The Liver Spots they missed

Please feel free to read, share your thoughts, your stories and connect with others!
TestTheyDontStop
Posts: 5
Joined: Tue Jul 30, 2019 6:52 pm
Facebook Username: Shane Boyle

The Liver Spots they missed

Postby TestTheyDontStop » Mon Jan 06, 2020 9:59 pm

I have posted in the past about a creeping normal range CEA level but now need some more encouragement but also to see if anyone else had this same kinda situation......Grateful for any insight or stories....

So long story short, I was 38 years old I had a colonoscopy 6/19 which found my colon cancer. Had 2 CAT scans one of my abdomen, which barely picked up my cancer in my colon and my liver was “clear” they said and a CAT scan of lungs that was all clear. So had the surgery of my colon 2’ removed 19/32 lymph nodes had cancer microscopic in them along with colon the tumor pushed thru microscopically. My surgeon was very surprised had bad it was. So Chemo it was from 9/19 to 2/19. Finished Chemo thinking it was all good but then had a CAT scan on 3/19 a month after I finished chemo and that’s when the crap hit the fan!!!! The CAT scan showed spots on my liver!!!!! The person reading the scan went back to the scan before surgery and wrote these spots were never reported and were there!!!! So 6 months later 1 PET scan and 2 MRI’s I was sent to see an amazing surgeon at White Plains Hospital (Dr. Roayaie) who cut out 4 tumors and did ablation on 3 small spots that may or may not have been cancer. He did not remove either the right/left lobe he just cut out the cancer. He wanted to keep as much as my liver for future issue if cancer ever pops it’s ugly head again.
So Nov 2019 I started my 12 rounds of Chemo, had scans prior of the Chemo but after surgery which were NED!!!! Next scans are Jan 15.

Any responses would be very appropriated....... thank you
Stage 3C Colon Cancer 19/32 Nodes involved 7/2019
7/19 CEA 2.5 before surgery
12 Rounds Chemo 8/19-2-19
CT Scan after Chemo found spots never reported on 7/19 Scan (Not Happy!!!!!)
Stage 4 Liver Mets that was there pre 7/2019 Sugery
Liver Surgery 9/2019 (4 spots cut out, 3 small spots ablation) Left both right/left lobe
11/19 MRI of Abdomen and Pelvic (NED)
11/19 CT Scan Lungs (NED)
CEA 2.1

Rock_Robster
Posts: 425
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: The Liver Spots they missed

Postby Rock_Robster » Tue Jan 07, 2020 1:34 am

Hi, sorry to hear this but great that they could operate promptly. I had a similar issue - not for my initial diagnosis, but shortly after my rectal resection. An abdo CT scan said ‘all clear’, a PET said ‘something fishy’, then a liver MRI found a small met hiding near the hepatic vein. Fortunately my docs were thorough with the scans and after some chemo it was able to be resected. When they went back to the CT they could see the spot, but it was so poorly imaged as to not be picked up by the radiologist at the time. Unfortunately there’s a difference in accuracy using scans to correlate/confirm a diagnosis, vs discovery for new stuff. Also different imaging modes work better in different organs - CTs & livers are particularly inaccurate apparently, and so now I have dedicated liver MRIs as part of my surveillance. They’re long and expensive, but in my case worth it.

Cheers
Rob
Last edited by Rock_Robster on Tue Jan 07, 2020 1:37 am, edited 1 time in total.
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Stoma reversal booked

Rock_Robster
Posts: 425
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: The Liver Spots they missed

Postby Rock_Robster » Tue Jan 07, 2020 1:36 am

[duplicate post - deleted]
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Stoma reversal booked

Vana3
Posts: 24
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: The Liver Spots they missed

Postby Vana3 » Tue Jan 07, 2020 10:25 pm

I don’t know how to tag someone but Malidosa was just asking about differences in CT scan versus MRI....
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
Negative for PC
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS, KRAS g12d, Braf WT
Mutational burden: 10.9
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin added on 9/18
1/02/20 CEA 3.6

Vana3
Posts: 24
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: The Liver Spots they missed

Postby Vana3 » Tue Jan 07, 2020 10:30 pm

I am so glad you are NED right now! I was also misdiagnosed in the beginning, told I was NED after surgery. then switched doctor who promptly ordered MRI and PET scan, and found a few small spots on liver. I am currently doing my first set of chemo just finished treatment #10 and waiting for scan results. I don’t have any advice but we have some similar stuff and I will be sending you good thoughts.
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
Negative for PC
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS, KRAS g12d, Braf WT
Mutational burden: 10.9
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin added on 9/18
1/02/20 CEA 3.6

TestTheyDontStop
Posts: 5
Joined: Tue Jul 30, 2019 6:52 pm
Facebook Username: Shane Boyle

Re: The Liver Spots they missed

Postby TestTheyDontStop » Sun Jan 12, 2020 10:21 am

Vana3 wrote:I am so glad you are NED right now! I was also misdiagnosed in the beginning, told I was NED after surgery. then switched doctor who promptly ordered MRI and PET scan, and found a few small spots on liver. I am currently doing my first set of chemo just finished treatment #10 and waiting for scan results. I don’t have any advice but we have some similar stuff and I will be sending you good thoughts.


