Edinburgh bone cancer survivor shares her story about the lasting effects of chemo

After being told she had bone cancer, Florencia Pistritto’s mind was focused on one thing: survival.

‘I just couldn’t stop crying,’ recalls Florencia, 31, a former waitress from Edinburgh. ‘All I could think about was my two-year-old son Marco.’

So when it was explained that the chemotherapy she needed might leave her with long term side-effects, this barely registered.

Florencia had a 10cm tumour in her thigh. ‘My doctors told me it was touch and go whether they could save my leg, but said it was possible to cure me with chemotherapy and surgery,’ she says.

Two years later, Argentinian-born Florencia Pistritto, Edinburgh, is in remission from cancer

Over the next ten months Florencia was given 17 cycles of cisplatin, a widely used form of chemotherapy.

‘I can’t say the risks weren’t explained to me because they were,’ she says now, two years later. ‘Before I started on cisplatin I was warned it might cause hearing loss and was given a hearing test.

‘But when you have a two-year-old and are trying to stay alive you tend not to worry so much about your hearing.’

However, after her first session, in July 2014, she noticed what she calls a ringing noise in her ears. ‘And when Marco was shouting his voice sounded muffled,’ she adds.

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‘I didn’t want to lose my hearing at 29 on top of everything else, but I had little choice as the doctors said cisplatin was the most effective drug for my cancer.’

Each new session of chemotherapy marked a further deterioration in her hearing, and after five cycles she needed hearing aids in both ears.

For Florencia, who speaks fluent Italian and who hoped to start a new career as a translator once her treatment was completed, it was a worrying development.

Cisplatin is given to 25 per cent of cancer patients, and while it is effective at destroying cancer cells, it may also damage the tiny hairs inside the ear that are crucial for hearing.

Florencia, who speaks fluent Italian and who hoped to start a new career as a translator once her treatment was completed, was worried about her gradual loss of hearing

Around 60 per cent of patients who receive the drug will develop hearing loss. The higher the dose and more courses of chemotherapy the worse the damage.

Cisplastin contains platinum, a heavy metal that’s very effective against cancer.

But it’s not just hearing loss. Florencia, like many who have cisplastin and other forms of chemotherapy, suffers from so-called ‘chemo brain’, characterised by problems concentrating and fatigue.

‘These side-effects have a big impact on my quality of life,’ she says.

Striking a balance between the need to eradicate cancer cells with the need to maintain quality of life after the treatment is difficult.

It is a growing challenge: advances in cancer treatment mean more people than ever are surviving cancer, according to a report published yesterday by the charity Macmillan Cancer Support, but around a quarter are left facing some kind of poor health or disability. 

Many have been affected by the side-effects of their cancer treatment.

A study just published in the journal Cancer found that one in five women over 65 with newly diagnosed breast cancer had lost the ability to complete some of the basic tasks necessary for independent living within one year of starting treatment as a result of the treatment itself.

‘I’m grateful of course to have had such effective treatment,’ Florencia says. ‘But with two million survivors in the UK there has to be more emphasis on our quality of life after treatment’

It’s not just chemotherapy that can cause long-term issues. 

For example, a study published in JAMA Internal Medicine showed that women who’ve had radiotherapy for breast cancer had up to a 4 per cent greater risk of heart attack — radiation is linked to coronary artery disease, cardiomyopathy (disease of the heart muscle) and heart valve disease.

At least 500,000 people in the UK are now living with ill health or disability due to their cancer treatment according to Macmillan Cancer Support.

Problems include chronic fatigue, sexual difficulties, mental health problems, urinary problems such as incontinence and gastrointestinal problems.

Professor Jane Maher, a consultant oncologist at Mount Vernon Cancer Centre, Hillingdon, West London, explains that some problems may only emerge months after treatment, and can persist for ten years or more.

‘It’s fair to say that health problems related to cancer treatment often go under recognised and under treated,’ she says.

‘Patients often don’t connect their symptoms to their cancer treatment especially if they start after treatment has ended. 

‘They may develop poor bowel control more than a year after pelvic radiotherapy, for example, while those treated with chemotherapy and radiotherapy as children may develop heart failure during labour due to damage to the heart.

Around 60 per cent of patients who receive the drug will develop hearing loss. The higher the dose and more courses of chemotherapy the worse the damage

‘Others suffer from “chemo-brain” a recognised form of cognitive impairment related to chemotherapy.

