Scanxiety and 2020

Please feel free to read, share your thoughts, your stories and connect with others!
crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Scanxiety and 2020

Postby crikklekay » Mon Aug 17, 2020 12:32 pm

I am not doing very well today. My husband's second year scan is tomorrow and it just hit me like a ton of bricks. My brain is having a hard time focusing and keeps throwing me flashbacks of being in the hospital. I normally have anxiety issues over tests and scans, but it feels so much worse this time because of what's going on. Like there is now a patina of dread on top of the anxiety? I guess since the news/events so far this year has been so bleak it's making me extra nervous for this scan.

I guess first, does that make sense or am I just crazy? Then second, mainly I'd like to ask for plenty of prayers/good wishes/positive vibes/etc. sent John's way for tomorrow. I know the second year is a milestone, since (at least from what I've read) reoccurrence is most likely the first two years. Please wish us the best of luck!!



PS: It's going to be a long week, why do they make us wait a week for results??
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scanxiety and 2020

Postby stu » Mon Aug 17, 2020 4:58 pm

You got them . Hoping all goes well tomorrow.
I have a strong dislike for scans , despite knowing deep down they have kept my mum alive . But over thirty scans and it leaves a mark ! One thing I have found out , feelings about scans are totally unreliable. Just because you sense foreboding does not mean it is bad news . I have had every emotion know to mankind and thankfully they did not come to fruition.
Hoping it’s good news all the way and we can celebrate with you both .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Scanxiety and 2020

Postby boxhill » Tue Aug 18, 2020 9:19 am

Scanxiety sucks. But one thing about it is that inevitably the scan will be over, and you can relax until the next time.

Hope all goes well today.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Scanxiety and 2020

Postby Gravelyguy » Tue Aug 18, 2020 10:02 pm

One thing that helps me is after my first scans post surgery and treatment, my liver surgeon told me the reason they do scans is to see things early so that they can deal with them. He also told me that I was one of the lucky ones. Many stage 4 patients they don’t do scans because if it comes back there is nothing they can do.

It really helped me and to be honest, my wife have some peace.

Prayers that the results are good!

Save
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Scanxiety and 2020

Postby crikklekay » Wed Aug 19, 2020 6:47 am

Thanks everyone <3 John took the day off yesterday since he was unsure how long the scan would take. I’m glad he did, since I work from home that meant we could spend lunch together and having him close by helped. My brain is more likely to fully descend into the anxiety spiral when I’m alone. Now we wait. :|

Stu, your comment really helped to ground me. Knowing you’ve had the same dread feeling and were wrong 30 times is wonderful. I hope we can have the same track record!

Thanks for the well wishes boxhill, I hope that is the case! I just wish we didn’t have to wait a week for results, and even then I won’t be allowed to come to find out the results. I’ve threatened to make John FaceTime me for the whole thing so I don’t have to wait haha.

Gravelyguy that is true, and I know the slacking off on tests is supposedly a good thing because everything looks to be on track but I would feel better if he had gotten a colonoscopy this year. But everything looked so good last year they said all he needed this year is his yearly CTscan. As much as tests and scans churns my stomach I feel better after knowing everything looks okay. It’s the not knowing that gets me.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Sonofafighter
Posts: 16
Joined: Sun Nov 17, 2019 1:19 am

Re: Scanxiety and 2020

Postby Sonofafighter » Wed Aug 19, 2020 5:14 pm

crikklekay wrote:I am not doing very well today.....


I get scanxiety worse than my poor dad who who has to go through with it. I know what you feel.

I have General Anxiety disorder, and the unknown scares the crap out of me. Dad had a scan today (2 year as well).

His last scan showed tiny (largest 3 or 4mm) nodules on one lung. Did a PET within a month of that in a seperate facility and no uptake. Latest CEAs have been trending down since then, not drastically, but CEA not going up since surgery(s), i take as a win.

All of this is positive, but the anxiety is still there (that thought : what if something bad happened in the last 6 months) and hits and numbs me when i least expect. I understand you and wish I could give you a hug to let us both know we are not alone.

In my case I feel its down to the GAD and my very sensitive nature. We are humans after all and deeply care about our loved ones, but have to remember we cant control anything that will show up- but the fact that we will know the next step is only helpful no matter the outcome

Meditation has helped me recently, and this forum and all the positivity and the great news shared by members puts me in a good headspace. I pray your husband and my dad get the best news possible next few days.

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Scanxiety and 2020

Postby crikklekay » Wed Aug 19, 2020 8:31 pm

Sonofafighter wrote:All of this is positive, but the anxiety is still there (that thought : what if something bad happened in the last 6 months) and hits and numbs me when i least expect. I understand you and wish I could give you a hug to let us both know we are not alone.


