All the major cancers have groups available for support, consultation etc. Of course the major cancers such as breast, lymphoma, colon cancer are easily found. For other cancers they may be under head and neck or that type of designation.
There was a point during my daughter’s leukemia treatment where I became desperate. I had no idea of where to get help. In a nut shell Kayla’s bones were deteriorating at an alarming rate. Even though I had exam reports proving the degradation, and countless fractures, our oncologists acted as if this was not a problem. When I researched medical documents the ramifications of osteoporosis on the spine were horrific. Things like fractured or shattered discs were detailed and sent shutters up my spine.
Out of desperation I called the Leukemia Lymphoma Society in New York City. (We live in Florida.) In tears I told the receptionist my problem. She put me through to the director. I do not remember his name. All I remember is that I had finally contacted someone who was willing to listen to me. He told me that he would have a doctor call me within 24 hours.
Dr. Chuckla from Sloan Kettering called me the next day. We arranged my sending all medical information to him. Due to insurance restrictions we could not go to Sloan Kettering but I was able to arrange a verbal consult and that is why I sent our medical file to him.
He basically told me three things. 1. You are correct for your worry and you should be worried now. Don’t wait to have this addressed. 2. Yes, patients survive when taken off of the corticosteroids due to bone problems. There is no lessening of survival chances. 3. Do not wait, take action.
That was all I needed to hear. You see our local oncologists made me feel like I was insane to be worried about the bone issues. I was very confused and stressed. To have a consultation with an oncologists at a reputable medical institute really helped me.
Because of this help, I was able to find another treatment center at Shands of Florida where the team took all of my information into consideration and eventually took my daughter off the steroids completely. The remainder of her treatment was far less stressful. All due to an important phone call to the Leukemia Lymphoma Society.
Your oncologist can also refer you to resources in your area.
Additionally, If you need help I have a spread sheet of resources for many different types of cancers located here.
I want to leave you with this inspirational video of a cancer success story.