Recently diagnosed and so scared

Hager220

Hello everyone,

My father, age 66 was just diagnosed with stage 4 colon cancer that is in the liver and lymphnodes. I am beside myself. We are so close and spend nearly every day together. We are trying to stay positive and I could really use some positive thoughts and any advice. It is a quick growing cancer, wasnt there 2 years ago as he has routine colonoscopies but is otherwise in great health. We were hoping to start chemo righ away and due to Covid 19 we can't get in to get the port until June 1st. Waiting is so hard and scares me to wait and I worry it will grow in the next two weeks. I was considering asking if chemo could be started without a port and then get the port after the first round? The oncologist was confident it could be removed in surgery. So overwhelmed. 

Tueffel

Hello Hager220

Hello Hager220,

I am very sorry that your dad was diagnosed with cancer. Even though no one ever wanted to join this forum, here is a place you can talk openly about your thoughts, ask questions. Here are so many that went to the same, either as a caregiver or having cancer.

A lot of your story reminds me of my dad. My dad is now 56, has MS but otherwise he is really good. The colonoscopy was well done but then 2 years later in Jan 2020 he was diagnosed with colon cancer also stage 4 with liver metastases. I was just crying the whole day then. I am a daddys girl and all bad thoughts came into my mind. The fear is there but even if it stage 4 you will meet many people who survived it and are still going strong. 

You are at the beginning of this journey and your fathers journey is different than mine but I prayed a lot for my dad, talked to friends and stayed most of the time positive (sometimes you have bad thoughts, normal to be afraid). Even if the steps are hard, I realized that it gets better. You get a bunch of bad news at the beginning and then the good news came. For my dad it was "The mets responded good to the chemo. We will operate on the liver and take them out". Now the latest news from the doctor is "The surgery went like expected" or in other words: the liver metastases are out. 

As for the chemo: they do prefer a port but the first chemo for my dad was without it. It is not nice but they wanted to start asap. The chemo literally burned his veins but it did not take long and the side effects and pain from the colon cancer disappeared. The chemo gets easier with the port. 

I also understand your fear that the cancer can grow until the chemo. My dad is now a month after the last chemo and even for him is there a risk that the cancer grows. But wven I was in your situation I was thinking "Okay quick growing cancer that means the cells divide a lot and chemo acts on dividing cells. So the cancer reacts good to chemo?" I was thinking that again and again and it gave me hope. I hope the same is for your dad that his cancer will react good to chemo. 

 I hope your dad will beat the cancer. I will include him into my payers and wish you good luck!

Tueffel

Annabelle41415

Sorry

I'm so sorry to hear of your father's diagnosis and it will be a scary time until you can get everything in place and moving.  He can do treatment without a port if your center is able to start it before he gets his port.  You are going to go a roller coaster of appointments, treatments, tests, etc. and it is going to make you all crazy for a bit.  Just know that you have joined a great group, with a lot of knowledgeable people that can help you both get through this.

Right now it is really hard because of this virus and how the treatment centers are run.  Hoping that they can start treatment soon for your father and on schedule.  This isn't going to be an easy time, but it is doable and you both can get much needed support right here.

Make sure that you keep good communication with your father's doctor's and follow up with everything, even before the scheduled appointment.  Wishing your father the best and keep us posted.

Kim

Gail E

Still here

I was given the same diagnosis in 2014 And I'm still here. My son was starting his freshman year in high school and he just finished sophomore year in college. keep up the fight.

SnapDragon2

I know a guy (age early 60's)

I know a guy (age early 60's) stage IV rectal cancer (diff from colon but still...) with to many liver mets to count and approx 9 para aortic lymph nodes dx about 4-5 mths ago.  He began the kitchen sink variety of chemo in hopes to get him to resectable.  He almost gave up the fight after 2nd or 3rd round because it was so tough from the get go.  WELL. I got a text Friday that his scans showed no cancer lighting up in liver or nodes and the rectal cancer had significant shrinkage (barely there).  He will finish his last 4 chemos then surgeon will reaccess him for surgery!  Be your Dad's advocate and his cheerleader.  Be confident and know there is HOPE!!!

Hager220

Thank you!

Thank you to each and every one of you who have replied. I can tell you, you all truly make a difference and give hope and support. My dad will begin Chemo on June 1st and it feels so good to have everything scheduled knowing we are ready to tackle this. I appreciate the kind words. Tueffel, I hope the best for your dad as well, thank you for the reply. I will be thinking of him. Stay positive! Kim, I see you reply to a lot of posts and your words are very kind. Thank you for being here and thank you for the reply, just knowing someone is listening helps in itself. Gail E, I'm so glad you are still here. Thank you for the reply, I hope you are well! Snapdragon2, its stories like these that remind us the fight is always worth a shot, Thank you, truly for sharing and giving hope! 