Thank you for responding!!!!!! It’s sounds like we are very alike with our cancer. I was originally diagnosed with 3C colon cancer T4N2M0 but really I was stage 4 all along. Are you or have you had a liver resection? I had an amazing surgery in Sept of 2019 with the liver Mets. On the 15th of Jan. I get scanned again and meet with my surgeon who did the liver surgery. I did not get a resection he actually cut the tumors out and did Ablation on the spots that were too small which may have not of been cancer. He wanted to save as much of my liver as he could so that in the future if spots were to grow again I have more options with my liver. But fingers crossed I do not need anymore surgery. Chemo is a lot tougher this time around but hey I’m still here!!!! How is chemo going for you? Also I know it’s hard to look into the future but I have seen many stage 4 people on here that are 5+ years cancer free which should give us hope. Thank you again for responding and I wish you well.
Stage 3C Colon Cancer 19/32 Nodes involved 7/2019
7/19 CEA 2.5 before surgery
12 Rounds Chemo 8/19-2-19
CT Scan after Chemo found spots never reported on 7/19 Scan (Not Happy!!!!!)
Stage 4 Liver Mets that was there pre 7/2019 Sugery
Liver Surgery 9/2019 (4 spots cut out, 3 small spots ablation) Left both right/left lobe
11/19 MRI of Abdomen and Pelvic (NED)
11/19 CT Scan Lungs (NED)
CEA 2.1

Vana3
Posts: 24
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: The Liver Spots they missed

Postby Vana3 » Sun Jan 12, 2020 9:07 pm

[
Thank you for responding!!!!!! It’s sounds like we are very alike with our cancer. I was originally diagnosed with 3C colon cancer T4N2M0 but really I was stage 4 all along. Are you or have you had a liver resection? I had an amazing surgery in Sept of 2019 with the liver Mets. On the 15th of Jan. I get scanned again and meet with my surgeon who did the liver surgery. I did not get a resection he actually cut the tumors out and did Ablation on the spots that were too small which may have not of been cancer. He wanted to save as much of my liver as he could so that in the future if spots were to grow again I have more options with my liver. But fingers crossed I do not need anymore surgery. Chemo is a lot tougher this time around but hey I’m still here!!!! How is chemo going for you? Also I know it’s hard to look into the future but I have seen many stage 4 people on here that are 5+ years cancer free which should give us hope. Thank you again for responding and I wish you well./quote]

I just had my first appt. at MSK about liver surgery this past week along with scans which showed continued good response to chemo (thank you universe!)..... They believe I will be a candidate for a surgery that sounds almost exactly like yours! Maybe ablation too? but I need to wait to hear what their Tumour Board thinks. (Fingers crossed!)
Chemo is ok, feeling a bit worn out from it, the neuropathy became pretty bad so we stopped Oxi after cycle 8. we are switching over to maintenance with Xeloda and I feel nervous about that change.... How was recovery from your surgery? How long was your hospital stay? I will be sending you good thoughts for positive scan results! Scananxiety is so real....give yourself lots of good care...
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
Negative for PC
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS, KRAS g12d, Braf WT
Mutational burden: 10.9
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin added on 9/18
1/02/20 CEA 3.6

radnyc
Posts: 424
Joined: Tue Apr 06, 2010 6:32 pm

Re: The Liver Spots they missed

Postby radnyc » Mon Jan 13, 2020 10:37 am

Looks like the treatment protocol was followed. 19 of 32 positive nodes is a lot, usually means cancer has spread beyond the original spot. Sometimes tumors are missed as they are too small or diffused and only become apparent with time. They can’t treat what they can’t see. I probably had a couple of small liver mets at first that did not show up but the doctors were suspicious and kept an eye on it. I only had 2 of 17 positive lymph nodes. It also looks like your CEA is not a useful marker as it was low, and well within normal before and after surgery. CT and PET scans are they way to go for surveillance in your case. Seems you’re on the right path, good luck.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

boxhill
Posts: 436
Joined: Fri Apr 06, 2018 11:40 am

Re: The Liver Spots they missed

Postby boxhill » Tue Jan 14, 2020 10:11 pm

My pre-surgery CT scan showed a perfectly clear liver. My Surgeon found a subcapsular mass and removed it for biopsy. It was a met. Next 2 CT scans continued to show clear liver. When I finally was able to have an MRI after finishing chemo, it picked up another little subcapsular mass and 2 malignant lymph nodes in the porta hepatis. Post Keytruda, my new insurance company REFUSES to allow me to have another MRI. Assholes. Enhanced form of CT shows same liver mass, but lymph nodes gone. But who knows what is really there? I hate those bastards at Anthem, and even more so the jerks at the company they use to screen requests for treatments and scans. They kept me in agonizing pain for 2 months holding up my Celebrex prescription.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
Neulasta 6/28
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes 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: many fails before Celebrex helps
12/23/19 CT stable


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



Who is online

Users browsing this forum: Jolene, Majestic-12 [Bot] and 36 guests