Cum Cura: Rare but not devoid of care

“I had been in pain for months before I saw a doctor—I thought I’d broken a bone in my knee,” Lina recalls. “When I was diagnosed with osteosarcoma, my world stopped. I was 36, and my children were just 11 and 8. My first question was: will I survive?”

Sarcoma, a malignant bone tumor, has a 50% survival rate. “You need to catch it in time, get the right diagnosis, and hope the treatment works. I was among the lucky half.”

‘Surviving is the goal, obviously, but managing the aftermath is a constant struggle.’

Lina underwent chemotherapy and had the diseased bone removed, followed by a knee replacement. “I had to learn to walk again,” she says. “The surgery involved removing muscles, which caused permanent mobility issues. Chemotherapy left her with hearing loss that a hearing aid cannot fully address, making her job more difficult and personal life more isolating.”

“Some patients are left infertile due to chemotherapy. Surviving is the goal, but managing the aftermath is a constant struggle,” she adds.

Structured meetings

“During school meetings, I take extensive notes because I have to concentrate twice as hard. We’ve introduced structured meetings where people don’t talk over each other—which benefits everyone, by the way,” she laughs. “But even then, I sometimes have to ask them to speak one at a time.”

“When I’m in pain, I limp. My students are used to that now. I have good days and bad days. I can still do everything but in moderation—I can’t stand, walk, or move too much.”

When Lina was first diagnosed 18 years ago, she had never heard of sarcoma and there was little information available. “Luckily, my GP referred me to the right specialists. Awareness of sarcomas has grown since then, but it’s a very complex condition with over 100 types.”

“Bone sarcomas are easier to identify, but soft tissue sarcomas can resemble benign lipomas. Doctors are not always able to identify them correctly. If you have surgery for a lipoma, but you have a sarcoma in fact, the chance that the tumor will spread increases.”

Rare, but not alone

Five years ago, Lina founded Cum Cura, a patient association whose name means “with care” in Latin.

‘Sarcomas are rare, so you rarely meet other patients.’

“Sarcomas are rare, so you rarely meet other patients. My first conversation with someone in the same situation was such a relief. That’s the greatest value of Cum Cura—showing people they’re not alone.”

Cum Cura also aims to provide accurate information and raise awareness among patients and healthcare professionals. “You find a lot of misinformation online. We direct patients and their families to reliable resources. GPs, in particular, need to know the difference between a lipoma and a sarcoma. Quick and accurate diagnosis is crucial.”

The organization also advocates for better policies. “For example, multidisciplinary consultations for giant cell and desmoid tumors are no longer reimbursed, even though these tumors require specialized care. We think this is wrong. These locally aggressive and benign tumors also require the right treatment.”

Reimbursement for long-term physiotherapy

“Reimbursement for long-term physiotherapy has become incredibly complex,” Lina explains. “Patients like us often require rehabilitation for a long period, but long-term physiotherapy is usually no longer reimbursed.”

“After I got my prosthetic knee, I was able to go to physiotherapy three times a week for two years. Thanks to this physiotherapy, today I can walk around, I can work, I am part of society, and I can contribute. Under the current reimbursement rules, none of that would have been possible.”

‘Thanks to my physiotherapist visits at the time, I can now work and contribute to society. With today’s reimbursement mechanism, none of that would have been possible.’

“If you have prosthesis, you can only bend that limb to a certain number of degrees. In some cases, this is very limited because their muscles are stiff. There are aids, like special cycling devices for stiff joints, which could significantly improve quality of life. Reimbursing these would make a huge difference.”

Lina urges both general practitioners and specialists to introduce their sarcoma, desmoid and giant cell patients to Cum Cura. “Orthopedic surgeons know us, but soft tissue surgeons and GPs are often unaware of our existence. That’s a problem because GPs are usually the first point of contact for patients,” says Lina.

“Reaching primary healthcare providers is incredibly difficult. But it is important: it is the general practitioners who make the first diagnosis and refer patients to a specialist.”

Putting people’s mind at rest

“Doctors increasingly recognize the value of patient associations. Sarcoma patients have medical but also other needs because of the limitations we face. Through Cum Cura, we support patients from the start of their treatment and help alleviate their concerns.”

“I have to add that more and more physicians and hospitals are putting their patients in touch with us, for which we are very grateful. It is the only way for us to reach as many people with these rare diseases as possible.”

Lina and the five other Cum Cura volunteers not only provide patients with an informative website, they also have a private Facebook group for every condition (sarcoma , desmoid and giant cell), a peer support day, a buddy program and, in the future, fundraising for research.

Lina also wants to explicitly mention the Foundation against Cancer. “Without them we wouldn’t be here.”