I look forward to being a part of this group! Its already a huge help. 

Cindit

Hi Hager!

Hi Hager!

I was diagnosed last year (sept) with stage 4 and some mets to liver. I had 4 Folfox treatments and cancer was gone, had resection of both colon and liver and all went well. I also had no signs of cancer up to 2018. Was a shocker, no symptoms. Anyway, my tips for his treatment are: Do ice therapy, ie, suck on ice cubes during treatment, ice packs on hands and feet. The ice in mouth helps with the metal taste and change of taste. I took zinc supplements also because it really helped eliminate the metal taste. (oncologist approved of and knew of all of these things i was doing). The feet and hands helps with neuropathy and cold sensitivity. i didn't do this ice therapy until my 2nd treatment but after the 1st one, i walked out of building and my fingers felt like i was shooting flames out of them...then pulled on door handle and yikes! VERY cold. I couldn't even cut up my raw vegetables for my sald that night.....too cold. So, that's why i always recommend the ice therapy. It works! Oh, and for nausea, get him an aromatherapy ginger inhaler. THAT really helped. He'll get through this with flying colors...just takes positive thinking and these little tricks so he isn't miserable. Good luck and god bless! 

danker

age

Do not think his age is against him!  I was 77 when I was diagnosed.  Although that year was a bumpy one,  I became  NED(no evedence of disease).

Next week I will be 88 and am still NED.  So it can be beat!! Just take it a day at a time always thing the best outcome.  Good luck to you and your father.

Tom M.

Your Dad has this

Stage 4 is a scarey thougnt. You have come to the right place, there are many stage4 survivors here. Your journey together starts now. Faith, hope, and trust are key factors. Everyone responds differently to treatments. You will get a world of info on here as you and your Dad go through it all. Above all do not panic. Your Dad is in the fight now it's time to win it.

Hager220

Cindit, thank you so much for

Cindit, thank you so much for sharing. I will pass this on to him as it helps him so much to hear others stories. He just had his first treatment of FOLFOX yesterday. Im so happy to hear you are doing well. He did mention today he had a yucky taste in his mouth with water. 

Danger, these stories are what gives hope! Thank you for being a part of this group and offering support. 

TomM. Juat keep breathing and staying positive is my goal  

Hager220

Hi everyone, surgery was on

Hi everyone, surgery was on friday and they removed the colon tumor but decided against removing the liver tumor as their has been progression to the abdominal wall. Anxious to meet with the oncologist, the liver and colon surgeons have said he has a few good years left however that just doesnt seem fair to say. He is completely healthy otherwise and just 3 treatments of folfox shrunk all tumores greatly except one. How can they be so negative. Our oncologist is great so hoping he gives us more hope. Thank you for being a great suuport group. 

Tom M.

Hager220 said:

Hi everyone, surgery was on

Hi everyone, surgery was on friday and they removed the colon tumor but decided against removing the liver tumor as their has been progression to the abdominal wall. Anxious to meet with the oncologist, the liver and colon surgeons have said he has a few good years left however that just doesnt seem fair to say. He is completely healthy otherwise and just 3 treatments of folfox shrunk all tumores greatly except one. How can they be so negative. Our oncologist is great so hoping he gives us more hope. Thank you for being a great suuport group. 

Stay positive

No one can tell you or your Father how much time is left. Sounds like he is doing well now. Staying positive, being informed and keeping a good attitude is the key. Everyone responds differently to treatments. The doctors have the tools but your Dad has the heart to see this all through. You and your Dad are in my prayers. Stay strong.

Trubrit

Hager220 said:

Hi everyone, surgery was on

Hi everyone, surgery was on friday and they removed the colon tumor but decided against removing the liver tumor as their has been progression to the abdominal wall. Anxious to meet with the oncologist, the liver and colon surgeons have said he has a few good years left however that just doesnt seem fair to say. He is completely healthy otherwise and just 3 treatments of folfox shrunk all tumores greatly except one. How can they be so negative. Our oncologist is great so hoping he gives us more hope. Thank you for being a great suuport group. 

Hello

I hope your father is recovering well from surgery.  It is a hard thing to hear that they weren't able to remove the liver tumour, and to be told 'he has a few good years left' is really not something anyone wants or needs to hear.   The surgeons are just going by what they see, and not who your father is, his will to live, his determination to stay alive his positive attitude - which I hope he has all of - because that can really make a difference in some cases. 

I say you have a talk with your father about what they said, and then determind to put those words behind him and prove them wrong.

 I remember well, the first time I met my Oncologist. He laid out the stats, which wern't pretty.  I can't remember exactly what they were, having chosen to forget them, but it was something like 87% die within the first five years. Well, ever since I was ten, I have not allowed anyone to tell me what to do - long, sad story behind that decision - and I sure as heck wasn't going to allow some stranger, no matter his qulaification, to tell me that I might die in five years. I told myself that I WOULD be a part of that blessed 13% that lived. 

