I wasn't expecting this ...
I'm sitting here in tears. I wwasn't prepared for this.
I've been going for radiation and in the beginning asked the RO if I should be doing anything since I'm flying to Europe next month. He said well with 30 nodes removed let's send you to a lymphodema therapist. So I saw her a couple of weeks ago. She did an evaluation, measured my arms. She said my right arm, the surgical side, was a couple if centimeters bigger than my left arm and that makes it suspect for lymphodema. She had me make appointments to see her everyday for a week.
This morning was the first visit. My expectations were some manual lymph massage and more talk about a sleeve. Well boy was I in for a surprise. She did do a little massage and then went and got a big cart of supplies. We're now going to wrap your arm. She proceeds to cut foam and batting, unpackaged all kinds of bandages. I was like what's all that for.....duh.
She wraps my arm in layers of foam, batting, gauze and ace bandages from my fingers up to my shoulder. I'm sitting there listening to her talk but not hearing what she's saying....except for the part where she says I have to where this 7/24. What??
I go skipping in there with my work uniform in my bag thinking I be going to work right after.....but no, I can't even fit my arm into my shirt after she's done!!
Is this necessary? I was just thinking compression sleeve for my plane ride next month. Now I'm totally overwhelmed!!
I didn't think I had any symptoms. It seems like overkill to me. Plus the fact that this wrapping feels archaic, like I'm living in the 18th century or something.
Someone has to talk me down! I'm freaking out!!
Comments
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I was rather shocked when my arm was wrapped in similar fashion after one of my LE massages. In the end it didn't do a thing to help my arm, neither temporary or permanent so I discarded the wrapping and do my own manual massage or use my Lymphapress machine if things get tough. Plus I'm right handed and of course LE in my right arm and hand. With wrapping my arm was useless - even my fingertips were wrapped so couldn't do a dang thing. I'm not being critical of the care, but wrapping is virtually impossible to live with. I don't know what the LE therapists expect with this. Perhaps others have more positive experiences and can chime in on why this really is a good idea?
Amy
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I am so sorry, I know this feeling of being out of control. That was smart of you to ask the RO and get the referral.
Bandaging is kind of the foundation of getting swelling down. It does work, and it's more specialized than it looks. The goal is to get the swelling out of the arm so that you can progress to something like a sleeve to keep the swelling out of it. You don't have to live like this forever. Most people don't use it regularly once they are controlled, but there are exceptions. Kira (incredible source of information and an incredible advocate for lymphedema patients) on this board bandaged at night when I was last frequenting this board. I haven't been on much so I don't know if she's still managing that way, but it was a choice she made to have the most control over her life so she could minimize what she did during the day and forego a sleeve. The point is, it's a powerful tool to look upon as your friend, not your enemy, and you are not doomed to it forever. A clunky, annoying friend, but a friend.
Getting the swelling out to begin with is important. If it stays swollen too long, changes happen and the fluid becomes more than just fluid, there is an aspect of scarring or "fibrosis" in the arm. There's not a lot of research about lymphedema (and I'll admit I haven't kept up with whatever's happened in the past couple years), but my understanding of the general consensus is that the massage helps move fluid, bandaging helps move fluid, and some of the things that sort of simulate bandaging, like night garments, help move fluid. Elevation. There are also some expensive devices like the Flexi-touch that sequentially squeeze the fluid out of the arm. The ones that are immediately available when you are first diagnosed are elevation, massage and bandaging.
Unfortunately, sleeves don't push out swelling, they just help keep it from accumulating. They are what you use once the swelling is down to prevent it from coming back.
There are so many potential side effects of cancer treatment that we just don't really hear about unless we're in the world of it. Everybody knows about going bald, but hair grows back. Lymphedema is a pain in the butt that usually sticks around once it's there, but it's also one that you can be in the most control of. One of the things you could do now to gain control is to learn the bandaging yourself and buy some supplies. That way:
1) You can do it in a pinch if you have a flare and want to do one of the most effective things to get the swelling down2) You can take it on and off per the demands of your life, not your therapist's schedule 3) You're not hosed and trying to get an urgent appointment if it comes undone or gets something nasty on it
So when you go back to the therapist, have her teach you as she wraps.
