The all deciding talk UPDATE PET scan

Tueffel
Tueffel Member Posts: 327 Member
edited December 2020 in Colorectal Cancer #1

Hello guys,

I hope wherever you are that you feel good and safe. I have more or less online classes. Practical classes are a mess. One day you have it, the next day the ward is closed due to covid and you think "did I see this patient?" I like practical classes bit atm it is safer for a med student to not see them. So, for more than a month now I am at home and have to make up everything later...

 

I found out the mutation my dad has. It is KRAS G12V. I should not read about this because most of the things I find is poorer survival, high metastatic, aggressiveness and high recurrence. I hate all these words. I know my dad is not a study. He is just 56, quite healthy when you exclude the MS, takes no medicine etc. But of course I am worried. I dont know how or if I should mention this...

 

Tomorrow is the "talk", the all deciding one

. Dad powered through the 8 chemos. The last 2 were the hardest and he needed longer to get back. Yesterday was the CT, today the tumor board. Tomorrow we will drive to the hospital and hopefully hear the good news. So I am anxious already the whole week. We are positive that it is over but I am worried. I am worried that we will hear not good news and most importantly that we will hear them and then in a year we will get really bad news. We are already talking like this was his last chemo, now everything is good. Are we just too positive to fall later really hard back into reality? 

At least my dad feels better now than last year during these times. He gained weight and can eat everything without any pain. He is not back go work but I think if no other chemo will come that he might be. 

I am grateful that the last 12 months were relatively good. It went how the doctors planned it. Surgeries worked, no severe side effect for chemo. Okay once they checked liver with MRI and USG but nothing more. I know from here that these is not granted. But I also now (unfortunately from here) that my dad might have a next battle. 

I will update this post tomorrow after the talk. I just needed to write down my worries and maybe ask for crossed fingers and some prayers ;)

Due to covid I hope I can still join the talk in the hospital tomorrow...

Stay safe! 

Tueffel

 

Update 3rd December

So we went to the oncologist today. I was hoping to hear NED. Unfortunately not. There is something in the liver. They dont see it on USG but in MRI. It does not look like the typically mets or the others but it did grow. 3 radiologist say 3 different things. In other words: they know nothing! They are Jon Snow ;) They will now apply to our health insurance about a PET scan. We hope the insurance will cover it. 

I am undecided. I was hoping to hear no cancer. But when the PET scan is over we will know for 99.9% if it is malignant or not. They could also other small things that they did not see before. Because of bleeding they dont want to do a biopsy. 

Otherwise everything is fine. CT was uneventfull except for this unknown thing abd also the blood work was good. I was hoping for more but tbh it is good they want to be as sure as possible and not taking any risks. It makes me more confident with the doctors. 

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited December 2020 #2
    Feelings

    From my own experience, which differs with each person, as I'm sure you are aware, it mattered little how much I prepared myself for bad news, it still knocked me off my feet.

    From the very beginning, I decided to be as postivie as I could be as well as being truthful to myself. I knew the stats, I decided that I would beat the stats, but I also knew that I might not. I know, it sounds weird, but that is what I did. 

    When I sat across the desk from my Oncologist and he told me that the Cancer had spread to the liver, I was as stunned as if I had not  ever thought that was a possibility. I was gutted.  I thought to myself, you knew this could happen, so why the death and doom reaction? Truth is, you just can't prepare yourself for the not so good news, becasue deep in your heart of hearts you know you can be the exception, you can be the miracle. For most of us, the fight to live is strong. 

    I have noticed, in my years of being on the forum, that when members - patients, get the bad news, while going through all the emotions that one would expect, they then buckle down and do what has to be done, or what they feel is right for them. You feel the feelings and then get on with it. 

    Your dad will do the same. If he finds out that there is more to do, he will do it. 

    There are so many on the forum - most pop in now and again - who continue with chemo, some for years. There story and advice is for them to tell.  I can just give you my own little part of the world of Cancer, and while not nice, I have been one of the lucky ones. VERY lucky.  I wish the same for your dad. 

    I am sorry to hear that COVID has disrupted your training. Hopefully 2021 will be a better year, and you, I and the whole world can get back to normal. 

    Tru

     

  • Tueffel
    Tueffel Member Posts: 327 Member
    edited December 2020 #3
    Trubrit said:

    Feelings

    From my own experience, which differs with each person, as I'm sure you are aware, it mattered little how much I prepared myself for bad news, it still knocked me off my feet.

    From the very beginning, I decided to be as postivie as I could be as well as being truthful to myself. I knew the stats, I decided that I would beat the stats, but I also knew that I might not. I know, it sounds weird, but that is what I did. 

    When I sat across the desk from my Oncologist and he told me that the Cancer had spread to the liver, I was as stunned as if I had not  ever thought that was a possibility. I was gutted.  I thought to myself, you knew this could happen, so why the death and doom reaction? Truth is, you just can't prepare yourself for the not so good news, becasue deep in your heart of hearts you know you can be the exception, you can be the miracle. For most of us, the fight to live is strong. 

    I have noticed, in my years of being on the forum, that when members - patients, get the bad news, while going through all the emotions that one would expect, they then buckle down and do what has to be done, or what they feel is right for them. You feel the feelings and then get on with it. 

    Your dad will do the same. If he finds out that there is more to do, he will do it. 

    There are so many on the forum - most pop in now and again - who continue with chemo, some for years. There story and advice is for them to tell.  I can just give you my own little part of the world of Cancer, and while not nice, I have been one of the lucky ones. VERY lucky.  I wish the same for your dad. 

    I am sorry to hear that COVID has disrupted your training. Hopefully 2021 will be a better year, and you, I and the whole world can get back to normal. 

    Tru

     

    Thanks

    Thank you for the words! 

    Sometimes you just hope for the best and then you are worried. Cancer is such a chsllenging disease for everyone and sometimes I have these days when I am just anxious. 

    I wish my dad will be done with it. My dad is not a study and he is not a statistic. My dad is willing to fight. He told me last week that he wants to have grandchildren, see me graduate etc. He wants to live. 

    I wish my dad will be lucky too. I hope so, I am praying for it. More I cannot do. 

    You know even if I dont like it because of it I am home now with my parents. I am also home for the talk. Otherwise I would not be able to hold still. In October I wasnt at home and they talked and I was all the time so anxious. But you know I could have practical classes but I decided not to go. I just dont want to be in quarantine again. Guess what one class was cancelled the morning of it due to covid. I am not flying here and there for quarantines...

    So I hope for good things tomorrow

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited December 2020 #4
    well

                                   When I first joined this board Tueffel your post really caught my attention cause we are both here for our dads . And my dad has neurofibramatosis which is kind of close to MS well I think it is anyway . I am so sorry to hear about your dad's mutation . I will be praying for the " talk " to be a good one and I will continue to pray your dad continues on a good path to beating this monster . 

     

    Now a personal question was there someway you knew your dad needed to be tested for a mutation ? Reason I ask my dad has a upcoming biospy dec 7 they think his cancer might have spread . So maybe back to chemo for him and I been wondering if my dad should get genetic testing first . But the onc says it's not needed by folfox did nothing to my dads rectal tumor . So I kinda think he should get genetic testing so just wondering about your dad's mutation cause I am so afraid my dad has a mutation that will stop his chemo from working again . 

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