Why I underwent cutting-edge proton beam treatment and why I was one of the first women in the UK to do so


Kim Jones, 44, is one of the first people in the UK to receive proton beam therapy for a specific type of condition for her breast cancer

Pioneering proton beam therapy is being tested as a treatment, instead of conventional radiotherapy, for breast cancer patients with existing heart problems. Kim Jones, 44, a school caterer and mother of two from Ely, Cambridgeshire, was one of the first in the UK to get it as part of a trial.

THE PATIENT

My left breast’s upper skin seemed enlarged and odd towards the beginning of last year, and I also started experiencing acute stabbing sensations there.

After a mammogram, ultrasound, two biopsies, and a visit to my general practitioner two weeks later, I learned that I had stage 3 cancer that had progressed to the lymph nodes in my armpit. Cancer may spread through the lymphatic system; lymph nodes are glands that support the immune system’s ability to combat infection.

I had never been terrified before, so I was surprised. The hardest thing was telling my husband Mark and our boys Dylan, 14, and Elwood, 11.

Kim Jones, 44, is one of the first people in the UK to receive proton beam therapy for a specific type of condition for her breast cancer

Pioneering proton beam therapy is being tested as a treatment, instead of conventional radiotherapy, for breast cancer patients

Pioneering proton beam therapy is being tested as a treatment, instead of conventional radiotherapy, for breast cancer patients

My oncology team was very reassuring: from the start they said they wanted to cure me. I would have seven cycles of chemotherapy, as well as surgery to remove my left breast, as the tumor was quite large (7.5 cm).

I was told this would be followed by radiotherapy to ‘clean up’ any remaining cancer cells.

It was during an appointment at my local hospital, Addenbrooke’s in Cambridge, following the mastectomy last August that I learned about the PARABLE trial.

This was comparing conventional radiotherapy to proton beam therapy, which is more accurate, in patients with early breast cancer (where the cancer has not spread beyond the breast or lymph nodes) who have existing heart problems. Conventional radiotherapy is not ideal in these patients because there is a small risk of heart damage.

I have an irregular heartbeat due to a leaky heart valve, and knowing that conventional treatment would put my heart at greater risk, I was eager to participate in the trial. Fortunately I was hired.

The treatment itself was for three weeks from Monday to Friday at Christie Hospital in Manchester. I was staying at a nearby hotel and was taken to the unit every day.

Before they started, they made a mold of my body lying on my back with my arms up so that I was in the same position every session. This was to make sure the beam hit the right spot: in my case, the lymph nodes above my collarbone, close to my sternum.

I started treatment last October. Each of the 15 sessions lasted about 45 minutes, and although the proton beam machine was quite noisy, I felt no discomfort. But every session made me tired and I was advised to moisturise the skin of my left breast often. Two weeks after I finished, the skin close to where my breast was removed looked red and felt like a mild sunburn for a few days.

The Christie will follow me for the rest of my life and I have an echocardiogram every three months to check my heart. Fortunately, nothing has changed since before my cancer diagnosis.

I am slowly regaining my strength. I can enjoy walking, hanging out with my family and eventually wanting to go back to work.

THE SPECIALIST

Dr. Carmel Anandadas is a consultant clinical oncologist at the Christie NHS Foundation Trust in Manchester.

Each year, approximately 33,000 breast cancer patients receive radiotherapy as part of their treatment. This uses a beam formed by high-energy X-rays to damage the DNA of the cancer cells so that they are no longer able to replicate.

Radiotherapy is a safe and effective way to treat early stage breast cancer. However, we estimate that 500 patients per year in the UK who require radiotherapy for early stage breast cancer will receive a higher than acceptable dose of radiation to the heart, increasing their lifetime risk of heart problems by more than 2 per cent (which is the accepted threshold).

This group includes patients with underlying heart disease or slightly unusual anatomy. For example, their lymph nodes may be very close to their heart.

What are the risks?

There is less than a one in 1,000 chance that proton beam therapy increases the risk of developing another type of cancer later in life. This is a risk with all types of radiotherapy because exposure to radiation is a possible cause of cancer.

Dr. Richard Simcock, clinical oncologist at Sussex Cancer Center and Chief Medical Officer at Macmillan Cancer Support, says: ‘We can completely safely treat most breast cancer patients with radiotherapy.

“But there will always be a small subset of patients – either because of unusual anatomy or because of pre-existing heart problems – where even advanced radiotherapy techniques won’t allow us to deliver it as safely as we’d like.”

“Research in the US has already shown that proton techniques deliver smaller doses of radiation to the heart compared to standard techniques, but it is not yet certain whether this will benefit the patient in the longer term.”

These patients would still receive standard radiotherapy, but with modifications to try to lower the dose slightly to protect the heart.

But since 2016, we’ve been looking at different ways to treat them, including proton therapy. Here, the radiation is delivered using charged particles, rather than X-rays as in conventional radiotherapy.

In conventional radiotherapy, the beam is angled so that X-ray particles pass through the tissue of one side of the chest before exiting through the other side, avoiding most of the organs below.

But proton beam therapy targets the chest directly: we can locate where the energy is released and stop the particles when they reach the back of the chest so they don’t pass through the organs behind it.

This means that proton beam therapy can deliver the same dose in a more precise manner when the target area is close to the heart.

At the moment there are only two NHS proton beam therapy machines in the UK: at the Christie in Manchester and University College London Hospital.

The PARABLE trial, launched last year, is the first trial in the UK to compare proton beam therapy with conventional radiotherapy for early breast cancer. Similar trials are being conducted in the US, Denmark and the Netherlands. Our aim is to recruit 192 patients from 22 UK hospitals; so far 16 patients have been treated.

Before we treat the patients, we spend two or three weeks accurately calculating their customized treatment. This includes the ideal angle and energy of the beam of protons to target the cancer cells.

A few weeks after treatment, the patient may experience redness and mild swelling or a rash due to inflammation of the rays, but this usually clears up within eight weeks.

Patients often feel tired and some may experience a sore throat because the throat is close to the lymph nodes in the neck, which is a treatment area for some. This will also decrease in the following weeks. However, because proton therapy is more accurate, it should cause less damage to healthy tissue and fewer side effects.

In addition to the usual checks, Kim will have a scan in two years to see whether the treatment will affect her organs. The results of the trial will not be visible for another five years at the earliest. If we can show that proton therapy makes a difference to this group of patients, it could be routinely offered to others in the future.

Why I became one of the first women in the UK to have pioneering proton beam therapy