A few weeks ago when I was sitting in the sun I noticed my watch felt tight and my lower arm was a bit swollen...thought it was due to the heat so thought nothing of it....however the swelling is more pronounced and I’m finding it difficult to bend my elbow properly...I still can do yoga and can use the arm but it’s not right
I know about lymphodema happening after removal of lymph nodes but my surgery was 26 years ago and I only had a sample removed not a clearance...has anyone else had this and does it get worse?
I’m fed up of everything going wrong at the moment
Barb xx
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I don't know what that could be but I hope it improves rapidly. I'm on the 'fed up with this life channel' too, for my own reasons. Seriously time to switch the dial.
I had a swollen leg and arm for no apparent reason about a year ago. We USounded both. No DVTs, etc. I didn't have a lot of nodes pulled either, and none from my leg/hip. So, it was a mystery, but it did improve with movement, light massage, keeping it raised, etc.
I’ve ordered a compression sleeve thing to wear...I just am so fed up like you...I’m an outdoor girl and my arm looks weird swollen like this...I’m just scared it will get worse and I won’t be able to enjoy my life....just seems to be one thing after another ☹️
Hi Barb, I wrote a post below . Please read it. You should not wear a random compression sleeve without first seeking medical attention. You could actually make it worse! Your arm needs to tended to ASAP, they will reduce the swelling. Then they will measure you for a sleeve so it fits accurately. This is all assuming you have developed lymphedema. Don’t delay finding a specialist.
I think lymphedema can come on any time , but 26 years seems a long time. I have lymphedema which came on a couple of years after surgery and it is worse in the heat, I sometimes have to wear two sleeves and a glove. I would get it checked when you can by a lymphedema nurse. I have found GPSs are not always clued up. And they make beautiful sleeves these days!
Once you have lymphodema...does it ever go away?... I’m just sick of more things going wrong with me...I’ve had a turbulent six months and really this is the last straw
I don't think it does, as it means some of the lymph glands have given up. Mine is managed well with sleeves and regular manual lymphatic drainage, but it is I think around 12-15% larger than my other arm. I have learned to live with it. But you need to take care of getting infections and progressing to cellulitis, hence the need to take care of it in. Daily washing checking and creaming, and massaging it.. I always have a batch of antibiotics to take should it begin to look inflamed. You need good professional advice. I used to go to the local hospice but now the clinic is at the hospital. . it is much better understood now. There is a National Lymohodema Society. Sleeves should be provided on the NHS, and they now have some pretty ones better than the basic fawn I used to always have.
I'm not claiming to be an expert, but when my arm swelled, I watched a lot of videos, read articles about it, etc. I kept it raised and did manual drainage/massage. it was really light work, just to get the lymph moved. I don't have any swelling now, but I do massage it in the hand-to-shoulder direction, for a minute or so in the shower.
I’ve watched a few videos on YouTube and there are some gentle exercises to do to encourage lymph flow...I also use a bristle brush to brush from wrist to elbow...I’ll look for some massage tips...I couldn’t find any acupuncture places or I would try that as well as I’m a great believer in acupuncture for some things
It maybe Lymphedema, I have that, it comes and goes. They removed 18 nodes from my left side . First time I had it on my left hand it got better with therapy, after that my arm was swollen and again with therapy and compression sleeves got better. I never had pain only it was swollen. It is better to let your doctor know.
I don’t have pain but it feels tight and not as bendy as before and looks awful ( I’m quite vain!)... ordered a compression sleeve so will see how I get on with that...do you wear at night?
When it was swollen I had to wear It day and night. My therapist measured it and ordered one for day and one for night. This was 2017! Since then I am better, but whenever I feel it is swollen I wear my night garment and thanks goddess it is under control.
Barb, I would feel so much better about you treating this yourself if you would call your doctor and report this first. I wouldn’t want this to be a DVT and not be treated. I’m with you, I’m tired of this life too. Not any issues, just exhausted all the time. The sun comes out later this week here, maybe that will help! Elaine
The nurse has reported it to my oncologist...who said to report back if it got painful numb hot etc
I’m fed up too....nothing gives me pleasure any more....even riding Bugsy is exhausting and sometimes the pain is unbearable ....what’s the point of it all....staying alive for what purpose?
