ARSER’s main objective is to develop research into the after-effects of radiotherapy, and thus, to achieve this, to raise funds.
Its aim is not to establish basis for claim: ARSER is not intended to group patients considering they are “victims” of radiotherapy. Rather ARSER wants to inform patients and doctors about the progress of the research on the after-effects of radiotherapy and to finance it.
Dr. Sylvie Delanian is one of the very first physicians in the world to have cared about the after-effects of radiotherapy as a radiotherapist and to have provided answers, particularly for treatments that have been in effect for more than 10 years.
Along with Jean-Louis Lefaix, a researcher at the CEA, and then with Dr. Pierre-François Pradat, neurologist, she led research to better understand the mechanisms and develop new treatments to reduce these after-effects.
Many patients cured of their cancer long ago, called “long-term survivors”, and no longer undergoing medical treatment, are often unaware that the ill-systematised symptoms they suffer are after-effects of radiotherapy.
Testimony of a rebirth and gratitude. (Or a happy story after the assessment of a disabling radionecrosis of the sternum)
I am 70 years old and have been retired for 3 months after a life devoted to pediatrics. On January 2, 1998, at the age of 49, I underwent surgery for right breast cancer followed by a 3-month radiotherapy treatment. Just after this radiotherapy at the end of April 1998, I suffered a 2nd degree burn on the thorax (anterior radiodermatitis) at the level of the irradiated zone and still today there is a scar with small-surface red varicose veins called telangiectasias (spider veins).
On December 1, 2001, during a train trip, I was thrown violently against the shelf of a toilet sink after a sudden braking. Despite the immediate pain in the sternum, the shock seemed minor. On leaving the train, I felt very different, which was accentuated by driving back home without power steering! This was now 4 years after radiotherapy.
By December 2001, the pain seemed under control, bearable, but any movement of the torso provokes it acutely. I was happy not to have breathing difficulties … I was sedentary and my activities were reduced thanks to the support of my entourage. Some improvement was felt by the end of the month.
But in mid-January 2002, on the occasion of a hectic trip, the sternal pain came back and would not let go. It would take five additional months to rediscover arm or body mobilization without pain, without existing treatment other than paracetamol, caution and protection of my chest if necessary.
Then finally, the sternum went SILENT for 16 years, except for its slight deformation that has never changed.
But on April 10, 2018, during a consultation with a hospital rheumatologist who placed me uncomfortably on an examination table, my sternum woke up again when I got down from the table and the pain would not leave me anymore. It had now been 20 years since my radiotherapy, with no relapse of cancer. I was now 69 years old.
The next 5 months would be very difficult, day and night, painful in the movements of the body at the slightest rotation, hindering not only dressing, but also my speech rate and my breathing at the slightest effort. Life then became very painful. I was looking for solutions …
On September 6, 2018, I met Professor Sylvie DELANIAN and discovered the association ARSER. She offered me a treatment for osteoradionecrosis, combining three drugs (PENTOCLO) over 6 months, renewed in March 2019. Within one month, the treatment restored my mobility and enabled me to find a quality of life … moving, breathing, getting dressed … living simply became a pleasure in the silence of the body … and it continues.
I thank Professor Sylvie DELANIAN and the ARSER team who contribute to the research and recognition of these rare and unrecognized radionecrosis pathologies.