What the breast cancer survivors advise…

Some things the doctors and websites simply won’t tell you.  In the course of writing a feature for the Irish Daily Mail, I talked to several breast cancer survivors for their honest, straight-from-the-hip advice on what to do, what to avoid and what to look out for if you get a diagnosis of breast cancer.  This is what they said…

  1. Look abroad.  Foreign medical websites are often better than homegrown ones for up-to date information .  Breast Cancer Online (www.bco.org) is aimed at healthcare professionals – ignore the bit that says it’s ‘not suitable for nonprofessional readers’ – why shouldn’t you read what the doctors are reading?  Breast Cancer Network Australia www.bcna.org.au is a patient website but it has good resources and is not as cloying as many sites. Their Messages of Hope and Inspiration download is great.
  2. Prepare for lymphoedema. It’s pretty common after surgery or radiation treatment and if treated early can be better contained and controlled. Ensure someone who knows that they’re doing measures the volume of both your arms before surgery and records the results (keep a record yourself too).  It’s done by measuring at 4cm intervals from wrist to armpit. Some hospitals do this routinely but some don’t.
  3. Move. Advice on movement after surgery has changed. Use minimal movement for the first week to aid healing and then start gentle physio exercises.
  4. Check out MLD.  MLD (manual lymphatic drainage) can be of enormous help if you do get lymphoedema. A trained practitioner can also teach you how to do it yourself .  See www.mldireland.com
  5. Do exercise. Exercise is great for breast cancer because it helps you sleep, it cheers you up, it helps control your weight and it gets you into a new exercise habit after your life has been disrupted. They used to say you shouldn’t do much exercise – and certainly not lift weights – but that’s now been overturned.
  6. Kinesiotaping is amazing.  You may have seen athletes wearing strange brightly coloured bands on shoulders or legs –it’s known as kinesiotape and can be of enormous help if you develop lymphoedema following radiation or breast removal.  www.kinesiotaping.co.uk can put you in touch with practitioners.
  7. Think ahead. Make sure your hospital keeps the cancerous tissue they extract from you. As treatments are developed and refined for specific genetic versions of breast cancer, in the future you may need to know precisely which type you had to get tailored treatment.
  8. Keep records. Insist on keeping copies of all your test results and notes. Many hospitals are still poor at record keeping and important information could get lost.
  9. Check your tests. If you go private for your care, make sure they aren’t doing unnecessary tests and treatments (they’re like the garage – will do everything, even if you don’t need it). If you’re in the state system, check the opposite – that you aren’t missing out on the best or latest treatments.
  10. Watch your immune system. Chemo destroys your immune system. There is a very expensive drug called Neulasta (Pegfilgrastim) which (if given after each chemo) protects you from infection.  Make sure you’re offered it.  Bear in mind that many cancer patients on chemo die from ‘underlying medical conditions’ if there’s an outbreak of flu or legionella.
  11. Invest in soft front fastening bras. They are easy to put on, comfortable and great when you’re not moving much.  But once you start exercising, get a very good sports bra. Run Ireland (www.runireland.com) has good choices.
  12. Crop it. Chemo inevitably means hair loss (within the first three weeks of treatment). It’s much easier if you get your hair cropped very short before it starts to fall.
  13. Be wig-aware. Wigs are a waste of time if not properly fitted. Theatrical wigmakers are better at this than orthotics suppliers (who are not real hairdressers).  Real hair wigs are very expensive and you will need two – bear in mind they need as much styling and washing as your real hair. Theatrical wigmakers recommend acrylic wigs with a monofilament area to make the wig look more natural.
  14. Go a bit crazy.  Buy them longer than you need and have them cut and styled on you. Don’t buy it when your hair is long – it won’t fit when you’re bald.  Either buy two wigs the same or choose one that’s a bit wild – in colour or style. Breast cancer gives you the chance to be a crazy cancer lady if you want!
  15. Choose caps and scarves. Chemo makes you feel very hot and if you have breast cancer before your menopause the sudden loss of ovarian function (chemo kills them) will give you raging hot flushes. So find alternatives to wigs for those times (plus exercising and at night – heads get cold at night).  Muslim shops online sell great cotton caps or invest in a range of pretty scarves.  Turbans are another option but you may need to use padding underneath to make them look okay.
  16. Bald heads burn. It may be tempting to just bare your head to the world but bear in mind that chemo makes skin photosensitive so you can burn easily. Up the SPF.
  17. Ask for Als. The majority of breast cancers are hormone positive – either oestrogen (ER) or progesterone (PR). After surgery and sometimes after chemo and/or radio you will be offered anti-oestrogen drugs to prevent recurrence.  These tend to be Tamoxifem and Als (aromatase inhibitors). Tamoxifem can cause other cancers. Als are very effective but do have side effects – joint pains, UTIs and vaginal atrophy and hair thinning.  It wrecks your sex life!
  18. Demand silicon. You can get burns during radiotherapy and you should demand Mepitel silicon dressings. They make a massive difference to pain levels burns cause and how well the skin heals.
  19. Invest in Bio Oil.  Bio Oil is brilliant for scars.  Chemists stock it or buy online from www.inhealth.ie  MLD can also reduce scarring.
  20. Don’t blame yourself.  So many women beat themselves up if they get breast cancer. They feel guilty; like they’d done something wrong.  Yes, there are things that increase your risk but mostly it’s just down to luck. Shit happens.