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.
Radio-induced plexopathy and hidden vascular pathology
In 2003, I underwent surgery for right breast cancer, then was treated with chemotherapy and radiotherapy, in particular in the axillary (under the arm) and supraclavicular (above the clavicle) lymph node level and was very happy to get rid of the cancer!
Fourteen years later, in 2017, I started to have tingling in the little and ring fingers of the right hand with the beginning of numbness. I also suffered on the right side, for a few years (2008), migraines, pain in the right eye and ear pulsatile, and dizziness. No doctors consulted for this over time could find anything special … The MRI of the brain was normal; to the point of suggesting that, I imagined, cancer concerns.
Following the extended custody of my grandson for two weeks, a beautiful 9 month old baby claiming my arms all day long, the condition of my arm worsened by stretching my nerves. After consultation with a neurologist, the diagnosis was made: latent after-effects of radiotherapy at the level of the plexus and nerves of the right arm. This doctor informed me that there was nothing to do and that it would get worse at low or high speed, we would see! A sort of condemnation without appeal.
It was then that I realized that I did not want to stop there, and I started researching the Internet. I found an article by Pr Sylvie DELANIAN, which answered my questions on plexitis, finally! I found myself dancing with joy in my living room. Did I find the rare pearl?
The first dedicated consultation meeting was a revelation. Finally a doctor who listens and understands with, without a doubt, incredible skills. I thank Professor Sylvie DELANIAN for existing. She confirmed the diagnosis of latent radiotherapy after-effects, radio-induced plexopathy of the right brachial plexus, and was surprised by the non-pursuit of investigations. I benefited straightaway from anti-inflammatory and thinning treatment for a month, the time to finish the explorations, and already the wrist pain was gone.
MRI imaging of the nervous plexus associated with angiographic sequences then made it possible to search for and discover a 95% stenosis (tight narrowing) of the right pre-vertebral subclavian artery in connection with radiotherapy at the base of the neck! An exploration by arteriography followed by placement of a stent in the almost blocked right subclavian artery was carried out as a matter of urgency. This gesture saved my life, because there was a very significant threat of a cerebrovascular accident (stroke) and loss of using my arm. Since then, as if by magic, the problems of the head on the right side disappeared after 10 years of embarrassment: my brain and my arm are well vascularized.
Following that, I was prescribed the anti-fibrosis protocol “PENTOCLO” to treat plexitis. These drugs tire me a little but that is nothing compared to the benefit and the hope that I put in this treatment. I have to listen to my arm and not overdo it, such as doing two hours of ironing or intensive cleaning. I learn to spare my arm and my hand every day, but use them so as not to weaken them. As soon as pain appears in the hand and as I have less and less grip strength, I find objects that help me, especially in my kitchen: a special hook to effortlessly open cans with a ring, an automatic jar opener!
I learned that one disease can hide another, complications in the volume of radiotherapy can be multiple, some of immediate threat, others slow and chronic. I also learned that these consequences are not just a fatality. Although I am only at the beginning of my treatment, I remain POSITIVE because I have total confidence in Pr Sylvie DELANIAN.