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Could anyone tell me your experience after lymph node removal. Dr said I could have swelling in my legs (edema) after. Does it get really bad, will I have huge legs or what? I know it doesnt matter because it has to be done, but I just wondered how bad it can get.
Thanks to all
I'm so sorry you have to have lymph nodes removed.
I had 19 lymph nodes removed in April of 2004. My doctor didn't tell me anything about edema but I noticed right after surgery I couldn't feel my left leg, I mentioned it to him and he said that sometimes removing a lymph node can cause damage to tissue surrounding the nerve. Don't miss understand me, not nerve damage, damage to the surrounding tissue which heals. You get your feeling back in your leg. It was scarey for me becaue I didn't know it in advance. Good for you for checking on it before your surgery. I'm sure there will be others that will come along to help with your question.
I had a numbness in my upper right leg, near the groin after surgery. It has gotten much better.....I never had any swelling, just the numbness. I barely notice it now.....but it different than the other leg. Chris
Hi, I am sorry that you have to face this surgery too.
Apologies for the long post but I have a lot to say on this topic! (as usual!!!)
Lymphoedema (lymphedema) is the term for the swelling which can occur in your legs after pelvic lymph node removal.
The chance of this happening is about 20% for some degree of swelling (which may not even be noticeable to the patient, especially those with larger 'fluffy' legs). About 5% have very marked swelling of the legs. For different gynaecological cancers the risk may be different if the amount of lymph tissue is removed is more or less eg full lymph node clearance or just lymph node sampling or removal of suspicious nodes only. Vaginal and vulvar cancer patients who have a groin clearance (rather than pelvic) are much more likely to get it, especially if they need radiotherapy too.
Once you have lymphoedema, it never goes away and although you can live a full life with it, that life will never be quite the same. Most people can manage the swelling using bandages, compression tights, massage and special exercise which has to be done every day. The people you see with 'elephant legs' especially in the Third World have a form of lymphodema (caused by an infection) but this is lymphodema its extreme form and most people in the First World do not get enormous scaly legs like this (although some do).
What you really need to know is that some people get it, and others don't, and it is not really related to the skill of your surgeon.
MOST IMPORTANTLY, I urge anyone who has had a lymphadenectomy (or full lymph node clearance) to educate themselves on lymphoedema, because it can happen anytime up to ten or twelve years or more after surgery. Half of the people who get it will get it within one year of surgery. So it doesn't happen straight away in most people. Even if you do not have it right after surgery it does not mean that you are safe from having it. Please educate yourself about lymphoedema, see
There ARE THINGS that women who have had a lymph node clearance can do to reduce the chance of or prevent lymphoedema. In my experience, although our doctors warn us of the risk of it, they do not as a whole educate us well about how to help prevent or manage it.
If you notice some swelling in your lower body, please seek help for it straight away so as to start treatment before the swelling becomes irreversible.
I DO HAVE LYMPHOEDEMA since my radical hysterectomy eight weeks ago. It currently affects my pubic area, groin and upper thigh. My lymphoedema specialist tells me that this is the first sign of getting it down the leg. This upsets me, as I am a young(-ish) 31 year old woman who still enjoys a short skirt or dress, and my job requires me to be on my feet all day. The pubic swelling in itself is noticeable under pants (and before surgery I still had the physique to wear very tight pants). But at least I knew about the lymphoedema and am seeking treatment early to try and manage it before too much damage was done.
Incidentally, I woke up with numbness above and below the horizontal abdominal wound, as well as down into both groins and thighs (I could have done a Brazilian wax afterwards with no pain!). The legs part is getting better but we will most likely all be numb for an inch above the wound forever.
******another thing - very important***** in case there are some women who read this post and who have had a lymph node clearance but do not read the link above - all people who have had their lymph nodes cleared out for gynae cancer are advised NOT to damage the skin on their legs by waxing, shaving (except with an electric shaver), insect bites, garden scratches, pet scratches etc. If you get a minor injury to your legs you should attend to it straight away - get it clean, and have antibiotics at the earliest sign of any infection. It is known that even minor trauma in women like us can precipitate lymphoedema even years on. Speak with your doctor, who probably wont be as paranoid about it as you should be, and read up about it so you can take some precautions to reduce your risk.
All this lymphoedema risk stuff goes double for those with a full pelvic lymph node clearance PLUS radiotherapy as the two combined exponentially increases your risk of lymphoedema.
(sorry for all the shouts - this is a big topic very close to my heart!)
Good luck to all, and I hope no-one else gets lymphoedema!
Thank all of you for your kind words and great information. Looks like I have some research to do. Good luck to those of you having surgery. I know Im ready to get it over with. I hate this waiting around.
First -- at 31 you can say young -- don't need to add the "ish". I play in an over 30 soccer league and believe me the 31 year olds are young (and they get younger every year
Thank you for your post. So, so sorry to hear that you are having these problems.
I know the release papers that I signed when I had my hysterectomy done said that I would have a lymphdectomy (sp?) and from the way it was described to me I thinkall the ones near the cervix (can't remember what they are called) were removed but the para-aortic ones weren't because all looked good. While my doc warned me about possible bladder and bowel issues related to the surgery (so far so good there) I don't remember her mentioning lymphedema. I know nothing was said about taking special care with cuts and scrapes -- I never make it through the soccer season without my knees looking like they belong to a 5 year old at least once. I know I read references to it in my pre-surgery research but didn't pay much attention. Guess I'll need to do so now. (And check with my doc and find out exactly what she removed!)
