Vodkasue Sorry didn\'t mean to panic anyone, but I feel that we can sometimes get false reassurances from each other when there may be a possible problem which should be checked out.
I had just got back from a conference when I wrote the reply and was a little angry at learning that one hospital takes lymphodema seriously and regularly measures patients to check for the problem. The surgeon who was presenting, said that in the very early stages it can be reversed (not sure how and unfortunately didn\'t get an opportunity to ask).
Since my op, I\'d been having intermittent arm symptoms (feeling of fullness with achy pain, the odd pricking pain in the tissues and slight intermittent swelling on the inside of my elbow), these symptoms were eased by resting by arm on an arm rest whenever possible.
I reported this a couple of times to breast care nurses, and was just told to keep doing the exercises (which I was doing and is good advice in so far as it goes), but was not assessed/measured.
I then got an infection caused by a very late seroma drainage (which should never have been done apparently), this required an op to drain the abscess and left me with an deep wound in my chest. At one of my appointments at the hospital to check my wound, I talked to the BCN in the waiting room and told her I was still concerned about about my symptoms and worried about lymphodema. She just told me to me not to whinge (which I wasn\'t) and we can\'t fit you with a sleeve with your wound unhealed anyway!
Eventually after many visits and 3 courses of antibiotics, the surgeon finally confirmed I had lymphoedema and I was measured for the first time and fitted with a badly fitting sleeve. Took a further 2 months to get myself properly treated by being referred to a lymphodema clinic as my hospital doesn\'t have a lymphodema nurse........ too expensive I was told.
Sorry, this has turned out to be a vent at my feelings about lymphodema being ignored, though it might help to know of my symptoms and the fact the I had to really persevere to get a diagnosis. I was in fact encouraged to persevere by a posting by another site contributor (Bunty) and I\'m grateful for that.
Because of the compression sleeve (still not perfect but obviously doing it\'s job), I feel things are now under control and in fact I was at the clinic last week and the swelling has in fact decreased and my arm rarely aches now.
My message is, if you are really worried, persevere with getting it properly assessed, it may be nothing to worry about, but it\'s better to know one way or another and get early treatment if needed.
confused Hi Roberta
It\'s hard to know when you should go see the breast care nurse. I can not remember a time since i had my op when my arm did not ache or inch and make my hand feel funny. When i last spoke to the bc nusre she said i was to use my arm as normal as possible, but it\'s always a worry.
Not to frighten anyone Some of the replies on this thread do sound like you should be getting at least checked out for possible mild lymphodema. In the very early stages, it is possible to reverse the problem and the early it is dealt with the better.
Any feelings of fullness with achy pains actually in the arms themselves should be reported to your breast care nurse (and don\'t be fobbed off!). It is also sensible to rest your affected arm when sitting down (arm rest with cushions). If this helps any pain you get, then I would advise you to get it checked out, if only for reassurance.
Another tip is if you suffer from these symptoms, is to get a sleeve to use when flying as this can be preventative measure for compromised arms.
Good luck and I hope that all of you are just worrying without a cause.
pain in the ar......m Hi Sue
Yes mines the same, I had my op last June and I read about lympodema and was so paranoid about it, My arm is numb from the armpit down to my elbow but sometimes I swear I can feel it itching but can feel nothing when I try to scratch it and then theres the stabbing pains Oh Joy!!!!xxxxx
Beryl I am suffering from a lack of being able to grip. You are right about people though they think once your hair as started to grow back and you have finished treatment then all\'s well! They do not seam to understand that even being on Tamoxifen that this brings it\'s own problems! I have put on weight and still going even though I try and go to the gym.
Life is never going to be the same again.
Also worried about going on holiday incase I burn my arm or get bit by bugs.
I sound like all i do is moan nowadays but thats not me really.
All the best to everyone X
lYMPHOEDEMA Thank heavens for this forum - now I know I am not alone in being paranoid about lymphoedema. I feel my arm, measure it, check it in the mirror! I have a slight swelling at the wrist and at the elbow, and keep hoping it won\'t get worse. I also thought that after surgery life would go on as before but now know different. I am a very keen gardener and the day after my surgery the bc nurse told me I would never be able to dig, use wheelbarrows, move pots or do any other heavy work - you can imagine how down I felt. My surgery was on my right breast (two lumpectomies/ax clearance 16 Aug 05 and 21 Sep 05) and I am mainly right-handed. I have constant feeling of heaviness and quite often pain on the outside of my arm from elbow to shoulder (this area also feels cold), and prickling pain around the axillary scar, plus the breast scar is too painful to touch. My grip is also affected.
