› Forums › General Melanoma Community › Scanxiety
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democat.
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- May 28, 2014 at 9:24 pm
I was initially diagnosed in December 2012, had sentinel node biopsy in January 2013, and lymph node dissection in February 2013. My melanoma oncologist said I was officially Stage 3a, but more like a Stage 3b, because of the depth and thinkness of my primary and the high rate of mitosis. So he says I'm 3a/3b.
I've had 3 CT scans in the last year and a brain MRI – all clear. Friday is my 4th CT scan, and I'm nervous to the point of distraction. I feel like I can't make any plans for vacations, or much of anything, until I get those results.
There is so much conflicting information about survival rates and disease free survival rates on the Internet – much of it out of date. I'm sure I read something at some point about the 2-year NED anniversary as being a point where odds against recurrence improve, but can't find anything to that effect right now.
Leading up to my scans, I always do some research on the latest treatments for metastatic melanoma, to convince myself that stage 4 isn't necessarily a death sentence. I also draw comfort from reading the posts of many on this site who have withstood various treatments and are still around.
I know I'm rambling, but I just wanted to reach out, in case anyone has any words of wisdom on how to survive the run up to the scan, and the even worse wait for results.
Thanks!
Roxanne
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- May 28, 2014 at 10:02 pm
Hi Roxanne!
Nobody likes the waiting. It's mind numbing! I think everyone goes a little crazy in the process. I know I do. I I've been trying to keep it together to work and get stuff done for about a week now and my scans are still 12 days off (yes, I know exactly how many days!- it's like that!). The waiting and being in transition can be exhusting!
Although I'm Stage 3c, I know Stage 4 isn't a death sentence. There are too many Stage 4 warriers on this board for me to say that. But I do feel the (potential) transition and this messes with my heart. I'm sure everyone of us has some kind of issues with waiting for scans, or anything for that matter.
I have found that doing centering contemplation / prayer helps. And while it's not a cure all, or fix it (sometimes I come out of it just as anxious as I went in), I think it does help remind me thatI belong, and am loved and cared. And somehow that helps put my heart at ease, even if I forget in my next breath. I find it helps me to lean into my faith and those around me. Maybe there is something that you can do to help remind you, that you too belong and are loved?
Waiting with you,JulieDx 2008, WLE, SNB, LND, HD-INF, GM-CSF. IPI…-
- May 29, 2014 at 12:37 am
Thank you Julie. I've been doing Pilates to unwind and made plans with friends for the evening of my scan (rather than staying home and worrying). It's just such a strange cycle – a period of time every few months where I have to contemplate my mortality. I will say that it has made me see the beauty in the world, and has pushed me to do things I had delayed doing (but always wanted to do).
I find it irritating that everyone (family and friends) tells me "I'm sure it will be fine" and "you have nothing to worry about."
Thanks again,
Roxanne
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- May 29, 2014 at 1:40 pm
I get irritated with those comments also Roxanne !
Then I feel bad because they dont know what to say, and then sometimes I have a beer to try and kill those bad feelings: then I might take an extra pain killer the next day and realize it doesnt work and I go back to normal and start the cycle over.
It is sometimes difficult to manage this disease. It certainly is a strange cycle.
In the beginning, they found it in my spine and it spread to lungs, liver ,and pancreas. I also had a separate thyroid cancer which disqualified me from any trial. Also braf negative.
I ran and jumped into my death bed initially. I figured " thats it".
After awhile I climbed out when I realized it might take awhile and I had to function in this world. Also, reading posts in this forum inspired me to try things and think more positively about life and try to see the beauty in things. I am thankful for all the people that post here.
p.s. I get super anxious just before the scans, I dont know if I can be strapped into an MRI machine
again ! Xanax doesnt even touch my anxiety !
peace
Shane
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- May 29, 2014 at 5:44 pm
Julie and Shane
Somehow, I feel a little better knowing that I'm not the only one that goes crazy before scans, and even crazier waiting for results. I also haven't found any medication that works (except wine). One time, my CT scan technician actually said – "melanoma, at least that one's very treatable." All I could think was, not for the people who have to come in for scans it's not. I wasn't up for a fight, and I didn't set him straight.
So far, I've been lucky, and I am grateful.
Best of luck to you two!
Roxanne
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- May 29, 2014 at 5:44 pm
Julie and Shane
Somehow, I feel a little better knowing that I'm not the only one that goes crazy before scans, and even crazier waiting for results. I also haven't found any medication that works (except wine). One time, my CT scan technician actually said – "melanoma, at least that one's very treatable." All I could think was, not for the people who have to come in for scans it's not. I wasn't up for a fight, and I didn't set him straight.
So far, I've been lucky, and I am grateful.
Best of luck to you two!
Roxanne
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- May 29, 2014 at 5:44 pm
Julie and Shane
Somehow, I feel a little better knowing that I'm not the only one that goes crazy before scans, and even crazier waiting for results. I also haven't found any medication that works (except wine). One time, my CT scan technician actually said – "melanoma, at least that one's very treatable." All I could think was, not for the people who have to come in for scans it's not. I wasn't up for a fight, and I didn't set him straight.
