Has anyone got information regarding lymphedema ?
I am not sure how many nodes I had removed but have been warned to be careful not to get an infection and just wondered what information about risks and livelihood of developing it anyone could share.
Thanks x
Hi there 
I was concerned about the same thing. My nurse gave me a very helpful booklet to read. Very important that you never ever allow anyone ro take bloods or blood pressure from the side you had lymph nodes removed, make sure you look after your skin and Tey never to cut yourself on that side. Don't wear jewellery that is too tight (I actually had my wedding, Engagement and eternity rings enlarged - they had become very tight on me). If you are going outside in the sun wear factor 50+ sun protection cream. It is basically ensuring that you are careful. I hope all goes well for you. xx
I had most of my lymph nodes removed and developed lymphoedema about 5 months after my op and between having chemo and radiotherapy. As soon as I noticed it I saw my lymphoedema nurse. It is well controlled and I wear a compression sleeve to help keep the swelling down. I also take low dose antibiotics to avoid cellulitis which I had 3/4 times to begin with. Anyway hopefully you will not develop it but do take care as in Lainey's reply. Also be careful when gardening - try to wear gloves and use insect repellent outdoors so you don't get bitten. Hopefully you will avoid getting lymphoedema xx
The only other thing I can add is to keep doing your exercises, swimming is a good form of exercise as is rowing/paddle boating if there is one near you. I suffer from it and yes it can be a bit of a pain but if you do develop it it's not the end of the world and my take on it is that at least I'm still here to have a moan!! 😀
That's helpful, thank you x
I can't add much to Lainey's reply except to say if you do get an infection in that arm/hand ask for antibiotics straight away. Try not to worry too much just be vigilant. All the best.
Hi, I had all my lymph nodes removed last year, I did my gentle excersice and now a year on, my arm feels perfect, I have to say it did really hurt for a good few months, but it gets better. But please, my advise is to do the things your doctor sugguests.
I had ten nodes removed but did not develop lymphoedema till 3 years after when I was scratched by a patient which infected me and I developed cellulitis. I have to wear compression sleeves all the time and have had two flare ups where the arm has become red and swollen requiring IV antibiotics ! Somit can develop anytime for any reason ! Good luck hope you don't get it
Hi yes I have just had my first infection after 5 years , I had 22 lymph nodes removed , it is important to get anti biotics Asap made me think I had the flu felt really ill , not sure how I got it as didn't notice any cuts , the nurse told me if doctors surgery is closed go to A&E and they will treat you intravenously , hope that helps
Hi there, I too am not sure about how it's triggered, I'm back at the gym, but was told in the arm the Lyn nodes were taken not to lift, or pull, over a couple of pound, I am aware of it, but trainers at the gym don't know anything, as I asked of what I could or couldn't do, same in the garden or shopping! May be someone here can explain more, xxxx
Hi, I'm in a specific training program at the gym, the guy who runs the program is employed through Macmillan and he knows all about what I can and can't do, I've had single mastectomy and axillary clearance. As regards to the arm where you've had nodes taken, you can do lifting and pulling but you have to start small, so a weight that feels easy and comfortable to do. Gradually you build up the weight and strengthening the arm is the best thing to do, a study has been conducted where they took 2 groups of women, one group did no exercise and the other did, 22% of the women in the no exercise group developed lymphedema as opposed to 7% in the exercise group. Even if you just do gentle stretched its better than nothing. The lymphatic system relies on movement to drain fluid unlike your heart which pumps our blood round regardless of whether you move or not.
Ow great, I try to go gym at least 1 a week, but get worried of my limits, good to know I can build a little more, I also do body balance, which is mostly stretches and balance, I'm in romford area, will all McMillan have someone I can talk to about exercise? X
Not sure on what areas provide what services, its my local leisure centre that runs this affected by cancer program, my friend is a receptionist there so she told me about it, its a 12 week program and after telling the instructor what I wanted to achieve, mainly upper body strength and just getting my general fitness back after months of treatment, he devised a schedule tailored to me.