No you are not being a misery, you are being honest. I’m feeling a bit miserable too so I haven’t been on much. It’s hard to be positive when you are feeling this way.
I’m sorry you’re feeling down as well...I’ve just had an awful six months and feel like my life has no purpose...I feel of no use anymore
Two years ago I was working and looking after a list of patients many I’d known for over 40 years...I was competing in dressage with Bugsy and having lessons and was so fit
I know you shouldn’t hanker for the life before mbc but it’s so difficult...most mornings (or if I wake during the night) it hits me like a ton of bricks as I remember my predicament...I’m only happy when I’m asleep!! It preys on me every minute of every day
At first when I was taking Ibrance and letrazole I actually thought I’d do well and was feeling positive (ish) but after that failed and the Afinitor failed its suddenly occurred to me that the cancer is winning and I feel helpless and sad
I know ladies on here want a pick me up not a misery like me on here but venting occasionally helps others as well as it’s also normal to feel this way too
Barb, are you on Faslodex? If so, swelling of the arms/hands/legs/feet is listed as a more common side effect, with the suggestion that you contact your nurse or doctor immediately. I hope that's not the cause but perhaps best to err on the side of caution.
It can be so hard to turn the downward spiral around when it feels like all the momentum is in that direction. Hope this resolves quickly and it feels like things are starting to go right again.
My left arm has stayed swollen, since fracturing my humerus in April 2018 and has stayed with me ever since. I have attended a lymphedema clinic and have a couple of sleeves that I wear occasionally.
I’ve recently developed pain in my left heel, probably plantar fasciitis and now my left leg from the knee to the ankle is quite swollen.
Have you been bitten or scratched your arm as this can sometimes bring on lymphedema if it is in the side where you’ve had lymph nodes removed.
I hope it improves soon, I hate my swollen arm and always hide it from photos etc.
Get those sleeves out and wrap your swollen leg asap! The moment you see swelling you should wrap it to prevent it from getting worse. Wrapping is an absolute MUST, RIGHT AWAY at first sign of swelling--this can make it go away if you don't wait. IF it gets worse, you will probably need to go back for repeated treatment. Good luck.
The only thing I can think of is when the nurse took my blood pressure on that arm...it was really uncomfortable but I didn’t say anything at the time...that could be just coincidence though
I was told never to have blood pressure taken on side where any nodes were removed. I am 30 years from surgery and have never had a problem—not that stage 4 isn’t a problem! Lots of good advice on here. I trust your arm can recover. Thanks to everyone who shares!!
Nobody ever suggested I have the cuff on the opposite side to my surgery...they nearly always take my blood pressures on the surgery side...in two years I’ve never had a problem nor have I been asked which side was the mastectomy
Have you talked to your doc about your lower leg? ! This can be a sign of a blood clot. You must get it checked ASAP. I had a client with this and I told her to go to the doc and sure enough that’s what is was. I actually didn’t expect that, I was erring on the side of caution and so glad that I did!
I get L-dex screenings for lymphadema. It measures if you are experiencing a problem. My number went up once and I went to a physical therapist that specializes in lymphedema. She was great! Number came right down with proper exercises. She told me she once had a lady that developed lymphedema 40 yrs after her surgery. Let your oncologist know and maybe get a referral for PT. It could really make you feel better.
Sorry no one educated you properly on lymphedema (L). I had it really bad 28 years ago but have had it managed ever since. The rest of your life wear long sleeved clothing when in the sun or else avoid the sun. If you suspect that you have lymphedema, go and get help right away. It almost always gets worse without intervention. L can occur many years after surgery or ANY trauma and to any part of your body: arm, leg, abdomen. I have had it and seen it in all areas. NEVER wear anything on your arm that is too tight (cuts off free flow of Lymph flow). NEVER carry a purse with a strap over your shoulder. Finally, if you get ANY infection in the arm, go to your doctor right away, even in the middle of the night. An infection can lead to a disaster or worse. Once I waited 2 hours till the doctor's office opened and by the time I got there I had a fever already. Do a search for Lymphedema Network.
