The Colon Club

Posted: **Sun Aug 26, 2018 8:21 am**

Hello all,

We're having our first post-surgery, post-6 rounds of Folfox+Avastin on September 5th and oh! the anxiety.

I know this has been covered extensively before, so apologies for another post about that.

Rationally, I know the bad news won't be as bad as last time ("you have metastatic cancer"): my mum's CEA has been plummeting since the start of chemo (it was down by over 80% by the beginning of the 5th cycle).

The oncologist is treating my mum's cancer as a chronic illness because of the extensive lesions in her liver (the biggest being 10-12 cm in diameter) (she's tiny so how does it even fit in there!) (another mystery). I had a minute with him alone the other week and asked him if there was a chance we could consider surgery and he said that it would consider it a miracle if we could.

I am trying to keep hopeful but it's tough at times. I know forum member stu (legend) had a similar history and was wondering if anyone else found themselves in a similar situation,what the oncologist said, and whether the CEA situation won't make a difference.

Thank you so much.

Posted: **Sun Aug 26, 2018 8:38 am**

Welcome.

We are sorry that circumstances have brought you here, but this is a great place to understand the new normal your Mum is about to experience. Like Stu, we are all here under similar circumstances and are walking the same path. Together we are all learning from each other's treatments and experiences. Like you, I am caregiver and your role is important understanding the treatment options and journey to best support your Mum's treatments.

Use the search engine under "Quick Links" to learn more about specific issues related to your Mum's specific condition. This search bar was one of my best tools to learn from others. We are here when you need advice and support.

Best Wishes.
WS

Posted: **Sun Aug 26, 2018 9:53 am**

WarriorSpouse wrote:... Use the search engine under "Quick Links" to learn more about specific issues related to your Mum's specific condition. This search bar was one of my best tools to learn from others...

Yes, the Search engine is a very good tool to use here, but it has its limitations. For example, the search key-words must be at least 4 alphanumeric letters long. The search engine cannot search for any 3-letter or 2-letter key words.

For example, it cannot search specifically for CEA, which is one of the most commonly discussed topics here. Likewise, it cannot search for any of the other 3-letter words we might want to search for, such as any of those below:

ACS
ACT
ADC
ADL
ADR
AFP
AKT
ALA
ALK
ALP
ALS
ALT
APC
APR
ARS
ASA
AST
ATM
AXR
BID
BMI
BMP
BSA
BTW
BUN
CAA
CAM
CAT
CBC
cCR
CEA
CHF
CJP
CMP
COL
CRC
CRM
CRP
CRT
CTC
CUP
CXR
DCR
DFS
DIC
DNA
DOG
DRE
DSS
DVT
ECG
EKG
ECI
EMR
ESR
EUS
FAP
FBC
FDG
FIL
FIT
FLV
FOS
FTD
FYI
GBP
GCT
HCC
Hct
HFS
HRT
HTH
HUS
IBD
IBS
ICU
IHC
INR
IRA
LAR
LBO
LDH
LDM
LEF
LFS
LLL
LUL
mAb
MCH
MCV
MDA
MEK
mEq
MET
Met
MIL
MMR
MPV
MRD
MRI
MSI
MSS
MTD
NED
nib
NIC
NPO
OMG
ONC
OTC
Oxi
PCA
PCI
PCP
pCR
PDT
PET
PFS
POd
POG
PPI
PRN
PRP
PSD
PSK
PTT
PVE
PVE
QID
QOD
QOL
RBC
RCa
RDI
RFA
RIT
RLL
RNA
RRX
RUL
SBO
SCC
SIL
SPS
SRC
SSA
SSO
SUV
SVC
TBH
TBT
TEM
TID
TIL
TIL
TLR
TME
TNM
TPE
TPI
TPN
TPS
TSH
URI
USd
UTI
WNL
XRT

Posted: **Mon Aug 27, 2018 7:16 am**

Thank you for your words. Yes, I've been on the board since June and have been using the search function extensively but I couldn't find anything specifically related to this (a connection between a big drop in CEA numbers with a dramatic reduction in liver mets) so wanted to ask about personal experiences from current forum users, as I guess CEA dropping won't necessarily make a tumour operable. Thank you

Posted: **Mon Aug 27, 2018 9:13 am**

How old is your mom?
800 is still a horribly elevated CEA. Has she had a PET Scan? Depending on her age and prior health or other health issues, I would request one.

Re the 10 to 12 cm liver tumor: Each radiologist measures differently. This sounds like a 'round off' kind of doctor. 1.5 cm is about the size of a dime. I have four small lung nodules that 'haven't changed in almost 10 years'. However, the one that is the largest might be read as a 5mm or a 6mm by 4mm, 3mm x 6mm depending on the reader. I went back over the 25 or more CT scans I've had and every person read it differently. Up and down, up and down. A friend who is a well renowned oncologist in Australia told me to take a ruler with mm on it and measure my pinkie fingernail 5 times in one day, about 2 hours apart and write down what I got. Almost every reading was different! He said it depends on where the ruler was put, how it was held, even if the radiologist had just gotten up, had a few cups of coffee, was rushed, etc.

Wishing you good news! I've not kept up with chemo news since I've not had it for over 9 years now and am surprised to see only 6 treatments!

Diane

Posted: **Mon Aug 27, 2018 9:45 am**

Congratulations on your NED status, and thank you for your reply. My mum is 65 years old and didn't have any major medical history, save for a stroke last year. She did not have a PET scan, she had an MRI which evidenced the 10cm lesion, while the CT scan summary said 12.