I hate lymphedema. I hate that most of my doctors want to minimize it, and that my surgeon told me I probably wouldn't get it but I did anyway, and that my radiation oncologist would never admit the radiation played any role in it. I hate that referrals to lymphedema therapists are not routine and lots of women get really bad swelling before they get a referral, unless they think to ask for one. I hate that there is so little research and so much mis-information, and that so many people in oncology don't seem to pay attention to the research that IS out there. I hate that I have to think about it a little bit every day. But the thing is, by putting the time and effort in, I can still do what I want to do in life. If I want to go to a wedding without my sleeve, I could do that and I could deal with swelling if it happened. I do anything physical I would have done before lymphedema, but I'm more careful about protecting my hand and arm from injury. It's not as life-changing as I had feared before I got it.
It's horrible when you're first diagnosed. You have every right to be freaking out. But really, It does get better, and it will get better for you faster since you are already advocating for yourself.
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I should have added: nothing that you posted made me doubt the competence of your therapist. But do be aware, being a lymphedema therapist is not like being a "PT" or a "dentist" or a "veterinarian." There's no uniform training or licensing. If at any point you are not sure your therapist is doing a good job, look for another.
This is I think the best website about lymphedema:
http://www.stepup-speakout.org
There are some tips there for finding a good therapist. I was so freaked out I didn't trust mine at first, so I went and got a second opinion from someone with a spectacular reputation in the community, who was unfortunately retiring. In the end, it was my freaking out and not my therapist being incompetent that was the problem, but second opinions (if you are sure it's someone good you are seeing) can be very reassuring.
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Mira: are you right-handed? If righty is your dominant side,,, it is normal for it to be a centimeter or 2 bigger than the non-dominant side. Just wanted to mention that too.
I have never learned to wrap, so if I had a big flare, I'd be in trouble. I am hoping that you will be able to learn to wrap for yourself,, get this under control for now,, and be able to "graduate" to a sleeve for your trip. As flying can flare LE, it is good to be able to wrap in case of a flare. Maybe read around on some of the other threads here,, like "Concerned about flying" for some more advice.
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I also have never been 24/7 wrapped for more than a couple days. My LE girl taught me and I have all the supply's and do try to remember to practice once a month In case I swell up unexpected during my travels or when the LE girl in not available. Well it's been all summer since I wrapped so thanks for the reminder as I practice wrap so as not to forget how to do it. It is a steep learning curve but well worth it.
Wrapping is the pits for sure especially when you get peanut butter etc on your wrapped fingers but........it is the gold standard to managing our condition and it is necessary to keep sanity in this dang LE world we are stuck in. So learning this skill is a must. I'll try to find wrapping post and post as a refresher.
If you are ever wrapped too tight by your therapist or your self ...take it off. You don't want purple fingers. Once my therapist and I were talking quite excited as I was being wrapped. Well I got home and had to rip it off as it was uncomfortable tight. She put all that excitement into my wrapping and she was super experienced to. Now I remain calm and quite when I wrap.
It is normal to have different sized arms. But not a hugh difference. Last week I was professionally measured and my non LE arm is a few centimetres bigger than my LE arm. Probably because I make that my workhorse arm and spare my LE arm heavy weights and heavy chores. My LE arm is my "born with" dominate one but I have switched since LE diagnosis.
Manage LE before it manages you. Knowledge is power when it comes to LE
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Mira, I feel for you, I was in the same boat after a car accident last year. I expected to learn how to massage myself, and I came home in all these bandages, I was completely overwhelmed. I did progress to wearing compression sleeves and a gauntlet, but I did think it all seemed medieval and why isn't it all more advanced by now?
I hate Lymphedema.
