Breast Cancer Now Forum

I haven't had MLD myself and all I've heard is to make sure the therapist knows what they are doing as it's easy to cause more damage. I'm lucky to be a Marsden patient and see a lymphodema consultant there. I'm seeing a consultant as my case has been complicated by my other arm swelling for no obvious reason. I now have sleeves and gloves both sides! The consultant has said maintaining a normal weight is important and to try using Nordic walking poles so you pump the arms while walking and exercising in the water. Probably best advice is to try and rest arm so it's level with your shoulder not raised in the air while you are waiting for your appointment. Be very strict with yourself about not straining it through lifting more than 1kg, anything repetitive like hoovering, ironing carrying heavy bags. Lots of jobs to pass onto someone else! I use a bag that hangs on my shoulder or a back pack and try not to over load it. If you are working ask for occupational health to do a risk assessment and they should recommend reasonable adjustments such as help with lifting things, a lighter laptop or whatever is relevant to you. I found Access to Work very helpful. They send in an assessor who makes recommendations and I had an assistant for 10 hours a week paid for by the Government to help with lifting and carrying things. My biggest adjustment was coming to terms with having a CHRONIC condition that I have to manage for the rest of my life. It does get easier and for me is now a way of life so a I don't really think about it very often. ... View more

O dear you've waited for ages for a reply. I haven't been on the site for a while. Here goes .... I've had lymphodema for 6 years in my dominant hand/arm. Yes I'd ask to be referred to the specialist centre because they have more accurate measuring equipment and may get you referred for the new micro surgery which some cases are suitable for. I would ask about getting taught self massage too. I was told to build up to activities slowly so your arm gets used to it. I'm currently seeing a lymphodema consultant because of problems I've had and he has emphasised weight loss/ control. He said they don't know what the actual mechanism it but there seems to be a link between managing lymphodema and being over weight. He also suggested aqua-aerobics classes. I took his advice and have found a dramatic improvement in how much exercise my arm can tolerate. I wear a sleeve and glove in the water. I also do a Pilates class with a helpful teacher. If the exercise is weight bearing on the arms I adapt it by leaning on my forearms rather than my hands etc. Some of the management is trial and error. Good luck : ) ... View more

Hi Ladies, I was until Feb a primary teacher. I wanted to say ( you may know all this) that your phased return is arranged through occ health. They make recommendations and if your HT decides to ignore these and you become ill the school is failing in their duty of care. Also I had very useful support from Access to Work. Occ health suggested contacting them and my union was annoyed that this hadn't been implemented before. I've now been given early medical retirement as I've developed lymphodema in both arms and have a problem writing. I understand you wanting to return to prove yourself as I felt the same and managed to work for 5 years after my treatment. This was at some cost to myself as by Thursday I was exhausted and could do little except get ready for the next day at work and spent weekends recovering. I'm glad I did go back BUT am very happy to be free of work now. My income is reduced of course and I was the main wage earner but Id rather that than the poor quality of life I had while I was working. It's felt like a bereavement adjusting to not working as I was very committed to my job but know it was the best thing for me and my family. Consult your union and Macmillan as they have new publications about cancer survivors returning to work. Give a copy to your HT! ... View more

Can you ask your BC nurse? You might find a local cancer sport centre holds exercise classes. My centre runs yoga and tai chi classes as well as relaxation sessions. What about walking? It's said to be the best all round exercise as it's weight bearing and you can alternate walking fast enough to get breath Ess and speed up heart rate with slower bouts. That reminds me that Macmillan runs walking sessions for cancer patients. Around me they are twice weekly from the local hospital. Exercise can make you feel better too. Maybe you have a friend you could walk with in case you need to cut the walk short?? ... View more

I agree Skinnyminx only reply if you want to. I'm still surprised that adults ask about it. Often in shops when I'm taking change or recently at a new hairdresser. I think it's meant kindly but no one would say ooh what have you done if you had a facial scar. ... View more

There is also this company that import sleeve covers and a % goes to BC and lymphodema charities http://www.mytattoosleeves.co.uk/ I've bought a couple of designs from them. Maybe draw attention to the sleeve rather than hope it will blend in and disappear from sight?! ... View more