I’ve just read your intro to this forum....you’re a walking miracle....thanks for your advice re lymphodema...I’m expecting a compression sleeve to arrive today and will wear it and hope swelling decreases
I sincerely care. Lymphedema was painful for me. Worst was not being able to roll over in bed. Let me know what type of sleeve you receive. I used to be a one-person lymphedema support group for the State (Hawaii) but it has been too long for me to remember the type or brand. Mine sure worked. And I followed ALL directions exactly. ThAT'S IMPORTANT.
Make sure it's snug but not too snug. If it's too tight or if you wear a tight bracelet, watch, etc. the flow of fluid would only be hindered and pushed down into the lower arm or hand.
Don't sleep with the sleeve. Do little stretching exercises throughput the day. Just when you think about it, do it for a minute or two. Avoid heat on the affected arm. And never let them do BP or blood draws in that arm. Also, if you have surgery wear a lymphedema alert bracelet. You can order those. I have three. It's doable. Blessings Hannah
Also I was planning to wear the sleeve at night but I won’t now!! You ladies on here are a mine of information thank goodness...nobody tells you these things...the nurse told me to get a compression sleeve but didn’t tell me to refrain from wearing during the night!!
I wore mine one night and my hand was so swollen the next morning. It scared me to death. I went to the doctor who sent me immediately to a physical therapist who specializes in lymphedema. Blessings Hannah
I’ve had lymphedema in my left arm for several years. My left arm is one inch bigger than my right, which annoys me because I have to wear bigger shirts, but is not as bad as it could be. I have a compression sleeve but don’t wear it often. I don’t think you are supposed to wear it at night, but should while exercising. I do a short message daily that a PT gave me and also do yoga daily as the breathing and arm movements help. It seems to stay in check and not get worse, but not going away either. I don’t have my blood pressure taken in the left arm or have needles inserted there. I have read that it can go away. Hopefully this will happen for you!
Yours sounds very similar to what I’m experiencing.... more of an annoyance than discomfort at the moment...it looks big but not too different to the other arm unless you look for it and then it’s very obvious
Hi, lymphoedema can happen at any time. Please speak to the lymphoedema nurse with either your breast care consultant or oncologist. Most private care will give you access for a year to a lymphoedema specialist. It’s well worth doing, firstly for diagnosis and then threatment. You need a made to measure compression. Too lose it won’t work to tight and it will do permanent damage. The advice on lymphoedema is changing quickly and there is a lot of bad advice out there.
If it is lymphoedema I recommend a trip to the lymphoedema clinic in oxford, not covered by private insurance or nhs, but well worth the consultation though the operation is very expensive (think medium sized car).
Lymphoedema can be managed very well if you catch it early and more of a nuisance than an affliction but once the lymph glands are damaged it’s a problem. Jx
I just read this after posting my comment. The docs can be VERY lacking in knowledge about lymphedema. They should have referee you to a specialist straight away. The symptoms they describe is when it has become dire!
Well I thought they were being a bit dismissive...I was in the cancer unit when I was examined not my GP so maybe they don’t think the swellings too bad
That honestly was not in your best interests. There is no level of ok swelling when lymphedema first occurs. As someone else did write, it usually never heals it self. In fact, once you have it is all about maintaining to prevent it progressing. And that is why a specialist is essential, for it to be done right. I don’t want to freak you out but it is always good to be aware. Lymphedema has stages of progression, Yep just like our lovely cancer. As you progress you cannot regress. Hence the importance of proper attention
I’ve had a bad advice on lymphoedema from gps, consultants and breast care nurses. The first time I got good advice was from a specialist lymphoedma specialist and then the consultants at the lymphoedema clinic in oxford. Everyone was so negative or dismissive before that. Prof Mortimer has written a really good book on the condition.
I haven’t read the other responses but sounds like lymphedema to me! Yes, sadly you can get it any number of years post surgery. In fact too much sun is a risk factor just like hot tub. The heat puts the lymphatic system under extra strain. . Do NOT do yoga until you get this looked at by a specialist. See if your hospital has a devoted specialist and see if you can see someone quickly.
Keep your arm elevated as much as practical (above your heart). Take off all tight things including your bra till you get attention
Here is a resource in the meantime. I hope you get to see someone quickly before it progresses. I can’t stress that enough. I’m hoping I’m wrong but best to be sure!
