Well the last few days I have been trying to work out whether or not the slight amount of lymph fluid that persists since my mastectomy and auxillary dissection last year has been increasing. It has been manageable with exercise and self-massage but has for some reason decided to build up under my arm. Not the best timing with Easter and Anzac Day weekends meaning it is difficult to get any assistance with this! Nevertheless I have been able to organize an appointment with a Lympedema Specialist doctor for early May and speak with the nurse who has given me advice on what to do until then. I have to restrict my swimming (too many laps is not good for this) but have some aqua aerobic exercises to do. Thank goodness the weather has put on a good show for Easter so I can get in the pool and not freeze. I am also to wear my sleeve when I do my walk and Pilates to stop the fluid trickling into my arm. Once again I am so grateful to be able to get excellent medical assistance when I need it. I have been very fortunate to find that help is usually only a phone call away. After speaking with the doctor's receptionist and nurse I feel much less anxious. I was really hoping to avoid the Lympedema issue but once again despite being in a low risk group (only 8 nodes removed) and doing all that was recommended to avoid the problem, it seems my body just won't give me a break :( Well I have some things to do to help and an appointment to get assessed so now I will just enjoy the weather and some family time over Easter. Hope everyone has some good times over Easter, dark chocolate is good for us remember! Take care. Deanne xxx

Sorry to hear this Deanne.Isnt it frustrating when you do everything so right,but there are still other things to contend with.Like you said,just do what the nurse suggested,and try not to worry too much.Happy Easter to you and your family Deanne.xoxCheers Robyn

Hi Deanne, So sorry to hear your news. Do hope you will be able to relax and enjoy Easter and the good weather. May is only 2 weeks away so hopefully you will manage till then without too much swelling. You are doing everything right as you always do. Thinking of you, take care. Michelle xx

I hear you re the lymphedema. I got lymphedema after my second diagnosis. I was so angry!! I found it harder to deal with than my cancers!! Luckily if that is what you have you have found it early. I am now almost 3 years since my lymphedema diagnosis but it is much improved. I don't always have to wear my sleeve, although I still wear it often. I believe it is the time I put in to maintain ace that has helped. Massage is brilliant. I don't know if you have been told this, and forgive me if you have. Before you massage take 10 really big breaths in and out. Right down into your tummy. Then gently massage all your lymph glands...groin, underarm of unaffected arm, above and below collar bone, and neck. Once you do that start by massaging your stomach in gentle strokes down like stroking an angry cat. So not to hard. Then massage across under your chest, and then above your chest. The aim being to take fluid towards lymph glands and away from your affected arm. Then hold your arm up and massage starting at the shoulder massaging away from your hand. Gently work your way down your arm always massaging away from the hand. When you finish, take another 5 deep breaths and re massage all the lymph glands. This is how my oncology occupational therapist who looked after my lymphedema taught me. She is GOD to me. She got my sausage fingers and puffy hand under control. Once again I apologize if I have just told you what you already know. Great you are already massaging. It's amazing the difference it makes. I still do it every single day and believe it has really helped my lymphedema. So great you can get into the lymphedema Dr. I live in Cairns so no such thing up here. But brilliant oncology occupational therapists. I really hope you have a great family Easter and yes dark chocolate is good for us ;) Paula x

Hi Deanne, I noticed a similar thing to you ( the day I finished chemo :( ) with a build up of fluid in my arm ! I had 19 nodes removed but it seemed to come from nowhere. I saw a lymphodema specialist and was advised to do the massage as discussed above as well as wear a compression sleeve only removing at night until a month after my radiotherapy is completed as it can cause further inflation . I have 3 radiotherapy sessions to go ( yay!) and the swelling in my arm has reduced nothing . I feel it will be something I need to be aware of but am hopeful that if I am vigilant with massage it will not escalate any further. I see my specialist a month post radio where she will decide about the sleeve however I feel even if I get the all clear not to wear it I will still pop it on when I'm at home etc . Occasionally at night my arm does throb ( usually when I've forgotten to put the sleeve on during the day ) I pop it on and feel immediate relief . Hope this helps Happy Easter Sophie xx

