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Scared to death ... New to board

tgarris3
Posts: 23
Joined: Apr 2010

I have been reading post for a while and just signed up.. Here is the story...
My dad was dx w/Stage 4CC last June.. Well they gave him the horrible stats which were hard to ignore, but his surgeon that did the partial colon removal said to ignore those as have all of yall on this board. Well he started chemo (has mets to liver, were numerous and 3 large one) well he has taken chemo ever since July and has done great.. No weight loss all scans showed tumors were shrinking.. Well the doc said that they treat not cure, which upset me ... But hey there are people on here who have so ..... Well he has his next scan scheduled tomarrow.... Well here is why I am scared more than ever....
Pre surgery his CEA was 350
a couple of weeks ago CEA was 0.8
Last week when he went for treatment it was 2.5
The doc said not to worry, but I cant help but worry.. The chemo he has taken is the most common he continues with everything except the oxy and fol? I believe.. The 2 harsh ones he hasnt been on since December... The doc said he is an exception taking this chemo because he has done great.. His stomach has been hurting (nausea) for about 2 wks.. My mom thinks it could be his Ulcer, but doc said it was probably chemo...
I am just scared to DEATH>...I hate the CEA increased and I know it can go up for numerous reasons.. Also can your CEA be that low and still not NED? I am praying for a cure here...Please help!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

We all understand the fear, you are not alone. Sounds like you are doing a great job of following your father! I would take your father's onc's advice and not worry about the CEA going up to 2.8 while he's on treatment. The drop from 350 is the most telling! If it continues to jump, then you might want to worry, but when I say jump, I'm saying by 10s and more! It sounds like your father is doing well on the chemo, which is really good news! And keep hoping for a cure, despite what your doctor is saying! Many on this board are doing well many years out from DX. I am sure more will chime in here soon, I just wanted to welcome you to the board and commend you for caring for your father so well!
mary

tgarris3
Posts: 23
Joined: Apr 2010

It just hard not to worry....His CEA has been dropping ever since he started and now that we have a slight increase... It scares me to death! Also the Onc. said he could take a break from chemo if he wnated but if CEA started rising then the cancer would grow rapidly which scares me.. But they havent said anything else about liver resection.. I hope one day that will be an option, if the chemo doesnt kill everything.... Has anyone on this board had chemo kill all the cancer of stage 4 with out a liver resection???? In beginning the tumors were on both nodes of liver which didnt make him a canidate

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

We have many here who have been told they weren't operable, too many liver tumors, then the chemo got them to a point where they CAN have it resected! Get a second, third or more opinion from a liver surgeon once you get scans that show the shrinkage of his tumors! Remember, your oncologist is a medical oncologist, he does chemo and believes it to be the best weapon in his arsenal. There are other specialists in this world of cancer who know there are other weapons to fight the beast. With a compliment of the right people, we can manage this disease much better. Fear is the hardest aspect of this disease to overcome, IMHO.
mary

tgarris3
Posts: 23
Joined: Apr 2010

I just wish I could get my dad to go for a 2nd opinion... He really doesnt want to do liver resection, even though the surgeon who did colon surgery said the recovery was about the same as it... He just worries about someone staying down there, etc.... I just have harsh feelings toward the onc because of stats he quoted... I know I shouldnt but dont come out and give stats, unless he asked...

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I'm with you on that one! Just shut the f*ck up unless I ask! Sounds like you need to look for another onc as well. I am sure your father is just scared, and once again, we all understand THAT feeling! I hope he is able to see his way to a stronger fight, with more wepons in his arsenal. Maybe you should set up a consult yourself, and pass the information on ... just a thought, don't know if it would be feasible at all. Continue to fight!
mary

AnneCan
Posts: 3692
Joined: Oct 2009

This is a scary process, + your Dad is lucky to have you help him through it. I agree with you; doctors shouldn't quote these statistics unles the patient asks for them + even then they need to be cautious. The surgeon that I met with said he doesn't have a crystal ball. It sounds like your Dad's CEA has decreased incredibly, that is great! There are many on this board who were told they could not have liver re-secion, etc. + then went on to have it. It is important to keep our spirits + hopes high.

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Ups and downs in CEA is normal. George's CEA went up a few points and the oncologist and his PA both said, no big deal. Now if memory serves George was up in the 900's someplace and gradually went down to 17. something then to 19. something, and when I said oh no, oncologist just laughed and said what are you worrying about, up and down is quite normal, that this little jump was insignificant, sometimes just a variance in the testing. So I'm going to tell you to stop worrying until there is someting to worry about. If and when there is anything to worry about just address it then and go to the next level of treatment.

Now liver resection is considered the gold standard but guess what, most will never see resection so if it happens teriffic, if not, you are part of the norm.

George also has mets to the lungs. Doing great just like your Dad. Continues to work full time. Right now he is a candidate for nothing, radiation, surgeries, whatever. Doc says were are just not there. Guess what, we are leaving for Scottsdale on Wednesday for a few days, docs sayd "why not". We have never been given any stats, onc does not go there and neither will I.

Everyone wants the magic "cure" sometimes that happens and it is wonderful when it does and sometimes you just have to treat it like a chronic disease. That is where our minds are right now, chronic disease. I was driving myself crazy looking for a "cure". When I stopped doing that there are days that go by when the word "cancer" doesn't overshadow the house 24/7. Do I research my butt off, you bet, but it is informational for us at this point but if George continues to do well, then I will have an understanding of the different therapies and surgeries, etc that are out there.

Oh, almost forgot, Welcome to the Board!