Ugh, I wondered about that. Still, you should leave a message today because they might be checking their phones still for emergencies, which this essentially is that.
Failing that I would call the hospital emergency dept and ask if they have a specialist within/connected to the hospital. Also, some PT’s specialize in so you could try googling “PT + lymphedema” and your region to see what you come up with. Even if they can’t see you in person they can see via video and give you guidance xx
Contact your health insurers - they will be able to direct you to a lymphoedema specialist on their list. Many of them are still seeing emergency patients.
Well I didn’t know there was any risk or I would have said something
I’m hoping to fix it on my own...wear the sleeve and do some gentle exercises and elevate and massage the arm...hope have caught it in time
Apparently there’s a lymphodema clinic at a nearby hospital but not open due to Covid!!!
Thanks for your reply...I do despair sometimes...if this is important then staff should be aware and following correct protocol...I’ve never had a problem with lymphodema in 26 years....I’m a bit cross
Make sure you see my next to last post below for other local suggestions to find someone. For massage - note it is not about rubbing, VERY light slow strokes. Make sure to google a good source if that’s what you need to depend on doing. It has to be done fingers to shoulder (That’s only one point). Also there are exercises, to be done in a specific order. To make sure it the fluid is drained out correctly
As per bp cuffs and blood draws, yes they should always ask anyone who has had mastectomy which side they can use.
Hi Barb ! Just read this post and although I can’t add much more than the ladies have on here , I can give you some links I was given at a free online BC Haven short class on lymphodema just under a month ago .
I wanted to know more , as I sometimes get a tightness in my right upper arm , eg if I have slightly overdone things . I had a right mastectomy, reconstruction and right axillary clearance over 2 years ago and was given a booklet on lymphodema at the time , so I have been aware of generally what I should avoid . I never have bloods taken or blood pressure done on my right side , don’t carry heavy shopping with my right hand and don’t iron or do repetitive or anything heavy on that side , and wear a rubber glove when doing light gardening . Nowadays I avoid hot tubs but I do sit in the sun ( with sunscreen applied heavily to that arm / side ) , though we don’t often get very hot weather in the U.K. !!
I have measured my arms and they are exactly the same size on both sides and my most recent ct scan ( one which was reviewed externally ) surprisingly mentioned that there was no lymphodema evident and that my breast implant was in place !!
On the one hour session there was a lady there wearing a sleeve , who advised only getting measured up properly for a fitted sleeve ( if found to have lymphodema) ,always moisturising the arm daily on the surgery side to prevent cracks in the skin and reduce risk of infection , raising your arm above heart level , and getting a proper qualified person to do lymphodema massage . . I have found gently sweeping upwards and away from the lymph and over my shoulder does help me to reduce the tightness ( but look on the video to see how it should be done properly !) or if you are able to , see a lymphodema nurse soon , better still . Hope it goes ok !
youtube.com/watch?v=mnO02bK...(Not working as expected?) The BCH exercise video
breastcancerhaven.org.uk/ly... All 5 of the BCH lymphoedema videos, including the exercise video
lymphoedema.org/ The Lymphoedema Support Network (LSN) web-site
medic.video/lsn-lymph The videos produced by the LSN
thebls.com/ The British Lymphology Society, a body aimed mostly at professionals working in lymphoedema, but has a service directory at the bottom of the page if you want to find a service local to you
breastcancerhaven.org.uk/Pa... Our website, where you can find all the classes/seminars/support groups we are currently offering
The exercise video was included , for ladies wanting to do stretches , but best avoid eg weight bearing ones !
Sorry those were the links , but not showing as links here ?! x
Teddie these are really fabulous resources! May I suggest you copy and paste them again into a new thread so that anyone looking for lymphedema- related in the search button will find it easily?
