GRRRRRRRRR I HATE LE..........
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Hey -2. We finally got some rain this week! Thanks; I suppose I have always believed that after having 32 nodes removed that it was just a matter of time until I got LE. I was really hoping that the preventative LVA procedure would help me... and maybe it did. So many unknowns with this stuff. I have an appointment next month with the PS who did my LVA and I'm going to ask about having another procedure to try to get more connections in my arm.
Is "Joan" Joan Ong Yiu? That's the only Joan I see at MDA on the LANA website. Do you have any swelling or other LE symptoms in your arm? I'm just wondering how many people with mild LE are able to deal with it without wearing "garments." I'm going to go that route as long as I can.
I sent an email to the lymphdemachallenger.com website to see if there are any in-depth videos from JoAnn Rovig, and was surprised to get an email response from JoAnn herself! She is such an advocate and a genuinely nice person. Anyway, there are no other videos but her original ones are online at http://www.lymphedemachallenger.com/lymphedema-videos/ if anyone is interested. She also has a self-wrapping video and others on Youtube.
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lw I have mild to moderate swelling in my arm, armpit, and trunk area on my cancer side. All this with only 4 nodes removed. But i find I tend to have "flareups" created by overuse of that arm or heat or perhaps something else like stress. Most of the time I can manage with selectively using gauntlets or sleeves or that wonderful compression bra that Minus 2 talks about. You just kind of have to try a bit of everything and see what works best for you. I haven't been able to find a rhyme or reason but I do think that routine lymphatic clearing by a knowledgeable lymphatic massage therapist worth its weight in gold. I see mine once a month trying to stretch it to every six weeks.
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lw -yup, that's the Joan. I do get some swelling in my chest & trunk - and it can move to my upper arm if I don't catch it.
Lucky you with the rain. I talked to some friends down by the Astrodome and they got a deluge. I'm up by 290 & the Beltway. So far we got ONLY TWO MINUTES on Tuesday and only a misting today. Lawn is brown & crunchy.
Edited to say - one of the major causes that can aggravate my arm is pulling/pushing a vacuum. Guess who doesn't do that often?
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Thanks, Rah2464. I know that everyone's experience is unique (while at the same time it isn't!!) There are so many unknowns in the whole LE thing... who gets it, how severe, and why. I've been learning everything I can about the different self-care routines while basically living my life as usual. I'm calling the MDA PT on Monday to set up an exam and massage, and once again discuss sleeves/gloves since I've had ZERO success finding one off-the-shelf. (That was their recommendation at my last appointment; to get a sleeve "just in case" I fly or whatever.) Today my arm looks and feels totally normal, thank goodness. Hope you're feeling well these days.
Hey again, -2!! OMG, we got a little over 3" of rain in two days. Our lawn and landscaping has totally pepped up today! I'm going to get back to MDA ASAP for a consult and a massage. I'm not noticing the truncal swelling any longer; my PS claimed that was "surgical edema" but it took learning the Lebed Method and lots of stretches to get that resolved. Honestly I haven't found a medical professional (surgeons, PAs, PTs, etc.) that I have had any confidence in as far as LE knowledge. Even the LANA-certified PT I saw last time seemed fairly clueless; they all insisted that I didn't have LE but I know my body and my right arm has definitely changed.
HAHA, vacuuming!! While I was having chemo last year I bought two robotic vacuum cleaners... one for upstairs and one for downstairs. I have been amazed at how well those things work!! That was some of the best money I have spent in years.
I hope the "LE Sisters" will find their way back to this thread. It seems that there isn't a lot of LE support anywhere, so we all need each other... especially the newly-diagnosed.
Happy 4th of July weekend everyone. Hope you are all doing well.
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Hi Lw44- Not sure if this helps but the PTat MDA recommended a just in case sleeve for me, with the appropriate sizing etc. I then took it to the radiation oncologist who wrote a prescription. Insurance covered it.
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Thanks, Bong. I got the same recommendation from the MDA PT for the "just in case" sleeve but I was unable to find an off-the-shelf that would work for my granny arm. (Large upper arm, normal forearm and wrist) Even with a prescription Medicare doesn't pay for LE garments, which is a shame; they are medically necessary so why aren't they covered??