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So I met with the surgeon last week. Surgery in two weeks for lumpectomy and axillary dissection. He said he will remove a section of fat and nodes that is about 'five marshmallows' in volume. Does this sound OK? He has assured me two times that I will not get Lymphedema but I am scared. He says not one of his patients has ever gotten it. He knows how to avoid it. Also scared of not being able to move my arm and shoulder, lost mobility. And pain. Recovery time was not discussed. I'm here to learn what I can before it happens. Appreciate all comments and questions
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Dear Marijen,
Welcome to the BCO community. We hope that you find support and information here. Here is a link to our site's information about Lymphedema that you may find of use while you wait on some responses here. Stay connected here and keep us posted. The Mods
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Marijen,
I hope your surgeon is right. I wish all surgeons could say this or even acknowledge that LE is possible. I agree with the Mods read up on lymphedema and make sure that precautions are taken after your surgery. Good luck -
Amy
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marijen,
I too hope you never get lymphedema, but I'm not sure how even the most skilled surgeon can make those kind of promises. Lymph nodes are encased in a fatty type tissue. Any node removal opens the door to the possibility of le, even if it's only sentinel nodes. Asfor pain, mobility, recovery time etc., reading here can be helpful but it is most important that you ask those questions of your surgeon prior to the surgery. Wishing you the best.
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Marijen, I think ALL surgeons say that about LE and maybe they mean it but it's rarely true.
If you have a nurse navigator she can also help answer a lot of questions about the surgery and what to expect, including after the ALND. Unfortunately, ALND (Axillary Lymph Node Dissection) is a bigger deal than a sentinel node biopsy, usually involving a drain and generally resulting in greater recovery time and (sorry) more pain. Knowing in advance what to expect is crucial, so if your surgeon or office nurse can't give you the time to go over EVERYTHING, do ask the hospital's nurse navigator. Good luck.
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Marijen, my surgeon told me the same thing. He still tells his patients that he's never had anyone develop lymphedema from his surgeries, even though I and others are dealing with this. That's partly denial, partly a lack of attention to lymphedema in our doctor-training programs, and partly the fact that many women develop it after they've stopped seeing their surgeon. Too many of us go with our lymphedema undiagnosed and untreated for long periods of time because its unclear exactly which doctor should be taking responsibility for it (not their specialty, y'know?) so none of them do.
Brava to you for asking questions and being proactive! Best bet is to find any doctor on your team who will refer you to a well-trained lymphedema therapist BEFORE your surgery, for baseline arm measurement for future reference, personalized tips for lowering your risk of lymphedema after surgery, and instruction in a simple lymphedema self-massage (it's called Manual Lymph Drainage, or MLD) that you can use to help keep things moving before and after surgery. Any doctor on your team can write the referral, even your PCP, so make like a "squeaky wheel" and get the best shot at avoiding this stupid condition.
Here's how to find a well-qualified lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified...
Here are some risk-reduction strategies you can use:
http://www.stepup-speakout.org/riskreduction_for_l...
And here's a page written about lymphedema by a doctor with lymphedema, especially for doctors who might not be familiar with the latest in lymphedema knowledge. There's a downloadable version you can copy and take with you to your next doctor visit as a talking point.
http://www.stepup-speakout.org/essential%20informa...
I hope some of that helps! Prayers for safe and smooth sailing though all that lies ahead. Please do keep us posted!
Gentle hugs,
Binney -
Binney4 thank you for your comment, a friend said the same thing, that no doctor can predict 100%. But I would rather have a surgeon who thinks he can avoid it than one that doesn't. He made his promise in front of the pathologist and explained to her how he cuts. Something about levels and avoiding a big vein, that he leaves some nodes close to. I don't understand. I don't see him again until surgery. I did go to Lymphema therapist and she took measurements and showed me how to do self massage. Then there are plenty of you tube videos. I have no idea how bad I will feel after surgery but I will make a fuss because the sooner you complain the better off you are. At the cancer center where I will get radiation, they also have lymph therapists, because radiation can damage the nodes. Medicare covers. I don't want it but what can I do?
I see your post from the physician at step up is very long and very helpful. It will take some time to read it all and follow the links. I will work on it. Thanks
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hopeful8201. I will gather my questions and if suegeon's nurse doesn't have time, I will go to nurse navigator. Thank you.
