Breast Cancer Now Forum

I'm another who felt Val's care and kindness through this website. Newly diagnosed three years ago, she gave me hope that there might be tomorrows. Now, I realise that her greatest gift was not that she was able to hang in there for so many years, but that she showed me the importance of living each day as it comes as fully as possible. I hope her family and friends know how important she has been to so very many women on this site and beyond, and how much she will be missed. ... View more

Captured my feelings exactly as I steam up to the 2-year mark. What a roller coaster. Thanks for posting it! Q ... View more

Rozita, Call the lymphoedema nurse and try to get an appointment to see her soon. If it is worse, she should know. Meanwhile try the massage twice a day. Don't forget exercises, check out the ones on the Haven website: if the link doesn't work google haven lymphoedema exercises and this lymphoedema fact sheet comes up) Drink LOTS of water. Avoid alcohol and salt--that worsens it in some people. There are other things you can do besides massage--wrapping, kinsio taping, and there are a few other things. But in my experience you have to PUSH PUSH PUSH to get any attention. Finally the heat is supposed to make it worse, and mine has certainly been, I have a friend who keeps a spray bottle of water in the fridge and sprays her arm from time to time during the day (with sleeve on). When it cools down, your arm may too. All the best, Q. ... View more

I developed lymphoedema before Rads, and I don't think rads made it any worse (although I know it can trigger it in some). I do know that cording can recur after time, so it is possible that it IS cording. But cording is also linked to lymphoedema. Give the antibiotics a chance to work. Drink LOTS and LOTS of water--it helps to keep the lymph moving and keep your arm elevated as much as possible. If you are not satisfied when the antibiotics are gone--find someone to pester.Elinda is right, the amount of knowledge among most medical people about lymphoedema is abysmal. Good luck, and lets hope it's something completely different. ... View more

Elinda your advice about the breathing was EXCELLENT. I feel like I know what I'm doing now. Thank you, thank you. My bcn told me NOT to swing my arms, but to keep my hand in my pocket. Now she may not know what she's talking about--she is not always a fount of all knowlege, but just something to ask your own bcn/physio. Yesterday's heat here in Manchester was not too good for me--my arm was fat as a pig, but today it seems to be better. And it's one thing to wear the arm sleeve in the winter--yesterday I had it on with short sleeves and felt VERY self-conscious. I wish I had a white one, although I can imagine what the mitten would look like : ( Floaty cardys sound pretty! ... View more

In a fit of panic when I was first diagnosed I bought three, yes that's three, wigs on ebay. Each one was worse than the last. I was getting in a tiz. Then I took my voucher and went to the wig shop and got what I think is a really, really cute wig for free. The wig lady was fabulous, and to my surprise I had a lot fun. I was happy with mine, and didn't have any problems. I was glad I got it beforehand, 'cause, like some of the others said, it made me feel more in control. My sister and I laughed that we were turning breast cancer into a shopping opportunity, but I did buy scarves, wigs and hats and never regretted it (except the sight-unseen ebay ones!). They did help lighten the fear and make me feel better about myself. Because I worked during my chemo when I could, and didn't want to sport the 'cancer look' I wore it alot, although at home I never wore 'Audrey', instead a buff was my headgear of choice. ... View more

Elinda, have you worn a compression sleeve before? (I know bandaging is much more intrusive) Well often when I first wore it my sleeve would drive me CRAZY at that joint, but I have grown used to it now, and it doesn't bother me much. I wonder if this is just something that will get easier as you go on. I think the indentations may be normal--but I also think you should telephone the nurse/physio and get some feedback on your technique. But, I have never bandaged, so take all my advice with a BIG grain of salt. Hope it gets easier--and that you get some good answers. Good luck, and let us know how you get on. Q. ... View more

Hi Janice, I agree with Morwenna. One of the women I know with lymphoedema draws around her bite with a marker, so she can see if the red is getting bigger. (I do NOT do that!! but I bear it in mind--I often make someone else look at it, so in case I think it's getting worse I can get a second opinion--but I'm a hypocondriac) In addition to Morwenna's symptoms of cellulitis, I would add heat--my arm became red and hot. The big thing about a bite, don't scratch it!!!! You do not want to break the skin. I've had a couple of big mozzi bites and come out unscathed--it was my manky fingernails at the end of taxotere chemo that triggered my lymphoedema : ( Also--for goodness sake, go to gp and explain about your lymphoedema, he or she should prescribe you two weeks worth of antibiotics, so that if you develop an infection while on holiday, you can (RIGHT AWAY) start taking the tablets and nip it in the bud without dramatic trips to A & E. Morwenna--the only thing i'd add to what you have said, is that if you think you have an infection you are not supposed to do any massage or sld because of the risk of driving the infection around your body via your lymph system. For the same reason if you think you have cellulitis, don't wear your arm sleeve until it is clear the antibiotics are working. q. ... View more

