Cancer Support Groups Could Be Better Organized
Most major cancer centers offer support groups for patients and caregivers. Typically, these groups are organized by type of cancer (breast, lung, bladder, etc.) Bladder cancer groups are less common because bladder cancer is less common (but certainly not rare).
How should cancer support groups be organized?
Some places organize all urological cancers together. Regardless of the organizational structure, I have come to believe that such groups should be organized by prognosis rather than by organ of origin.
In some cases (especially for early stage patients and those likely to survive their cancer) the specific type of cancer matters. As a bladder cancer patient who has his or her bladder removed (or is considering having it removed) meeting and talking with patients who have been through it is valuable.
Meeting with people with a similar prognosis
But I believe that support groups should also be organized with regard to prognoses: who is expected to live a long time and who has been given a terminal prognosis.
The breast cancer community has recognized this after metastatic patients complained about feeling unwelcome at support groups because they were “too negative” and scared the less seriously ill patients.
It is entirely understandable that if you are likely to survive your cancer, you want to hear stories of people who have survived and you want your spirits boosted by people also likely to survive.
Some stories can be painful or scary to listen to
But if you attend a group like this and you have received a far less positive prognosis, it can be painful to listen to positive stories because you know they are unlikely to be yours. In that situation, you might sometimes want positivity but you also likely want the chance to talk honestly about the stress, the fear, the possibility of death. And for those likely to survive, it can be terrifying to hear such stories.
I have seen the terror in the eyes of likely survivors when I spoke about my first husband’s terminal prognosis – his pain, blood clots, and failed chemos. I felt guilty for scaring them with the truth of our life at that moment. I can understand how they probably didn’t want to hear it.
The isolation of living with a poor prognosis
But I would ask those not so sick to understand that there is almost no place in cancer land more isolating than living with a poor prognosis. Some days you do want to be positive. But other days you just want to be honest. And to have others be honest with you. And not worry about scaring or offending the less sick.
I have come to believe that support groups should be organized the way language courses are organized: participants should be grouped by their “level” or, in the case of cancer, their prognosis. I think this is far more meaningful than grouping participants by organ of origin.
Have your views towards bladder removal changed since you were diagnosed?