Writer, mother and grandmother, DIANE TREMBATH, lives on Exmoor. After being given the all clear three years ago, she has recently been diagnosed with breast cancer for the second time.
She has agreed to write a diary about her experiences for Live Better With - sharing her observations and insights, both practical and emotional. Here's part 8...
by Diane Trembath
The standard of care that I have had for both bouts of breast cancer has, apart from a couple of blips, been excellent, but this isn’t always the experience of every breast cancer patient. Services, staffing levels, and waiting lists vary from NHS trust to NHS trust and this was brought home to me when I attended a recent presentation on lymphoedema prevention and management and to check my L-Dex score. An L-Dex score represents the difference in the amount of extracellular fluid in an at-risk limb compared to an unaffected limb. It should have been included in my pre-surgery tests to provide a baseline reading but, for some reason, wasn’t.
By way of background, lymphoedema is a long-term (chronic) condition that causes swelling in the body's tissues; it’s a common post-surgical complication for anyone who has had lymph nodes removed as part of their surgical treatment for breast and some other types of cancer. The more lymph nodes removed, the greater the risk of developing lymphoedema at some point in the future, in particular in the first two years after surgery. So, regular monitoring during that time enables lymphoedema to be detected early and, if detected, a treatment and management plan put in place.
Learning about lymphoedema
One of the lymphoedema nurses checked my L-Dex score using a SOZO®, which is, apparently, the world's most advanced, non-invasive device of its kind; it took only minutes and was completely painless. It’s very impressive but not every NHS trust has this equipment and it was yet another reminder of how lucky I am to live where I do, with access to health and medical services like this. I have been doing my post-surgery exercises– designed in part to prevent lymphoedema – without fail but it was still a relief to learn that my L-Dex score was well within the normal range. Another thing I don’t have to worry about! But, eternal vigilance and all that, I will be having my L-Dex score checked every three months for the next two years.
The presentation was excellent – with plenty of clear, well-explained information on lymphoedema, and some sound advice on, for example, the importance of good skin care, which includes keeping the affected area well moisturised. Massaging with a suitable cream, oil or lotion, preferably one that is free of unnecessary additives, working up the arm, rather than down, and across the chest and away from the affected area and armpit is the way to go.
The lymphoedema nurse also mentioned the importance of taking breaks every 20 minutes if we were doing anything that involved repetitive actions – crucial for anyone like me who does a lot of knitting and sewing and, of course, for those of us whose work involves using a computer for much of the time. When you’re engrossed in your work or a leisure activity, it’s easy to lose track of the minutes and hours, so I’ve started using either my old-fashioned kitchen timer or the timer on my smartphone to let me know when I need to pause.
Regular exercise, especially swimming, is a great help too, as is eating well and maintaining a healthy weight. Occasional treats are fine but the emphasis is on the word occasional! And, for keen walkers, it’s a good idea to support the affected arm in a pocket, from time to time. It was all good, sensible advice and I have included all the relevant tips into a daily routine that supports my recovery and general well being.
Picking over the bones
Meanwhile, there had been figures of a different kind to get to grips with. A copy of a letter from my surgeon to my GP had arrived. This gave the results of my recent DEXA scan, which measures bone density. This was a routine procedure because the cancer had been oestrogen receptor positive and I had been prescribed Letrozole, to suppress oestrogen production. But, one of the many side effects of Letrozole is that, by suppressing oestrogen, it decreases bone density and increases the risk of developing osteoporosis.
According to my surgeon, the DEXA scan score indicated that I already had osteoporosis and he had asked my GP to prescribe appropriate medication. The only thing wrong with this was that my score (-2.1) did not, in fact, indicate osteoporosis… The score indicated osteopoenia, which means that, yes, I have weaker bones (its an age thing!) but they are not yet likely to break easily, which is the case for osteoporosis. What’s more, I’ve stayed within this range for the past nine years and having osteopoenia does not necessarily mean that I would develop osteoporosis – although taking Letrozole for five years makes this far more likely.
I wasn’t sure what to expect when I saw my GP but I shouldn’t have worried. She had already picked up the error and assured me that she wouldn’t be prescribing bisphosphonates – the standard treatment for osteoporosis - any time soon. And then we had a thorough discussion about Letrozole and its side effects, some of which are very unpleasant. I explained that I would like to see the comparative figures for treatment outcomes, as in surgery only and surgery plus hormone therapy, such as Letrozole. I had asked for and been given this information after surgery the first time I had breast cancer and, based on this, I had been able to make a decision about my treatment that was right for me at that time, at that point in my life. This time round, no-one has actually quantified the difference that taking Letrozole would make to me, in the short, medium and long term.
My GP could not have been more helpful and fully understood that for me now, at 72, it’s quality of life that counts, not quantity. She recommended a top-to-toe health MOT, including blood tests, to ensure that my general health is good and she will then contact my surgeon to ask about, first, a possible alternative to Letrozole, with fewer or milder side effects, and, second, for the comparative outcome figures. ‘That way,’ she assured me, ‘you can then make a fully informed decision about your treatment. And that might mean you decide against taking medication...’
Recognising that one does have a choice is vital for anyone facing a difficult decision about cancer treatment. Having the full support of a good and caring GP in making that decision can make such a difference to one’s peace of mind.
Visit the Lymphoedema Support Network to find out how to recognise lymphoedema signs and symptoms, how to prevent and manage the condition, and the support that’s available if you have lymphoedema.
To be continued
Diane with her beloved canine companion Pumpkin
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