Frustrated with length of staging process

Hi Michelle,

Freaking out's not going to help anything! I'm not familiar with all these doctors, is this gal a melanoma specialist? If he is, I'd agree, a month is too long and I hope you're calling the office.

If she's not a specialist, please find one in your area now, now, call and make an appt today.

Thought as I write, even if she is a specialist, since you're obviously NOT a happy camper, I might be looking for another campsite! Just a thought. You & Don need a team you can work with and feel like are working for Don. Make the change sooner rather than later if you want to find another doc…make sure he/she is a specialist!

Lord, open doors that need opening, in Your mercy. Amen.

Grace and peace,

Carol

Hi Michelle,

Freaking out's not going to help anything! I'm not familiar with all these doctors, is this gal a melanoma specialist? If he is, I'd agree, a month is too long and I hope you're calling the office.

If she's not a specialist, please find one in your area now, now, call and make an appt today.

Thought as I write, even if she is a specialist, since you're obviously NOT a happy camper, I might be looking for another campsite! Just a thought. You & Don need a team you can work with and feel like are working for Don. Make the change sooner rather than later if you want to find another doc…make sure he/she is a specialist!

Lord, open doors that need opening, in Your mercy. Amen.

Grace and peace,

Carol

If I remember correctly, Nageatte Ibrahim is at the Dana-Farber Cancer Institute, and she is a melanoma oncologist, as well as Instructor in Medicine.

If I remember correctly, Nageatte Ibrahim is at the Dana-Farber Cancer Institute, and she is a melanoma oncologist, as well as Instructor in Medicine.

Michelle      I totally understand what you both are feeling.  Last year, my husband's first MRI showed some growths at the base of his skull, and we were sent off to Dana Farber, as our local doctor felt my husband's condition couldn't be handled here in upstate NY.  We were even sent to the Brain Tumor Board in Boston and his scans were reviewed by the best and no one could say for sure what these spots were.  Only, Dr Hodi at Dana Farber said to us, if I were a betting man, I would say these growths are not melanoma related.  However, the only way to know for sure (these spots couldn't easily be reached for a biopsy), was wait out another month and re-scan to see if they changed.  That was one LONG MONTH, as my husband wasn't receiving any treatment at that time and I too worried that the melanoma was being given free rein.  I prayed alot and we both tried to focus on our kids and their activities, and not obsess with our circumstances.  It was the HARDEST month of my life, but when he was re-scan there were no changes and it turns out my husband just has a weird head! We are now 15 months NED, and he is finishing his year of interferon next week.  Just take one day at a time, and try to understand that sometimes re-scanning although that usually involves a one month wait, is often better than an unnecessary biopsy.

Also, my experience with the Dana Farber melanoma team, is that the doctors share the same nurse, Nancy and PA, Angie and they are both very receptive to any questions and concerns you have.  I frequently e-mail and/or call them with questions/concerns and they get back to me right away.  So, if you are nervous about waiting for your appointment, contact them and express yourself.  They helped me wait out our time last year!  God Bless!  Valerie (Phil's wife)

Michelle      I totally understand what you both are feeling.  Last year, my husband's first MRI showed some growths at the base of his skull, and we were sent off to Dana Farber, as our local doctor felt my husband's condition couldn't be handled here in upstate NY.  We were even sent to the Brain Tumor Board in Boston and his scans were reviewed by the best and no one could say for sure what these spots were.  Only, Dr Hodi at Dana Farber said to us, if I were a betting man, I would say these growths are not melanoma related.  However, the only way to know for sure (these spots couldn't easily be reached for a biopsy), was wait out another month and re-scan to see if they changed.  That was one LONG MONTH, as my husband wasn't receiving any treatment at that time and I too worried that the melanoma was being given free rein.  I prayed alot and we both tried to focus on our kids and their activities, and not obsess with our circumstances.  It was the HARDEST month of my life, but when he was re-scan there were no changes and it turns out my husband just has a weird head! We are now 15 months NED, and he is finishing his year of interferon next week.  Just take one day at a time, and try to understand that sometimes re-scanning although that usually involves a one month wait, is often better than an unnecessary biopsy.

Also, my experience with the Dana Farber melanoma team, is that the doctors share the same nurse, Nancy and PA, Angie and they are both very receptive to any questions and concerns you have.  I frequently e-mail and/or call them with questions/concerns and they get back to me right away.  So, if you are nervous about waiting for your appointment, contact them and express yourself.  They helped me wait out our time last year!  God Bless!  Valerie (Phil's wife)

Michelle, I empathize with your frustration about the pace of things.  We've all been there.  In my case, about three months elapsed between the time a pathology report showed that a tiny mole was melanoma and the time the diagnosis had settled on Stage IIIc (14 malignant nodes) and I started an adjuvant biochemotherapy trial treatment.  Every next step along that journey was always a "week from Thursday", followed by more waiting for scan or biopsy results etc. and the next appointment with the oncologist.  It nearly drove me (and my wife) bonkers.  Unfortunately, this just seems to be the way it is at any big-time melanoma treatment center.  Every diagnostic test and appointment has to be fitted into busy schedules and every step along the way seems to require insurance company preauthorization.  Nevertheless, when I expressed my frustration to my docs they assured me that the most important thing was to get the staging right so they could then recommend the most appropriate and best available treatment options; and the passage of several weeks before starting that treatment wouldn't reduce my chances of a successful treatment outcome.

And that turned out to be true.  Nearly eight years later, I'm healthy and showing no evident disease.  I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com, and you might get some smiles and encouragement from it.

Best wishes to you and your husband.

Michelle, I empathize with your frustration about the pace of things.  We've all been there.  In my case, about three months elapsed between the time a pathology report showed that a tiny mole was melanoma and the time the diagnosis had settled on Stage IIIc (14 malignant nodes) and I started an adjuvant biochemotherapy trial treatment.  Every next step along that journey was always a "week from Thursday", followed by more waiting for scan or biopsy results etc. and the next appointment with the oncologist.  It nearly drove me (and my wife) bonkers.  Unfortunately, this just seems to be the way it is at any big-time melanoma treatment center.  Every diagnostic test and appointment has to be fitted into busy schedules and every step along the way seems to require insurance company preauthorization.  Nevertheless, when I expressed my frustration to my docs they assured me that the most important thing was to get the staging right so they could then recommend the most appropriate and best available treatment options; and the passage of several weeks before starting that treatment wouldn't reduce my chances of a successful treatment outcome.

And that turned out to be true.  Nearly eight years later, I'm healthy and showing no evident disease.  I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com, and you might get some smiles and encouragement from it.

Best wishes to you and your husband.