CSN Login
Members Online: 7

You are here

Introduction, Sharing experience and some help

npatel22526
Posts: 14
Joined: Sep 2019

 

 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 25th 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 19th, 2020 he has discharged with JP drain and levofloxacin 750 mg. The follow-up CT scan on October 29th 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

 

SandiaBuddy's picture
SandiaBuddy
Posts: 1171
Joined: Apr 2017

Nihir:  It sounds like you and your Dad have certainly gone through the wringer.  It has been a long and hard road.  Inaccuracies and uncertainties abound in cancer treatment--Ct scans are often inaccurate, and one professional can read them very differently than another.  I have no specific experience with the questions you have asked, but hopefully others on the board will know more.  I am so sorry you are here, but at least you are among people who understand the uncertainty and frustration. 

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

For one thing, I'm glad you found this board as well as it helped me immensely when being first diagnosed.  It sounds like your father has gone through a lot, and also had some good doctors behind him, except for the cardiologist.  If you are ever in doubt, don't hesitate to get a second or third opinion. 

As far as the tests, it's important that you have an oncologist that can also read the scans as they will be better able to explain things.  Sometimes the radiologist statements are so full of terms that we don't understand, it's good that you can talk to your doctor about it.  I'm hoping that your dad has someone going with him to appointments as it's best to have 4 ears instead of 2.

I'm not able to help with the situation here, but hoping that someone will be able to come on that has been through a similar situation.  Don't give up on your father and never lose hope.  We have a lot of knowledgeable people on this board and we will help answer your questions whenever we are able.  Wishing your father the best.

Kim

 

SnapDragon2's picture
SnapDragon2
Posts: 515
Joined: Nov 2019

One of the jp drains may be dislodged/shifted causing the pain.  Does it lose suction, have any blood showing up or no fluid draing any more?  The surgeon who put the jp drain in should be the one removing it.  It is his (the surgeons) drain.

As for scans, always always get a second reading impression, perferrably from an outside source, and compare the two.  It could change everything.

As for liver surgery maybe ask if inter-operative scan/ultrasound is in their wheelhouse as sometimes just palpatating by hand can miss lesions.

npatel22526
Posts: 14
Joined: Sep 2019

Thank you very much, Sandia, Kim, and SnapDragon2

I've found so many wonderful people and posts in this forum in the last couple of days that I am more excited to see his oncologist than I am scared.

@Sandia, yes I am well equipped with uncertainty tolerance and learned to be patient.

@Kim, indeed the great doctors, even liver surgeon was very positive but when things didn't go well so getting the second opinion.  Seeing two different oncologists this week and the first time going for a second opinion.

@SnapDragon2

Regarding drain I have two worries, 1) it's been there for so long I fear that will be skin around it, and second, it might have miss placed. I ended up changing dressing regularly as the Nurse wouldn't come due to his COVID  but No blood or white discharge.  And the radiologist surgeon was the one who will take it out, he spoke to the infectious disease doctor that he needs another scan didn't say anything.   But this week it will be out I will keep everyone posted. Regarding scan, I will certainly ask both oncologists regarding inter-operative scan/ultrasound.

 

Few points I missed regarding location. The hospital one operated on both the surgery was Overlook in the summit and the current hospital that put the drain is Robert Wood Johnsoon.

 

I will provide updates on the end of this week.

SnapDragon2's picture
SnapDragon2
Posts: 515
Joined: Nov 2019

The drains being in so long certainly can be problomatic for adhesion of skin around them and infection.  I would not try to pressurize it any more.  It could be lodged against tissue or muscle.

The surgeon is the one to have scanning discussion with as he will be the one performing the surgery?

Don't take surgical advice from an oncologist and don't take oncology advice from a surgeon.  Totally different wheelhouses.

npatel22526
Posts: 14
Joined: Sep 2019

The drain is finally out, took them 2 mins to do it. ( though waited  4 hours for it, actually 5 additional weeks + 4 hours ) but glad that there was no complication about the insertion site yet

But things have been turned upside down with multiple Liver Mets confirmed based on Restudy of MRI as well by the second oncologist.

Regarding what you said about the Oncologist and Surgeon (I guess hold true for Radiologists as well), Both oncologists said they're unclear if surgery is an option and the surgeon is the one who can answer. They both said they will have their perspective Tumor Panel looked at it. One oncologist suggested a clinical trial based on his NGS test ( KRAS/NRAS wildtype and ERBB2(aka HER2) amplification, I will have another post regarding follow up but really hoping surgery is an option as the more I read about HER2 more I frightened.

Nihir

SnapDragon2's picture
SnapDragon2
Posts: 515
Joined: Nov 2019

Good, the drain is out! 

Push Push the surgeon for surgery.  If answer is "not possible" which I hope isn't the answer then ask exactly what they need to see on bloodwork and scans to be a candidate for surgery (Record every appt so you don't forget things) and work towards the goal with an ND helping maybe and your own research.

He needs a strong immune system to help fight this disease.  

Yes, please keep your thread updated for us.

worriedson714's picture
worriedson714
Posts: 250
Joined: Dec 2019

         Glad the drain is out as well would have really freaked me out if my dad's drain was in that long . As far as surgery goes I know it's the best option . All I can say about that is make sure the surgeon has a clear plan and they believe it will be affective . My dad has had two surgeries both times couldn't get it all after saying they could . He has suffered alot course of those surgeries looking back I wish I would have discussed the plan and odds of success more with the surgeon . Cause sometimes it feels like my dad would have been better on chemo or radiation first to shrink things down good luck . 

npatel22526
Posts: 14
Joined: Sep 2019

Thank you both we have a surgeon visit next Friday, I will discuss both the aspect.

Subscribe to Comments for "Introduction, Sharing experience and some help "