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Re: NEW-Need some positivity here.

Posted: Fri Aug 03, 2018 6:46 am
by teacher2017
Hi all-
Just wanted to know when this scananxiety will end!?! I’m so terrified - this scan is tomorrow and it feels like I’m newly diagnosed. I think of reoccurence and surgery and chemo and it makes me want to throw up! What do you do to keep yourself from thinking the worst? I feel fine but we all know Some people have cancer and feel fine. I need this nightmare to end. Those LNs just make me crazy! I don’t see a lot of people on this board with lots of LNs involved. Are they dead? I need to run and breathe...

Re: NEW-Need some positivity here.

Posted: Fri Aug 03, 2018 8:29 am
by horizon
teacher2017 wrote:Hi all-
Just wanted to know when this scananxiety will end!?! I’m so terrified - this scan is tomorrow and it feels like I’m newly diagnosed. I think of reoccurence and surgery and chemo and it makes me want to throw up! What do you do to keep yourself from thinking the worst? I feel fine but we all know Some people have cancer and feel fine. I need this nightmare to end. Those LNs just make me crazy! I don’t see a lot of people on this board with lots of LNs involved. Are they dead? I need to run and breathe...


For me it got better the further I got from my diagnosis. About people posting you have to keep in mind that some people stop posting after they become NED. Good luck!

Re: NEW-Need some positivity here.

Posted: Fri Aug 03, 2018 12:45 pm
by susie0915
I understand, I still get anxious when scan time comes. I am hoping it will get better with time. Positive thoughts coming your way for a clean scan.

Re: NEW-Need some positivity here.

Posted: Sat Aug 04, 2018 6:45 am
by margiej
Sending out positive vibes that you receive good news from your scan. I am two years out from the end of chemo. My next scan will be in September/October and it's a daily effort to tamp down the anxiety. Every odd feeling or pain or cough sets off a tiny alarm, but I take a breath and try to carry on. Staying busy helps along with yoga and meditation.
Peace,
Margie

Re: NEW-Need some positivity here.

Posted: Sat Aug 04, 2018 11:19 am
by teacher2017
Thank you all for the well wishes. Just completed the scan. The blood work came back normal. No cea level yet. But I was happy to hear that. I just don’t understand how the blood works can show normal and sometimes the scan can still show mets. Can someone explain that one?

Re: NEW-Need some positivity here.

Posted: Sun Aug 05, 2018 12:01 pm
by Shana
Good luck with the remaining test results! I hope everything comes back normal and clean as a whistle so you can continue to enjoy your summer!

I have no idea how bloodwork can look perfect when there are mets and rising CEA but that's how mine has been for awhile now. I've never been NED so I'm grateful for good bloodwork at least :)

Re: NEW-Need some positivity here.

Posted: Tue Aug 07, 2018 4:33 pm
by teacher2017
Very upset. Ctscan said 1 cm spot on liver not sure if it’s cancer or a cyst. It wasn’t there in September. MRI needed - getting it Thursday. I could just throw myself off a bridge. I can’t get a freaking break.

Re: NEW-Need some positivity here.

Posted: Tue Aug 07, 2018 6:08 pm
by heiders33
I am in your exact same shoes. Mine is probably cancer and I'll have to have it surgically removed. I know it feels like you can't catch a break, but you don't know for sure if it's cancer yet, and it's better to know now than later. It's frustrating, right, since we just ended treatment recently. Good luck with the MRI.

Re: NEW-Need some positivity here.

Posted: Tue Aug 07, 2018 7:33 pm
by teacher2017
heiders33 wrote:I am in your exact same shoes. Mine is probably cancer and I'll have to have it surgically removed. I know it feels like you can't catch a break, but you don't know for sure if it's cancer yet, and it's better to know now than later. It's frustrating, right, since we just ended treatment recently. Good luck with the MRI.


Some things I wanted to share- Onc said that Cea level is low so it is rare that a spot would exist. It could be a cyst, hematoma or actually cancer. A hematoma can happen after heavy meds like chemo. Also there was no lymph activity in the ctscan. People sometimes have cysts in their liver. Period. I also was told by the Onc thst colon cancer in the liver is curable if caught early enough. What did the dr say to you?

Re: NEW-Need some positivity here.

Posted: Tue Aug 07, 2018 8:39 pm
by heiders33
I haven’t met with my doctor yet, he is out of the country. I see both him and the liver surgeon on Monday. After the CT scan he said that it was concerning because the spot wasn’t there a year ago. He also said it could be removed surgically if needed. He also said at the time it could be benign because my blood levels are all normal. But then the PET came back abnormal. That’s all I know right now.

