NEW-Need some positivity here.

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teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Aug 03, 2018 6:46 am

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...
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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horizon
Posts: 1475
Joined: Tue Apr 12, 2011 10:10 pm

Re: NEW-Need some positivity here.

Postby horizon » Fri Aug 03, 2018 8:29 am

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!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?

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susie0915
Posts: 847
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Fri Aug 03, 2018 12:45 pm

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.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

margiej
Posts: 41
Joined: Sat Apr 14, 2018 8:46 am

Re: NEW-Need some positivity here.

Postby margiej » Sat Aug 04, 2018 6:45 am

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
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
NED

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Aug 04, 2018 11:19 am

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?
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: NEW-Need some positivity here.

Postby Shana » Sun Aug 05, 2018 12:01 pm

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 :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Aug 07, 2018 4:33 pm

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.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

heiders33
Posts: 285
Joined: Sat Nov 04, 2017 11:08 am

Re: NEW-Need some positivity here.

Postby heiders33 » Tue Aug 07, 2018 6:08 pm

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.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Aug 07, 2018 7:33 pm

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?
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

heiders33
Posts: 285
Joined: Sat Nov 04, 2017 11:08 am

Re: NEW-Need some positivity here.

Postby heiders33 » Tue Aug 07, 2018 8:39 pm

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.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

DonutHead
Posts: 46
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Tue Aug 07, 2018 10:34 pm

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!
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
- CT - No Mets - Very slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds of 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Wed Aug 08, 2018 4:44 am

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.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Wed Aug 08, 2018 8:57 am

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.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

DonutHead
Posts: 46
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Thu Aug 09, 2018 10:02 am

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!
Male 49 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
- CT - No Mets - Very slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds of 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: PET/CT - NED

teacher2017
Posts: 199
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Aug 09, 2018 1:54 pm

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.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18


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