I’m new here, but you all seem like a nice bunch and I’ve been lolling at some of the funny posts on here :o)
Anyhoo, I had a WLE and full nodal clearance on the 7th Nov. So getting 3x FEC, 3x Tax, followed by radiation.
However, I am an outdoor instructor - always have been and I’ve never done anything else nor have I wanted to! I’m terrified of lymphodema as it will stop me doing my job and also all my hobbies and past times, which include rock climbing, whitewater canoe and kayaking, mountaineering expeditions and mountain biking.
So here’s my query
If you get a cut and clean it out straight away and keep it sterile can that stop the lymph fluid or will it definitely happen?
Firstly, welcome to the forums, I wanted to let you know about a booklet Breast Cancer Care have published about lymphoedema which you may find helpful to read whilst you await replies from your fellow users. You can read or download it from this link:
If you need a chat to someone for support, advice and further information please feel free to call our helpline, it opens 9am-5pm Mon-Fri and Sat 9am-2pm on 0808 800 6000.
I lymphoedema and just wanted to say that I don’t know what set mine off. It could have been when I stuck a crafting tool into my thumb, or when I used a new cheese slice that my husband said he wouldn’t use because he would slice off the top of his finger, well I didn’t do quite that but I took off the corner.
We had a talk at our local support group by a lymphoedema nurse and she said some people get lymphoedema and some don’t, it doesn’t follow that you do something and it sets it off. We can just do senible things to help prevent it. There was one lady at the meeting who did weight training and she wasn’t going to stop. I think you might be able to get a compression garment which you could use when carrying out your activities.
I was worried about using a computer and that is a major part of my job, the lymphoedema nurse said you need to try to do your normal activities. Your Breast Care Nurse may be able to provide you with guidance. I have looked at this website which is to do with lympheodema
I’m not a very active person and was less active when on the second chemo, so I wonder if that was a factor, but I couldn’t have upped my activity when I was on the second chemo.
I don’t know if keeping the wound sterile will stop the lymph fluid, as I understand it (and I’m by no means an expert go lympheodema dx in August) infections cause more of the fluid, so it would be imperitive that the wound is kept sterile.
It’s early days yet, I rang the lympoedema help line when I thought I might have a problem doing my job, they reasured me. I have also talked the the help line on Breastcancer Care. I know my life style and job are not in any way active (I am going to start being more active - I have been to 1 yoga class but it’s a start) but I think I read on this site about someone going sking not long after their treatment. One lady I met whilst starting my rads, she had finished her’s was going to India 2 weeks later. I will admit I have a bicycle, (I usually ride it when we are on holiday) and I want to ride it again, but I am frightened of falling off. My OH and I joke about it, saying if I’m going to fall off it’s got to be to the right (had the tumour in the left breast). The reason I am frightened is that I have a tendendancy to fall off, but when the weather is better I am going to have a go, even if the OH and kids run after me with a cushion. I think it might get rid of the extra weight that I don’t need. I have found I have a tendancy to find reasons not to do something, and I am trying to change myself into someone who finds ways of doing things.
Could you get a job training others to do your instructor job? I think you have skills that you could use in other jobs if you need to. Am I right in thinking that you would need to have Health and Safety qualifications and being an instructor is a skill in itself. Perhaps you could train people the Health and Safety skills they would need to be an instructor?