Take care - Tina

tgarris3
Posts: 23
Joined: Apr 2010

Thanks so much.. I try to push it out of my mind, but not a day goes by that I cant shake this out of my mind.. I was doing better till his CEA increased, even though it is stil in norm range it freaks me out!

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Go ahead and have a freak out, it is so normal, worrying never leaves your mind, at least it doesn't mine but I have learned that coughing doesn't mean the lung mets are worse, George just has to cough.

Take care - Tina

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

My CEA went from 1.7 to 1.4 to 1.6 over the last 15 months of being Ned. Nonsmoker’s norm is up to 2.5 – smokers like me can go to 5.

They opened me up to cut it out of my liver and did an oh s@#T and just closed me back up. Then they got it all with liver embolazation. There are lots of new tools in their box.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

First, everyone on this board can and does understand your fear. This stuff, this cancer, plays such games on our emotions and well being. We constantly look for assurance through tests or procedures and the big what if haunts us all. You are not alone with this by any means!

I am the one who has been through cancer surgery and treatment. I had only the best in terms of experience and referral (Mayo surgeon, oncologist and referral then to an oncologist in Minneapolis that I have worked with extensively), but also the best in terms of I believed in my heart and soul that I was doing everything possible to get and maintain good health. Every single day I would wake up with NO nagging doubts, no questions, nothing. I tell you this because you are not there and not sure if your Dad is. I would strongly encourage you to find the doctor, the oncologist in your case that makes you all feel as though everything that can be done is being done.

So, when I was cut lose from chemo in Feb 09- I freaked. How would I be monitored, what would happen, etc. My oncologist sat with me and explained all the tests to be done, the time frame and everything. The CEA test was by far the most frequent test, hopefully giving us the clearest idea if cancer was still brewing. It was the way we could continue to monitor and not be surprised by a reoccurance. These have been done every month, the first one was several weeks after finishing chemo and it was a .8, the second one 3 months later was a 2.5, the 3rd one 1.8, and the fourth one in Feb 10 was 1.4. I learned to relax with the tests and accept it was the way I was monitoring my condition. CEAs do go up and down and it would be a mistake to take one increase from a .8 to a 2.5 as being anything to be overly alarmed about.

One of the biggest hurdles we all have in walking with this Beast is how to allow the highs and lows to become part of the normal procedure with dealing with cancer. Cause really, nobody wants to spend 1, 2, 3, 10 years...worrying about a reoccurance. There is a lot of life to be living and doing in between tests and exams! So use this CEA as a flag of sorts, just another medical process to help support the recovery from cancer- let the doctors worry about it :) and inbetween, live life. Don't let cancer live your life for you.

All the best-

tgarris3
Posts: 23
Joined: Apr 2010

Thanks.. Even though I just joined this board.. I have been on here weekly since his diagnosed and yall have helped me come to terms with everything.. It helps just having someone to talk to !!!!

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Hello........... thursday is my 1 year DX anniversary date. I had a huge tumor removed in the large intestine that had perforated the colon wall and was growing into the abdomin wall. By the time I had recoved from surgery....got a second opinion...and started chemo.... mine had spread to 4 liver mets and 15 lung mets. I too was told...NO CURE...only treatment. No surgery would ever be an option. I INSISTED...don't you tell me how long I got...YOU aint God. i did hear whispers behind my back tho and that just wasnt right. It scared me so bad! Well, I did my Folfiri treatments faithfully.... and 8 months later I was declared in remission. i have since been taken off all chemo and as of last PET/CT...i am still NED. NO SURGERY REQUIRED. Chemo.....and LOTS of praying got rid of ALL mets in liver and lungs!!!! I, of course, tread lightly every day.... and hope and pray that all remains like it is now. Like Tina says...... this just has to be considered a chronic illness. It just seems more realistic to deal with that way. A way to LIVE with it. KUDO's to you tina! It is wonderful to have all these people to talk with. This SUPPORT is part of what saved my life. These people are my family...I love them all!

Jennie

Stefi
Posts: 31
Joined: Mar 2010

I just wanted to say welcome! My mom was just diagnosed with cancer about a month ago and she goes in for her first surgery this Wednesday to remove her rectal tumor. I cant give much help to your questions as I am so new to this all but I just wanted to say welcome. My mom also have 3 spots on her liver (one on one side and two on the other side) but the liver surgeon is confident he will go after the spots after a few months of chemo. I would encourage your dad to have the surgery if it is an option, as I have seen a lot of success stories with it (and even many without it and just chemo). I too am so scared and lost in all of this, but I know I have to keep faith and these wonderful people on here help me do that :)

Steph

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

First of all,just like everyone is saying,don't pay any attention to the stats,they are all out dated,and will only get you depressed.I think your dad should get another opinion or two,It's his life your talking about.Don't worry too much about CEA numbers,they bounce up,and down.I did chemo,and radiation at the same time,and I had bad stomach cramps.The doctor gave me a prescription,and had me take B-6 vitamin to help.Also when I would go to the bathroom,I would get chunks of bloody flesh,that was probably parts of the tumor.The tumor was almost completely blocking my intestine,and it hurt alot.It sounds like your dad is doing very well.You just have to be positive,and don't let your dad give up.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, dear.

I can understand the worry and fear you are feeling now. However, it sounds like his CEA has dropped dramatically. I hope that's very good news! Please keep us posted.

*hugs*
Gail

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Your dad is lucky to have you, with his cea levels going down that is a good sign. Keep posting and updating us on your fathers progress.
Hugs
sonia

tgarris3
Posts: 23
Joined: Apr 2010

Thanks everyone.. It is so nice to have a support group like this.. Today is his CT scan and Monday we will get the results.. Prayers please and I will post something Monday... Thanks again for everything!!!

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