› Forums › General Melanoma Community › Plan…at least start of plan
- This topic has 18 replies, 6 voices, and was last updated 10 years, 7 months ago by
MattF.
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- September 24, 2013 at 1:19 am
After hearing from many of you, I stopped feeling sorry for myself. Though it consumes much of my thought, I'm trying to keep a positive attitude and push forward. So I just wanted to update everyone as to what I've done in my fight.
Opted to have surgery at Northwestern Memorial. All of my files had already bent sent over electroincally except path reports from surgery last week. They also wanted path slides. I went grabbed everything and drove down to Northwestern. Surgical Oncologist came out and met me and said she would schedule me in for Wednesday.
So by time I got home she called and scheduled meetings with surgeons (surgical oncologist & plastics), has PET/CT lined up, Brain MRI…all on Wednesday!!!! Not sure if I'll get results because I see surgeons first…best she could with short notice. I'm not complaining. Now just need to deal with scanxiety!!!! I just had them at end of Feb…all clear!!! Guess some things never change…only difference is that I have melanoma again so more worried about spread!! Keep saying…please be local!!!!!! Also, pathology report was not good…in terms of how it was written. No miotic rate, surgery report said thinks it's a lymph node but path says nothing, nothing about margins though surgeon assured me he got everything and now we look for metastatic disease (i.e. scans) and do another surgery for microscopic cells. This sound normal?
Anyway, I received call from medical oncologist who wanted to bring me up to speed on pathology, next steps etc… I informed her what I did and where I'm going for surgery and she applauded me for moving fast and said I picked great place to have surgery. I asked about pathology and how written…she said probably not lymph node. Of course I asked about distant metastasis given scans 6 months ago…of course she didn't say oh everything will be great…only that given the history and recent tests she wouldn't be suprosed if they were clear but docotors/oncologists don't go on speculative…need definitive.
So that's it….pray for clear scans…..and to get on with it!! Thanks everyone for being supportive. I've heard many of you say….you're your own best advocate!!!!
Wishing you all the best!!!
Josh
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- September 24, 2013 at 1:57 am
Josh,
Great to see you bounce back from less than great news. I can only speak for myself, but taking action helps mitigate some of the anxiety and gives back a sense of control. I opted for surgery and volunteered for a clnicsl trial (10-229). I wanted to give myself the best chance for a complete recovery. Good luck. Your attitude is great and you’re truly taking the bull by the horns. Keep the rest of your fellow warriors updated when you can. Until then all the best ! -
- September 24, 2013 at 1:57 am
Josh,
Great to see you bounce back from less than great news. I can only speak for myself, but taking action helps mitigate some of the anxiety and gives back a sense of control. I opted for surgery and volunteered for a clnicsl trial (10-229). I wanted to give myself the best chance for a complete recovery. Good luck. Your attitude is great and you’re truly taking the bull by the horns. Keep the rest of your fellow warriors updated when you can. Until then all the best ! -
- September 24, 2013 at 1:57 am
Josh,
Great to see you bounce back from less than great news. I can only speak for myself, but taking action helps mitigate some of the anxiety and gives back a sense of control. I opted for surgery and volunteered for a clnicsl trial (10-229). I wanted to give myself the best chance for a complete recovery. Good luck. Your attitude is great and you’re truly taking the bull by the horns. Keep the rest of your fellow warriors updated when you can. Until then all the best ! -
- September 24, 2013 at 2:57 am
Hey Josh,
Sounds like your taking care of things as they come which is all you can do. Being your own advocate is the best advice I've received here. Oh and remaining positive, also very important. Keep us posted on your scan results, I'm sure you will be fine. Please take care and cherish every moment of your life.
All my best to you Josh
Denise
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- September 24, 2013 at 2:57 am
Hey Josh,
Sounds like your taking care of things as they come which is all you can do. Being your own advocate is the best advice I've received here. Oh and remaining positive, also very important. Keep us posted on your scan results, I'm sure you will be fine. Please take care and cherish every moment of your life.
All my best to you Josh
Denise
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- September 24, 2013 at 2:57 am
Hey Josh,
Sounds like your taking care of things as they come which is all you can do. Being your own advocate is the best advice I've received here. Oh and remaining positive, also very important. Keep us posted on your scan results, I'm sure you will be fine. Please take care and cherish every moment of your life.
