Caregiver and Advocate Spotlight: Patty Saccenti, Rome, Italy
Meet Patty Saccenti – a retired throracic surgeon, mother of three, caregiver to her ALK patient husband, and one of our most active volunteers and advocates both within ALK Positive, Inc. in the US and in her country and region of origin, Italy and Europe.
1) You are the caregiver to your ALK-positive patient husband. Tell us a little about yourself, your personal and professional background, and your family's journey with ALK-positive lung cancer so far.
In September 2017, we were just back in Rome - where we live - having just come back from our summer vacation, and we were watching TV after putting our three children to sleep. Suddenly my husband felt something under his finger near his neck and asked me, "what do I have here?". I put a finger on what looked like a small cyst and froze: a small, hard and still, lymph node. I am a physician, a thoracic surgeon - although since the birth of my third child I had taken a different professional path - and I knew perfectly well that was a bad sign.
The following day he had a CT scan: sure enough, a 2 cm tumor was discovered on the left upper lobe with extensive mediastinal involvement, which classified him as stage 3B.
I was with my colleagues in front of the CT screens watching Paolo’s chest images sliding while my whole world was slowly falling upon me. I remember not crying, not saying a word, I only remember eyes on me,.. nobody moved. I knew what I had to do: I gathered myself and entered the CT scan room where my husband was still on the scan table, "There’s a small tumor, Pol".
A colleague and close friend performed a biopsy a few days later, I remember tears in the operating room, then the news of the ALK mutation. So little was known about it in Italy back then!
Being a caregiver and a doctor is quite the challenge. Some days I know this has allowed me to skip steps and reach a diagnosis within days, other days I think I should have noticed early signs sooner.
Once my husband said, "I lost my wife; she has become my doctor."
Finding a balance is complicated.
Obviously, when it comes to medical situations I am the one who has more vision and more awareness, and sometimes I have to keep all this to myself, calibrating when and how much my husband is able to tolerate. I don't alarm him with my doubts, and I avoid sharing my fears with him, and that weighs on me. I have the support of a psychotherapist, of course.
As far as our children are concerned, in 2017 they were 3,6 and 8 years old. I’ve been observing ALK patients overseas sharing their cancer journey with their kids, doing advocacy involving them, and I have admired this. In Italy this isn’t common. Although we’ve never been “overprotective parents”, we could not find an acceptable way to tell them what seemed to be unacceptable.
That was until our daughter’s teacher called us, because in her opinion, there was something wrong with our 11-year-old daughter, our oldest child. My husband found the courage to talk to our three children; he drew on a big wallpaper the story of a dad who, due to a mutation in his DNA, became a green HULKman, but instead of being stronger, he became weaker. Luckily, there were some magic pills calked TKIs to save him.
No secrets between family members, believe me. We were reborn from there.
2) Knowing what you know now, what would you advise a newly diagnosed patients and their loved ones supporting them? What do you know now that you wish you knew back then?
”There is hope”.
At first we were sailing in a dark sea with no hope. We were alone, and we felt frightened.
No one was able to give us the useful information we needed. Oncologists don’t like disclosure.
But knowledge is hope.
3) You have been actively involved in improving outcomes for ALK-positive cancer patients in Europe and beyond. You are bringing together European ALK experts, participating in advocacy events and conferences, and you are one of the leaders of the ALK coalition within the EU. You are also a Board member for ALK Positive, Inc. and a member of the ALK Positive, Inc. Medical Committee. What prompted you to get involved in all this and what are your goals and hopes for the future through all this activity?
Being involved and active in all these activities means giving a meaning to what happened to our five lives, changing everything. I found a meaning where I initially lost it.
It means transforming a negative event into energy to move forward, not being eaten by pain but responding.
When a patient of ALKPositiveItaly, to whom I provide information, asks me, "why are you doing this?" (in Italy we always have a very suspicious attitude), I answer, “Because someone did it for me before.”
That one was called Colin (Barton), Gina (Hollenbeck), Amanda (Nerstad), Karla (Castro-Frenzel),.. and many others. I’ve met incredible people through the ALK Positive Support Group.
I learned something that had been missing from my medical training. I found a deep sense of humanity, despite different cultures, languages, age.
Those people inspired me and made me feel like sharing my little knowledge and skills to give hope and help improving ALK medical care and research where I live - Europe.
4) From your interaction with doctors, researchers, and other ALK experts both in Europe and through the ALK Positive Medical Committee, what makes you most excited and hopeful about the future of this disease? Are there any new treatments or upcoming clinical trials that you consider most promising for ALK patients?
NVL-655 is doing a great job; this molecule is certainly a winner.
But it is not the solution. Not alone. Progression may still happen.
I have the impression that we have been so close to finding the cure several times, and we are still very close to finding it. I feel it’s just one more small step, just around the corner!
The malignant cells on an ALK tumor have the characteristic of being recognized by the immune system, and this gives an important advantage. I believe that the final solution will come from therapies working on the immune system.
Interview by: Christina Weber
