If Valeria (pseudonym) is safe,she needs it only for herself: it was her stubbornness that quickly led her to the diagnosis of sarcoma,a rare tumor that results from a malignant change of the cells of the soft tissues of the organism,such as muscles,tissues connective tissue,blood and lymph vessels,nerves,ligaments and adipose tissue. however, the story of Giovanni (even if he is a pseudonym) is very different: he delayed the diagnosis of sarcoma by a year, 12 months if used while doing the right therapies, while welcoming the positive words of the doctors.it could simplify her path.
valeria: the first signs
But let’s proceed in order, starting by telling the story of Valeria, a woman from the south of Italy who is now 42 years old and the mother of two little girls, the second born three years after she was diagnosed with cancer. “I remember the day of the first symptoms as if it were yesterday - says Valeria -. I was driving my new car when I felt a swelling, comparable to a hard ball, touching my left thigh. Instinctively I also touched the right, looking for something similar.But I got nothing. The first thought was that the fame of the new car had caused some kind of inflammation in me: a hazardous but plausible description”,says the woman again. After two days that ball was still there, on her left thigh and started “I went to my family doctor who confirmed my self-diagnosis: the result of overactive inflammation. He didn’t think it was appropriate to order an ultrasound.” But I wanted to see clearly so I went to a private center and had it done anyway. The specialist who reported the ultrasound told me that even though it looked like a benign formation, it was better remove it, as of its location.”
from the diagnosis of hematoma to sarcoma
These words increased Valeria’s anxiety to the point that an hour later she was at another diagnostic center for a second ultrasound. “This time the diagnosis was hematoma – says the woman -. And this diagnosis convinced me even less, so much so that I instantly asked the opinion of my orthopedic friend who recommended an MRI.” And here is the third diagnosis within 48 hours: nodular fasciitis. Despite the clarity of the report, the orthopedist, a friend of Valeria, advised her to go to a center specialized in the treatment of sarcomas in the center of Italy. There is no convincing answer. “After two months I decided,independently,to have surgery for the formation removed which had grown visibly simultaneously occurring,” says the woman. shortly after, with the result of the biopsy taken, the moment of truth came: if Valeria came to a diagnosis in one a few months, so it was only thanks to his obstinacy. “I was lucky to be stubborn: the tumor was already stage three. I had to undergo chemo and then another operation. “
Giovanni
However, Giovanni’s story shows another side of the coin: the consequences of a late diagnosis, not in the deep south, but in the center of Italy. His odyssey began at the end of 2021. “I was on holiday and going down the spiral staircase, holding a piece of luggage, I felt a tear in my left thigh – says the man -. But, at the time, I gave little importance to what happened. it hurts, but I was sure that the pain would go away by itself.” And yet, this was not the case. The leg was becoming more painful, bruised and swollen. Giovanni decided to consult a doctor only in January 2022 : “the swelling was so extensive that I could no longer bend the limb or walk. In the emergency room, with an ultrasound and immediately after a CT scan, they found that there was bleeding and then I was hospitalized. her for treatment with antibiotics which lasted about ten days until the pain went away.” Two more CT scans followed, one just before discharge, another a month later, both with the same diagnosis of hematoma. “A hematoma – says Giovanni - should gradually disappear. Thanks to the antibiotic therapy, the pain was really gone and, convinced that it was a simple hematoma, I arrived at Christmas without too much worry. Then, the pain started again, suddenly. On January 2,2023,I was again in a terrible condition: I could not even put my foot on the ground or bend anymore. It is at this point,in the emergency room of another hospital,that they pronounce the diagnosis: sarcoma.The diagnosis was then confirmed a few days after the biopsy was scheduled and performed at the same hospital.” It had been 15 months as the first symptoms occurred.
The Association is ‘strong’
Valeria and Giovanni have different stories but, despite this, they share certain characteristics. Among these, one is undoubtedly the most critically important: the Sarknos Society. “I have joined the Society so that my experience can be useful to those who have lived or will have the same experience. It was not easy to share my experience with others, or even talk about it during this interview, but I feel compelled to do so.” For Giovanni,the Association has two basic roles: “It is a kind it is self-help – he says - that allows us to find useful tools to support each other. But it is indeed also a way to spread knowledge about this disease and the importance of a correct diagnosis, even among ordinary citizens.”
Both of them live on in their gifts now. “Last October – says Valeria – they told me that my checks could be spaced out for a year”.Giovanni, however, still has an important goal to achieve: “I visit often, every three months. But for now it is good. I’m still dealing with this late diagnosis, that terrible feeling that my prognosis could be compromised after I lost more then a year before access to the right treatment”, says the man quit.
How can patients effectively advocate for themselves during medical consultations?
Interview between Time.news Editor and Dr.Elena Rossi, Sarcoma Specialist
Time.news Editor (TNE): Good morning, Dr. Rossi! thank you for joining us today to discuss sarcoma and the importance of timely diagnosis. We recently published an article highlighting the stories of Valeria and Giovanni. What stood out to you about Valeria’s journey to her diagnosis?
Dr. Elena Rossi (ER): Good morning! Valeria’s story is both inspiring and cautionary. It illustrates the critical role of intuition and persistence in medical diagnosis. Despite initial misdiagnoses, her decision to seek further evaluation ultimately led to the correct diagnosis of sarcoma.
TNE: Absolutely. Valeria faced skepticism from her family doctor, yet she pursued additional tests. How common is it for patients to encounter dismissive attitudes from healthcare providers when they suspect something is wrong?
ER: Sadly, it happens quite often, especially with rare diseases like sarcoma. Many doctors may not recognize the early signs of such tumors, leading to delays in proper treatment. patient advocacy—like Valeria’s—is crucial. It’s crucial for individuals to trust their instincts about their health.
TNE: Giovanni’s case contrasts Valeria’s; he delayed his diagnosis by a year. What are the potential repercussions of such delays in sarcoma cases?
ER: Delaying diagnosis can severely effect outcomes. Sarcomas,if not treated promptly,can metastasize,complicating treatment and reducing survival rates. Early-stage detection often means less aggressive treatment and better chances of recovery.
TNE: Valeria’s trip through multiple diagnoses is quite telling.From your experience, how frequently enough do patients undergo multiple assessments before arriving at the right diagnosis?
ER: It’s not uncommon. Specially in cases of rare tumors like sarcoma, patients can go through several misdiagnoses. This showcases the need for better training in rare conditions for general practitioners. With more awareness, we could potentially decrease the time it takes to get the right diagnosis.
TNE: You mentioned the importance of specialized centers.How critical is it for patients to seek care at facilities that specialize in sarcoma?
ER: It is incredibly important.Specialized centers have the specific knowledge, resources, and experience in dealing with sarcomas that general hospitals may lack. Patients can receive tailored treatment plans and access cutting-edge clinical trials, which can significantly improve their prognosis.
TNE: Lastly, what message would you like to share with readers concerning their health, especially when it comes to persistent symptoms?
ER: Trust your instincts. If something feels off in your body, don’t hesitate to seek a second opinion or further testing, especially if symptoms persist. Education and empowerment about one’s health can make a big difference. Never underestimate the value of being an active participant in your healthcare journey.
TNE: Thank you,Dr.Rossi. Your insights are invaluable, and they highlight the significant role that proactive patients play in their own healthcare narratives.
ER: Thank you for bringing attention to this important topic!