Not me, although it intrigues me. I've heard mixed reviews elsewhere, including some women being intolerant of the adhesive on the tape. But I'd be curious too. ... View more

That is really helpful, Elinda about the shoulder and how you held your arm--that's what I DO!!!! So I'll work at relaxing it. Now, I can't figure out how to do the deep breathing--or, more to the point--how do you tell if you're doing it right? Plus, I try to do it in the morning and it makes me fall back asleep after about three breaths, which is, I know, NOT the point. When I first got lymphoedema I thought I would only wear the sleeve occasionally, but if I go very long at all I can feel it start to swell and I have to put the sleeve on right away. Makes me sad if and when I think about it. About mld--supposedly the point is to "re-train" the lymph, so it is going to your other lymph nodes rather than trying to get out of the ones under your arm, and when it can't giving up. It feels like hocus-pocus, but then all these things do a bit. x ... View more

Hi Katy, about shoulder pain: 1) if my shoulder is swollen it aches, so getting the swelling down (and keeping it down) is really important to me. My arm always looks 'fat', but most of them time it doesn't feel fat; if for some reason I get a flare-up, it looks REALLY fat and aches. I do think the sld that I do helps, although it doesn't feel like it. I have also found that the Haven excercises help me to keep movement in my shoulder. It hasn't been "right" since radiotherapy, but it usually doesn't pain me these days unless I am really waving it about. Elinda, did the MLD help? Glad the sleeves are nice, I keep meaning to go on-line to look for them. Now it's getting (supposedly!) warmer, it is more important to have a way to look less like I've broken my arm. My OH pointed out that I now hold it as if it were broken or injured--I try to remember not to, but it seems to be the default. Curses. I too carry antiseptic and plasters with me--I first realised I had lymphoedema when I developed cellulitis, and it is scary and unpleasant--and often makes you feel a bit like you have flu. I hadn't thought about those wipes, I think I'll get some for when I go on holiday. x ... View more

Sunburn!!! Avoid sunburn--theoretically (who would know who hasn't left the country) you can burn through your sleeve, and I think (someone confirm?) that the lymphoedema arm burns more easily--so you want to wear sunscreen during the day, and if you are sweating don't forget to reapply it. I know that sunburn can easily lead to cellulitis. I wonder, but have never put it to the test, whether baby powder would help you put your sleeve on if you were damp from the heat. When I went caravanning last summer I got a mosquito bite the first night in the crook of my arm. I FREAKED out (as you can tell, Katytc, I haven't had it long enough to be calm about it--just long enough to be well and truly sick of it!) sprayed it with my spray antiseptic, put a bandaid on it and put my sleeve on. I was scared I was going to scratch it, but it really didn't bother me too much. After that I was religious with the application of spray-on bug repellant. My gp gave me a week's supply of antibiotics without a peep although I preference my request with "my lymphoedema nurse suggested that it would be wise to..." so he didn't think I was making it up. I had also had cellulitis, so that may have helped to convince him I knew what I was about. It is important to know the symptoms, it needs immediate treatment since if you ignore it you wind up in the hospital with iv antibiotics--happened to a friend of mine! How much are your arms swollen? I keep wondering if I should get someone to teach me (and OH!) to bandage my arms, and if that would reduce the swelling. You can wear the bandaging all night can't you? Meanwhile, what are these coloured sleeves you are talking about Katy? They sound nice. Q. xx ... View more