To vodkasue Pain in arm Hi vodkasue, I had a mastectomy with lymph nodes removed in March2005 and had alot of pain in my arm which is definetely due to nerve damage and the best thing is to keep doing the exercises but I also found that things improved when I stopped wearing my watch on that arm. The arm had been fine for months apart from the numbness which I don\'t think will ever alter but recently my hand and lower arm have become very uncomfortable and feel really heavy and ache like mad. I drive for a living and wonder if that\'s the cause but am going to see the consultant about it because although it\'s not swollen it getting me down coz I don\'t know what to do with it when it aches so much. I also worry about lympodema and realize the importance of avoiding it. I also find that the grip in my hand seems to be getting less aswell. As I read somewhere else on this website having breast cancer is a life sentence and everybody seems to think once you\'ve had surgery and treatment that\'s it. I thought that at first and couldn\'t understand why anyone got depressed about it but I would say that 13 months down the line I feel worse than I did after surgery. I had my ovaries removed in June aswell and am on Tamoxifen and I feel awful sometimes with severe mood swings, tiredness and generally a feeling of not being able to do what I did before. All the best to you.
Hi to all Many thanks to all of you for the replys. At least now i now i am not going daft on my own !! I too stand in front of the mirror and make sure i can still feel my bony bits, though there is many of those!!
Very new to this site everyone is so helpful and supportive.
Love to everyone
Hi Vodkasue Hello I also have the same worrys as you about pain in my arm I posted on this site for ADVICE PLEASE and recieved some good replys like you have. If you look at my profile you will see we had our ops at the same time so guess things with us are normal but I still do panic at times about getting Lympodema so you are not alone!
yes i am always check my arm just in case ,i also keep looking in the mirror and comparing it to my other arm !!! you are not alone, xxxx
May never be normal!! Just to tell you that 5 years after surgery my arm does not feel completely back to normal. Apparently a lot of nerves are cut during axillary clearance and node removal and although many mend themselves (hence pain and strange hot feelings) some never quite make it and I have areas of numbness still and the armpit itself is often slightly tender. Do keep exercising but don\'t worry - pain and tingling is not necessarily signs of lymphodema but probably only of healing and repairing. And I don\'t know if it\'s any comfort or the reverse bit I STILL feel my arm sometimes to check it\'s not swelling!
Thank you Hi Dippy & Zeb
Thank you for that. I thought I was going nutty ! It\'s nice to know I am not alone when I say I am scared and parnoid about lymphodema.
You think once you have been told you have cancer thats as bad as it gets , my feeling was have treatment then get on with life , but this is one club you can not leave. But hey I get to talk to you guys .
Do you constantly feel your arm to reassure yourself it\'s ok??
Hi you all I am sure I answered something similar to this recently but don\'t ask me where and I have been following Zeb\'s worries about her job.
My op was also Nov 05 but my pain is at the top of my arm and down that side of my shoulder. My underam to almost my elbow is still numb and occasionally pulls whch is when I go back to the excercises.
I also can\'t carry or use anything heavy in that arm for very long which is a bit if a bummer cos it is my right arm and I am right handed. Not doing very much ironing! (but then I always hated that!)
Hi Sue and Dippy I definately belong to this thread. I also had my op in Nov 05 and still get pain in the arm, particularly from wrist to elbow when stretching. I\'m also neurotic about getting lymphoedema as I do gardening for a living.
At least you know you\'re not alone!
pain in arm i had aux node clearance in nov 05 and yes i still get pain sometimes it goes from my armpit to my elbow on the insidebut does seem better if i do my exercises three times a day instead of two but not always so easy now i am back at work ,i cannot grip with that hand either and never lift anything heavy i think i am paranoid some times about lyphodema i am so worried about it!!!!
Pain in arm after lymph removed Hi
I had surgery last June and still suffer with pain in the arm in which I had my lymph nodes removed. I do excercises regular and do not lift anything heavy. Always worried about getting lympodema. Does anybody else have the same problem.
It gets worse when I get hot, any others ??