Wishing you health and happiness

Posted: **Mon Aug 27, 2018 10:16 am**

dliu wrote:Thank you for your words. Yes, I've been on the board since June and have been using the search function extensively but I couldn't find anything specifically related to this (a connection between a big drop in CEA numbers with a dramatic reduction in liver mets) so wanted to ask about personal experiences from current forum users, as I guess CEA dropping won't necessarily make a tumour operable. Thank you

Posted: **Mon Aug 27, 2018 11:31 am**

Thank you, O Stoma Mia! Some of these have excellent insight!

Posted: **Mon Aug 27, 2018 12:03 pm**

Ahh, I know what you mean! We had our pre-last-chemo-treatment scan on Wednesday day and will receive the results tomorrow. Scanxiety is awful but I've found keeping busy helps, especially if you can hang out with friends/family. The worst of the anxiety hits me when I'm alone and my brain has the opportunity to wonder. I hope the test comes back with good results!!

Posted: **Mon Aug 27, 2018 3:52 pm**

crikklekay wrote:Ahh, I know what you mean! We had our pre-last-chemo-treatment scan on Wednesday day and will receive the results tomorrow. Scanxiety is awful but I've found keeping busy helps, especially if you can hang out with friends/family. The worst of the anxiety hits me when I'm alone and my brain has the opportunity to wonder. I hope the test comes back with good results!!

Best of luck tor tomorrow. You and your husband will be in my thoughts, hoping for a positive outcome.

Posted: **Mon Sep 03, 2018 3:44 pm**

I hope your mother gets good scans!*hugs*

Posted: **Mon Sep 03, 2018 5:40 pm**

Hello ,
I have actually only just read your post . The scans are just horrible and I have no idea how my mum has endured over 25 . We have both been cleaning furiously our homes today ... scanning tomorrow !!! The mind games we play . I can’t say it gets easier but you get better at surpressing anxiety .
My mum was 67 at diagnosis. My husband was working in the next theatre to where my mum was being scanned . A friend came in and suggested he joins us for the results . I will never forget the look in his eyes . He had seen her scans and the full reality was written painfully in his eyes . I knew she was in trouble .
My sister sat composed and relevant throughout the meeting and the surgeon commented to my husband how focused she had been during the blow by blow account of her scans . She later told me that he had not seen her later as she tried to climb her stairs and the full impact was hitting her .
Her oncologist hammered home the severity till it was almost impossible to listen as he dismantled her future . However despite a significant spread , a poor prognosis and every last piece of reality being forced home some people are just great responders to treatment and slowly but steadily the tumour burden reduces . Other treatment options come into play . Remarkably my mum has only ever had twelve cycles of chemo in nine years . Her team have mainly retired and junior doctors at the start are now her consultants . They enjoy seeing her in clinic . Not always good news but probably the most remarkable thing my mum has not had any symptoms from the actual cancer . Picked up on a screen and had horrible side effects from treatment .
Your Doctor is correct in that he may not see it often but it does sometimes happen and someone has to be that person !
I wish your mum every success with her scans . At least the CEA is heading down .
Stu

Posted: **Thu Sep 06, 2018 8:13 am**

stu, how was your mum's scan on Tuesday? I kept my fingers crossed for you, for it to be all nice and clear again.
Thank you for such a sweet message. Despite all the pain you and your family had to go through, it made me feel hopeful. Your mum's an absolute soldier.

CEA still heading down (now 600) - our oncologist saw the scan but didn't have the previous scan to compare it to, so he'll give us a more detailed briefing once he gets the full results (on the 10th). He seemed quite satisfied, says the liver mets are necrotic or getting necrotic. He is not able to tell us how much shrinkage yet so didn't want to be inaccurate, but is positive there was some. I'll be very nervous until after the 18th, when we get the tests, but at least we had some good news!

What left me wondering though is that he said after these 12 cycles of FOLFOX we won't be doing any oral therapies but just watch and wait. I have no experience of anyone doing this (especially at such an advanced stage, like my mum) so although he said it as good news, I started being paranoid. He's a bit poker-faced to my mum because she wants to know as little as possible about the illness, so he might be biding time. But it did make me wonder...

Hope you bring back good news, stu!

Posted: **Thu Sep 06, 2018 9:10 am**

Her scan went well . Thank you for asking . However no idea what it showed as we have a staffing crisis and our scans are being sent to other countries to be interpreted!!! Jings Not has this before . Maybe get the results next month . So it’s off on holiday for her and forget all about it for a while . Her GP will alert her if they come through !!
I know exactly what they will say too as her other scan has two nodules on it and if they are looking in isolation they will flag them !!
Your mum sounds as though she is heading in the right direction . How good is that . She can always add another clinicians opinion through time . Enjoy the good news .
Stu

Posted: **Thu Sep 06, 2018 9:11 am**

Her scan went well . Thank you for asking . However no idea what it showed as we have a staffing crisis and our scans are being sent to other countries to be interpreted!!! Jings Not has this before . Maybe get the results next month . So it’s off on holiday for her and forget all about it for a while . Her GP will alert her if they come through !!
I know exactly what they will say too as her other scan has two nodules on it and if they are looking in isolation they will flag them !!
Your mum sounds as though she is heading in the right direction . How good is that . She can always add another clinicians opinion through time . Enjoy the good news .
Stu

The Colon Club

Scanxiety Part 1000

Scanxiety Part 1000

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CEA is a three-letter word

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Re: Scanxiety Part 1000

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