I had 8 lymph nodes removed on the 18th December and my first session at the gym was end of January. I lift 15kg at min, 3 reps of 14 lifts each time and I use the cross trainer so my arms are going back and forth with that too. X
Brilliant, I'm going to look into that! Sounds like your really doing well and so quick, can I ask how old you are? X
I'm 35 and never had anything wrong before....I just had to go and get the mother of all illnesses! The big C, so I thought, right I'm not having this and doing this gives me focus and I always feel positive and ready for anything when I've been. Yes, I would have a look on the internet for anything like that in your area xx
I would,check with Macmillan for a MoveMore group or your local Clan centre...
Thanks max x
Well there has been a great response to my question, how many lymph nodes did you have taken out?
From what I have read in the booklet the Hospital gave me you have to be just as careful even if you have only had one or two removed.
Also they suggest that when they are removed there can be damage to the surrounding area that can also cause problems in the future.
Nice to hear from you, when did you have your treatment and what did you have? (If you don't mind sharing this with me 😊)
You should find all my posts explaining most of my journey.
I am about to go and have a cuppa with a woman from the next village, she had breast cancer five years ago and heard about me and messaged me on Facebook! I find all sorts of contact helps so much xxx
I'd love that, I'm feeling a bit lost since getting on the mend, iv looked Into groups but they seem to be once a month of an evening, need some daytime company!
I was diagnosed late 2012, had invasive stage 3 hormone cancer, left breast, with in 4 weeks was having a mesctomy with a diep reconstruction, they said I didn't need chemo, I was so relieved as I lost my sister on chemo the year before! Unfortunately for me after a ten and a half hour operation, 16 weeks recovery, after a check up I needed 6 months chemo (fec) and 5 weeks radio,finished treatment aug 2013, in 2014 Dec, had a hysterectomy mainly for precautions,
I've had some ups and downs, but really trying to stay posative, I've got more time now and would love to meet chat and befriend people who'd experienced same journey, I'll have a peak at your blog x
Hi, yes you should be extra careful with that arm/hand. Try to avoid heavy lifting. If you get a cut or an abrasion disenfect it immediately. If you notice any swelling whatsoever contact the hospital. You could ask yo be referred to the lymphoedema nurse anyway. They'll scan your arm & keep an eye on you if need be. They will also give you a pressure sleeve which you should wear if flying. Take care x
Do you have to wear a preasure sleeve even if you haven't actually developed lymphedema? for flying that is.
Thanks x
If you haven't had your lymph nodes removed you should be fine. To be honest I went on a 5 hour flight recently & didn't wear mine & was ok. I would think it if you haven't developed lymphoedema you will be fine.
Hi I had my sentinel lymph node removed and 5 others and thought I was clear from lympoedema but I was wrong I found out I had 24% more fluid in the cancer side and have been having therapy to reduce fluid and sleeves to help also
I think u should speak to any of the therapy cancer clinics like cancerkin Royal free or cherry lodge for advise hope this helps best Fenelle
It's one of those things you can't predict if you're unlucky you get it!! You can help yourself though do your exercises keep up with the massage and body brushing to keep the lymph draining don't let them take bloods or bloodpressure or give injections in affected arm .be careful in the garden etc.Hope you get on okay ✊xx
Hi MJAP, I can't say anything about arm Lymphodema, but 18/12 ago I developed dry flaky skin in my right breast, couple of visits to GP where cream cleared it up but it kept returning ended up with being sent for a biopsy, as soon as my breast consultant saw the breast he just said I have Lymphodema, the biopsy had shown I've got exczema, nothing was put about the Lymphodema but I spoke to my breast care nurse who referred my to the Lymphodema clinic where it was confirmed that my Lymphodema is in both breasts, so I would advise any cancer survivor with dry flaky skin to ask GP if it could be Lymphodema (hopefully it won't be) and be referred to their local clinic, good luck
Hi. I had nodes removed and in the six months after did have some swelling. I have not had problems since. I wear a pressure sleeve when I fly and do not have injections, blood tests, or manicures on that side - anything that can introduce infection. If you get a cut on your hand or arm be sure to disinfect - and be really careful with razors if you shave your underarm Also don't life anything too heavy with that arm. Be well
The best preventative action is to keep your arm well moisturised and clean and protect any injury sites. Wear gloves for gardening or any other activity where your hands get dirty or scratched. Do any arm exercises you have been shown by breast care nurse. Try swimming, yoga or pilates.
I have lymphoedema after mastectomy and 4 lymph node removal but you may be able to avoid it!
Oh I was also told only to use an electric razor on underarms and also to use high factor suncream on affected arm!
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