder and inner arm are hurting. I will se LEOT on Monday. After reading everyones post, I will make a point to see her each weekm
Hope everyone is doing ok.
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Saw the surgeon today for my three-month checkup. He's ordering an ultrasound of my armpit as he thinks there's a seroma there but wants to make sure that's what it is. I have a "swelling" under my right armpit that is developed breast tissue as a result of having taken digoxin for years to regulate my tachycardia (I was switched to the beta blocker metaprolol a few years ago). But he said he's feeling something in addition to that. It's always something!
Meanwhile, I flew to Denver this afternoon. I'm spending the weekend with my 14-month-old grandson and his parents (my daughter and son-in-law). I knew Felix would be asleep by the time I got to the house so I can't wait to see him in the morning. One of the cats just came to visit me in my room so I'm a happy camper!
MJ
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i am feelinga small lump underneath my incision. Honestly I haven't felt around much, but noticed it when putting on cream after radiation. Of course, makes me a bit on edge. I know my surgeon said the biosob prosthesis might feel hard, etc. Once swelling went down. Maybe that is what I am feeling.
Tapper - you are so right, always something. Hope you can put it on the shelf and enjoy your sweet boy right now.
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Hi Everyone.. seems like LE is a topic today... I graduated to oral antibiotics so praying I won't have to get any more infusions... still don't know how I got mastitis, but it is what it is.. and now my BS said I don't have a seroma, it's LE in my breast, so am going for PT next week.. have to wait til this all clears up before I can get the mammogram.. I'm not as patient as I used to be.. just want this all over with
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ML. I found a small lump as well near my old tumor bed and next to the biosorb. The biosorb is quite round and very hard. Every doctor knows what it should feel like, so if you don't mind getting felt up they can tell you for sure pretty quick. My MO was concerned enough on the other spot to move up my mammo and order an ultrasound which was originally scheduled for the end of August. Even though she was pretty sure it was still scar tissue, I want it to be scar tissue, but I really don't know how it's been changing the last year to be sure. I had it earlier this week. It's in a horrible spot to get a clear look, high and almost to my underarm, so got squished and gooped up way more than normal. Almost as bad as the last time when my skin had just started getting angry with rads but I didn't want to postpone. I've got what's suspected to be fatty and calcium spots. They've got fancier words for it but I can't remember them. That's doctor wasn't recommending a biopsy, just to keep an eye on it and be back in 6 months. He admitted it wasn't there in February. Reports are going to the MO and BS so we'll see what they want to do as well. Got an MO appointment next week. How much you want to bet she or the BS recommends a biopsy, just to be certain? Just to keep me on the stress train a bit longer..
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CC2016 - I see my LEOT on Monday so she said we will check it and have NP check if needed. Gonna drove me crazy til then. Just completed first week of radiation.
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MJ, that is so very exciting! Such a great report! I thought I'd be getting the same recommendation, but my extra report, the Prosigna, came back High Risk, 87% chance of recurrence. I'm just so glad that they have those extra genome tests that can give all of us the most thorough information and can help with making some very hard and scary decisions.
I go in next month for my one year bone density test so hopefully all will be good. Sandy, you and I are alike in not going for the basketball, etc. lol! In fact one of my hips that has been replaced twice already is showing uneven wearing. I'm now totally involved with the studio and my pottery. I know it's not the physical exercise, but it sure does great things for my mental outlook!
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Yay for normal bone density! I was really nervous about it. Last DEXA was two years ago, right before I was diagnosed with BC. I've been on letrozole for 16 months and I was really afraid that my bone density had dropped, especially after I broke my stupid toe 6 weeks ago. (That makes NINE toe fractures, so far). But last week's DEXA looks great!
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Fantastic, Poodles! If it makes you feel any better, I’ve fractured every one of my toes except the big ones. (And all before getting the osteopenia dx).
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Dara, I have never heard of Prosigna test before. Is this new? I had the Onco DX test which was 18. I had to ask for the test as the MO was setting me up for a trial through the Mayo Clinic on chemo because of my age , 44. He seemed surprised I knew about the test, but since I was the 3rd in my family DXed in 2013 with BC we had shared. My sister was DXed the day I was done with radiation, so I passed the Onco info on to her. Since I was an 18 he decided I did not need chemo.
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Ndgrrl, I also had the Onco and my score was 20. on the low side of indeterminate but my MO asked permission to use the Prosigna as it tests a different set on genomes. It's very similar to the mammoprint. I go to City of Hope and they are one of several cancer sites that use the Prosigna rather than the mammoprint.
I was 99% sure I would skip chemo and go straight to rads. My results came back and shocked everyone based on my dx and path reports. But when my MO said I hit the 87% mark it was a no brainer for me. I needed to do everything in my power to ensure this sucker didn't come back.
Well, I just got a comment to end all comments! Yesterday a neighbor who didn't realize I've had cancer for the past year was commenting on my hair. When I mentioned chemo, she said, "you know, I think breast cancer is a blessing! Everyone I know who has had it has had their hair come back curly!" I just kind of stared at her. My look hopefully expressed WT*?
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Poodles, I'm sure you needed a broken toe on top of everything else that has been going on. Geez. How ARE things going? I've been thinking of you!!
Dara, some people are so totally clueless. Maybe that person was trying to make you feel better and find something positive in the whole crappy BC experience but still.......
HUGS!
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Dara, how absolutely insensitive! Poodles, glad you got some good news for a change. You get your Dexa scan every other year? My MO orders them annually.
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Molly, I can only have a DexaScan every other year. Guess that's all Medicare will pay for.
HUGS!
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My lumpectomy was about 7 weeks ago and recently the area is very indented. The scare seems to be like receding into the breast if that makes sense. I did have a lot of tissue taken out, about 5cm according to the path report (she also removed a cyst right next to the cancer) so was actually surprised it looked so "normal" after the surgery.
Anyway I had a benign mass removed a couple months before this surgery, same breast, same surgeon, but it didnt so this indentation thing later.
I wasn't thinking anything about it. Both BS and MO said it is healing well when they saw me last. (Most recent was MO three weeks ago) But husband asked if I was going to go back to have it looked at since it has changed so much. Made me wonder if I should be concerned?
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