PAVIA – Suffering from adenoid cystic carcinoma of the vulva, Elena was treated at the National Center for Oncological Hadrontherapy in Pavia with beams of carbon ions and protons, a method which allowed her to avoid the heavy consequences of a destructive surgery. Just over a year after the end of the treatments, there is no trace of the disease and the woman has regained control of her life, including her sexual life, a topic that is still taboo in terms of women’s health.
It is essential, especially for rare tumors, to refer to reference centers with a multidisciplinary approach and which offer all the most advanced therapeutic options that are “respectful” of the general well-being of patients.
HISTORY
The story emerges on the occasion of National Women’s Health Day, aimed at promoting information, prevention and care for women.
Born in Romania but resident in Italy for more than 17 years, married and mother of two children, Elena, whose name refers to the Greek myth emblem of female beauty, in 2021 received the diagnosis of a tumor that risks taking away her very life forever. her being a woman: an adenoid cystic carcinoma of the vulva, a “rare among rare” tumor, resistant to traditional radiotherapy and chemotherapy. The only prospect seems to be a demolitive surgery, with removal of the vulva, part of the bladder, urethra, intestine and vagina. Given her young age and the impact of this type of surgery, in 2022 the team that follows Elena asks the National Center for Oncological Hadrontherapy in Pavia for an opinion. Here they offer you an alternative: “mixed beam” hadrontherapy treatment, which uses both carbon ions and protons, heavy particles generated by a complex accelerator and capable of hitting the tumor lesion with sub-millimetric precision, preserving the surrounding healthy tissues. An approach used only in 6 centers in the world and, in Italy, exclusively at the CNAO.
Today, just over a year after treatment, the patient previously suffering from disabling pelvic floor pain no longer has these symptoms and the disease is in both clinical and radiological response to treatment. His experience demonstrates how progress in clinical research and multi/inter-disciplinary collaboration can make a difference to the psychophysical well-being of cancer patients, especially, as in this case, those affected by such rare tumors and which involve such an important area for femininity.
“When I received the cancer diagnosis – says Elena – I was 43 years old. I started calling him my ‘friend/enemy’: friend because he had remained inside me relatively ‘good and quiet’, he had not spread to other parts; enemy because, if he had activated himself, he could have destroyed me in a few months. I believe that at the CNAO they performed a small miracle for me: I thank the doctors, nurses and all the technicians who accompanied me with profound humanity on a long journey, with an always uphill road, taking charge of the quality of my life beyond the size of the disease. When I look back, it feels like I’ve climbed a mountain.”
“Adenoid cystic carcinomas are rare neoplasms that usually develop in the head and neck area and more rarely in other locations,” explains Dr. Amelia Barcellini, radiation oncologist at the CNAO, who followed Elena. “Among the rarest are those of the vulva, where adenoid cystic carcinomas represent less than 1% of all vulvar neoplastic histologies and are characterized by their radio and chemoresistance. In Elena’s case, the tumor had grown around the urethra and along the course of the pudendal nerve, causing severe, uncontrolled pain that 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 beams of carbon ions on the tumor area to radiosensitize it; the second, with protons over a larger area, which included the areas at high risk of recurrence”.
Always with a view to inter- and multidisciplinary management, in Pavia the patient was also evaluated by Professor 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 CNAO clinicians have set up a pelvic floor rehabilitation program.
“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. But Elena will have to undergo regular and close oncological-radiotherapy checks given the short time that has elapsed since the treatment.”
ILLNESS AND SEXUALITY RECONQUERED
Given the resolution of that disabling pain, Elena was also able to regain control of her intimate life, an important result considering that over 6 out of 10 women, after a neoplasm, experience some form of sexual dysfunction.
One of the aspects that is still talked about too little today, in terms of women’s health, is precisely the heavy impact that tumors and medical treatments can have on the intimate sphere of patients, on the perception of their femininity and on couples’ relationships. But even in the most difficult moments of her journey, on this front Elena was able to count on a hero.
“During this adventure – she recalls – my husband was not only a companion, but also a friend. He never made me lack his psychological and physical support. When I was bedridden, he took care of me and our children, keeping the family together, he worked and also took care of the housework. He fought alongside me, never giving up. When the therapies precluded us from having intimate relationships, he never made me weigh the situation 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 first we were both a little scared but we faced it together and, little by little, everything went well. I believe I am proof of the fact that, even after gynecological cancer, you can go back to having an active sexual life. But it takes a lot of love and a lot of patience. 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”, underlines Professor Ester Orlandi, Director of the Clinical Department of the CNAO and Researcher of the Department of Clinical-surgical, Diagnostic and Pediatric Sciences at the ‘The University of Pavia. “In the case of rare neoplasms, such as the one Elena was suffering from, 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. Like hadrontherapy, which in adenoid cystic carcinomas, both of the head and neck area and of the pelvis, 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, CNAO joined EURACAN two years ago, the European network on rare tumors which brings together 75 highly specialized oncology centers present in 24 countries”.
Source CNAO press release
Tags: PAVIA National Womens Health Day Elenas story illness treatment CNAO reconquest life sexuality