Re: NEW-Need some positivity here.

Posted: Tue Aug 07, 2018 10:34 pm
by DonutHead
teacher2017 wrote:
heiders33 wrote:I am in your exact same shoes. Mine is probably cancer and I'll have to have it surgically removed. I know it feels like you can't catch a break, but you don't know for sure if it's cancer yet, and it's better to know now than later. It's frustrating, right, since we just ended treatment recently. Good luck with the MRI.


Some things I wanted to share- Onc said that Cea level is low so it is rare that a spot would exist. It could be a cyst, hematoma or actually cancer. A hematoma can happen after heavy meds like chemo. Also there was no lymph activity in the ctscan. People sometimes have cysts in their liver. Period. I also was told by the Onc thst colon cancer in the liver is curable if caught early enough. What did the dr say to you?


You don't know until you know! This is not easy, will get better with time, but will always be difficult. Do not sell yourself yourself short, not now. You caught your first break when you found it the first time. The next break came when you were NED after surgery then chemo and your last scans. No matter what it is, you caught a break by identifying and dealing with whatever it is before it had the chance to go bad on you. you got this!

Re: NEW-Need some positivity here.

Posted: Wed Aug 08, 2018 4:44 am
by teacher2017
DonutHead wrote:
teacher2017 wrote:
heiders33 wrote:I am in your exact same shoes. Mine is probably cancer and I'll have to have it surgically removed. I know it feels like you can't catch a break, but you don't know for sure if it's cancer yet, and it's better to know now than later. It's frustrating, right, since we just ended treatment recently. Good luck with the MRI.


Some things I wanted to share- Onc said that Cea level is low so it is rare that a spot would exist. It could be a cyst, hematoma or actually cancer. A hematoma can happen after heavy meds like chemo. Also there was no lymph activity in the ctscan. People sometimes have cysts in their liver. Period. I also was told by the Onc thst colon cancer in the liver is curable if caught early enough. What did the dr say to you?


You don't know until you know! This is not easy, will get better with time, but will always be difficult. Do not sell yourself yourself short, not now. You caught your first break when you found it the first time. The next break came when you were NED after surgery then chemo and your last scans. No matter what it is, you caught a break by identifying and dealing with whatever it is before it had the chance to go bad on you. you got this!


I am just so scared. I’m tired of hoping for the best and getting the worst. This could result in surgery, radiation and more chemo. I can’t fathom it. This affects every aspect of my life. Work. My kids. My husband. If it was only a simple cyst the scan would have said so and it will only be watched. But there is no other sign it is cancer????? The Cea level is 2.1!!!! How can it be? No on lymph involvement on the scan either. WTF?? But I’m sick of all this. I need to breathe. It doesn’t help that I have the worst luck. The disappointment is just exhausting.

Re: NEW-Need some positivity here.

Posted: Wed Aug 08, 2018 8:57 am
by susie0915
I know this is discouraging. First, it may not be cancer, and second if it is, there are many that have had surgery for liver mets and have ned since. I am going to pray that your spot is just a cyst. Please try and not stress too much. I tell my husband all the time, every time I start to become a little comfortable in my life after treatment, something medical comes up that gets in my head. Sending you positive thoughts and hugs.

Re: NEW-Need some positivity here.

Posted: Thu Aug 09, 2018 10:02 am
by DonutHead
teacher,

any updates? you are definitely in our prayers. i am in the process of scheduling my first 6 month check up for mid september. had to come to oman for a few days of diving to get my own head straight.

you know, all of this had made me realize that i am not as invincible as i always thought. but the thing to rememer is that we are alive! we must embrace every moment that we have that much more!

hope you getting the answers we all want to hear!

Re: NEW-Need some positivity here.

Posted: Thu Aug 09, 2018 1:54 pm
by teacher2017
DonutHead wrote:teacher,

any updates? you are definitely in our prayers. i am in the process of scheduling my first 6 month check up for mid september. had to come to oman for a few days of diving to get my own head straight.

you know, all of this had made me realize that i am not as invincible as i always thought. but the thing to rememer is that we are alive! we must embrace every moment that we have that much more!

hope you getting the answers we all want to hear!


Hi-
I have an MRI this evening and hopefully I’ll get an answer tomorrow. I’m resigned to think it’s cancer just because I have really bad luck. I still can’t understand how everything looked okay since surgery and this comes up now. I’ll keep everyone posted.