Speaking of the MDA PT... did you like the one you used, Bong? If so, can you give me their name? I haven't been impressed with the ones I have dealt with so far.
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My husband and I liked Erin Austin,and a woman named Tracy. I met with them in conjunction with radiation at Mays clinic
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Thanks. Do you know if they are LANA certified? I think I have had a session with Tracy. I liked having PT at Mays; it's a lot more private than at the main building.
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Hi Lw44 - yes. They are LANA certified.
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So LW reminded me that this thread has SUCH valuable information. How can we keep it going? Post daily to keep it at the top? But still....
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Hey there -2. Thanks for the bump, and I hope a lot of the "OG" posters on this thread are still around. I'd love to know how their battle with LE is going. This thread has been so valuable to me, just reading of other people's struggles that are so similar to my own.
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In the interest of keeping this going, I'll share a little of what my experience with my own LE, particularly in the last 18 months or so
Background: I had a lumpectomy in December 2018 and radiation of the right breast in April/May 2019. Between the two, I developed LE which I first noticed several weeks before rads began. There was significant swelling and pitting in my right forearm. So off to the MO for a referral to a LE PT. Did a little massage, was fitted for medically prescribed compression garments and went on from there. That summer was the worst I felt throughout this whole process from surgical recovery to chemo after-effects to radiation after-effects, you name it. And I was wearing my sleeve and glove daily and a sleeping sleeve nightly. For a time I used a swell spot after I seemed to develop some breast and truncal LE (but mostly it was my forearm and upper arm; still is.)
From then on for many months I wore my sleeve, glove, and sleeping sleeve religiously every day and night with very few exceptions. And every six months insurance allowed me to get 4 new garments (usually 2 sleeves and 2 gloves). I visited the PT every few months. And then she left the practice, and I didn't see an LE professional again until April of 2021 when I saw an MD who specialized in LE - at least partly, anyway. He told me that by this time the swelling in my arm was permanent because the lymph fluid had been absorbed into the existing fat layer which basically changed the nature of that layer, meaning even if I lost weight/fat, that arm would not get smaller. The only way to reduce it would be surgical. Now mind you, the difference in size of the two arms at the time was only about 8%, so it really wasn't that noticeable at a casual glance, but "I" notice it constantly. The really good thing, though, is that I have no other symptoms: no pain, no skin issues, or anything like that. So I'm not suffering from anything but vanity. So I let it go, and continued to wear my garments daily and nightly to make sure it didn't get any bigger.
Then, this past spring I had my now annual visit to my breast surgeon, whom I greatly respect, and she gently asked me whether I might want to try "weaning" myself off the garments. I was shocked and afraid! How could I stop using these things? My arm would immediately blow up, I thought. But I trusted her and started to wear them when there wasn't any reason not to such as during the day when I didn't care who saw me or at night when the sleeping sleeve kept me from sleeping comfortably (like in a smaller hotel bed). And eventually, I was wearing them only when I thought I needed to: being in hot weather for a long period of time; exercising more strenuously (including vacuuming!); flying. And now, I only wear the day garments when I fly and I leave the sleeping sleeve at home. And so far, so good. No blow ups. For now anyway.
As we all know, everybody has a different set of circumstances, but I now believe that for myself, I can go without compression garments most of the time. I will keep a close eye on things, for sure, and meanwhile, I will anjoy the heck out of not wearing those cursed things! I certainly hope that all of you can get to a similar place.
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Thanks for sharing, PiperKay. I have a suspicion that many more women go without compression... probably because they have never been treated for LE and "assume" that they just have edema from the surgical insult. Astonishing that many surgeons still won't admit that their patients have lymphedema and prefer to label it as "surgical swelling," even years after the surgery. I had never heard of LE until shortly before my mastectomy, and what I learned came from this forum and not from my doctors.
Currently I am wearing the Solidea Active Compression sleeve; I am compression sensitive and was unable to wear the typical higher-compression garments. I'm not sure if the "active compression" actually works but it does leave those little groove patterns in my arm so I hope it's moving some lymph as claimed. I'll continue to try to figure this out for myself because I have found the LEPTs that I've used to this point to be mostly a waste of time and money. I did learn how to wrap and how to do MLD, which I consider the best take-aways from PT.
I hope people will return to this thread and share their personal experiences. "Misery loves company!"