Count me in. Although I have grown used to wearing the sleeve/mitten, and most of the time don't think about it, when it matters, when I need to look "nice" or feel really self confident at work or some event I just HATE it. I reach out to shake someone's hand and there's that freaking mitten. Or I put on a cute jacket or sweater that I've always loved and the cursed thing is tight on my right arm and looks ridiculous. I bought (at great expense, although it was on sale) a lymphediva sleeve and glove, but I can't decide if that's worse--I fear that it just looks silly and not "brave and chic". Black is my default colour for looking nice--the beige looks so bandage-y. Meanwhile, something I've learned: wool knits are more stretchy than acrylic or cotton. I discovered a company called woolover that sells wool jumpers in all sorts of weights, and I am slowly switching all my jumpers to wool (yes, I know they are a bit of a pain to wash). The fat-arm sleeve stretches out and then back without becoming unpleasantly mis-shapen. I have to be careful with those peasant tops--I bought one, and like it, but the sleeve gets stuck on my armsleeve and is a bit trouble-making. Don't you HATE how the armsleeves catch on your clothes as you try to put them on? xx ... View more

Leah, the forum feedback is one of the BEST things about bcc--the fact that you really are listening, even if we tend to get a little shouty. And hooray for Vita, which I think is a really great magazine that I *look* for when I'm at the breast unit, and have occasionally searched out online just 'cause the articles seem so good. I got great swim-suit advice last year. About the lymphoedema publications: can you pass on my wish that they give a prominent place to that 2008[?] Leeds Hospital Lymphoedema Service study that recommends "a regimen of post-operative exercise that restricts arm movements to below shoulder level (< 90° abduction and flexion) for the first seven days after axillary node dissection". I was so proud of myself that I could raise my arm almost the first day after surgery! I had clearance, so lymphoedema probably would have happened anyway, but ever since I heard about that study I have had a little "what if" niggle. ... View more

Once again let me add "hear! hear! to Elinda's response. It is worth noting that no matter what bc-lymphoedema-related forum you read, many of the comments are the same: a sort of bewildered uncertainty combined with a strong feeling of a lack of support and knowledge coming from well-informed experts. BCC and Haven seem much the same, a lot of REALLY good and practical information about preventing lymphoedema, explaining why you might get lymphoedema, excercises, care tips. There seems to be a lot of help right up to the point where you are diagnosed with lymphoedema, and after that it all gets a little fuzzy and out of focus. I know that "everybody's different" but that's true with BC too, and it hasn't stopped me from feeling like there's a whole support network of experts to help me--to answer questions I don't even know I have. LSN is great too, and maybe they are who we should be looking toward, but their remit is so much broader--lots of primary and leg le people as well, and they too don't seem to offer any practical hands-on, in-person advice. I don't feel like there is anything like what we've started talking about here. Anyway, I also agree with Elinda that this isn't a criticism of BCC--it's just a, oh, maybe request is the word, a request for you to consider a 'lymphoedema-sufferers' course. In the same way that the information about breast awareness and what it means to have bc is quite different for a woman before and a woman after diagnosis, or why the secondary bc women often feel that the primary bc women don't quite get it, I feel like women who have lymphoedema have a list of needs, concerns and questions that could be addressed in a specialised group session. From how to do sld to how to cope with the day-to-day trials. And as much as I appreciate the peer-to-peer support I get on here, it would be amazing to have someone who really, really knew what they were talking about talk to us. I know money's short for classes, so maybe it's not even possible, but if you're sitting about thinking "is there anything else we could be doing?", this might fit the bill. Quail xxx ... View more

The term 'postcode lottery' springs to mind when talking about lymphoedema care--that sounds really great Sarahlousie, and nice to hear that it does make a difference. ... View more

Hear, hear!!! It would be worth travelling to learn this stuff!!!! I was shown sld once, and am still not certain I'm doing it right, and none of the rest of it, yet my "bad" arm is about 25% larger than the other. It is frustrating. "why it is not possible to set up workshops to teach some of these skills- my lymphodema therapist said they used to run them. If anyone from BCC is listening- why not? There are after all workshops which you run on prevention? Why could you not ask the lymphodema therapist to do a series say on SLD, taping techniques etc?" ... View more

I think it can put you at risk of cellulitis, so I would keep an eye on it--if the arm gets warm and/or red, swells at all or you get flu-like symptoms--start the antibiotics as an emergency!!! Phone your gp or lymphoedema nurse and have a chat, I'd say. ... View more

Lymphoedema Support Network has a rather odd forum-y sort of thing here: http://lsn.healthunlocked.com/ I have found that they sometimes have good answers. The LSN also has some sort of continuing education "Modules" throught the BMA (I think) that you can ask your GP to take!!! I think it is free. I joined the LSN just 'cause I thought it might help with raising awareness. It is awful and frustrating isn't it? ... View more