A Guide For Patients with Advanced Cancer

Vital Options presents Advocacy in Action (AIA), in partnership with the ESMO Cancer Patient Working Group and in collaboration with the ECCO Patient Advisory Committee. This six-part AIA Forum brings together influential leaders in cancer advocacy, to address the core issues that impact cancer survivorship.

Joining Vital Options CEO, Selma Schimmel, will be AIA co-chair Lorenz Jost, Chair of the ESMO Cancer Patient Working Group, joined by co-moderators Stella Kyriakides, Chair of ECCO Patient Advisory Committee and Europa Donna; Cora Honing, European Cancer Leagues (Dutch Cancer Society); Louis Denis, Europa Uomo; Richard Sullivan, Eurocancercoms PatientView Survey; Francesco De Lorenzo, European Cancer Patient Coalition; and Jan Geissler of CML Advocates Network. Special guest, ESMO President David Kerr, will join leading patient advocates across disease areas in this vital discussion for the European and international cancer patient community.

For more information on the ESMO Guide for Patients with Advanced Cancer, CLICK HERE.

For more information on ESMO Guides for Patients, CLICK HERE.

Advocacy in Action at the 2011 European Multidisciplinary Cancer Conference was made possible, in part, by:



Selma Schimmel, Founder & CEO, Vital Options International:

ESMO’s put out a new guide for patients which translates clinical practice guidelines that medical oncologists use to a language that is patient friendly. Please comment on what you think is most important for the patients when it comes to using these guides.

Lorenz Jost, Chair, ESMO Patient Working Group:

Yes, from ESMO we decided that it’s a high priority to produce this guides for disease specific topics because we have guidelines for the doctors that are not comprehensible to the lay public and so we decided to translate to lay speak, and I guess it will be one of the most important achievements if we have the whole set of these guides for all the important tumors. Then we have this guideline we produced for the patients with advanced cancer and we should also plan a guide for cancer survivors with all the tips and tricks and the caveats they have to observe. And then a quick response to Anita Waldman, having direct contact with trial leaders is certainly a good thing, especially for rare diseases but if you do the same for colon cancer and for breast cancer I’m not so sure how the trial availability will be flawed with females and requests.

Cora Honing, International Relations Officer, Dutch Cancer Leagues:

You could have someone who can guide the patients to the several hospitals or clinicians where the trials are on-going. So I think we have this problem as well with lymphomas. There’s huge amount of on-going trials but there’s one person who can guide the patients to this.

Louis Denis, Secretary, Europa Uomo:

The main question is who is responsible for the information? And of course this start with university; they have another job to do but I believe, especially the urologist with the EAU, the scientific associations they are responsible for providing information and education of the patients. It works wonderful, and I must say I’m very optimistic because like Doctor Jost said, we have this (the Guidelines) in front of us. I said it around to our members and they’re all extremely happy, so the question is, the associations have to pick it up in order to do better. Maybe they should involve some patient groups before they start anything.

Nathan Cherny, Chair, ESMO Palliative Care Working Group:

The guide tries to empower patients, to give them the skills to know what are the important questions, what do they need to be asking their doctors about their illness and the treatment options available to them. Part of this, some of this is going to be challenging for doctors because some oncologists will not necessarily be used to having patients with such an appreciation of issues that are involved in the information that they need. On the issue of decision making, it addresses very much, in fairly substantial detail, issues of where to get information, how to use the Internet with all the appropriate caveats about their liability of sources, it addresses the sensitive issue of getting a second opinions, which is often not addressed. What are the politics of second opinions, what are the questions to ask, how to communicate your desire to get a second opinion with your treating doctor. It addresses issues relating to complementary therapies as well as some of the other tougher issues associated with survivorship of living with relapse of incurable disease, of how to find the appropriate balance between one’s cancer care and one’s life, and then the aphorism of needing to hope for the best but prepare for the worst, but what does ‘prepare for the worst’ mean? How does one transfer or translate this into a reality, which is going to mean leave oneself with one’s family members?

We’re really glad to have the support of so many of the organizations involved; I look at this as a first edition of what will be a living document, and I’ll be very much interested in receiving feedback from users, from organizations around the table as how to improve the booklet, and if it is going to be produced in a very wide range of languages and we’re glad we’re getting sponsorship to do much of that. So I really see this as the launch of a very exciting on-going and empowering project.

Cora Honing, International Relations Officer, Dutch Cancer Leagues:

I would like to add something (inaudible) mentioned. He said it was the role for the scientific associations in producing and developing patient information. I think we have to take into account the different developments and histories in several countries because there have been established different ways of collaboration between organizations and it could be one comes to a clinical trials for instance, it could be the scientific associations but it could also be comprehensive cancer centers who are in charge of the developing of the clinical trials and cancer leagues and patients’ organizations, for instance.

Francesco De Lorenzo, Board Member, European Cancer Patient Coalition:

I think these now very well established that cancer patient organizations are the best to make up products for information tools for cancer patients. But it depends how cancer patient organization works. We have a very good example in Italy because we have been doing a lot of international work but translation is not enough. You have to adapt to each country so it’s not just a simple way. The problem is to get together the scientific society as we did highly specialized centers for cancer care as we did. So now we have more than 50 booklets, websites, more than 150 thousand booklets have been downloaded and in the council plane has been included that our season is became a national information service to whom belongs more than 40 center best in Italy. So we are realizing the kind of information the same all over Italy and more and more centers will join us. And I think that the interaction between scientific society and highly specialized center for cancer patients are the best way of doing this kind of work.