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Xbrnxgrl, I have to have the surgery so I don't know how asking questions will change anything. Maybe as he is getting ready to cut Before I fall asleep I will remind him of his promise....
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Asking questions may not change anything, but since you have some questions about pain, recovery tome, mobility etc., the best thing to do is contact the surgeons office for answers and information. This will help you know what to expect after the surgery and prepare as needed
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Right exbrxgrl. I'm going to do that tomorrow. So the had me on Letrozole for six months and my tumor and IDC shrunk but I think the tumor in my lymph may have stopped shrinking two months ago. I've read the body builds up a resistance. I don't want to keep taking this drug if it's not working. My muscles are very stiff from it. Does anyone get estrogen blood level testing?
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That's a good question Marijen. I'll be asking my onc about it since I have progresson in my spine and started having more frequent hot flashes after about year of minimal to none.
Amy
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Marijen, ask your dr if he will put that guarantee in writing. Like Binney says, many docs believe that none of their patients get LE.
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AmyQ, I read yesterday that hot flashes can be a symptom of cancer. Please let us know what your doctor says
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Kareenie. I thought I might send him an email and ask him to explain it to me again then it would be in writing).
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Marijen,
That's what I was afraid of.
Amy
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Marijen and others
I am sure all of you are aware that docs can make mistakes. You have all heard my story before.....I told my doc(now in his 70's and still practicing so he should have lots off experience)that I was afraid I would get LE, he looked at me like I was crazy and heartily laughed while saying YOU WONT GET LE. We'll hear I am with LE.
Docs cannot promise anything because they are not God although some think they are.
My plastic surgeon who is teaching plastic surgery at the university and is known to be really good showed me pics of his reconstruction works. I was impressed. We'll guess what I got boobs that are uneven with a wide cleavage and I have to wear forms over them to even them out........Another God at work!
I don't want anyone to be disappointed in there Doctor because some are life savers such as my oncologist but on the other hand we should also be buyer aware.
I doubt you could get a doctor to put his promises in writing because you could use that in a law dispute to your advantage.
Knowledge is power and these threads offer the best knowledge as we all learn from people's experiences. It's awesome that we are getting educated here. I've learned so much here.
It's so smart of you to be prepared and aware of your situation Kudos to you and do keep posting especially if you are on holidays and are stuck as what to do if you run into a problem. I hope your surgeon is right and you never get LE You might not. Carol's mom had many nodes out for years and never did get LE. Carol had minimal surgery and got it soon after. Its a crapshoot for sure.
Take care
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For anyone interested I found this on Surgery Technique to Prevent Lymphedema.
http://nyp.org/news/hospital/lymphedema-cancer-patients.html -
Thanks. Going to look at it now. I hope it's a answer to our woes.
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Just scanned the article quickly. It looks like a lymphatic venous bypass. Is that what your doc is doing? Your doc must me a microsurgeon if so as this type of surgery is very detailed. It would be interesting to know how his patients are faring as long term follow ups are difficult to do and this surgery is fairly new. I am no expert on lymph node transplants and lymph bypasses however.
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There was a presentation of results from this clinical trial, which as hugz noted, was indeed to give a lymphovenous anastamosis, at the same time as mastectomy and ALND. The presenter reported that the incidence of LE after this intervention was less than would otherwise be expected in a population of patients with comparable risk factors. He concluded that the method works to prevent lymphedema, but it's important to keep in mind that the average length of patient follow-up was quite short: 6.9 months, ranging from 0.5 months to 24 months. That's way too soon to draw definitive results from the trial, so I hope they're continuing the follow-up and will update the reporting for several more years.
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Carol, I did read your dropbox notes, and was very interested in the silicone tube placement technique. I think it was page 14? I wonder if the silicone tubes were permanent?
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lymphvenous anastamosis, I don't know.I have a msg in to my surgeon asking him to describe his surgical technique with no cases of lymphedema. Will report back when I hear. This is the third time I am asking him about lymphedema because I don't think I can deal with it! We'll see. Maybe tonight.
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