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Piperkay, my surgeon and physical therapist also questioned my wearing a daytime sleeve, glove, and nighttime garment. Although my LE specialist disagreed with their assessments, I gave up the nighttime garment a little over two years ago. The last time I wore a glove was for a long flight in 2019. I see my LE specialist twice a year for therapy and measurements. I continue to wear a daytime sleeve but have experienced no flares, fibrosis, or repercussions from ditching the glove or garment. Granted, I have stage 1 lymphedema so that may affect my results.
Thanks to all for keeping this thread alive.
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Thanks to everyone for posting. I have to admit, I'm not very compliant. While I do wear a mild compression bra 24/7, I only wear sleeves & gauntlets when I figure I'm doing repetitive activity - or flying. So far there hasn't been any progression, but I do understand I'm flirting with danger.
Edited to say I hope Binney will check in.
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minustwo, you just stated something that caused me to take pause. I stopped wearing garments years ago because mine were custom made in Germany and were not fitting well. But because of your comment, I realize what my issue is, I DO NOT feel I am flirting with danger, in fact, I am so used to having one arm twice the size of the other, that I am fine hiding my arms in long sleeves! This also explains why I find it so very annoying that my plastic surgeon, a totally amazing doctor, who specializes in lymphedema, is far more concerned about me not getting lymphedema in my right arm from my upcoming surgery than he is about my tissue cancer expanders and implant surgery! He really wants to do surgery on my lymphedema arm.
What is wrong with me? I also feel that my mastectomy with tissue expander is a “no big deal” surgery because it’s an outpatient procedure! I am so ashamed to actually write these words! Seriously, what is wrong with me? I feel guilty taking time off from work for this, I feel as if I did something wrong and I definitely don’t feel worthy of the compassion my family and friends feel for me! I think it has to do with being diagnosed three times! I knew there was something wrong with the way I felt after being diagnosed again, I just couldn’t put my finger on what that was!
I will need to think about this, but maybe I need to get some professional emotional support?
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Mavericksmom yes I hope you do reach out for professional support. You didn't do a darn thing wrong except exist on this planet. I am sorry for all you are going through . It is ok to feel that a surgery is no big deal, it is just how you feel. And heck, you sure are experienced at this point! Please be kind to yourself because you deserve that.
I, too, am inconsistent with my sleeve, gauntlet, compression bra wearing. They all go on for yard work or heavy housework because I have learned those are triggers. Gloves go on for driving or using the lawnmower because I must use a death grip and that is triggering.
My swelling is only noticeable to me, but boy do I feel it. I can have periods of somewhat significant pain (last night was that way after some yardwork). In fact, my reporting of pain that prevented me from sleeping at night was what prompted my MO to set me up for a lymphedema assessment. I can control it with over the counter pain relievers to some extent but glad to hear there are some that don't experience that part of it.
Interesting how we are all different in our response, architecture, etc.
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rah, thank you! I am living the nightmare for the third time and it didn't seem real until recently. I didn't go into "shock" when I got the diagnosis this time, but I thought it was because I wasn't afraid. Now, I know I actually am terrified, but feel as if, since I had it twice before, that I already experienced the "journey" and survived. I wrongly assumed knowing that would change how I feel, so I didn't act like anything was different.
People at work keep telling me how they admire me for my positive attitude, to which I give them my "go to, brave person" answer, "it's the only way to be!" I say it, but don't feel it, and I don't have anyone I can be honest with to express how truly terrified I am.
I am going to seek out professional help, but not sure how to do that. I think I will call my nurse navigator, who I never even met, on Monday. It is so hard because I can't even tell family members, even my husband, what is going on in my head.
When people say "you've got this, you are going to be fine," I hear, "don't let anyone know you are afraid. I think I need to seek out a different topic or start one about the emotional stress of breast cancer.
Thank you rah! Your response was so kind and helpful, and I really do mean that!