Next challenge | BCNA Online Network

19 Replies

Christine_Marie
Member
12 years ago
Lovely Deanne..I really think the small things in life are the best & the Most beautiful...enjoy your day:) Christine:) xox
mum2jj
Member
12 years ago
I so remember that "muffin top" over the top of the sleeve! I hated it. Tried to wear sleeves because of it...not always practice in the tropics. I have been fortunate (if you can call having breast cancer twice and getting lymphedema fortunate) that mine was mainly in the lower part of my arm/ hand. Whilst this is one of the hardest areas to manage it meant that at times I only had to wear a short sleeve, but with a glove. I started on long one day and short the next. Now almost always only wear the short one. However not nearly as much. Like today I took my sleeve off at 7 pm last night and it's nearly lunch time and I still haven't put it on. Keep up your massage. It really is important and gets you where you want to be so much faster. Just the other day someone asked what was wrong with my hand. I wondered what he was talking about. Completely forgot about my sleeve. Hang in there. I think lymphedema is one of the least talked about topic on this site so hopefully you bringing it up will help others. There is a lymphedema group that I joined, but it doesn't have many members. Happy Easter. Paula x
Deanne
Member
12 years ago
That is reassuring to hear. This network is the best. Being able to talk with someone who has been in a similar position just helps so much. You have settled my mind a little, especially about it not taking up too much of your thinking on a daily basis. It was the thought that I would have to be dealing with it constantly and the impact it might have on everyday life that worried me. Even yesterday I could not wear a sleeveless shirt because it looks too weird with the compression sleeve and I had to go back to wearing my post surgery bra because it gives better coverage over the fluid area under my arm. I felt like I was moving backwards but you have helped me to see that this is not necessarily going to be for long. Thank-you so much, Paula. Xxx
Deanne
Member
12 years ago
Sorry to hear all that. Yes the one day at a time is the way to go. I am also trying to notice all the good things and not let my latest health issues spoil everything! This morning my hubby and I had a cup of tea and watched the most amazing sunrise together. My daughters are both home and we are going out to the markets for breakfast etc. I am lucky to be able to do all this. Hope the pathology results are good and that you are feeling better soon. I'll look out for your post next week. Rest up. Deanne xxx
mum2jj
Member
12 years ago
Glad to be able to help. I was gutted when I first was diagnosed with lymphedema. For exactly the reasons you stated. However I have since learned it is not all bad. I know I will always massage, but have managed to just make that part of my life, don't even think about it too much any more. I also am used to my garment, which I wear less and less. I was lucky enough to go to a lymphedema conference a couple of years ago. It was fantastic. We had a session with a prof from UK with a brilliant question and answer session. It was so informative. I asked lots of questions as mine was in my hand and quite bad at the time. A lovely lady came and spoke to me later and reassured me that mine would get much better and to keep doing what I do. She said hers had been really bad and was now well under control. My breast surgeon has told me to stop wearing my garment as mine is so good at the moment. However I will wait and see my occupational therapist for measures and see what she says. I get remeasured every 6 months. I think the lymphedema specialists are really the ones to listen too as I have found even my GP and breast surgeon not as knowledgeable in this area. I think the key is finding it early and being proactive in your treatment. Sounds like you are doing all the right things. Will be really interested in what the lymphedema specialist has to say. Good luck. Paula x
Christine_Marie
Member
12 years ago
Your welcome Deanne & thank you.....it does make you feel better when you have a good clinic.... I also think radiation damages more than what we think.. When putting cream on my scar I feel this pocket, like my boob has shrunk with rads, which also scares me, I would hate for fluid to build up in that pocket... Anyway I had my hysterectomy & repair done last week, I was in hospital for 5 days& I came out with catheter in because my bladder doesn't want work :( so hopefully will come out on Tuesday which was the plan!! I was only out of hospital for 2 days then back in with infection in my bladder & stitches... so not feeling to good at the moment they changed my catheter & put me on antibiotics..just waiting for pathology results fingers crossed, keep telling myself things will get better & 1 day at a time:):) will put a post up next week when things calm down... Take care... Christine:) xox
Deanne
Member
12 years ago
Hope the Tamoxifen goes well for you. I have been on it since November last year and so far so good. Enjoy your week's rest. It is both exciting and daunting to finish treatment but I find keeping in touch with other ladies on here helps me feel less alone. I have also read a couple of terrific posts about adjusting to life after treatment. It helps to know that we all face the same challenges and to hear how others deal with it. Look after yourself. Xxx
Deanne
Member
12 years ago
Thanks for your good wishes Christine and Happy Easter to you too. I am hoping that I will be able to manage to keep the fluid from getting worse until I see the specialist. I am hopeful that he will be able to investigate why the fluid seems to get trapped under my arm and in a certain area of my chest. I imagine the scaring from the surgery and also from radiation are to blame. Whether anything can be done to improve this I'm not sure. I have heard good things about the clinic where I am going so fingers crossed they can help. Hope everything is going well for you. Take care. Deanne xxx
Christine_Marie
Member
12 years ago
First of all happy Easter :) Sorry to hear you are having trouble with fluid build up again, it's really not fair on you when you have been doing all the right things & you always sound so fit & heathy in all your posts, I don't blame you for being upset & scared....So I'm keeping my fingers crossed for you that it just goes away:) & Deanne enjoy your aqua aerobics & your Easter weekend with family...... Take care:). Christine :) xox
Deanne
Member
12 years ago
Yes it is so frustrating that no matter what I do I can not ever be totally free of the lymphedema. Maybe I had gotten a little slack with the massage but I thought the exercise was helping too. They are doing trials on how helpful exercise can be with controlling lymphedema in the chest area which is where I have had the issue until now. I hope the doctor I am to see will be more thorough in what I need to do for it. Happy Easter. Deanne xxx