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BARBARA, COLORECTAL CANCER SURVIVOR
I am alive against all odds. I was told I would die.

I was diagnosed with stage IV colon cancer 11 years ago and given a prognosis of just 3 months. Treatment could only be palliative: conventional chemotherapy treatment gave me a 50/50 chance of surviving. The first treatment didn’t work so I was given another, meanwhile the secondary tumour in my liver grew to 15cm.

When the side effects became too hard to manage and positive benefits were diminishing, I felt that there was not much hope for me. There were no biomarkers available in 2006 and personalised medicine was not being talked about. However, I did not give up. Together with my family, we researched two new treatments being used in Europe and America, and I asked my health team about them.

I was told that they were available but not via the NHS. I would have to apply for them as an exceptional patient. I sat in my jeans, with no hair and suffering the effects of chemotherapy, to a dozen suited representatives from my Primary Care Trust while they made decisions on my life. They told me that I was not seen as an exceptional case, so I decided to pay for treatment. It cost £21,000 as, at that time in the UK, you lost all NHS entitlement if you added a private drug to your present regime. Cancer does not wait for bureaucracy.

The drug worked dramatically and after only 4 months I was in hospital and my ascending colon and entire left liver were removed in one operation. But adjuvant treatment brought the same complications; I was ignored, but I wanted to be an active participant in my treatment. I was told that I was not exceptional and I was denied funding.

My cancer did return in the lymphatic system but I underwent another course of chemotherapy. I have been in remission for 9 years. It cost only £4,000 extra, on top of my existing regime, to pay for the treatment that shrank the tumour, allowed resection and enabled my recovery.

I went to the press. I felt that I had to do something. It just cannot be right that others may not have the chance that I had. My story was used as a case study by Prof. Sir Mike Richards to change the law in England. Thankfully, patients can now be administered a private drug without losing their NHS entitlement.

For me, the situation was difficult, but simple compared with all the treatments patients need to find out about today. The number of patients surviving cancer is increasing, but why should we allow this to be dependent on your position in society? Or based on where you happen to live? How do sick, maybe terminally ill patients gain access to all that can be offered today?

It’s hard for a patient to know where to start. No one expects to get cancer, no matter what statistics say, and the average patient knows very little when first diagnosed. In that first meeting with the oncologist when you are told, ‘you have cancer’, you are in complete shock and you struggle to take in any information about treatment plans.

How many oncologists pause at this point, to test the patient or ask the patient what is important for them, before starting treatment? There are treatments that cannot work for certain patients because of their genes and some treatments can prevent others working. For example, there are different types of colon cancer and where it occurs is relevant to the treatment. Or if a person has DNA Mismatch Repair (MMR) then it is unlikely that chemotherapy will work for them, yet this is often standard practice.

There are biomarkers that determine whether a drug is likely to work for that person and there are trials using combinations of drugs directed at patients with different biomarker profiles. This shows that ‘one size fits all’ just cannot work today. Is it ethical to give someone a drug that cannot possibly work for them?

Then there is the cost. Money wasted could be spent on precision medicine that is likely to work. I think that incorrect treatment is as bad as misdiagnosis. We are talking about the difference between life and death.

Each patient needs to feel appreciated: They are not a statistic. They are real people and have real needs. They want their treatment to suit them and have the best chance of working for them. For Renate K., just 6 millimetres was enough to change her life. It was the size of the tumour that her doctor discovered in her chest in 2017. The diagnosis was breast cancer. Fortunately, according to her physician, Renate’s disease was still in its infancy and radiotherapy would suffice as a follow-up treatment.

After the operation, however, it became clear that Renate’s lymph nodes were also affected and chemotherapy seemed inevitable. However, her doctor advised her to take a test to determine if she needed chemotherapy.* This gave Renate hope again: "The test showed that chemotherapy would have had very little effect on my condition. Without the test, I would have received chemotherapy along with its side effects, its potential risk of long-term damage and its impact on my usual routine, without any real benefit. My risk of a relapse would not have been reduced with chemotherapy, either. So I decided not to receive that treatment." Renate is happy with this decision - her treatment without chemotherapy has less of an impact on her life.

Renate has the support of her family, who agree with her decision. Her choice is also a welcome one for the group of refugees she works with. Renate’s commitment to helping them would likely have stopped if she chose to pursue chemotherapy treatment options. "These people depend on help. It makes me happy that I can continue to take care of them."

Although the cancer diagnosis was a life-changing moment for Renate, she does not let it rule her life: "I want to make the ‘here and now’ as positive as possible. For me this is easier without chemo. I'm still incredibly happy that I did not need chemotherapy. I'm a confident person and I am optimistic about the future."

I believe we can improve survival through better understanding and precise diagnosis. It is time for doctor and patient to be working together. The doctor is the expert in science, the patient knows their body. Together, they make a good team.

 

Please note that the Personalised Medicine Awareness Month Patient Stories are available in 11 more languages on the dedicated ECPC Website and can be downloaded from the Campaign Action Toolkit.