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1 year after colonoscopy

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Hello,

 

It seems not so long ago but 27th of January, one year ago, my dad had his colonoscopy that diagnosed him with cancer.

I remember that day. I couldnt sleep because I wanted to do my neurology exam to go well (at the end I failed by one point my favorite subject). I was not worried. Yes the previous treatments were not successful but the last colonoscopy was 2017 and all sources said that adenocarcinoma doesnt grow fast. Still when I called my parents to know how the colonoscopy went the words came "Comonoscopy was over soon. A tumor blocked the whole sigmoid colon". My mom was crying, my dad was devastated and I was sure that my dad will die and that I am way too young to lose my dad. 

The results came back with adenocarcinoma, low grade and good position for surgery. I was so hopeful that it would be a sjrgery amd chemo after. But guess what: no! The CT showed liver metastases, tumor board. We cried a lot these days. Every source was negative. The German cancer blard basically said "you are dead". 

But it got better. First it was just 2 metastases not like I expected a whole liver. They wanted to treat the liver first as in remove the metastases.

Afterwards there were still some fears. A similar patient with the same comorbidities as my dad died during chemo. He also had MS and cancer.

But I found this forum and even though it was hard, it got better. 4 chemos were enough for a partial response and he got his surgeries. They were challenging but successful. The chemos were good. My dad said "if I would not have the MS I would work". 

So how is it now? 

There were some emotional challenges for me. I was worried about the mutations, KRAS and MSS. The studies are not nice but my dad is not a study and then I found a study that I read that KRAS with mab decreases survival and my dad never got one. 

I had oncomogy in my studies. One doctor said " we dont cure. We prolong survival". But one doctor was telling me that radiologist tend to be creative... 

We will have a pet scan next week and thenthe 11th Feb is the talk with the oncologist. I am good. First of all if it is bad they could operate it but even though it is not my dads team is careful. I do have trust in the doctors and they are careful. Otherwise they could just chevk the liver with a MRI every 3 months but they wanted a pet. My teacher told me that liver pictures tend to be difficult to interpret. So even if it is just a hemangioma, what is thdir suspicion, I am in good mood my dad will be fine. 

My dad is good. Sometimes the MS disturbs him but his markers are good and he got fat. The stoma is sometimes an issue but due to covid there is no rush. 

Most importantly for me was this forum. Trubrit and Kim who are first line responders but if you stick around,there are stage 4 survivors who won (eg beaumontdave). Others are again good but dont want to be here, others lost their fight. Others are still kicking, beating the odds (eg NewHere). At some point you and so many others were all here for the girl who developed hypochondria ;) (Edit I am talking about me here. You only get half of the times of it. So respect to my friend)

It was a long year, stressful but for now I am grateful. My dad has good doctors, he is in good spirits and I hope the pet scan will be negative. 

Tueffel

 

PS I was paying attention in psychooncology. If you feel good in your doctors hands then it does improve the diagnosis. My family feels good where we are for now and I hope it stays that way.

PS There was a youtuber with stage 4 colon cancer. Her videos and positive spirit was refreshing. Unfortunately at time of diagnosis, the cancer was too advanced. She lost her battle at the beginning of the year! I am sure she is in heaven now. 

Real Tar Heel
Posts: 243
Joined: Nov 2019

Hi

Survival is a good thing. I'm coming to terms with how good it can be and how far I am willing to go...

I will have my year 2 colonoscopy, meaning two years since diagnosis. One recurrence within year one, metasynchronous diagnosis initially, the odds have been always around 50/50. I was "lucky" to have been eligible for surgery from the off. I've had chemo and I've had an open resection and TBH I'll take the knife every time.

Good luck.

 

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Hi

Many views I had in life changed the last months. I dont think so many years in the future anymore, even if I want so many more moments for my dad. I am thinking that each day will get better. He is better than 6 months ago, laszt year etc. I am praying that it will stay that way even though the KRAS mutations kills my mood frequently. 

For now I hope whatever happens that the doctors decided on the PET cause they can operate him. Surgery is still the best way to get rid of the cancer. 

Good luck to you! My dad said that he would probably not do the luver surgery again but in hindsight and I am telling him that, the decision was right. Sometimes the hardest choice is the best. 

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

Thank you so much for the update and so glad to hear that your dad is in good hands.  Wishing your father the best in his upcoming scan and please let us know how he does.  I'm glad this board has helped you as well.  It's important for your all to like the team that is working with him.  You need to trust them, because it is one of your loved ones involved.  I'll never forget the time a doctor told me that if my sister was in your situation this is what I'd do.  It made me feel so much more comfortable because at that very moment, my trust in her went up 100%.

Kim

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

I need to admit that the board sometimes pulls me down too, especially if the cases are similar to my dad and they are suffering because they fought longer, lost already. It is harder to differentiate when the person has similar disease characteristics like KRAS. Sometimes it is good for me to take a break. 

I will update you how it will go. I hope it will be online maybe so I can be there online. Still I have a long paper with questions about interventions, stidies I read and the doctors will need to answer. I am sure that the doctors know that KRAS is more challenging but yeah it is my dad so I will emphasize things more. 

I am grateful for the doctors. I read, I ask, I clarify and I am not an oncologist but just based on information I gathered they did not do something I disagree with. Also we had no major setbacks where you could say that they did something wrong. This is also something I read about here frequently, and I am happy my dads doctors are not like that. One surgeon called after the colon surgery to inform us, took some time to answer my questioms. 

Also now with the PET: they could do MRIs every 3 mpnths and monitor it but they want to act now. So yeah the PET is tomorrow and then 11th is the talk. I planned to be there but I am already at my university.

 

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