We looked at how our ladies cope with endocrine
(hormone) therapy, which is used as an adjuvant treatment for those with
hormone positive breast cancer. Drugs such as Tamoxifen and Zoladex along with aromatase
inhibitors, such as Anastrazol, Exemestane and Letrozole, are used to prevent local
recurrence or further spread of cancer after a primary diagnosis or as part of
ongoing treatment for those who live with secondary breast cancer.
Naz shared
a research article in the scientific journal Lancet Oncology which had reviewed
the evidence for approaches to managing side effects. The article pointed out
that hormone therapy causes a significant impact on quality of life which then
affects adherence to medication. It also said that there should be an aim for
breast cancer patients to be returned to pre-cancer quality of life and
emotional/social function. Further, it was felt that this could only be
achieved by careful management of side effect of anti-cancer treatments. Our members
do not appear to receive much support to achieve this aim, with many being
given a prescription for tablets to take for 5 or 10 years and then sent away
with no further follow up.
Outcomes cited
in the article found that 16% of pre-menopausal women stopped taking the
medication due to side effects. Sadly, some of our members experienced side
effects that made them miserable, with impaired quality of life, but felt they
had no follow up and that some felt their concerns were not taken seriously by
medical teams. There seems to be a feeling that we should be grateful to have
our breast cancer treated and that side effects are just part of keeping the
cancer away. Encouragingly, some had very helpful GPs, however, others felt
their family doctor did not have the expertise of the oncology team who made
the initial prescription.
For those
of us who tolerate these drugs well, there is a significant comfort factor in
knowing we are doing all we can to prevent the recurrence of cancer, although
it needs to be remembered that taking these tablets is not 100% effective and
they can also act as a daily reminder of our breast cancer diagnosis, which can
be psychologically challenging.
Of the many
side effects that were reported by our members, some were commonly recognised
in breast cancer leaflets - hot flushes, joint pains (for some, the pain was so
severe, they struggled to walk), sexual dysfunction and reduced bone density. But
there are also lots more - vaginal dryness causing pain during intercourse, low
mood, cognitive impairment (this often had a significant impact on work and
home life), poor quality sleep and thinning of hair, nails and skin.
As always,
our members offered advice on what had helped them the most. Clearly there were
some pharmaceutical prescriptions given by a doctor but there were also
non-pharmaceutical options too. Many found a more holistic approach helpful,
for example, using mindfulness techniques. Yoga and Pilates were found to ease
stiff and painful joints. Exercise was found very helpful at helping lift mood,
help reduce the frequency of hot flushes and improve sleep as well as improving
fitness. Some members like to run, others to walk, cycle or spend time gardening.
Others found the use of dietary supplement helpful, although it is important to
check with your doctor, pharmacist or specialist nurse to ensure there are no
interactions with prescribed treatments.
Pain
control was very important for those with muscle and joint pains. For some,
simple pain killers such as paracetamol sufficed, for others pain control was
much trickier - some had been referred to a rheumatologist and found this
helpful. Acupuncture was also used, albeit with varying success. For many,
however, they were left to try to manage pain in the absence of an oncology
team. Sometimes a change in medication or a short break can make a lot of difference,
but these opportunities are not available in the absence of follow up support.
Sexual
dysfunction was very common, especially after the rapid menopause brought on by
breast cancer treatments. Many members felt it hard to talk to medical teams
about such a deeply personal issue. Vaginal dryness symptoms can be addressed
with a prescribed moisturiser but other symptoms such as loss of sex drive were
much harder to talk about and even harder to find treatment in the absence of
an oncology team with access to a psycho-sexual counselling team.
Almost
universal amongst our members was the lack of information about benefits of
treatment and harm from side effects. This meant that there was little
opportunity to discuss in depth how much the treatment would benefit them and
at what cost. Without this, there is no informed consent for drugs to be taken
for up to 10 years. More than one member described being sent off with no
follow up and a box of pills. For those who still had regular oncology follow
up, this was felt to be useful and a good opportunity to get help.
·
Trying a different brand can often settle the
side effects and sticking to one brand once we’ve found what suits us can also
be helpful. This isn’t always easy as pharmacies tend to supply the cheapest
option at the time, but it is possible with the help of a friendly GP and
pharmacist who will specify and fulfil a brand-named prescription.
- ·
Side effects may be more severe at first, so it’s
worth persevering to see if they settle, however, we also think that side
effects may be cumulative with aromatase inhibitors as our body’s oestrogen
becomes more and more depleted.
- · Hot
flushes may be helped by a mild dose of an antidepressant, and some women have
found acupuncture helpful.
- · Joint
pain is helped by regular gentle exercise. Supplements may be helpful, such as
magnesium, and we suggest consulting a medical professional before taking
these.
- · Taking short breaks to allow the body to recover may be useful, again in conjunction with our GP or oncologist.
Our
advice to anyone taking these drugs is not to suffer in silence, but to seek
help. Speak to your GP and have a frank discussion. Groups like ours, we agree,
can help hugely as we share tips and support each other with our issues.
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