Creating a Support Network for Pancreatic Cancer Patients in Israel

Addressing the Emotional and Informational Needs of Patients

Pancreatic cancer is a particularly deadly cancer that typically appears after the age of 55. However, recent years have seen an increase in the proportion of young patients (ages 20-65). Although this cancer is less common than diseases such as breast, colon, and prostate cancer, it also has fewer effective treatments. This means that the chance of a person diagnosed with pancreatic cancer surviving the disease is relatively low, with about 10% of patients remaining alive five years after diagnosis. These figures have hardly changed in recent decades.

Despite the serious profile of the disease and the expected difficult and frightening struggle for patients, there was no dedicated support group for patients in Israel. This picture changed recently when Guy and Niva (both preferred to be identified only by their first names), an architect and a doctor who were themselves diagnosed with pancreatic cancer, joined together to form such a support group. "We really do not intend to criticize the medical care provided in the hospitals," they say. "Nevertheless, there is a lack in everything related to the complementary aspects, including the direction of information, counseling, and especially support for patients and their families."

What made you start the group?

Guy: "It is difficult to describe the intensity of loneliness for a sick person who is tormented by intense pain and a terrible feeling of uncertainty. It is not even related to how much support and love they receive. I wanted to establish the group to try to give others a little of what I received myself.

"I think the great exposure that Mirit Harari, Didi Harari's wife, received in her battle with pancreatic cancer raised awareness of this disease. On the other hand, the question now is what's next. Let's assume that people with a genetic background will be tested earlier and that maybe someone will donate money to dedicated research. But what about those who are going through this? And their family members? This is exactly why our group is trying to create a first-of-its-kind support group, a meeting place."

Niva: "Organizing as a group makes it possible not only to provide support but also to be a significant source of information that can only be discovered by word of mouth, such as treatments, tests, and studies that are given and carried out in different places in Israel and the world. Pancreatic cancer research is currently developing by leaps and bounds, but still, most conventional treatments do not prolong life significantly. That's why the ability to organize and try to promote treatments together in the field gives a kind of hope."

Did you cooperate with the health system in establishing the group?

"We are in contact with Prof. Talia Golan's team from Tel Hashomer Hospital, who is trying to promote the initiative of the 'Israeli Pancreatic Cancer Association.' Digestion. It's sad to say, but the patients' chances of survival are not great, so it seems that there is no financial sense for the health system, which has limited resources, to invest in the establishment of a dedicated support system."

What is the role of the health system in accompanying patients and convalescents beyond the provision of medical treatments?

Guy: "It is clear that the health system, all the more so in the days of Corona, is having difficulty dealing with the enormous load. On the other hand, I would have expected a much more active support system for pancreatic cancer patients and their families. During my hospitalization at Ichilov Hospital, there were quite a few times that I felt like an object being shaken from place to place, decisions made for me, without my input.

"I repeat this matter because it is important: it is impossible to describe the change that a person undergoes from a healthy, sovereign state to a pancreatic cancer patient. They face physical torment, tremendous weakness, dependence, and above all, uncertainty. And I am not even talking about what happens to family members in this situation. The disease can bring people closer together, but there are also those - and I'm talking about the closest ones - who get scared and run away from it. I think hospitals need to make a lot of effort, and there are successful models for this in the Western world."

The two say that the coronavirus pandemic worsened the condition of patients because anyone dealing with a disease is in a high-risk group. Alongside this, they add, "It's possible that if it weren't for the coronavirus, this group wouldn't have been formed. Our group has members from all over the country - from Katsrin in the Golan Heights to Jerusalem. The meetings are held on Zoom, of course." Their guide, Yoav Zeidan, a social worker and therapist who does his work on a voluntary basis, comes from Kibbutz Hakok near the Sea of Galilee.

The new support group is very heterogeneous, consisting of men and women aged 45-75. "You have to understand that even when it comes to pancreatic cancer, there is a wide range of situations," Niva and Guy explain. "Some have tumors in the head of the pancreas, while others have tumors in the tail of the pancreas. Some are post-surgery, while others are inoperable. Some are receiving chemotherapy or participating in experimental treatments, and some have finished treatment and are only being monitored."

What happens at the meetings?

"The group is in the making, so it is not yet possible to talk about any routine. In the first meetings, we mainly got to know each other. It was very exciting to meet people in a similar situation for the first time. The process of getting to know each other is slow and it takes time for people to open up. Let's not forget that some people are in the middle of treatment and don't always feel good or able to participate in meetings.

"We exchange information and share experiences. There are also guests who come to the meetings: someone who has lived five years after surgery, which is very rare and not taken for granted. We also hosted an expert dietician, an oncologist who specializes in complementary medicine, and Tamir Gilat, who is dealing with the disease himself and is the head of the Israel Foundation for Cancer Research."

What surprised you in the formation process of the group?

Guy: "It excites me to see the slow process of crystallization and opening up. These are strangers from different places and backgrounds, with different ways of coping. But still, there are some commonalities. This sharing is very complex, and people are careful. There are topics that are difficult to talk about, such as death, but you can see how a process of sharing begins." Niva adds that she is surprised and happy to see the persistence of most group members in the weekly meetings.

However, the joy is limited. "It's pancreatic cancer," they remind us, "which means that people face great difficulties. Not everyone can always participate, and even for those who do, it's not easy to see a sick and tormented person. Certainly when you're post-treatment, as if after the disease, and you just want to forget what you went through." The two say they would like to have physical meetings because Zoom, for all its advantages, can feel alienating.

The group is open to those facing pancreatic cancer, and Niva and Guy ask to talk to interested individuals before their first meeting to coordinate expectations. Participation requires the technological ability to use Zoom and consent to a certain level of exposure to group members. For reasons of discretion, the group is currently intended only for patients and not their family members. Anyone who wants to join the group or get more information is welcome to write to Guy and Niva at this email address: siahlavalav@gmail.com.