Why we need more research?

In my first blog, I had decided to write about something that I am passionate about (and lucky enough to have it as my job): why we need more research. But after a recent incident in my personal life, today I write as a patient, not as a researcher.

In April I became statistic. I became aware of my mortality. I was given the diagnosis nobody ever expects or wants to hear: at age of 31, I was diagnosed with ovarian cancer. I am now part of over 239,000 women diagnosed with ovarian cancer every year.(1) One day after the diagnosis, I did a surgery to remove my ovaries, Fallopian tubes, uterus, endometrium, and lymph nodes. Your head spins as suddenly there are all these questions you had never worried about, because you thought you had time or thought that this would never happen to you. Questions like not being able to have kids, being on menopause, or how long you will live. I know, however, I am not alone. Lucky for me, yet highly unfortunate; this is a common disease now, and treatments have evolved a lot; thanks to research.

You might be aware that Angelina Jolie opted to remove her ovaries earlier this year.(2) Her decision was very rational and pragmatic. Jolie had an increased genetic risk of developing breast and ovarian cancer because she is a carrier of a mutation in the BRCA1 gene;(3) BRCA being an acronym for Breast Cancer. If you are a carrier of a mutation in a BRCA gene you have a high risk of developing ovarian or breast cancer during your lifetime.(3) But what has this to do with me? I had low environmental risk factors for developing ovarian cancer: I exercised regularly, had a normal body weight, and had healthy diet and habits. I have now done genetic testing, and they still could not find a mutation. While research cannot explain why I had cancer now, at such a young age, research can and does give me hope that I will be cured soon.

So why do we need more research?

Research can help us prevent disease: there is a lot of strong scientific evidence supporting the positive impact of regular physical exercise and a healthy diet on the most common killer diseases of the 21st century: cancer, cardiovascular disease and diabetes.(4) We need more research to elucidate the mechanisms involved, how much exercise is needed (and at what intensity) and, the interaction between genetic and environmental risk factors.

Research can improve early diagnosis: The best chance we have to win the battle against any disease is early diagnosis. To achieve this, we need affordable and reliable biomarkers that are age-specific. Ovarian cancer marker CA-125, for example, is not always elevated and is particularly unreliable in pre-menopausal women, and therefore is currently not recommended for screening.(5) While my CA-125 was found to be elevated, my ultrasound failed to detect the tumour, and the doctors thought I had a benign cyst. If it wasn’t for the insistence of my sister (AKA my guardian angel) to operate despite the feedback of the doctors I had seen that it would be fine to postpone, it would have been too late for me with a diagnosis that would almost certainly have been a terminal one if I had waited.

Research can improve disease prognosis and outcome: as someone told me “statistics are for populations”, so I have tried not to focus on numbers. But anyone would get scared if they were to read that less than half of those diagnosed with their same cancer would survive beyond 5 years. What we are not always informed of is that, due to advances in surgery, chemo and chemo delivery, survival rates have significantly improved over recent decades, decreasing by half the likelihood of dying from ovarian cancer.(6)

Research can improve treatment options and patient’s life quality: as a patient, knowing the results of clinical trials has helped me to take decisions with my medical team regarding my treatment options. For ovarian cancer, for example, the most common treatment is 6 cycles (one every 3 weeks) of paclitaxel and carboplatin. There are, however, two large Japanese studies showing that weekly paclitaxel and carboplatin increased progression-free survival (i.e. how long you are free of disease) and overall survival.(7,8) An Italian study didn’t show a change in progression-free survival, but patients in the weekly treatment group had higher life quality.(9)

Research can help us cope with side effects better: a common side effect of paclitaxel, one of the drugs I am receiving, is hair loss. Losing hair has an enormously negative impact on women’s body/self image and quality of life.(10) By decreasing blood flow to the scalp during the injection of chemotherapeutic drugs, scalp cooling systems,(11) such as the Paxman,(12) can reduce hair loss. Patients can ask their oncologists whether this is a viable option for their treatment. During 70% of my treatment, having borne the chilling pain that unfortunately does accompany using these scalp cooling systems, I had significantly reduced hair loss, which meant I was able to appreciate having my own hair and not having had to use a wig for much longer.

In conclusion, knowledge is power and research is one of our most powerful means to inform. Research gives power to scientists, medical teams and patients. Being aware of the research available now and in the future can help you, as a patient, to make informed decisions, fight for better treatments and improve your own life quality. So why not support research?

References

1- http://www.wcrf.org/int/cancer-facts-figures/data-specific-cancers/ovarian-cancer-statistics

2- http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html?_r=0

3- http://www.cancer.gov/cancertopics/causes-prevention/genetics/brca-fact-sheet

4- Eyre H et al. Preventing cancer, cardiovascular disease, and diabetes: a common agenda for the American Cancer Society, the American Diabetes Association, and the American Heart Association. Diabetes Care. 2004, 27:1812-1824.

5- Partridge E et al. Results from four rounds of ovarian cancer screening in a randomized trial. Obstet Gynecol. 2009, 113:775-782.

6- Wright JD et al. Trends in relative survival for ovarian cancer from 1975 to 2011. Obstet Gynecol. 2015, 125:1345-1352.

7- Katsumata N et al. Dose-dense paclitaxel once a week in combination with carboplatin every 3 weeks for advanced ovarian cancer: a phase 3, open-label, randomised controlled trial. Lancet. 2009, 374:1331-1338.

8- Katsumata N et al. Long-term results of dose-dense paclitaxel and carboplatin versus conventional paclitaxel and carboplatin for treatment of advanced epithelial ovarian, fallopian tube, or primary peritoneal cancer (JGOG 3016): a randomised, controlled, open-label trial. Lancet Oncol. 2013, 14:1020-1026.

9- Pignata S et al. Carboplatin plus paclitaxel once a week versus every 3 weeks in patients with advanced ovarian cancer (MITO-7): a randomised, multicentre, open-label, phase 3 trial. Lancet Oncol. 2014, 15:396-405.

10- Choi EK et al. Impact of chemotherapy-induced alopecia distress on body image, psychosocial well-being, and depression in breast cancer patients. Psychooncology. 2014, 23:1103-10.

11- van den Hurk CJ et al. Scalp cooling for hair preservation and associated characteristics in 1411 chemotherapy patients - results of the Dutch Scalp Cooling Registry. Acta Oncol. 2012, 51:497-504.

12- http://paxman.de/downloads/fm_2013_03_11_10_30_52_8281.pdf