The image of the cancer experience needs a reality check

Do we really have a more formidable foe than cancer? By the end of this year, The National Cancer Institute estimates that nearly 1.7 million people in the United States will be newly diagnosed with cancer. They say that another 600,000 people will die from it in the US. Cancer comes in many forms and attacks many systems within the body, but in 2015 one of the most commonly diagnosed has been breast cancer. Nearly 300,000 people are expected to be diagnosed in the US by the end of this year, according to Breastcancer.org. In fact, one in eight women will develop breast cancer within her lifetime.

With awareness levels higher than ever, translating into faster diagnosis and better treatments, Breastcancer.org estimates that only 40,000 women will die of the disease this year. This is a large decrease from the 1980s, and as such, breast cancer is often labelled the ‘good’ cancer.

That’s a mistake, according to Jenn Alter, a woman from St Louis in Missouri, who beat breast cancer two years ago but remains on heavy medications to prevent a relapse. As she put it:

Right after my diagnosis, this woman I worked with told me: ‘Oh don’t worry. Breast cancer is a good cancer to get. Nobody dies from breast cancer anymore.’ I always tell people that everyone is aware of breast cancer. Unfortunately, people don’t seem to be aware that the treatment is downright medieval, and that people still die from it.

Fed up with the ‘pinkification’ of her pain, Alter posted photos of just one snippet of her battle, her radiation burns after her double mastectomy, on her Tumblr. Those photos went viral, sparking a different kind of awareness – awareness of a ‘cure’ that’s more than just the wave of a magic wand.

‘I’ve heard people say it’s like getting a free boob job,’ Alter continued. ‘But it’s not. Chemo was rough. The hair loss, the pain, the nausea. It was burning out my veins in my feet and hands. They were red and inflamed for months. It made my toenails fall off.’

Photo by Digg.com

After chemotherapy, Alter went through more than a month of radiation, which left her skin permanently weakened and damaged. Her cancer was hormone-positive, meaning it responds to oestrogen, so she now takes tamoxifen, a hormone therapy that binds to oestrogen receptors so that it is blocked from attaching.

It comes with a host of possible side effects, the most common being hot flashes, tiredness, weakness, headaches and dizziness, vaginal discharge, nausea, thinning hair, and eye problems like cataracts. Less common side effects include blood clots, strokes, endometrial and uterine cancers, bone loss, mood swings and depression. And Alter must take the medication for 10 years, or her risk of redeveloping cancer stands at 50 per cent, according to her doctors.

Hormone therapy is just one of the hard treatments cancer patients must face in their long battle. The American Cancer Society cites studies that link both radiation and chemotherapy to memory loss, fuzzy thinking, difficulty concentrating and even personality changes, due to a side effect called ‘chemo brain’, which can last mere hours, but often years.

Meanwhile, strides are being made in cancer immunotherapy, considered the next big step in Stage 4 cancer treatment. Immunotherapy is far less toxic than chemotherapy, and holds promise for elongating lifespan or even providing a cure, but the side effects for some can be devastating, too. A recent study by researchers at Cornell University listed liver damage (hepatotoxicity), chronic inflammation of the bowel and diarrhoea (colitis), and hypo-/hyper-thyroidism (endocrinopathies). These life-altering medical conditions result from an over-active immune system, and can be counteracted with some success by corticosteroid immunosuppression. Still, the toll on the human body is sometimes great.

The cheery, upbeat picture for survivors might be false, but few will forgo life-saving therapy because the going gets tough. When it comes to the new immune checkpoint inhibitors, ‘given the great potential for life-sustaining effect and high rates of tumour response in certain diseases, I think the treatment absolutely favours benefit over risk,’ says the medical oncologist Michael Postow of Memorial Sloan Kettering Cancer Center in New York. 

The oncologist Vincent DeVita, former head of the US National Cancer Institute and co-author of The Death of Cancer (2015), adds that ‘patients must be told the truth as kindly and as gently as possible’. For a metastatic cancer such as lung cancer, the 20 per cent potential for a cure with some newer therapies truly lessens the downside risk.

Immune therapy, in particular, is less toxic than chemotherapy, but even when a new therapy comes with worse side effects, patients tend to ‘select the option that offers the best possibility of cure’.

Of course – but where does that leave the patient? Alter’s answer is: ‘We are expected to be happy that we survived, despite whatever mental and physical health issues we may still be experiencing.’ And she finds it distressing to see how the Stage 4 women (and men) get left out of the new, upbeat cancer story, when most of them are going to die.

Edited by Pam Weintraub/digg.com