Introduction, Sharing experience and some help

 Hello All,

I've recently come across the CSN and Finally gathered the courage to share the story of my Father.  I hope that this will provide me strength and help others dealing with the situations if there they ever come across as we were. I am writing all the details so it will be a long story.

It all started right after our baby shower in January 2019 when my father (64 years) first felt abdominal pain. Upon inspection, his primary care provider sent us to an emergency who suspected gall-bladder infection due to right abdominal pain. We spent the whole day at emergency, at first, the doctor in charge said that we’ll do a CT scan but they ended up doing an ultrasound and my father was discharged with a diagnosis of “abdominal gas”. So with some laxatives, his pain was relieved but he was bleeding when he passes stool. During the same time, my wife detected Hemorrhoids so we thought my father might have the same thing. His primary care did suggest Colonoscopy but didn’t really educate us about the purpose nor really pushed us for it. Still, it was my fault for not doing it early, wish I could change that but there is no going back. So few months passed by and he complained about blood again and that’s when I started researching online and what I found out was scary. We scheduled his colonoscopy for 25^th July 2019, his GI couldn’t complete the procedure due to a tumor blocking a large portion of the colon and asked us to see a surgeon. We met with a great surgeon who scheduled all the tests as well as surgery in 2 weeks. The 15 days I  struggled so much with pre-authorization and making appointments for CT scan, Virtual colonoscopy at multiple locations, and getting it canceled due to lake of authorization. To make things worst we happened to choose the worst cardiologist for cardiac clearance, who literally didn’t care about what my father is going through and asked us to canceled surgery as he wouldn’t be able to schedule nuclear stress test at his clinic ( which btw wasn’t necessary according to surgery as my father’s echocardiogram was completely normal). We told the cardiologist that we’ll have his test done at a different location if he can get us approved through insurance. That didn’t happen while we still away from Surgery, even though our surgeon personally called him multiple times and explained the situation that if the colon is completely blocked due to Tumor then it could be fatal. The cardiologist didn’t do much. Meanwhile, my father’s abdominal pain and bleeding were both increasing, and a CT scan showed spots on the Liver.  His CEA was spiked from 15 to 44. Due to his pain, he was admitted under observation at the hospital where the surgeon brought the cardiologist from the hospital and arranged the nuclear test which came normal.  Right before surgery, the CEA reached ~65,  however, the laparoscopic surgery went and the surgeon removed 14 CM of the sigmoid section of the colon with a margin (5.5 CM tumor) with no complication. He is a fighter and so strong mentally that I can only wish to be like him. Within a week my father was walking normally without a single pain killer. The biopsy showed the tumor cell are well differentiated. 5 out of 20 nodes were positive. His tumor was Microsatellite stable (MSS) ( For note for For MSI-H patients the Pembrolizumab is a great option https://medicalxpress.com/news/2020-12-pembrolizumab-msi-h-dmmr-metastatic-crc.html).

We met with Oncologist, 3 weeks after the surgery and she started him on FOLFOX (leucovorin, 5-FU, and oxaliplatin) and ordered the liver biopsy which came out to be positive, also a few spots in the lungs were noticed during the CT scan. That’s where first I felt then I am losing my strength but he was still doing fine. Next, we met with a Liver surgeon who said that my father excellent candidate for liver surgery with over 70% of the people will survive 5 years. He said the liver lesion is 2.8 CM so it will robotic surgery and he will out of the hospital the next day. He suggested and we also were convinced that we should first do 6 chemos then do surgery and 6 more chemos. So now 6 chemos went by my father didn’t really have many side effects (or managed to hide is a pain) . Two issues were nose bleeding and extremely sensitive tongue. For the nose, we saw ENT  he did a brain MRI. Luckily, BRI shows no metastasis, and the nose issues went away with the medication that ENT provided. For tongue, he started eating non-spicy food. So overall not too bad. He was going strong but I was losing my sleep but I can’t tell that to him or anyone, I wished I knew about the forum back then.

Now January 2020 his liver surgery was performedhe was home with “Right Shoulder Pain”  the next day. The doctor said the surgery went fine but we weren’t sure why he needed to punch 9 holes for the surgery as compared to 4 which were needed for colon surgery. Upon discussion, we were told that due to the locationof surgery it was needed and this is a way better alternative to open surgery.  During the same week, my father started having fever and shoulder pain increase,  we contacted the doctor he said to wait for a couple of days but it didn’t go away he was back in the hospital. He spends a week in the hospital and came back home with JP drain to extract abscess from the liver.  The abscess doesn’t show any bacterial infection. So 2-3 weeks his drain was out and chemo was restarted. Shoulder pain resolved. But a month later we found out that he has an abdominal hernia due to liver surgery.

3 months after his last chemo in Sep 2020, he still can’t eat any spicy food not even the pinch of black paper. No one knows why visited ENT and dentist but everyone with no explanation. Meanwhile, during his routine checkup  CEA bump to 6 from 2.5 after the last chemo. So oncologist orders another CT scan, which showed a spot on the liver. A biopsy was scheduled which turned out to be another liver abscess. The radiologist said there is nothing to biopsy its wall abscess. The culture shows that the abscess contains klebsiella infection. So my oncologist tries to find an infectious disease doctor who would see us on short notice and found one who asked us to start Ceftriaxone (Rocephin) via IV for 6 weeks every day but the same story insurance didn’t authorize it for 2 weeks and my dad ended up in nearby emergency room due to low blood pressure and dizziness. They have found out that the infection is increased significantly kept him under observation for 1 week, we were early enough before his body goes into septic shock.  CT scan of the abdomen shows a liver lesion, and his CEA shoots up to 40.4. Meanwhile, the oncologist requested an abdominal MRI for a liver lesion just to confirm. After about 1 week on October 19^th, 2020 he has discharged with JP drain and levofloxacin 750 mg. The follow-up CT scan on October 29^th showed decreased fluid but no mention of liver lesions, the doctor instructed to remove the drain.  But the struggle continues, hospital radiology didn’t contact us for more than a week to schedule and finally when they did my father’s COVID test came positive. So now they won’t remove the drain for at least the next 10 days, he started having pain due to the drain at the insertion site. For COVID, he was asymptomatic and so within a week, we had him re-tested for COVID which came negative. So many conversations with the doctor, nursed and others, instead of removing drain radiologist doctor asked repeat scan and agreed that MRI that the oncologist requested will work. So we went ahead with MRI that shows his liver is clear from fluid but they found multiple lesions with the largest being 3.7CM X 3.1 CM. This is the moment I felt scared really scared but also confused. His drain is still inside after 7 weeks of discharge.

CEA 04/28/2020 -> 2.5

CEA 08/21/2020 ->  6

CT-scan 09/21/2020 -> Possible liver lesion

CT guided biopsy 10/05/2020 -> No liver lesion abscess only

CT scan 10/13/2020  -> Multiple Liver lesion largest being 2.5CM X 2.2 CM

CEA 10/13/2020 -> 40.4

CT scan 10/19/2020 -> No mentioned of liver lesion

MRI 11/25/2020 -> Liver lesion 3.7CM X 3.1 CM

Do  CT/MRI images are that inaccurate? Can liver tumors grow this fast, like nothing to almost 4 CM in 3 months? And can you have multiple liver surgeries while having the hernia?  I guess I will know soon during follow-up with the oncologist tomorrow and I am also going for a second opinion as I am too scared to go to the same liver surgeon, if at all the liver surgery is possible.

Best,

Nihir