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You are welcome mavericks mom. I am sure your nurse navigator can point you quickly to resources or if not, contact your MO or even your GP. Most MOs have connections to therapists that work specifically with cancer patients. The very bravest among us are the ones that can speak up and say I am not ok emotionally and I need some help working through this. Cancer is such a complete head game. ((Hugs))
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Hi all. It's been a while since I've been here. I just had a mastectomy on my right side on the 15th due to a new primary cancer on that side. (Three months short of my 10 year cancerversary from the other side!) Fuck this shit. Can I say that? I thought I was doing okay, having gone through this before, but this morning it feels like everything has come flooding back at once. Going through radiation, the six months of fatigue following that, hospitalized twice with cellulitis and shingles due to LE , then a mastectomy. (This time I went straight for the mastectomy, which I wish I had just done a double in the first place. Oh hindsight, you bitch!🤣) This time around, I have micro-metatases in the one sentinel node that lit up. The appt. with my MO isn't until the 29th. My surgeon thinks they'll want to do radiation again. I kind of just assumed that since there were metastases in my lymph node that they'd want to do chemo, but she thinks that will come down to my Oncotype Dx score. This time around, I'm working full time. I can't imagine going through treatment and working full time. I'm at a different hospital this time due to a change in insurance and I've already gotten misinformation from my nurse navigator. She told me how long to request off from work , told me my drain would probably be removed at my follow up. Um, no, Dr said more like 4 weeks (middle of October) instead of first week in October. My daughter is a chemo nurse at the University Hospital where I went ten years ago. A coworker of hers who just went through treatment for triple negative BC just took a position there as their nurse navigator. (Makes so much sense to have a survivor as Nurse Navigator!) I might just message her anyway. I checked with my insurance and I can get a second opinion on treatment as long as my PCP orders it, it will be covered. But what's the point if I can't go there for treatment? So overwhelmed right now. My DH has MS, so my older daughter (the nurse) is taking some FMLA to help me with appointments and such. Thankfully. I'm still in contact with friends from BCO from the first time around. I may need give them a call. Thanks for letting/listening to me vent
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Hey SWGEEWI! So sorry of your new diagnosis, and after 10 years...just ugh. And yeah, you absolutely can say "fuck this shit." We all get it, having been served that shit sandwich from the cancer buffet. Sorry to hear about your hubby, too... bless you, you do have a full plate right now. You seem to have an excellent attitude so hang in there and git 'er dun. We'll be here in your corner, your pocket, or under the bed with brownies. Just holler and we'll come runnin'. Let us know what the doctor says on the 29th, and here's a big hug for you.
I had a "boo hoo, poor me" episode last night with this LE crap and the never-ending "stuff". I snapped out of it but today I'm back to being mad instead. GRRRRRRRRRRRRRRRRRRRRRR.
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swgeewi, Iw422 said it perfectly! I too am sorry you are going through this again.
I know exactly what you feel like, well, minus the pain. I will get that in October when I have my right mastectomy for my third time with breast cancer. I feel exactly like you do.
Iw422 had I known about your pity party; we could have partied together! My boo hooing was about insurance. I am taking serendipity's advice and not contacting my insurance company anymore unless my doctor tells me I must. Like insurance everywhere you get a call center and a different person each time. I either misunderstood, or was told incorrectly, (that is what I think happened) about Outpatient procedures and difference in billing if kept overnight as outpatient. I too am ok today. My husband and I came up with plans this morning for both scenarios, going home same day or being kept over-night. As for the bills, we will deal with whatever we need to. I am concentrating on the main issue, getting this cancer out of me!
swgeewi, I may have had breast cancer three times, but it doesn't make me an expert! I had no idea they would do radiation if a node was positive. I better not have any positive nodes because that is one bridge I will not cross! I was burned so badly when I had cancer in 2003. I swore then and there I would never allow anyone to use radiation on me ever again! I don't understand where they radiate with a mastectomy????? I couldn't have radiation anyway because I am getting an expander. Again, I am definitely no expert!
One bummer is that all my anxiety triggered my interstitial cystitis. I haven't had an "attack" of that for over 6 months. Tomorrow I will call my urologist and ask to have a urine sample done just to be sure it isn't a UTI.
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Hey MM. Sorry you had a meltdown and I hope you're better today. Sometimes a good cry helps us deal with frustration, and Lord knows dealing with insurance is frustrating. I had the same concerns as you about the outpatient versus overnight stay thing. I fretted over that but it worked out fine in the end. After my mastectomy I did stay overnight in the hospital but it was still outpatient somehow. I was even in a private room and my medicare advantage plan paid for everything. Of course by the time I got to surgery I had had six months of chemo and every scan ever invented, so I had satisfied my $3000 out-of-pocket maximum.