Hi Barb, I’ve been using compression sleeves on both arms as I’m in that “lucky” 2-3 percentage that has bilateral breast ca at initial diagnosis. I’ve read what other ladies have written. Definitely stay out of heat/sun without sleeves on. No whirlpools, even when I go for a walk I wear them, even with senior workout classes. I’ve found if I keep them off, forgetting, my hands start to swell first. They took out the most lymph nodes in my right arm so blood pressure/blood draws are only in my left arm. As my surgeon says, for now. As a retired nurse I’m really surprised they did not tell you about never having blood pressures in the affected side, no shots either. Also do NOT sleep in the compression sleeves. A lot of info, sorry. Just wanted to pass on what I’ve learned in the last 5 years. Part of my morning routine is putting on my sleeves for the day. As I live in the southern U.S. staying out of the heat means hybenating with the air conditioner for most of the summer as I find the heat really gets to me now. Last part to pass on, I know you live in the U.K. But I’ve found these great compression sleeves at lymphadivas.com. All sorts of colors and prints, big plus is that they are not as hot as the original ones I got from the physical therapists. I pay out of pocket but they’re worth every penny. Remember though to always check with your docs first before doing anything. Take care, Cathy
Yes I’m disappointed with the breast cancer nurses...I’ve never been asked re arm to take blood pressure on...fgs they can see in my notes where I had the mastectomy...I’ll know for the future...good job I have you ladies on here to consult!!
I’ll see if I can get on lymphadivas and get more sleeves
I don’t think I need worry about heat in the UK...it rarely gets above about 22 degrees!!
I too am one of those twice blessed with bilateral breast cancer, (now metastasized). Blood letting is a bit of a conundrum for me. Most of my lymph nodes were removed from my right axilla and only sentinel nodes from my left. I had lymphedema therapy for my right arm, soon after surgery but they ignored the left. I am a lefty and cooking and baking are some of my occupational therapies. So, I am chopping, slicing, lifting, swiping etc, all the time with my left lymphedematic (not a word but should be ) arm. Needles into any of my two arms are not good and the blood pressure sleeve on either arm hurts. Sometimes the blood pressure cuff is put on the lower arm but some nurses won't do that. Thank you for the recommendation of Lymphadivas.com. I like the name and I will follow it up.
Sorry you won the prize of being in the 2-3% that gets bilateral breast CA. It’s a lottery I would have preferred not to win either. I looked up my last receipt when I got my last sleeves. The site is actually lymphedivas.com. I misspelled it before. I’ve used them over a year now and am very satisfied with their product. If the on-line instructions are a little confusing, which it was for me as my numbers were between sizes when I measured, their customer service has been quite good. If you buy 3 at once you get a discount. So I order that and one more so I have two sets. One to wear and one for the laundry. I wash then in gentle cycle and lay out to dry. They’re so much lighter than the ones I got from the physical therapist and still do the job. Hope the info helps. As for blood draws and b.p. Checks I use my left arm as my surgeon said was ok “for now”. They only took 10 nodes out of that arm. The right is a big NO from now on. When I go to the doc I tell them they have to take my b.p. Down at my wrist as it’s too painful at it’s normal place. So far I’ve been lucky as they work with me except for an E.R. Visit earlier this year where the b.p. Check about put me in the floor it hurt so much! Owie owie!!! Take care
I certainly do...everything’s going wrong...my other horse keeps losing shoes and stood on a nail a few weeks ago so that was septic...vet and farrier bills to pay...not that I mind but poor horse has been suffering...
I don't have a big problem with it. In 2000 with initial diagnosis, I was sent to lymphedema specialist for sleeve and exercises. Little exercises like two minutes of stretching your arm to do regularly. I used to worry about it but haven't with stage 4. I have never had to have my arm wrapped. I was mainly told preventative things to do. Just don't sleep in sleeve and don't let anyone massage your arm who is not professionally trained in lymphedema.
I have lymphdema in my right and it didn't start until a couple years after surgery. To my knowledge it can start at anytime. If it is lymphdema don't ignore it like I did. My arm got huge but since loosing 30 lbs it's better but still is twice the size of my left. I agree with you, I am getting tired of the changes that just pop up
Very frustrating and sometimes I just want to stop treatment and take the roll of the dice.
Thanks for you’re lovely post...I’m glad I make you smile sometimes...we need many of those
Actually I’ve had a less painful day...god knows why I think the warm weather helps though...so I’ve had a little ride out and pampered Bugsy...washed his tail etc...he likes a fuss!... then I’ve sat out in the sun and just done an online yoga class so doing all that has cheered me up....knackered now though...I’ll put a little pic of Bugsy in a post so you can see him with his summer coat
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You should never have it done on your surgery side . This is a definite risk factor. 
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