‘Fatigue is very common in the first year after treatment which can make returning to work hard.’

However, as more people now live many years after undergoing cancer treatment, attention is turning to try to ensure that those years are not mired by the effects of that treatment.

The charity Action On Hearing Loss has just announced a research grant to investigate exactly how chemotherapy drugs enter the hair cells in the ear and cause the irreparable damage.

‘Cisplatin is a gold standard treatment for solid tumours and is incredibly effective but it can cause profound hearing loss,’ says Dr Ralph Holme, the charity’s director of biomedical research.

‘It’s a significant health problem.

‘Our research is going to focus on understanding how cisplatin gets into the hair cells and then we’ll be screening a number of existing compounds to see if they can protect against this.’

Florencia gradually lost her hearing during the cancer treatment, and now completely relies on hearing aids

Switching treatments may help prevent some long-term effects, suggests Dr Timothy Yap, a clinician scientist at The Institute Of Cancer Research, London, and consultant medical oncologist at The Royal Marsden Hospital, London.

‘For example, we make sure patients are aware that hearing loss is a possible long-term side-effect of cisplatin and tell them that they should inform their oncologist if they notice any changes in their hearing,’ he says.

‘Even before tinnitus is obvious they may notice a buzzing sound or whooshing noise, so they can be switched to another type of chemotherapy such as carboplatin which has a much lower risk of hearing problems, before the damage becomes too widespread.’

Carboplatin also contains platinum, though is not as effective as cisplastin. Doses or scheduling may also be altered.

Another option is trying to personalise the treatment using drugs targeted at the patient’s specific cancer. Dr Yap treats selected lung cancer patients with targeted drugs called epidermal growth factor receptor (EGFR) inhibitors, such as Tarceva, Iressa and Afatinib.

‘These targeted drugs act like homing missiles against specific cancer targets, in this case EGFR, rather than proving toxic against all cells.

‘They work by blocking signals that tell cancer cells to grow. Patients are now screened first to detect if they have an EGFR mutation in their cancer, so oncologists can predict whether these targeted drugs will work for them.’

Dr Yap says that in certain groups of patients these targeted treatments not only have fewer toxic side-effects than chemotherapy, they can in some cases be more effective.

As more people now live many years after undergoing cancer treatment, attention is turning to try to ensure that those years are not mired by the effects of that treatment

Also being introduced are genetic tests that can identify patients who won’t respond to breast cancer chemotherapy, for example, so they can avoid side-effects from treatments that would never have helped them.

The National Institute of Healthcare and Excellence (NICE) updated guidance this month to recommend patients are given a new genetic test called Oncotype DX which can predict which women with certain types of early stage breast cancer will respond to chemotherapy.

This test helps clinicians ‘make more informed decisions about who will benefit most from treatment with chemotherapy’, explains Dr Jeremy Braybrooke, a consultant medical oncologist at University Hospitals Bristol NHS Foundation Trust.

COMMON SIDE EFFECTS TO CANCER TREATMENTS 

Breathlessness 

Tiredness (fatigue) 

Infertility 

Hair loss 

Mouth ulcers 

Eating problems 

Pain 

Lymphoedema  

Weakened heart and bones  

Menopausal symptoms 

Source: Macmillan 

If chemotherapy is unsuitable after surgery, radiotherapy or hormone treatments may be used instead.

Strategies are now being introduced to minimise some of the debilitating side-effects of radiotherapy, too.

‘There are also simple breath-holding exercises which we can teach people to do while having radiotherapy so their heart is kept away from the chest wall and less likely to be damaged by the treatment,’ says Professor Maher.

Breath-holding protects by pushing the heart away from the radiation beams. A study at Harvard University found for women having radiotherapy for breast cancer it cut exposure to the heart by up to 96 per cent.

It’s hoped that in the future cancer patients may avoid the long-term effects that Florencia has been left with. 

She knows she’s incredibly lucky to be still here — but her hearing is now so limited even with hearing aids that she has to wear constantly, that she will not be able to work as a translator.

‘I’m grateful of course to have had such effective treatment, but now there are two million cancer survivors in the UK there has to be more emphasis on what our quality of life will be like after treatment.’

Macmillan.org.uk