So far, I've been lucky, and I am grateful.
Best of luck to you two!
Roxanne
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- May 29, 2014 at 1:40 pm
I get irritated with those comments also Roxanne !
Then I feel bad because they dont know what to say, and then sometimes I have a beer to try and kill those bad feelings: then I might take an extra pain killer the next day and realize it doesnt work and I go back to normal and start the cycle over.
It is sometimes difficult to manage this disease. It certainly is a strange cycle.
In the beginning, they found it in my spine and it spread to lungs, liver ,and pancreas. I also had a separate thyroid cancer which disqualified me from any trial. Also braf negative.
I ran and jumped into my death bed initially. I figured " thats it".
After awhile I climbed out when I realized it might take awhile and I had to function in this world. Also, reading posts in this forum inspired me to try things and think more positively about life and try to see the beauty in things. I am thankful for all the people that post here.
p.s. I get super anxious just before the scans, I dont know if I can be strapped into an MRI machine
again ! Xanax doesnt even touch my anxiety !
peace
Shane
-
- May 29, 2014 at 1:40 pm
I get irritated with those comments also Roxanne !
Then I feel bad because they dont know what to say, and then sometimes I have a beer to try and kill those bad feelings: then I might take an extra pain killer the next day and realize it doesnt work and I go back to normal and start the cycle over.
It is sometimes difficult to manage this disease. It certainly is a strange cycle.
In the beginning, they found it in my spine and it spread to lungs, liver ,and pancreas. I also had a separate thyroid cancer which disqualified me from any trial. Also braf negative.
I ran and jumped into my death bed initially. I figured " thats it".
After awhile I climbed out when I realized it might take awhile and I had to function in this world. Also, reading posts in this forum inspired me to try things and think more positively about life and try to see the beauty in things. I am thankful for all the people that post here.
p.s. I get super anxious just before the scans, I dont know if I can be strapped into an MRI machine
again ! Xanax doesnt even touch my anxiety !
peace
Shane
-
- May 29, 2014 at 12:37 am
Thank you Julie. I've been doing Pilates to unwind and made plans with friends for the evening of my scan (rather than staying home and worrying). It's just such a strange cycle – a period of time every few months where I have to contemplate my mortality. I will say that it has made me see the beauty in the world, and has pushed me to do things I had delayed doing (but always wanted to do).
I find it irritating that everyone (family and friends) tells me "I'm sure it will be fine" and "you have nothing to worry about."
Thanks again,
Roxanne
-
- May 29, 2014 at 12:37 am
Thank you Julie. I've been doing Pilates to unwind and made plans with friends for the evening of my scan (rather than staying home and worrying). It's just such a strange cycle – a period of time every few months where I have to contemplate my mortality. I will say that it has made me see the beauty in the world, and has pushed me to do things I had delayed doing (but always wanted to do).
I find it irritating that everyone (family and friends) tells me "I'm sure it will be fine" and "you have nothing to worry about."
Thanks again,
Roxanne
-
- May 28, 2014 at 10:02 pm
Hi Roxanne!
Nobody likes the waiting. It's mind numbing! I think everyone goes a little crazy in the process. I know I do. I I've been trying to keep it together to work and get stuff done for about a week now and my scans are still 12 days off (yes, I know exactly how many days!- it's like that!). The waiting and being in transition can be exhusting!
Although I'm Stage 3c, I know Stage 4 isn't a death sentence. There are too many Stage 4 warriers on this board for me to say that. But I do feel the (potential) transition and this messes with my heart. I'm sure everyone of us has some kind of issues with waiting for scans, or anything for that matter.
I have found that doing centering contemplation / prayer helps. And while it's not a cure all, or fix it (sometimes I come out of it just as anxious as I went in), I think it does help remind me thatI belong, and am loved and cared. And somehow that helps put my heart at ease, even if I forget in my next breath. I find it helps me to lean into my faith and those around me. Maybe there is something that you can do to help remind you, that you too belong and are loved?
Waiting with you,JulieDx 2008, WLE, SNB, LND, HD-INF, GM-CSF. IPI… -
- May 28, 2014 at 10:02 pm
Hi Roxanne!
Nobody likes the waiting. It's mind numbing! I think everyone goes a little crazy in the process. I know I do. I I've been trying to keep it together to work and get stuff done for about a week now and my scans are still 12 days off (yes, I know exactly how many days!- it's like that!). The waiting and being in transition can be exhusting!
Although I'm Stage 3c, I know Stage 4 isn't a death sentence. There are too many Stage 4 warriers on this board for me to say that. But I do feel the (potential) transition and this messes with my heart. I'm sure everyone of us has some kind of issues with waiting for scans, or anything for that matter.
I have found that doing centering contemplation / prayer helps. And while it's not a cure all, or fix it (sometimes I come out of it just as anxious as I went in), I think it does help remind me thatI belong, and am loved and cared. And somehow that helps put my heart at ease, even if I forget in my next breath. I find it helps me to lean into my faith and those around me. Maybe there is something that you can do to help remind you, that you too belong and are loved?
Waiting with you,JulieDx 2008, WLE, SNB, LND, HD-INF, GM-CSF. IPI…
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