Outliving Cancer – A State of Action – Why many support programs don’t work


Why many support programs don’t work.


Cancer support groups have been around for decades. They usually get off to a great start and little-by-little they diminish in attendance and eventually dissolve. It is disheartening to make the decision to end a support group. It is difficult to understand why the group failed. It is even more difficult to justify that the patient no longer feels the need for support.


The group didn’t fail. It simply no longer filled the needs of the patient. As with everything else in life, “change” was the cause for diminished attendance. The needs of the patients changed. It was once very fulfilling for the patient to talk about their cancer diagnosis, their journey through treatment, and their emotions. There was comfort found in learning that they were not the only ones who dealt with specific emotions at the time of their cancer diagnosis. They found comfort learning that how they felt, what they thought, or how other people reacted to their diagnosis was normal.


The patient rarely stops attending a support group because they no longer need support. The patient stops coming because their needs change. They simply become uncomfortable hearing more and more stories, often like their own, of how patients were diagnosed, the details of what they endured and what it is like to experience treatment.  This repetitive component of sharing at each support group does not serve the needs of returning patients.


Through my 12 years outliving cancer and the 9+ years working at an oncology office, the “sharing” component of a support group is a delicate tightrope to walk – one which has been a constant threat to the success of any “support” group that I have participated in myself or created with an oncology social worker while working at an oncology office.


The returning patients have different expectations to be met. What do they want? What do they need?


The returning patients are ready to advance to a different level. They are anxious to learn what it takes to move forward with life. They find it uncomfortable or depressing to constantly relive the diagnosis phase of the journey. Since the support group isn’t assisting them to move forward, the patient stops attending. These patients still need support. What they need can only be fulfilled by offering them a new level of support – support that will provide them advancement towards outliving cancer.


There are constant changes in the needs of those attending a support group and so the functionality of the support group must become flexible and dynamic. Often facilitators, when they experience the mix of newly diagnosed patients with those who are more experienced on their cancer treatment journey, will evolve the support group to become educational support – completely removing the personal interaction of those attending. This educational form of support group becomes very tasking on the organizer because it requires a tremendous amount of time to coordinate the topics and locate the speakers of those topics. At times there may be additional costs (speaker fees) associated with educational support programs; making these programs targets for budget cuts. While an educational support programs are interesting and informative, the advanced support needs of the cancer patient remain unfulfilled. The patient is basically stuck at the emotional level that immediately follows the diagnosis or at the level of being “in treatment.” Today most cancer patients remain unsupported while they physically and emotionally advance towards outliving cancer.


Being unsupported while advancing towards outliving cancer – being unsupported with tools of what to do and how to outlive cancer – only leaves the door open for a recurrence to occur. Today there is a void in support for cancer patients living beyond cancer treatment and yet there are those who do outlive cancer. It seems obvious to me that there is an opportunity for those of us who are outliving cancer to help cancer patients currently unsupported at the level where they are ready to advance.


I have observed that those who are outliving cancer are always up-tone individuals. Up-tone beings are always in action mode. They are in a constant state of “doing” – being causative – taking action – learning and using what they learn. That is why I created We Are Alive … Period! SPOTMANY Outliving Cancer program – a program of having those outliving cancer present at our gatherings so those in treatment can see, meet, and discuss success stories of outliving cancer. It is a hybrid of support groups and educational support programs. There is no other organized group like this – we are treading on new territory. As we now celebrate entering our third year, I have faith we can develop the perfect formula for success – success for each individual (outliving cancer) as well as for We Are Alive … Period! SPOTMANY Outliving Cancer program itself (growth in attendance and growth in the number of SPOTMANY locations).


We Are Alive … Period! SPOTMANY Outliving Cancer is a successful program that can pull us all through the cancer journey to the other side, the side of outliving cancer.