My husband’s rare cancer encouraged us to support related research

4.11.2019
Rare diseases such as sarcoma require further research and medical education. Through the University of Helsinki Fund for Medicine, proceeds of the Laakso family’s cycling campaign can be allocated specifically to research focused on sarcoma.

In 2009, Annika Laakso’s husband Ville started experiencing strange symptoms, such as headaches and visual disturbances, with part of his left half-field of vision missing.

The couple’s younger, eight-month-old son could be crawling on the floor unseen by Ville. Walking alongside the Aura River, he only made out one half of an oncoming couple.

Ville had visited a doctor more than once about his symptoms. His vision had been examined and he had been prescribed glasses. But the symptoms persisted.

Next, he started experiencing motor disturbances. In November, Ville was unable to fold Christmas pastries despite having baked them all his life. Eventually, he could do nothing but lie on his side.

In early December, Annika and Ville finally went to see a private-sector neurologist.

When the MRI image arrived a couple of days later, the cause was finally identified: there was a tumour the size of an egg in the back of Ville’s head.

– The cerebral midline had already shifted 1.5 centimetres due to the amount of swelling and the heavily disturbed cerebrospinal fluid cycle. In a few days, Ville would probably have been dead, Annika Laakso says.

Sarcoma – a mystery to most

Ville Laakso was operated on. The tumour was found to be a mesenchymal chondrosarcoma, or a type of cartilage cancer.

This is a very rare cancer type. According to Annika, roughly 20 cases of Ville’s cancer type are diagnosed annually in the world.

All sarcomas are rare, and many people are not even aware that they are a type of cancer. Sarcoma is a generic term for a range of cancers of the supportive tissues. As well as cartilage, supportive tissues include bones, connective tissue, blood vessels, fatty tissue and muscle tissue.

– Most people probably haven’t even heard the word ‘sarcoma’ before being diagnosed with it, notes Annika.

Rare diseases require specialist expertise from physicians, but such situations can also be difficult for patients.

– The patient themselves have to keep up with what is being done and what is happening. That’s tough.

For the Laakso family, the circumstances were alleviated by the fact that Annika is a biochemist and a doctoral graduate from the Faculty of Medicine. She also received support and help from an international Facebook group for sarcoma patients where experiences and research-based knowledge were shared.

After several treatment attempts, Ville’s tumour was found to have spread to his pelvis in 2015. It was inoperable.

At the end of 2016 responsibility for his care was transferred to the Helsinki University Hospital.

– The University Hospital has the best expertise, as they have the most patients. Routine saves lives. It makes the surprising unsurprising, Annika says.

Proceeds to support researcher networking

The idea for raising funds for sarcoma research was Ville’s.

– Last year in May, Ville told me he had been thinking for a long time about organising a cycling campaign. He felt it was the last summer he would be up to it, Annika says.

– And he was right.

The #cycle4sarcoma campaign was launched in the week preceding Midsummer Day in 2018, with the aim to raise funds for sarcoma research. Known as an avid cyclist, Ville toured three cities with university hospitals in southern Finland on his bike, and the campaign message spread on Facebook and Instagram.

Ville and Annika wanted to allocate the campaign proceeds to the University of Helsinki Fund for Medicine, since through the fund the proceeds could be targeted specifically at research on sarcoma.

Through their efforts, they wanted to spread the word about sarcoma. Annika also felt that even though Ville eventually started receiving the appropriate treatment, Finnish sarcoma patients deserved better expertise. In the case of rare diseases such as sarcoma, expertise hangs by the thinnest of threads. If something happens to the only physician specialised in the disease or if they retire, knowledge is in danger of entirely disappearing.

The #cycle4sarcoma donation is used to award a travel grant to a junior researcher specialising in sarcoma, for example, to attend an international cancer conference.

– At these events, you gain knowledge and contacts with international top-level researchers. Later, it will be easier to consult with them, which directly benefits patients.

Some meaning in a serious disease

Ville Laakso succumbed to sarcoma in July 2019. Remembrances dedicated to him were allocated to the fund.

Annika wishes to continue the work set in motion with Ville. The sarcoma fundraising will carry on, with the aim of organising a #cycle4sarcoma event every year to spread awareness.

Running the campaign and donating funds made what they lived through feel like it has some meaning.

– To Ville personally, it was enormously important, Annika says.

– Our children are now 10 and 14. I’ve told them that their father has left an indelible mark. You may not yet understand it, but at some point you will.

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