“When I look back, it feels like I've climbed a mountain”. Elena, struck at the age of just over 40 by “a rare among rare tumors” on her vulva, thus summarizes the battle she fought and won thanks to what she defines as “a small miracle”. A 'mixed beam' treatment, based on carbon ions and protons, which she was able to undergo at the National Center for Oncology Hadrontherapy (Cnao) in Pavia, avoiding the destructive operation and regaining control of her life, including her sexual life.
“A topic that is still taboo” when it comes to female well-being, underline the experts of the Lombardy structure, on the occasion of National Women's Health Day. If you consider that “over 6 out of 10 women experience some form of sexual dysfunction after a cancer”, Elena's story sends a precious message of hope.
Born in Romania, but resident in Italy for more than 17 years, Elena is married and mother of two children. In 2021 – they say from Cnao – she received the diagnosis of adenoid cystic carcinoma of the vulva, an ultra-rare cancer resistant to traditional radiotherapy and chemotherapy, which among other things causes disabling pain in the pelvic area. The only prospect seems to be the removal of the vulva, part of the bladder, the urethra, the intestine and the vagina, but in 2022 the team following the patient asks for an opinion from the Pavia hadrontherapy center where a 'plan B': target the tumor with heavy particles generated by an accelerator, capable of destroying the tumor lesion with sub-millimeter precision while saving the surrounding healthy tissues. An approach used in only 6 centers in the world, and in Italy exclusively at the Cnao. “Today, just over a year after treatment – the doctors report – Elena no longer has symptoms and the disease is in both clinical and radiological response“.
“Adenoid cystic carcinomas are rare neoplasms that usually develop in the head and neck area and more rarely in other locations – explains Amelia Barcellini, radiation oncologist at the Cnao who followed Elena – Among the rarest are those of the vulva, where the carcinomas Cystic adenoids represent less than 1% of all vulvar neoplastic histologies and are characterized by their radius and chemoresistance. In Elena's case, the neoplasm had grown around the urethra and along the course of the pudendal nerve, causing severe, uncontrolled pain. which affected her quality of life. After a multidisciplinary discussion of the case, as always happens in oncology and which is crucial in the case of rare neoplasms, the patient underwent a hadrontherapy treatment (radiotherapy with hadrons) at radical doses consisting of two phases: the first with carbon ion beams on the tumor area to radiosensitize it; the second with protons on a larger area, which included the areas at high risk of recurrence”.
Always with a view to inter- and multidisciplinary management – specifies a note – in Pavia the patient was also evaluated by Laura Locati of the Irccs Ics Maugeri for an overall oncological classification and by the Urogynecology team of the Irccs Policlinico San Matteo, where in agreement with the Cnao clinicians, a pelvic floor rehabilitation program was set up. “Already a few months after the hadrontherapy treatment – continues Barcellini – the painful symptoms had resolved and this clinical benefit was also confirmed at subsequent visits. The disease is currently under clinical-radiological control, the functionality of the pelvic floor is preserved and there has been a saving in hormonal function. Elena will have to undergo regular and close oncological-radiotherapy checks given the short time that has elapsed since the treatment”, but the worst seems to be over.
“When I received the cancer diagnosis I was 43 years old,” Elena recalls. Cancer, he says, “I started calling it my 'friend/enemy': friend because it had remained inside me relatively 'good and quiet', it had not spread to other parts; enemy because, if it had become active, it could have destroy me in a few months.” The woman thanks “the doctors, nurses and all the technicians who accompanied me with profound humanity on a long, always uphill journey, taking charge of the quality of my life beyond the dimension of the disease”. But Elena also speaks of a hero husband, who “during this adventure was not only a companion, but also a friend. He never let me lack his psychological and physical support. When I was confined to bed, he took care of me and our children, keeping the family together, he worked and also took care of the household chores. He fought alongside me, without ever giving up.”
“When the therapies precluded us from having intimate relationships – continues Elena – it never made the situation weigh on me in any way. And when it was possible to rediscover our intimate sphere, we did it very delicately, gradually, following all the suggestions that had been given to us at the Cnao and at San Matteo. At the beginning we were both a little scared, but we faced it together and, little by little, everything went well of the fact that even after gynecological cancer it is possible to return to having an active sexual life. Even today, with his gaze, my husband manages to make me feel beautiful.”
“Being able to restore an adequate quality of life to patients is an essential objective of oncology today“, says Ester Orlandi, director of the Clinical Department of the Cnao and researcher of the Department of Clinical-Surgical, Diagnostic and Pediatric Sciences at the University of Pavia.
“In the case of rare neoplasms like the one Elena was suffering from – he points out – it becomes essential to refer patients to reference centers where it is possible to take advantage of a multidisciplinary approach and all the most innovative therapeutic options are covered. Such as hadrontherapy, which in adenoid cystic carcinomas, both of the head and neck area and of the pelvis, it has proven to be a valid alternative to surgery, especially in young women”.
“Precisely with the aim of promoting patient access to the most advanced treatments – concludes Orlandi – Cnao joined Euracan 2 years ago, the European network on rare tumors which brings together 75 highly specialized oncology centers present in 24 countries”.
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