The Colon Club

So I did my pre survey visit with dr. jarnigan at MSK. He was very knowledgeable and comforting. I told him that I was leaning against the pump and not the open surgery. He was very nice and said it’s a personal decision and did not press me. The nurse said it was basically used for those who were inoperable but some choose to have it put in. No guarantees again she said. So I feel satisfied with my decision. He even said that if it returns, we can always put it in later on. So I feel ok about this decision. My head is clear. I just read a bunch of cases where people gif the pump and it caused an infection and blockage in the bile duct and I can’t do it for now on one liver met. Maybe I’ll regret my decision. But I hope there are some years that I am free of the port and the pump to be less of a cancer patient again.

Teacher,

None of this is ever easy. Waking up every day before diagnosis was always easy. I cannot speak for everyone, but my days always come with a reminder even if i forget a little or chose to look elsewhere. I am living your same fears, NED or not. My hopes and prayers are with you and your family. Approximately 3 weeks from now i get my verdict and if nothing, then it is on to another 6 months of ups and downs and waiting, freting. There must be a formula for ridding myself of fear and anxiety, but the alternative is worse. All i can do is live another day as best I can until I cannot any longer. Until then, here we are. Get through this and keep moving...forward!

I have another thread that I posted this on. So I pasted and copied -

FINALLY spoke to Dr. Z at MSK. She said that the pump was an extreme thing and would need to be checked/filled by her every two weeks. A commitment. She said that she thought it wasn’t necessary at this time and it could always be revisited. She asked if the surgeon pushed it. I said he did not and he didn’t give me any pushback after I told him that I’d like to do this laproscopically. I am very pleased that I spoke to her. She also said that after the procedure she will look at the pathology report and decide if chemo is need or not. I think this was the right move for me. She was very supportive of the decision not to do this to my body at this time. So Sept. 12 this little devil is being evicted. Let’s hope the surgeon sees no other cancer and this is soon a bad memory.

This makes my day!!! Sending you positive vibes...let us know how you make out!

Update- resection complete. Surgeon said it was uneventful. It went exactly as planned. They did an internal liver ultrasound d and it was clean. No idea what pathology will say or how they determine chemo. I can control exercise, diet, and attitude. That’s about it. Stage 4 sucks and there are tons of sad stories out there. Today I’m not one of them. Maybe one day. But not today.

Great news! Hope the recovery goes well.

Such good news! I have been bummed over your last posts and stayed away from the site a bit since i have my first 6 month scans next week. Heading back from Saudi Arabia tomorrow and have a PET/CT scan on Wednesday, follow- up with my Oncologist on Thursday, and a one-year follow-up Colonoscopy on Friday. Bing, Bang, Boom. Not terrified, but concerned. It is an everyday handshake with reality that I hope fades over time. Just want it over with. Wish me luck!

DonutHead wrote:Such good news! I have been bummed over your last posts and stayed away from the site a bit since i have my first 6 month scans next week. Heading back from Saudi Arabia tomorrow and have a PET/CT scan on Wednesday, follow- up with my Oncologist on Thursday, and a one-year follow-up Colonoscopy on Friday. Bing, Bang, Boom. Not terrified, but concerned. It is an everyday handshake with reality that I hope fades over time. Just want it over with. Wish me luck!

You will be fine! Please post that you are NED when you get the all clear! I am ok! Sore but mobile and hoping this is all done now. I look like I was in a fight! I will update you as to the pathology etc....wondering how they determine chemo from this. Were LNs involved? No idea. All the surgeon said was it went as planned- they couldn’t see anything. Whatever that means. Hang in there, Donuthead! You’ve got this!!!

what a nerve wracking experience, more so than actual diagnosis. so i couldn't bear it, the anxiety afterwards. my wife called the dr's office from Riyadh to pester them about the results of my PET/CT scan today....and I am still NED. nothing.

it's a wave of euphoria to say the least, but it lasted only a short time because the reality is it can come back at any time. i have another 6 months is how i look at it. of course, this makes things a little bit easier, but it's not like i could just forget and move on. This will always be with me.

Now on to bloodwork today and fasting with a self induced enema this morning for larry longfinger and his camera tomorrow morning. lovely way to start the day

DonutHead wrote:what a nerve wracking experience, more so than actual diagnosis. so i couldn't bear it, the anxiety afterwards. my wife called the dr's office from Riyadh to pester them about the results of my PET/CT scan today....and I am still NED. nothing.

it's a wave of euphoria to say the least, but it lasted only a short time because the reality is it can come back at any time. i have another 6 months is how i look at it. of course, this makes things a little bit easier, but it's not like i could just forget and move on. This will always be with me.

Now on to bloodwork today and fasting with a self induced enema this morning for larry longfinger and his camera tomorrow morning. lovely way to start the day

We all have that fear but I think that the best thing to do is to live every day as best you can.

im exaxtly where you are, just a bit further into treatment phase. 48 year old, single mom of three. found a 7 cm mass during colonoscopy. confirmed heriditary (im the first) form. only a few positivw nodes. my tx so far has been 28 rounds of radiation and 5FU chemo pump and now folfox on a pump for 6 months. will take a break to have resection in a few weeks, then finish up chemo. wish i had words of wisdom. wish you diddnt have to be here. but i have been a lerker on this site from day one and this is my first post. just wanted to reach out and let you know i get it. sometimes the “what ifs” are crushing. especially in the middle of the night for me. but i try to look at this as a fast moving train that has an end goal. i try to say “yes” and “what time do you want me there” and just be agreeable in general with my healthcare team. then when i feel crummy and act a bit of a brat they remember thats not my usual MO. my kids are a bit older, but i think once you have spoken to oncolory, radiology and surg you will have a plan and can better speak to them. with mine, they just know they have extra slack to pick up around the house etc. i see the fears they have. they mirror my own. somehow you just know when they need to be talked out or if they (and you) just need a distraction or to blow off steam. day at a time.one hour sometimes. its hard not to peoject, but thats the way im coping. all my best to you.

Latest dr visit- pathology says it was two tumors instead of one by the surgeon says it really looked like a dumbbell so he figured pathology would see it as two 1cm ea. Clear margins. I’m healing well and I feel fine. Hoping this doesn’t return but I know the reality. 70 percent that this will reoccur in the liver. I will handle whatever comes next tomlive. No idea if I need chemo. I’m assuming yes. But how much? I meet with onc on Friday. Until then, I’m going to pretend I’m cancer free. This lesion was the only issue on my lastedt scan. It’s gone. I think I’m NED for five minutes.

Update- Onc said no chemo needed! She says my Cea is 1.5 and the committee said no chemo at this time. Next scan in December. Surgeon had clear margins and my blood work is good. I’m terrified. Not sure to be happy or waiting for the shoe to drop. I will now do anything and everything to keep this Ned status. I can at least breathe.

teacher2017 wrote:Update- Onc said no chemo needed! She says my Cea is 1.5 and the committee said no chemo at this time. Next scan in December. Surgeon had clear margins and my blood work is good. I’m terrified. Not sure to be happy or waiting for the show to drop. I will now do anything and everything to keep this Ned status. I can at least breathe.

Soooo HAPPY for you!!!

teacher2017 wrote:Update- Onc said no chemo needed! She says my Cea is 1.5 and the committee said no chemo at this time. Next scan in December. Surgeon had clear margins and my blood work is good. I’m terrified. Not sure to be happy or waiting for the show to drop. I will now do anything and everything to keep this Ned status. I can at least breathe.

I am happy for you! Great news!

Claudia