The Liver Spots they missed

[TestTheyDontStop]

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

[Rock_Robster]

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

[Rock_Robster]

[duplicate post - deleted]

[Vana3]

I don’t know how to tag someone but Malidosa was just asking about differences in CT scan versus MRI....

[Vana3]

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.

[TestTheyDontStop]

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.

[Vana3]

[
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...

[radnyc]

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.

[boxhill]

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.