One year and one day ago I had my surgery for lymph node removal, and I am relieved to report that I have had no lymphedema. Pre surgery I had intended to ask the doctor what the likelihood of my having lymphedema would be, but he guaranteed me that I wouldn't before I even got to ask the question. (Don't know why he was so confident, but it was good enough for me. Maybe he didn't want to give me anything else to worry about, since at the time I was an emotional wreck...)I know he took out a considerable number of nodes; I don't know if there's some magic number where lymphedema becomes more likely.
Anyway, I wish you luck and a good outcome from your surgery.
I am so glad that you don't have lymphoedema - and hopefully you will never get it, it doesn't happen to everyone.
It is not related to the number of lymph nodes removed per se, but certainly more lymph tissue removed results in increased risk. So there is no magic threshold number of nodes removed which causes it.
It has been my experience after speaking with many doctors about it that surgeons (gyn-oncs) think that we should be happy that we have been treated well, and that lymphoedema is a risk, but so what? the cancer was treated. This is no disrespect to them - I love my gyn-onc and can see this side of the argument. Perhaps this is why they do not really talk much about it. ALso, for many patients, the lymphoedema occurs many years after the initial surgery, so by this time, the contact with the gyn-onc is less, or if you have 'cure' after five years or so, then they are less interested in the lymphoedema.
I am lucky in that my lymphoedema is pretty mild at the moment, although I wish I didn't have it. But I am so glad that I knew about it early so that I can get treatment. My wonderful gyn-onc WAS one of the doctors who talked to me about lymphoedema before it happened. I read a lot about it before the surgery. And Ihave been taking precautions since the surgery (avoiding injury), but I still got it.
INcidentally, I specifically asked my doctor whilst I was in the hospital about whether I could continue to wax my legs and pubic hair, and he said 'of course you can', and his nurse laughed at me (and not in a nice way!) for even asking this seemingly stupid question. I asked because every thing I read about the risk of lymphoedema told me that I should not wax or shave with a blade again. I have since spoken with my lymphoedema doctor (a specialist medical doctor) who reaffirmed that they recommend that I don't wax or shave or injure my legs - so the question was not so stupid after all!
The lymphoedema specialist did say that the evidence about leg injury causing the lymphoedema is not very definite - that is , those people who get lymphoedema after injuring their legs (after pelvic lymph node removal) may have already had lymphoedema after the surgery but at a very very minor level that the patient did not notice and the injury started the visible swelling off. I am not sure what this means for those women like you who do not have leg swelling now - that is, does not having swelling now mean that there is absolutely no lymphoedema and therefore you are at low risk of getting swelling, or does that mean that you have (non-noticeable) mild lymphoedema and injury will set off a spiral of swelling?
I don't know. All I do know is that having lymphoedema now, if I was in a position where I may have been able to prevent it happening in the first place by careful skin care and leg care, I would be really really really angry that no-one spoke to me about it. I don't want to see you lovely ladies in five years time with a cancer cure, but bandaged legs because no-one gave YOU the opportunity to decide for yourself what risks with your legs you were willing to take.
There are national lymphodema organisations in the US too (look up the US spelling LYMPHEDEMA in google) which should be able to give you a bit more info and perhaps can provide a contact for you. IF you are worried, perhaps you can pop in to see one of the specialists or physiotherapists (physical therapist) to have an assessment of your legs and a risk assessment done.
Lymphoedema is a huge problem for many people. It is a true, well recognised medical illness which causes a lot of misery for many, but in medicine, there has been a problem with who should manage it - should it be the gyn-oncs? It is not a surgical problem so they are not interested in its management. The rad oncs? Radiation cannot treat it so rad oncs don't give long term follow-up and treatment for it. The mainstay of treatment is physiotherapy and risk/hazard reduction. There are no real medical specialties which know that much about physiotherapy (there are physiotherapists for that!) so the medical fraternity is at a bit of a loss as to what to do. In Australia, the medical specialists who tend to look after lymphoedema with the physiotherapists are the rehabilitation specialists (and one or two surgeons in the country who have an interest). The fact that rehab specialists look after it gives a clue to the fact that this is a disease which significantly impacts on your life and function - the rehab specialists try to help you find ways to move around and work and cope with the swelling.
I really don't mean to freak you all out, but well-informed is well armed. If you have the knowledge about lymphoedema then maybe you have enough info to take some precautions against it. Even if you do not change your lifestyle, then at least if you get it you will know that the decision to take the increased risk was yours alone. We have had enough to be angry and grieve about with our cancer, let alone having something like this too. Not all lymphoedema can be prevented - I got mine within two weeks of surgery and I was vigilant about looking after my legs. But if the risk is reduced for any other woman out there by a little bit of knowledge then I can sleep easier at night!
Soccerplayer - I know that you can't give up your sport. PErhaps if you DO injure your legs you just need to make sure that they really get cleaned out. The risk is not in the injury per se, but in the infection that can occur afterwards, so if you can address this by using an antiseptic, then perhaps you will be OK.
Good luck, hope you never hear about it again!
Happy hysterversary stella blue - congratulations for being a cancer survivor!! xxx