I used to be a lymphoedema nurse specialist, so hope that these comments might be helpful. Do get all the information you can, and it would really help you to be referred to a lymphoedema clinic for preventative advice. The main three parts of treatment (and possibly prevention) are excellent skin care, exercise and simple lymph drainage massage which you do for yourself, in addition some people need to wear a compression sleeve. If you do injure your arm in anyway you need to be really careful to watch for any redness etc and to quickly get antibiotics at the slightest sign of infection. You may well find that you CAN continue in your present occupation, the most important thing is to very gradually increase the amount of exercise you are doing. It is different for everyone and you have to see how you react. Exercise (moving the muscles) is what moves the lymph along to the top of your arm, but at the same time, the more you exercise the more lymph you produce so you have to find a fine balance. It would probably be very helpful for you to have a compression sleeve from your lymphoedema clinic to wear when you are exercising, this helps prevent swelling and also helps the lymph flow. What happens is that because the lymph nodes at the top of your arm have been removed the lymph has to find new ways around that area - a little like when you dam a river, but little tributaries will form around it. This is just the same. Do get expert advice, but try not to worry too much, with the right help lymphoedema is rarely as much of a problem as it was in years gone by when surgery tended to be a lot more drastic and we did not have the information about preventing and treating lymphoedema that we do now. Good luck! Sarah. ps.for the Moderator - Do you think it might be helpful if we could have a discussion topic specifically for lymphoedema? I have seen several postings about it and I know it is a concern for people after surgery, perhaps all the information/chats could be in one place? Thanks for these wonderful forums. Sarah
I had ANC a year ago and lead a very active life, since finishing treatment I have done the London to Brighton bike ride, the moonwalk, had ski lessons and go running. I was told to never wear a compression sleeve unless you have lympoedema and that the more active you are the less likely it is you will get it. So far I have had no problems, I had a bad cut on my hand last week and got anti biotics as a precaution but I have had smaller scratches and bruises that have been fine. I apply aqueous cream every day and do the exercises I was given after surgery when my arm aches occasionally but otherwise lead a normal life. Best wishes
Lisa x
I, too, exercise, I run and swim. I have also been skiing at the Snowdome in preparation for the Alps in February. I do my arm exercises every day and use aqueous cream on my arm every morning after my shower. I always use antiseptic as soon as possible after the smallest cut, and cover it with a plaster. I get my kids to accompany me to the green grocers down the road to carry heavy bags.
Last weekend my hand started swelling up - to say I was upset is an understatement! I have been referred to the lymphoedema clinic. However, I went swimming as usual on Monday night (although I cut down on the front crawl and did half my lengths breast stroke - alternating strokes to avoid too much repetitive movements). I was worried that I may make it worse. However I got up Tuesday morning to a much improved hand. It is now barely swollen - no-one else would notice. I can only assume it was the swimming.
Seabird
Thanks for the info - it’s better than I’ve got from my BC nurses
There was a trial a while back that indicated that if you very gradually increase what you do then women can get back up to their current weight capacity while perhaps decreasing their risk of lymphoedema (I think this research was done in Pittsburgh, if you want to search for it further). There have been studies of dragon boat rowers that indicate that they actually develop less lymphoedema (worth googling). One of the big risk factors for lymphoedema mentioned in the recent studies is that putting on extra weight after diagnosis or being heavy is a big risk factor. I know a woman who hiked Peru on a fundraising walk and she said that she was told that carrying a backpack was ok, but she would need to use a chest strap and build up to carrying things over a period of months. For most of the things you have mentioned I would try a little at first and build up. I am not sure about the rock climbing, though, since the risk of scratches would be high.
I type, sometimes more than I should, and find that I am ok as long as I lift my arm every once in a while.
I have had a fair few cuts and no problems, but it is important to get them treated as soon as possible.
Hi Lisa - Must admit I never came across a situation when anyone was actively told NOT to wear a compression sleeve. What they do is give some outside resistance to the arm muscle movements and thus help the lymph to move back up the arm even more effectively. Just like wearing “flight socks” on an airplane which helps prevent swelling and keeps circulation moving on a flight. That was one occasion when people were definitely advised to wear an arm sleeve if they had had lymph node clearance and were going on a long haul flight as there is some evidence that that can be a trigger for lymphoedema, so a sleeve was a good preventative measure. Dragon boat racing sounds fun - there is a team here in Canberra made up completely of ladies who have had breast cancer, saw them all at the lake today and they looked radiant, certainly not young, and about a third of them wearing compression sleeves. Sarah.