Also, if you get stuck with a bill, tell them you'll pay $10 a month. No need to fret about this stuff; you don't need more anxiety right now. You need to focus on getting better! Take care and I hope the cystitis isn't too uncomfortable.
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Thanks Iw422! Yes, I am fine today. It is the unknown that is the hardest, the wait for biopsy, surgery, etc and insurance adds to the stress!
I have a cap too, and so I don't know why I was so worried. Not that paying several thousands of dollars isn't a lot, but I was afraid of being stuck with tens of thousands, and that won't happen. I think it has to do with getting closer to my surgery date. Things are starting to get real now.
Medical issues scare me even more, but I can't think about getting lymphedema in my right arm or positive nodes, right now. If I get one or both, I will deal with it then. My mind just won't let me go there now. My PS started talking about mapping my left arm at my pre-surgery appointment, but he could tell it was upsetting me when he mentioned it so he said, "lets do that when you have the implant surgery rather than now." That is what I needed to hear! I have finally found a doctor who might be able to help me with this lymphedema, I just can't think of the big picture now, I need to concentrate on one thing at a time.
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I was the same way about my surgery last year. From the day I was diagnosed (IBC), I wanted that thing OFF OF ME NOW; in fact I wanted both of them off. I felt betrayed by my own body but that's another "mental hangup" discussion, haha. So after 6 months of chemo, I thought I was ready to get the show on the road surgically speaking. I was informed that it is not recommended to have a bilateral Mx with IBC; they want the diseased breast removed with the least chance of complications so they can whisk you to rads.
So I was initially crestfallen that I wouldn't have both "Thelma and Louise" removed; only the traitorous Thelma. But like you, the closer to my actual surgery date the more anxious I became. I had to face the huge changes headed my way. The surgery wasn't too bad but of course the drains, swelling, and nerve pain were a drag. I must admit, now that I'm having to deal with LE on one side I am actually grateful that I didn't have a bilateral Mx. (I was going to return for a prophylactic mastectomy but have since decided NO WAY. If there is the slightest chance of LE on my "good" side then I won't even consider it. So I totally understand how anxious you are feeling... so many unknowns to consider.
I dread all the treatment for you, but I feel like you're going to do just fine. Hang in there!!
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thanks for your support ladies! Sometimes it feels like a curse that I’ve been through this before! The waiting is seriously the hardest part. I think your mind has too much time to consider outcomes or visit Dr, Google. I feel like my anxiety’s much higher this time. Probably because didn’t know what I didn’t know first time! MM, I was freaked out, too when they talked about outpatient surgery. I was like-what?? Surgery won’t be at the hospital?? They explained that it will be, but I’d be kept overnight for “observation”. Kind of like having a baby, but not. They’ll consider it outpatient if they can get you out in 23 hours, but if you need to stay longer, you can. Well, they could have just explained that in the first place. I feel like they’ve got a policy that unless the patient asks about it they won’t mention it. Also, since I had issues with lymphedema before, should I be wearing something preventatively this time? Who do I ask? A friend of mine just went to visit a friend of hers who is battling a recurrence after 3 years of initial diagnosis with Mets to many places. They went to a cranberry festival and my friend started feeling sick. She tested positive for Covid and left immediately. Meanwhile her friend in treatment was exposed. I’ll definitely get the new vaccine before I return to work at the Middle School/ High School. But I feel so paranoid now and the what ifs just won’t stop. Big (((Hugs))) to you all
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swgeewi--I'm not sure if you should be doing anything as far as LE since you are less than 2 weeks since your surgery. You might ask your surgeon what he/she recommends. Usually they don't want us doing much in the first few weeks, like not reaching above shoulder level, etc. Were you wearing sleeves and stuff before your last surgery? Hope you're feeling OK these days. I remember the first few weeks after my surgery were pretty tough. Hugs.
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Swgee - LW422 has some good advice.
MavricksMom - it's just crap that you have to go through this again. Holding you in my thoughts. Sorry I left the previous page and this darn BCO "upgrade" won't let me go back to read & still post an answer - but when is your surgery?
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minustwo, my surgery is October 12th.
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Ah.. coming up fast. (but probably not fast enough for you) We will be holding you in our thoughts.
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