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.
The story of my illness and its evolution is not only medical; it has also nourished the professional and personal aspects of my life for 50 years, with a desire to continue living by rationalizing my medical problems.
It was spring 1971, I was 33 years old and gave birth to 4 children, my days were well filled with my research activity at INSERM (National Institute of Health and Medical Research). I am then diagnosed with a tumor in the left breast which, after mammography and biopsy, turns out to be cancerous. The word cancer at the time was “taboo” and they sometimes refused to shake my hand, the doctors who treated me never said that terrible word, we had at that time, hypocritical conversations that generated “anxiety”.
After three months of preoperative radiotherapy of the breast and adjacent ganglionic areas, and radiotherapy of the ovaries to permanently stop the menstrual cycles, I underwent heavy surgery (removal of the left breast with axillary lymph node dissection) followed by new sessions of postoperative radiotherapy. No medical treatment will be prescribed for me, it was not the time. A delayed mobilization of the arm and massages to control the lymphatic edema will be my only treatments.
Although right handed, a small deficit of the fingers of the left hand at that time was a challenge for me because I played the piano; I felt that the left hand hardly followed the pace… my professional and family activities also contributed to the abandonment of the piano.
The years passed with 2-3 inflammatory episodes and limited lymphatic edema of the arm and forearm controlled with antibiotics. The wearing of long-sleeved clothes (a bit restrictive in summer), avoiding cut-stings by gardening with the left arm, will be my essential precaution. Finished, of course, the beach and the swimsuit, especially because of the comments of summer visitors. I discovered hiking in the mountains in summer, with backpack, no problem for my left arm; these steps at altitude did not pose any difficulty. Professionally, from 1987, I changed direction and for 25 years, I carried out many medical humanitarian missions on the ground with a well-known international association.
In 2008, at the age of 70, thirty-seven years later, I had more difficulties with the left hand when using the computer; I consulted several doctors but no answer, only compassion. I was told that it was an after effect of radiation therapy and that there was nothing to do. After an EMG (electromyogram) evaluating the electrical current of the nerves of each arm, a carpal tunnel operation will be offered to me, the operation on the right side will be a great success but no result on the left.
At the end of 2011, I had a discomfort with loss of consciousness (AIT or Transient Ischemic Accident), aphasia with paralysis of the left side of the tongue for a short period. Transported by firefighters to Bichat hospital, emergency exams will be made: brain MRI – cardiac assessment. If moderate hypertension was found, nothing at the time caught the attention of doctors and therefore no accurate diagnosis. My left arm was losing strength and the pain was managed with paracetamol.
It was then that, quite by chance, I was told about Dr. DELANIAN at the Saint-Louis Hospital, whom I would see for a consultation in June 2012. A randomized “PENTOCLO” therapeutic protocol with a draw had been recently organized by Dr. DELANIAN who suggested that I participate. I gave my agreement quickly because I finally found a doctor who took into account all my neurological symptoms which were accentuated; a large lymphedema developed despite the daily wearing of an elastic compression sleeve, with intermittent tingling (paresthesia) of fingers. An MRI of the brachial plexus and various examinations confirmed a radially induced brachial plexitis, which is a nerve condition related to the dose of radiotherapy in 1971 in the supraclavicular trough (above the breast), nerve degeneration that has evolved in steps, slowly but gradually.
I followed the randomized protocol “PENTOCLO” for 18 months (from June 2012 to December 2013) with regular monitoring, with no side effects. The double-blind therapeutic protocol included Pentoxifylline, Tocopherol, and Clodronate as a daily dose, and I later learned that I had received the “real” treatment, without measuring the benefit. I was stable, but had no way of comparing whether the inevitable progression of plexitis was slower with treatment, each patient being unique in their reactions to the disease and treatment.
In 2014, despite maintaining a lighter treatment, the loss of sensitivity and motor skills of the hand was accentuated, and I had to put my arm in a sling to relieve the weight during walking. In 2015, lymphedema had become so important with a sore and very heavy arm that I contacted Cognacq-Jay Hospital, a reference center for lymphedema. I was offered a 15-day hospitalization to mechanically reduce lymphedema with night-time self-bandaging and wearing a Mobiderm sleeve. The result will be useful therefore satisfactory at least some time.
At the end of 2015-2016, Dr. Delanian suggested a more advanced vascular exploration (Doppler – angioscanner – angio-MRI) which shows the existence of evolutionary arterial and venous vascular disorders post-radic with a stenosis (narrowing) at axillary-sub-clavicle, which increased the edema of the arm while the hand became cold. Phlebography and angioplasty followed by the placement of a venous stent were proposed and then performed in good conditions.
However, the following night, I suffered a brief cardiorespiratory stop, necessitating a transfer to intensive care … the heart also had received a lot of rays… The stent will be effective 1 month but will definitely stop.
In 2017, I again have a heart attack, am transported to the emergency room of the hospital Saint-Louis, I am released in the evening without anything abnormal outside a very low transient blood pressure. The subsequent cardiological assessment will finally show something… in echocardiography, a small pedicled left intra-ventricular mass (like a bell stick in the cardiac ventricle) evoking a myxoma (benign tumor); and I am on anticoagulation. Cardiac MRI at Saint-Joseph Hospital will confirm left intraventricular myxoma with emboligenic risk, new sequelae of so-called exceptional radiotherapy…
Thus, in 2019, I am aware that almost 50 years after the discovery of breast cancer, I am there, “lucky”, despite the loss of the use of my hand and my left wrist, compensated by a right arm ensuring double work! In addition with a specific support that allowed me to limit many pitfalls.
If I remain medically realistic, my mind is always alert to the world. With my 81 years, I keep a satisfactory autonomy and I have confidence in the progress of clinical research as in basic research to understand the mechanisms of the disease. Budgets could allow continuation of the research work initiated by Dr. Delanian and her team, whom I thank for the work done and the knowledge put at the service of patients.
The purpose of my testimony is to help people who, like me, have been operated on for breast cancer, to make the right decisions, and to be proactive about the care that is offered to them, always with hope and confidence in medicine that is constantly progressing.
March 2019 Marie-Claire G.