With effort, but pride and a single crutch, Laura Boldrini, former president of the Chamber and deputy of the Democratic Party, has just recently returned to the classroom after ‘having dealt with’ her femur tumor, a chondrosarcoma, a term unknown to her before the diagnosis that opened up a world of new scientific terms , but especially doctors, nurses, health professionals and other patients like you. On the occasion of the international month of sarcomas and the presentation of the campaign by Trust Paola Gonzato – Rete Sarcoma Onlus, Laura Boldrini tells Salute.eu what stage of the disease she is in, what she has learned and what plans she has for her future.
How did you discover the tumor?
Completely random. I had no symptoms of any kind apart from a pain in my right leg, but I thought it was an inflammation of the sciatic nerve of which among other things I also complained to my friends among whom there is an osteopath. It was she who pushed me to deepen by going to an orthopedist who suggested that I do an MRI. From this exam I got the diagnosis: a rare tumor in the femur that who knows how long it had been there, dormant.
What was your first reaction?
The radiologist showed me the MRI against the light showing me a spot all over the femur. I immediately realized that it was certainly not inflammation of the sciatic nerve and I started asking questions on tiptoe, feeling a mix of emotions: at first the refusal to take note (I even thought it could be someone else’s resonance) , then the dismay of not having points of reference, of not knowing anything about it. I felt lost: I was not able to see a road and this made me nervous especially because I realized that the most important thing was not to waste time.
From diagnosis in mid-March to surgery on April 10: a race for salvation …
I went to a specialist, did the biopsy and confirmed that it was chondrosarcoma. So I decided to have an operation at the Rizzoli Institute in Bologna where they specialize in these types of tumors. They cut 23 centimeters of my right femur and put a titanium prosthesis in its place, with a stocking. Everything that could create risks was eliminated and afterwards a histological examination was made from which it was seen that fortunately there are no infiltrations.
So, you don’t have to have chemotherapy?
No, but I have to do a long rehabilitation because I have to relearn how to govern the leg, the brain must acquire this ability and it is tiring. Now I can climb the stairs one after the other without crutches and this was a huge win for me. I am limping a lot because I have a shorter leg and a longer one following the surgery. With the insole it was possible to correct enough, but I still need a crutch. I will continue to do physiotherapy twice a week trying to recover as much as possible. I don’t know how long it will have to last because nobody tells you how long it will take and if it will be possible to recover all the functionality. A lot also depends on the drive you have, on the motivation.
How are you feeling at the moment? Healed or still ‘work in progress’?
This is a disease in which you live between ups and downs: one day you think you will make it, but there are others where the optimism vanishes but we have a duty to give it our all and believe it to the end.
What was the moment you were most afraid of?
When the diagnosis arrived, I felt great dismay and disbelief. The fear came the moment I entered the operating room because there you realize that your life is in the hands of the medical team, you hope that they will save your life, you think about who loves you, who is not there more, you pray and then sedation arrives and the first question you try to ask with terror is: “Doctor, how did it go?”.
Italy at the forefront of the fight against sarcomas
by LETIZIA GABAGLIO
What was it like living with the disease during Covid and having to do without family visits?
Actually, it wasn’t that bad for me. There are those who have lived this confinement with great suffering and there are those like me who have found it suited to their personality because you have to look for the strengths in yourself, give all your energy to the bottom and you can only do it if you concentrate. It is a phase during which you have to rely on someone else with blind trust and to make this step you need to be focused. From my point of view, it was an advantage otherwise I would have also had to worry about consoling others who were close to me anyway.
Just yesterday she returned to the Chamber where she was greeted by a long applause from all her colleagues: what will change in her way of approaching work too?
In fact, even though I was not physically in the courtroom, I always continued to work by presenting parliamentary questions and filing, among other things, a new law on custody of minors. I think it is essential to focus on what you have always done, on interests and passions to find your balance and not to pull yourself out of life. I only went to the classroom this week because I felt physically ready: they put cushions on me because the seat is very low, but it was nice to come back.
Rare cancers, the national network is born to guarantee better treatments
What would you say to women who, just as happened to you, let themselves be overwhelmed by work, take care of their families and aging parents but then maybe forget about themselves?
Not to always be the ‘tank’, to listen to this carcass which is our body. We cannot neglect it and go on with tachipirina shots to silence the symptoms that the body signals. I made the mistake of never listening to my body and in fact I always operated on urgently, but now I have learned my lesson and for me listening to myself has become a priority.
Giulia: “I’ll tell you about my life paused by sarcoma”
by IRMA D’ARIA
Among the various unresolved needs of patients reported today by the Sarcoma Onlus Network is the National Rare Cancer Network which has not yet been activated. What can be done about it?
As part of my competences, I want to be useful and to ensure that it is activated as soon as possible by taking an example from the European Network on Rare Cancers which works well. Together with the association we will try to understand which are the knots to be solved and we will reach the goal. But I would like the experience of the pandemic to make everyone understand the importance of public health, of how much it is necessary to increase investment in research. In short, the pandemic cannot pass without giving us commitments.
What will your holidays be like?
I love to take mountain walks in the Sibillini Mountains, but this year I will have to postpone as well as my other passion which is to snorkel in the sea of Greece. Mine will be a summer for myself in which the priority is to accelerate rehabilitation by taking advantage of the month of August with exercises in the water to improve motor skills. Then I’m struggling with a book that I have to close shortly to devote myself to another publishing project. I have to get my strength back and there is no better way to do it than to dedicate ourselves to projects that we are passionate about.
What are sarcomas
Sarcomas, tumors can arise in any organ, at any age, represent 1% of all cancers and in Italy, as each of their main subgroups affects less than 6 out of 100,000 people every year. These are rare and potentially aggressive cancers. There are many obstacles that patients encounter on their treatment path due to the rarity and great heterogeneity of these tumors, of which about 100 different types have been identified.
The awareness campaign
In order not to leave patients and families alone and build a “community network” around them, in July, the international month of sarcoma, the Trust Paola Gonzato – Sarcoma Onlus Network launches the 2021 information and awareness campaign “Let’s make a network against sarcomas: the importance of the network, the value of research and the role of institutions”, also carried out with great support from the world of sport which has recently lost one of its greatest champions, Filippo Mondelli, precisely because of an osteosarcoma. The support of the Italian Rowing Federation, chaired by the Olympic champion, comes precisely from sport Giuseppe Abbagnale, and the involvement, as testimonial, of the young Paralympic rowing champion Giacomo Perini. Throughout the month of July, a video with informative and emotional content together with infographics will promote awareness of sarcomas on social channels. All citizens will be able to show their support to patients and families by personalizing their Facebook profile photo with a frame inspired by the #facemoretecontroisarcomi campaign.
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