Fear of lymphoedema

OK, so I’m worried I’ll develop lymphoedema at some point after my operation.

Now I’m willing to bet that most of you have never even heard of this “devastating disorder” and “dreaded complication” of breast cancer treatment. I’m not sure I had before my diagnosis, but I certainly have now. I’ve been told I have up to a 25% chance of developing the condition.

Any woman whose lymph nodes are affected by breast cancer treatment (ie through surgery or radiation) can get lymphoedema. It affects the arm on the side you had surgery. For me that’d be the right arm and I’m right-handed.

Patients with the condition can have “chronic, progressive swelling, pain, recurrent infections, and significantly decreased quality of life”. In most cases, lymphoedema develops slowly over time, and the swelling can range from mild to severe. It can develop at any time – even decades – after you’ve had breast cancer treatment; you can’t predict who’ll get it; it’s not clear if it can be prevented; and, once you’ve got it, it can be managed but it can’t be cured. It’s been said that it’s “one of the most poorly understood, relatively underestimated, and least researched complications of cancer or its treatment”.

There are lots of precautions you’re advised to take that might lower your risk of developing lymphoedema or delay its onset, or reduce its impact once you’ve got it. Note that it’s might, not will. No wonder women worry about it. In medical speak: “The lack of clarity for effective preventative measures likely contributes significantly to patient fear and anxiety.” As lymphoedema can develop years after treatment, it’s suggested you take the precautions FOR THE REST OF YOUR LIFE. It’s known that certain things definitely increase your risk, including putting too much strain on your arm too early, infection in a cut or graze and insect bites. So you’re advised to:

• not use your arm for anything heavy until you are told you can.
• wear gloves for gardening and washing up.
• use an electric razor rather than a manual one if you shave under your arms.
• take particular care with any cuts or scratches you get on your arm, however small. If you see any redness or swelling around the cuts or scratches, you’ve to see your GP straight away as you may need antibiotics.

There’s more. For example, use nail clippers rather than scissors and don’t push your cuticles back (does that mean no more salon manicures?); avoid anything that increases the temperature of your skin, such as hot tubs, saunas, steam rooms (not that I ever went to that many, but I guess that means goodbye spas); and use insect repellent (what, even in south London?). You’re also advised never again to have injections in the arm on the side you had surgery. Same goes for having your blood pressure taken and for having blood taken. There’s lots more, but I’m sure you get the picture.

And that’s all just to stop you getting it. You don’t want to hear about what you have to do to manage it if you do in fact get it.

And what about exercise? Well wouldn’t you know, more uncertainty.  There are risks to both exercising and not exercising. I’ll definitely be exercising, but where does that leave my beloved tennis and skiing? At this stage, I just don’t know.

Let’s take tennis. You can begin to go back to the activities you did before your surgery about four to six weeks after surgery or radiation, ie once you are fully healed. That for me, assuming all goes well, would be some time in April. However, you’ve to take care not to over-tire your shoulder and arm and you’ve to avoid “vigorous, repeated activities”. Isn’t that pretty much what tennis is? As for skiing, well lymphoedema can develop even decades after surgery “after seemingly trivial trauma”. Now I’m a pretty good skier, but I still fall (someone once told me if you don’t fall, you’re not trying hard enough!). There’s no way of guaranteeing I won’t fall on my right-hand side. So does that mean I stop going skiing? Or that I go but stick to beginners’ slopes? As I said, at this stage I just don’t know.

Medical advances will result in fewer women getting lymphoedema in the future. But this is now, so I guess I’ll just have to be careful and hope for the best. I’m sure a lot of the precautions eventually become second nature and that, as long as you can keep the condition at bay, taking them won’t seem the big deal it seems now. I really would like to still be able to play tennis and ski, though. Keep your fingers crossed for me.

I accept I’m perhaps worrying too much over this, and that perhaps I’ve transferred a lot of my anxiety over this whole breast cancer thing into a fear of developing lymphoedema. That said, up to 30% of women who have the surgical procedure I’m having – axillary lymph node dissection or axillary clearance –  do develop the condition. That’s quite a high percentage, is it not?