All my best to you Josh
Denise
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- September 24, 2013 at 4:21 am
Josh —
It feels good to have a plan of action with steps, right?? Glad to hear the ball is rolling quickly with the surgery oncologist — she sounds on top of it.
For what it's worth, making a list of any questions you have to ask on Wednesday since it sounds like you may be meeting with doctors on an empty stomach and no caffeine (if before the PET/CT). Plus, things can always feel a bit hectic even under normal circumstances. Best of luck!
Doro
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- September 24, 2013 at 4:21 am
Josh —
It feels good to have a plan of action with steps, right?? Glad to hear the ball is rolling quickly with the surgery oncologist — she sounds on top of it.
For what it's worth, making a list of any questions you have to ask on Wednesday since it sounds like you may be meeting with doctors on an empty stomach and no caffeine (if before the PET/CT). Plus, things can always feel a bit hectic even under normal circumstances. Best of luck!
Doro
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- September 24, 2013 at 4:21 am
Josh —
It feels good to have a plan of action with steps, right?? Glad to hear the ball is rolling quickly with the surgery oncologist — she sounds on top of it.
For what it's worth, making a list of any questions you have to ask on Wednesday since it sounds like you may be meeting with doctors on an empty stomach and no caffeine (if before the PET/CT). Plus, things can always feel a bit hectic even under normal circumstances. Best of luck!
Doro
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- September 24, 2013 at 7:16 am
Very good, Josh. Sounds like you have an excellent plan at a first-rate melanoma center. Spending your time trying to figure out how to schedule all these tests and treatments is much better for your psyche than spending your time fretting and imagining worst-case scenarios.
I'm concerned about the lack of a mitotic index, though. Did you get a mitotic index on your previous biopsy report? That is an important prognostic criterion and can influence your doctors' recommendations in the future. If you did not get a mitotic index before, I would call the pathologist who wrote the report and ask for it now. It's important to know that.
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- September 24, 2013 at 7:16 am
Very good, Josh. Sounds like you have an excellent plan at a first-rate melanoma center. Spending your time trying to figure out how to schedule all these tests and treatments is much better for your psyche than spending your time fretting and imagining worst-case scenarios.
I'm concerned about the lack of a mitotic index, though. Did you get a mitotic index on your previous biopsy report? That is an important prognostic criterion and can influence your doctors' recommendations in the future. If you did not get a mitotic index before, I would call the pathologist who wrote the report and ask for it now. It's important to know that.
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- September 24, 2013 at 7:16 am
Very good, Josh. Sounds like you have an excellent plan at a first-rate melanoma center. Spending your time trying to figure out how to schedule all these tests and treatments is much better for your psyche than spending your time fretting and imagining worst-case scenarios.
I'm concerned about the lack of a mitotic index, though. Did you get a mitotic index on your previous biopsy report? That is an important prognostic criterion and can influence your doctors' recommendations in the future. If you did not get a mitotic index before, I would call the pathologist who wrote the report and ask for it now. It's important to know that.
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- September 24, 2013 at 12:34 pm
You know….the only thing my path report said when I was intially diagnosed was that mitoses can be scattered through the tumor which was small 5.7mm in diameter.I asked then and oncologist said from what he saw I was low-mid risk recurrence. The leisons this time were similar in size 7mm and 4mm but lacked anything about mitoses. I will be asking tomorrow at Northwestern, thinking they will do their own pathology. They wanted the slides. Yeah always thought that it was kind of a big deal.
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- September 24, 2013 at 12:34 pm
You know….the only thing my path report said when I was intially diagnosed was that mitoses can be scattered through the tumor which was small 5.7mm in diameter.I asked then and oncologist said from what he saw I was low-mid risk recurrence. The leisons this time were similar in size 7mm and 4mm but lacked anything about mitoses. I will be asking tomorrow at Northwestern, thinking they will do their own pathology. They wanted the slides. Yeah always thought that it was kind of a big deal.
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- September 24, 2013 at 12:34 pm
You know….the only thing my path report said when I was intially diagnosed was that mitoses can be scattered through the tumor which was small 5.7mm in diameter.I asked then and oncologist said from what he saw I was low-mid risk recurrence. The leisons this time were similar in size 7mm and 4mm but lacked anything about mitoses. I will be asking tomorrow at Northwestern, thinking they will do their own pathology. They wanted the slides. Yeah always thought that it was kind of a big deal.
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