My goodness yes, you are exactly right! Sometimes it does just come out of no where, like before I made this thread, slamming into my brain like a freight train. My husband is completely nonplused and reassuring me everything is going to be fine. I hope he’s right and all of my anxiety is over nothing. I wish we could give each other hugs, it’s nice to feel understood and not alone. I don’t really have any friends or family I can talk to so this board is a blessing.

I’m fostering a mama cat and her litter of kittens right now and find being with them to be soothing. May we both get the best possible news in the near future!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Nordy1
Posts: 44
Joined: Tue Oct 02, 2018 11:45 pm

Re: Scanxiety and 2020

Postby Nordy1 » Fri Aug 21, 2020 11:15 am

Hi Crikklekay
Itake tough to watch someone you love go through something and feel so helpless. I’ve often thought the whole cancer thing is harder on my family then it is on me. I try to make myself really busy with something for a few days before and it does help but I still get unexpected weird little waves of panic or anxiety sneak up on me and kind of bubble over- even when I’m not thinking about it.

I just completed my ct scan yesterday and now I sit and wait - I made a request for the Dr to call me with results but I’m not sure if they will and that means waiting 2 weeks - and that sucks.

I watch Big Bang theory and they referred to Schrodingers box and it struck me that it was very much like waiting for ct results. - you are both with cancer and without cancer, both possibilities exist equally until you get the results of your test.

I’m 2.5 years into this cancer stuff and it’s honestly getting easier - anyone I’ve spoke with going through this has said they experience some degree of anxiety but at some point you make peace with it.

I hope it continues to improve with you and your dh- all the best on your results.

Nordy1
I really need to update my signature
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Scanxiety and 2020

Postby DarknessEmbraced » Sat Aug 22, 2020 12:53 pm

It makes sense to be worried. *hugs* I hope he gets good scans.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Scanxiety and 2020

Postby crikklekay » Tue Aug 25, 2020 4:09 pm

John just got back from his appointment, the paperwork says no evidence of metastatic disease! I'm so relieved! Though there was a line on the report that I'm confused about, I wasn't sure if anyone has come across this before?

"A few tiny sub-5mm pulmonary nodules are likely unchanged, primarily apparent on MIP images which are not available previously"

I tried calling the nurse and she just said "it says unchanged" which is not helpful because it sounds like they don't know for sure? And I'm not sure what an MIP is, Google has been less than helpful. I looked at his previous CT scans and none of them mention lung nodules so I would like some clarity.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Scanxiety and 2020

Postby juliej » Tue Aug 25, 2020 5:07 pm

crikklekay wrote:John just got back from his appointment, the paperwork says no evidence of metastatic disease! I'm so relieved! Though there was a line on the report that I'm confused about, I wasn't sure if anyone has come across this before?

"A few tiny sub-5mm pulmonary nodules are likely unchanged, primarily apparent on MIP images which are not available previously"

I tried calling the nurse and she just said "it says unchanged" which is not helpful because it sounds like they don't know for sure? And I'm not sure what an MIP is, Google has been less than helpful. I looked at his previous CT scans and none of them mention lung nodules so I would like some clarity.

MIP imaging is used with both CT and PET scans. It's a simple three-dimensional visualization of the data, so nodules stand out and are easier to see.

Since these are very tiny nodules and unchanged, the odds are they are simply lung "junk." We breathe stuff into our lungs all the time - tiny gnats, grass clippings, debris, etc. - and our lungs seal off these foreign objects. So it's not uncommon in gardeners, bicyclists, runners, people who work outside, etc. to have tiny benign nodules in their lungs. You often find this out when you get a CT scan for the first time in your life.

The important thing is that the report says there is no evidence of metastatic disease. If the radiologist thought the nodules were worrisome, he would have flagged them as "concerning" for metastatic disease. So everything is just fine! One of the hardest things about being a cancer survivor is knowing when to worry and when to let things go. This is a "let it go" moment. In fact, it's time to celebrate!!! :D

Hope this helps!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Scanxiety and 2020

Postby CRguy » Thu Aug 27, 2020 1:17 am

juliej wrote:One of the hardest things about being a cancer survivor is knowing when to worry and when to let things go. This is a "let it go" moment. In fact, it's time to celebrate!!! :D
Hope this helps!
Juliej


crikklekay my friend
When someone like JJ gives you THIS kind of nugget
... it IS gold

Cheers and Harmony on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 123 guests

cron