Dear Members of ARSER,
I testified during the French TV program “Allo Docteurs” on Monday May 23, 2016 on France 5, as a patient with latent after-effects of ENT (Ear Nose Throat) radiotherapy.
The office of our Association considered it useful that I set out, in an editorial, my journey that led me to a healing and an acceptable life. Therefore, 48 years old, I had ENT cancer in 1994. Unusual mouth odors had appeared: I consulted my usual dentist who, after examination, confirmed to me that the cause was not dental. A discomfort with swallowing was also present; my ear doctor noted an anomaly at the base of the tongue. After a biopsy, he told me that I had a cancerous tumor (an invasive undifferentiated ulcerating carcinoma).
So I was directed to a specialist ENT unit at Bichat Hospital (Dr Joël Depondt). At the end of this consultation, a surgical operation on the tongue seemed obvious despite the inevitable aesthetic consequences and the subsequent difficulties for speech and food. Needless to say, I was SHOCKED.
During another appointment with Dr Depondt, he informed me that at a meeting between doctors, including Dr Sylvie Delanian Oncologist Radiotherapist, he was offered treatment with EXCLUSIVE RADIOTHERAPY with Cobalt (at the dose of 45Gy) associated with CHEMOTHERAPY (Carboplatin) followed by CURITHERAPY with Iridium at a dose of 30 Gy (Dr Delanian Hôpital St-Louis).
Six weeks after this conservative treatment, the tumor had completely disappeared.
I HAVE ALWAYS BEEN UPBEAT, knowing that I am in the hands of a competent and attentive team. During my radiotherapy and chemotherapy treatment, I NEVER STOPPED WORKING, in order to live a normal life like everyone else. I was only forced to stop for three weeks after brachytherapy, due to significant weight loss and fatigue.
I experienced reactions during radiotherapy: the oral mucus membranes were red and tender. Then immediate transitory reactions (in the weeks that followed) just after treatment:
– Dry mouth (hyposalivation) requiring me to drink often
– Total loss of taste associated with a black tongue (yeast infection), preventing me from distinguishing between foods, followed by significant weight loss
– Dry cheek skin
– A double chin with swelling (“jabot” sub-chin)
– Tongue pains linked to an ulceration in the brachytherapy area.
Then these first reactions went away, and I only suffered from neck and ear pain from time to time. I still lost my job … So I decided to start my own business, the disease had hardened me …
When I finally thought all was well, 8 years later, I suffered from severe dental pain for which my dentist extracted the right wisdom tooth. But I did not heal; there was local pain and then pain in the dental nerve, despite having the dental extractions before radiotherapy treatment and the fluorinated aligners afterwards.
A mandibular OSTEORADIONECROSIS (hole in the bone) then developed with severe mandibular pain associated with anesthesia of the chin and tingling on the path of the lower dental nerve, causing me to bite my tongue. This severe pain was treated with morphine for many months while I was visiting the Pain Center at Bichât Hospital. Antibiotic treatments followed one another but only brought partial relief for a few weeks.
After 6 months of evolution, Dr Delanian offered me the possibility of benefiting from a treatment that she had developed for this (it did not yet have a name, but since then he has been called “PENTOCLO”). I took this treatment for 3 years, controlled by regular dental checkups. Little by little the pain diminished, the hole in the jawbone closed and infections became more rare… healing on the surface first in the mouth, (a bone sequestration or piece of “rotten” bone) 1 cm came out on its own just before; then healing in depth, allowing reduction and stopping of tingling in the chin in 3 years. I admit to having resumed smoking in certain difficult moments, which did not help the situation… But I was happy to note that I could definitively stop morphine after a few months, then that the level of bone went up on the radios and the mandibular scanner. We then stopped everything in 2007!
This was without counting on a new event … I indeed suffered then from my arteries of the neck, the left carotid. I was abruptly afflicted with a brief neurological case of vision disturbance, dizziness and speech impairment from an ischemic stroke. The assessment showed that I had a tight stenosis of the carotid artery at 90%, which we could also link to radiotherapy without attributing all the fault to it since the tobacco had passed there …
Carotid arterial stenosis was treated via an ENDARTERECTOMY and BRIDGE. During this intervention, the surgeon had many difficulties (which he overcame) partly due to the cervical fibrosis of the radiotherapy. I was again able to benefit from the “PENTOCLO” 6 months post-operatively to help neurological recovery and speech returned to 95% fluency.
Thus, my medical journey over 22 years was complicated and painful, but it resulted in a satisfactory cure, not only of cancer but of the after-effects associated with the treatment of cancer. I would like to thank the doctors who have treated and supported me for these long years, and who still accompany me, in particular Dr Joël Depondt and Dr Sylvie Delanian.
Jean-Michel R. – November 2016