Katg416

Did the physician who made the diagnosis have any recommendations for you?   Atlanta only has two health systems with melanoma programs (with physicians specializing in melanoma treatment).

https://www.northside.com/melanoma

and

https://winshipcancer.emory.edu/patient-care/cancer-types/melanoma.html

I have worked with patients who have been seen in both programs and who were very pleased with their care.   I have worked with both surgeons for the programs and I would be comfortable with either of them seeing any of my family members.   

I have actually been involved with the content review of the Cancer 101 planners as a nurse navigator with the National Coalition of Oncology Nurse Navigators.    Monica Knoll, the founder of Cancer 101 was an incredible woman who was also my friend who was diagnosed first with breast and then with ovarian cancer,  She passed away this past summer at much too young of an age with much left undone.  There was a fear that all of her work was going to be for nothing but her board of directors worked very hard to continue her vision and I was thrilled when I saw that they would once again be available (they haven't been because they didn't have enough funding to make more).

Her passion was for patients, their support  and their empowerment.  She designed these planners out of what she found she needed as a patient.   The majority of the people who get them do so through their hospital or cancer center for free. Our cancer center just placed a large order so that we could give them to our patients.   Cancer 101 launching a melanoma specific planner  was to fulfill a dream of Monica's.  One that she and I spoke about a year and a half ago.  Not for financial gain but for the patient.    Monica spent years drumming up support from pharma, from friends, from those in a position to give to make these planners affordable and available.   I wish everyone who has struggled to keep all of their appointments, and medical bills and questions and pathology reports and on and on organized could have a planner.  

Sorry that this was so long winded but I know Monica would have wanted everyone to know what she was about and what the planners were about.  Not getting names and information but helping patients.  

I have actually been involved with the content review of the Cancer 101 planners as a nurse navigator with the National Coalition of Oncology Nurse Navigators.    Monica Knoll, the founder of Cancer 101 was an incredible woman who was also my friend who was diagnosed first with breast and then with ovarian cancer,  She passed away this past summer at much too young of an age with much left undone.  There was a fear that all of her work was going to be for nothing but her board of directors worked very hard to continue her vision and I was thrilled when I saw that they would once again be available (they haven't been because they didn't have enough funding to make more).

Her passion was for patients, their support  and their empowerment.  She designed these planners out of what she found she needed as a patient.   The majority of the people who get them do so through their hospital or cancer center for free. Our cancer center just placed a large order so that we could give them to our patients.   Cancer 101 launching a melanoma specific planner  was to fulfill a dream of Monica's.  One that she and I spoke about a year and a half ago.  Not for financial gain but for the patient.    Monica spent years drumming up support from pharma, from friends, from those in a position to give to make these planners affordable and available.   I wish everyone who has struggled to keep all of their appointments, and medical bills and questions and pathology reports and on and on organized could have a planner.  

Sorry that this was so long winded but I know Monica would have wanted everyone to know what she was about and what the planners were about.  Not getting names and information but helping patients.  

I have actually been involved with the content review of the Cancer 101 planners as a nurse navigator with the National Coalition of Oncology Nurse Navigators.    Monica Knoll, the founder of Cancer 101 was an incredible woman who was also my friend who was diagnosed first with breast and then with ovarian cancer,  She passed away this past summer at much too young of an age with much left undone.  There was a fear that all of her work was going to be for nothing but her board of directors worked very hard to continue her vision and I was thrilled when I saw that they would once again be available (they haven't been because they didn't have enough funding to make more).

Her passion was for patients, their support  and their empowerment.  She designed these planners out of what she found she needed as a patient.   The majority of the people who get them do so through their hospital or cancer center for free. Our cancer center just placed a large order so that we could give them to our patients.   Cancer 101 launching a melanoma specific planner  was to fulfill a dream of Monica's.  One that she and I spoke about a year and a half ago.  Not for financial gain but for the patient.    Monica spent years drumming up support from pharma, from friends, from those in a position to give to make these planners affordable and available.   I wish everyone who has struggled to keep all of their appointments, and medical bills and questions and pathology reports and on and on organized could have a planner.  

Sorry that this was so long winded but I know Monica would have wanted everyone to know what she was about and what the planners were about.  Not getting names and information but helping patients.  

Hi Dian,

It has been a few years since I have read and commented here.  My dad was diagnosed with a Stage IV melanoma in June of 2007 and passed away in August of 2011.  Ironically enough, I had been hired to navigate melanoma patients by the hospital that I was working for in 2006.  I found the MPIP and found many wonderful people who were willing to tell me what patients needed from their navigator.  They also became a tremendous source of comfort to me when my dad was diagnosed and subsequently passed away. Being a primary caretaker for my dad, I really got to experience what it was like on the other side.  To wait for phone calls from docs, to try and figure out who I needed to call next and who had the answers for me.   I returned to my position after his death more committed than ever to navigating my patients and being available to help them through the maze that we call healthcare.   

I came back to the MPIP because it's still for me the pulse of what is going on in melanoma.  I can see what patients and their families are experiencing and I learn so much.  On a personal level, I read for my dad and hope and pray for all of those who are fighting. 

The new 2012 Commission on Cancer standards require that oncology patients have access to patient navigation. While there are not specific guidelines yet that govern this, any hospitals and cancer programs have navigation programs in place that will assist patients and there is not a charge for this service unlike the site above which is a private business which does charge.  I would encourage anyone who is interested in knowing more about navigation or in seeing if there is an ONN (Oncology Nurse Navigator) in your area to go to http://www.NCONN.org.  They have a patient section that you will find informative and helpful. 

Kathleen

Hi Dian,

It has been a few years since I have read and commented here.  My dad was diagnosed with a Stage IV melanoma in June of 2007 and passed away in August of 2011.  Ironically enough, I had been hired to navigate melanoma patients by the hospital that I was working for in 2006.  I found the MPIP and found many wonderful people who were willing to tell me what patients needed from their navigator.  They also became a tremendous source of comfort to me when my dad was diagnosed and subsequently passed away. Being a primary caretaker for my dad, I really got to experience what it was like on the other side.  To wait for phone calls from docs, to try and figure out who I needed to call next and who had the answers for me.   I returned to my position after his death more committed than ever to navigating my patients and being available to help them through the maze that we call healthcare.   

I came back to the MPIP because it's still for me the pulse of what is going on in melanoma.  I can see what patients and their families are experiencing and I learn so much.  On a personal level, I read for my dad and hope and pray for all of those who are fighting. 

The new 2012 Commission on Cancer standards require that oncology patients have access to patient navigation. While there are not specific guidelines yet that govern this, any hospitals and cancer programs have navigation programs in place that will assist patients and there is not a charge for this service unlike the site above which is a private business which does charge.  I would encourage anyone who is interested in knowing more about navigation or in seeing if there is an ONN (Oncology Nurse Navigator) in your area to go to http://www.NCONN.org.  They have a patient section that you will find informative and helpful. 

Kathleen