I posted this as a comment on a fellow breast cancer sufferer’s blog today, but feel I should really do a full post about it.
This was my comment in response to her post about suddenly being confronted with the risk of developing lymphoedema / lymphodema if you’re in the US. It seems common for lymphoedema to be not mentioned at all. It’s usually something someone else tells us about – (this was originally laid out better than it has appeared here, but for some reason known only unto the WP gods, it is refusing to show the line spaces I’ve inserted in the edit – they’re in the edit, but refuse to show in the finished post! Aarrrrggghhhh!)
July 2, 2015 at 8:17 am
I’m so sorry to see you’re going through this.
For some of us, that’s how it goes. You might want to see a rheumatologist if you’re experiencing any unusual muscle pain, especially noticeable if you press your fingertips into muscles, or fatigue – you say your energy is good at the moment, so was mine until about 4-6 months post chemo and radio – because the treatments may MAY have pushed you into fibromyalgia. They do to a lot of us. Early treatment of fibro is way more successful than late treatment.
No-one told me about lymphoedema either. I knew because my Mum, who had breast cancer 18 months before me, told me about it. When I screamed at them “Why didn’t you TELL ME???” they spouted some shit about Gradual Disclosure, about not ever telling any of us the whole story for fear of scaring us. I was furious, just like you.
You should know though, that even though the risk of developing lymphoedema stays with us forever once we’ve had axillary clearance surgery, with every passing year that you DON’T develop it fully, the risk gets smaller.
We make sure that we have a stock of systemic and topical antibiotics at home so I can immediately self-treat if I get so much as a scratch, and that my GP knows I will need immediate anti b’s if I present at the surgery with any damage to my left arm. It’s also writ large on all my hospital and other medical notes that no-one can use my lymphoedema risk arm for so much as taking blood pressure, and certainly not for taking blood. You must make sure everyone you are ever likely to come in contact with is fully aware that your lymphoedema arm must NOT be used for anything. Nothing. Get one of those Medic Alert bracelets or pendants and make sure it’s listed in that. Protect yourself.
One thing I found helpful on the occasions that mine swelled up was to sit there with that arm as high up in the air as I could keep it. Range of movement, if yours is still restricted post surgery, does come back after a few months, but you do have to keep pushing it to be able to get it up past your ear like you could do pre-surgery.
I’m 7 years out of chemo and radio, and I already unknowingly had fibromyalgia before the treatments. That was made much much worse by the treatments. Like you, I am more ill post cancer than I was with the cancer, which is just so wrong, and so frustrating. I watched dozens of others hop up from their chemo chairs and pop back to work for the afternoon, whilst I struggled to even sit in the chair and couldn’t do any work at all. I think this happens to more of us than medicine cares to acknowledge, because it’s all about insisting how marvellous these “life-saving drugs” are. I don’t mean to sound ungrateful, because I’m grateful to still be here, but I’m now disabled and haven’t been able to return to any work (acting, training horses, nutritional consultancy) or finish the final year of my BA/BSc joint degree. It sucks. I’m not “grateful” for that. I’m furious, and massively upset and depressed about it. No-one warned me, either.
Good luck with staving off the lymphoedema – not everyone develops it, and if you’re careful with that arm for the next few years, there’s a very very good chance you won’t develop it at all 🙂 If you hate the compression sleeve (who doesn’t?) try the arm-in-the-air thing if you swell up. Make sure you have enough anti b’s at home so if you get a scratch, graze, split, bite, whatever to that arm, you can self-treat out of hours. As a bare minimum, keep a bottle of tea tree oil at home. Keep from putting undue strain on that hand and arm, lift everything with your other arm when you can. I know it’s hard with a child, but you must. The riskiest injuries, by the way, are cuts, splits and scratches, burns etc to your fingers or down the sides of your nails. Wear gloves when possible.
I know it’s no consolation to know that some people suffer even worse consequences of the treatments than you’re currently experiencing, so I won’t go there 🙂 Just know you have my sympathy, because I do know what a shock it is to find that the people you trusted to do their best for you turn out to have witheld vital information from you, if not actively lied to you about the possible consequences. They claim that those of us who don’t bounce back from chemo et al are “very unusual”. That’s another lie; there are millions of us.
I hope you get through the lymphoedema threat stage successfully. Despite my many consequences of chemo etc, it’s 8 years this August since my surgery, and I still haven’t yet developed it, so that’s encouraging 🙂 My arm has swelled up several times, I’ve determinedly thrust it in the air and eventually it’s reduced again. I fight off any medic who approaches that arm with blood pressure cuffs or needles, and refused two lots of surgery they wanted to perform on that shoulder. Some medics are ignorant of lymphoedema. Any damage to my arm or hand immediately gets anti biotics. I use a topical lotion called Zineryt, a mixture of zinc and erythromycin, direct on any wounds, and take a broad spectrum oral anti biotic, too. You still have some lymph nodes in the rest of your arm, even if they removed every last one from your arm pit, so you aren’t completely vulnerable.
As for the lymph massage, I’m sure that self-massage, with your arm up and working from wrist to arm pit using your other hand, will be at least helpful in getting fluid to drain back properly.
I’m here if you need to ask me anything.