FORGET THE STATS!  That is my adivce. Set a goal. I want to live until I am 85 - 95 - 100, and live as though that were going to happen.   Just my opinon and how I choose to LIVE my LIFE; then if I die hefore, well, whatever; I gave it my best shot. 

I wish your dad well. I wish you and the rest of the family well. Be strong for him. Be potisive. Keep us updated. 

Tru

SnapDragon2

Did they get clear margins on

Did they get clear margins on the tumor?

What is his CEA, CA19-9?

Are you all at a major cancer hospital?  If not, I would get to one for second opinion.

worriedson714

My dad

My dad was dianogsed with stage 3 rectal cancer and at the time the doctor who did the colonscopy told us flat out there was no hope . Told us the tumor was huge my dad waited to long to get the colonscopy and of course I lost it . 

 

Much like you my dad is my world the only person I ever felt truely connected to in this world . Well we started treatment with his oncologist telling us he could be cured . There was alot of bumps in the road chemo didn't work as well as we hoped the first surgery didn't get it all . 

 

But over a year later my dad is still here and doing good gets around well eats well and even though there is tough times we have gotten this far . My point is doctors don't know everything there is always hope always even in the darkest of times I have seen it . Keep faith in god and be there for your dad sometimes just making him smile and laugh helps . 

 

Also don't ever underestimate a parents will to fight to be there for there child my dad has been threw hell and back and tells me he will keep fighting to be with me . Wishing your dad the best and I will be adding him to my prayers . 

Tom M.

worriedson714 said:

My dad

My dad was dianogsed with stage 3 rectal cancer and at the time the doctor who did the colonscopy told us flat out there was no hope . Told us the tumor was huge my dad waited to long to get the colonscopy and of course I lost it . 

 

Much like you my dad is my world the only person I ever felt truely connected to in this world . Well we started treatment with his oncologist telling us he could be cured . There was alot of bumps in the road chemo didn't work as well as we hoped the first surgery didn't get it all . 

 

But over a year later my dad is still here and doing good gets around well eats well and even though there is tough times we have gotten this far . My point is doctors don't know everything there is always hope always even in the darkest of times I have seen it . Keep faith in god and be there for your dad sometimes just making him smile and laugh helps . 

 

Also don't ever underestimate a parents will to fight to be there for there child my dad has been threw hell and back and tells me he will keep fighting to be with me . Wishing your dad the best and I will be adding him to my prayers . 

4 thumbs up

Well said Worriedson.

Annabelle41415

Surgery

Glad that your dad is past that surgery and hopefully he will recover very soon.  If they continue to do treatments, it could be that the existing tumor shrinks even more and they might be able to go back and do the other surgery.  Wait for the oncologist report and see what they have to say.  I'm glad that your father is still feeling well.  Don't look at stats on the internet as they are outdated and your dad is totally different.  Your father is lucky to have you.

Kim

Real Tar Heel

Hager220 said:

Hi everyone, surgery was on

Hi everyone, surgery was on friday and they removed the colon tumor but decided against removing the liver tumor as their has been progression to the abdominal wall. Anxious to meet with the oncologist, the liver and colon surgeons have said he has a few good years left however that just doesnt seem fair to say. He is completely healthy otherwise and just 3 treatments of folfox shrunk all tumores greatly except one. How can they be so negative. Our oncologist is great so hoping he gives us more hope. Thank you for being a great suuport group. 

It's odd with doctors, they

It's odd with doctors, they all have a different outlook. I have a doctor who is a pessimist by nature and another who has a rosier outlook. I think we need both, someone who talks about the possibilites with enthusiasm and one who tempers expectations. What they appear to have in common to me is that they both care about your outcome, at least while they are in front of you (lol they have lots of patients besides me).

I had an ablation and so-called clean up chemo, which has apparently failed to clean, lol. Docs don't completely understand the mechanisms of tumor growth, they are just sort of shotgunning at this stage in medicine, killing everything that behaves like a tumor in hopes of killing them all. So then, they have a better idea of what isn't working than they do of what works. Sadly they can't give us guarantees. I look at the other boards (the one where people post all of their treatments, etc in their signature) and you see how many of them were diagnosed, went on for years, then facing recoccurence did all they could...

I had an aunt who was worse off than I. I didn't know until after I was diagnosed but she was stage IV mcrc and that was 9 years ago. She had a recurrence and surgery to take care of that. She's in her 80s. I don't know what her docs told her about her longevity but pretty sure she's heard the same things we all have, chances aren't good, etc. All we can do is accept the treatment and keep it moving. Maybe get lucky and find a promising trial if we get to that point.

It's okay to feel unsure, unhappy with treatment, tired, whatever...don't forget what your father is feeling. That's what you can focus on. Don't forget to live your life, too.