Useful reply Raffles! I now have lymphodema in both arms/hands so try and just use tips of fingers for personal hygiene ; ), then wash those. I buy boxes of latex gloves for cooking etc as couldn't get on with rubber gloves when chopping garlic or fish. I'm hoping I might be able to get them prescribed. My GP prescribes gloves and sleeves to the size specified by my lymphodema nurse. This is much better deal for me as I was getting 2 sets from the hospital. When I switched to the GP prescription I made an appt to see the practice nurse and explained I needed more then 2. She was sympathetic so set up repeat prescription for 4 gloves and 3 sleeves every 4 months. I can just about manage the washing with that. I sometimes need to change gloves during the day ( I was advised to do this at work if I'd been in contact with a child who'd been sick etc) so must have more than 2. Now I have Lympho in both arms and hands I get a double order. ... View more

Hi I was teaching until very recently. Adults I'd either say I've got lymphodema if I felt in mood to explain or said My arm gets swollen. Children I never explained beyond I've got a sore arm/hand. Kids always happy with that. One child did ask me in a hushed voice "what's under your glove" so I took it off to show him I had a normal hand. I don't think people always notice. A Tesco check out lady commented "they,re very realistic colour aren't they". Hmmm! If anyone has American tan coloured skin or jet black as my black friend is prescribed I'd be surprised! ... View more

Hello Katfish, I can understand you're worries as I think we cancer people have a different perspective on things after diagnosis. First of all I've been told that radiotherapy goes on effecting tissue for a long time after the treatment stops and it can have all sorts of side effects. Also your daughter is very young and our bodies do get strange aches and pains after childbirth. I'm well past having a baby but still get weird feeling in my remaining breast when I see mothers breast feeding. I'm not trying to explain away your pains though. Do you have a breast care nurse? They are often the best people to talk to. They won't want to scan you unless there is good reason as scans carry their own risks. ... View more

Singing is a great mood lifter, as long as no one can hear me! I sing when I'm walking my dogs. ... View more

Thanks CJ. I'm enjoying aquafit with sleeves and gloves on. I'm swimming a few lengths after the class and ypu're right my arms cope with a little more each week. I'm not so sure about the gym though. I'm new to gym machines and haven't found there is much I can do that doesn't put too much strain on my arms and makes me feel like the rest of my body has had a good work out. I'm thinking of giving up the gym now my fitness is better and restarting running while keeping up the swimming. I love being in the water and can't wait to get back to swimming in the sea. Too far to travel realistically at the moment. ... View more

I think it also depends on your age, type of cancer and if you're pre or post menopause. My GP mentioned that there are trials where women are taking tamoxifen and anastrozole together. ... View more

As skinny minx says a big YES you should insist on a dexa scan. Maybe speak to your GP or BC nurse. It's usual to have a scan when you start it and then at 2 yearly intervals. The benefits of taking anastrozole out weigh risk of bone thinning. Doesn't happen to everyone. ... View more

Thanks again. That's given me something to think about. I'm hoping to go on a course soon at Penny Brohn centre so I'll see if I can talk to one of the nutritionists there. ... View more

I think my dexa scans will be 2 yearly. My oncologist said that " normally" mammograms are annual until 5 years then reduced to 3 yearly although anastrozole is still prescribed. This is because the risk of BC is outweighed by increased risk from mammograms. Because I have a complicated family history it may be that my risk is increasing as I get older in which case the annual mammogram is less risky when weigh against my BC risk. All complicated and I'm glad I don't work in the BC statistics dept ; ). ... View more

Mini egg I misread your post as you swim 64 lengths after having your baby 3 weeks ago! Here was me thinking you are superwoman. Congratulations on your new baby by the way. I remember a lymphodema nurse saying that if your body is used to doing something there may be less strain on the compromised lymph system. She mentioned a potter who had lymph nodes removed but managed to go back to her potters wheel successfully. I'm going to stick with the swimming as I love being in the water (best of all the sea) and will aim to build up slowly- maybe an extra length a week. Wearing the sleeves and gloves in the water for aquafit class seemed to make a difference too. ... View more

Ladies thank you for all your info. My current bone density is average although I was told at my initial scan that my bone density was equal to an 18 year olds so it sounds as if it has reduced somewhat. I'll investigate almond milk further as one website I looked at said it had less calcium than milk. I'll aim for 6 portions a day of calcium rich foods as suggested. I have 2 dogs so I walk everyday too. Does weight bearing include using an exercise bike or rowing machine as in a gym? I'm having to be very careful about exercise as have lymphodema so limit what I do with my arms. I wonder if with the new protocols of giving anastrozole for 10 years if there will be more information given when the drug is prescribed about managing bone density with exercise and nutrition. ... View more