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Do you worry forever?

Kaye2003
Posts: 86
Joined: Mar 2004

My husband is on his next to last l4 days of Xeloda. He was dx w/rectal cancer 10/03, chemo/rad, surgery 02/04. Path report clean margins.
Only problem since started post op chemo, tired a lot and 2 hard bm's produced a little blood on the tissue. We hope that was just a hemorroid or he tore himself alittle.
Anyway, we are not sure what to do at this point. His original colonoscopy showed the one tumor in the rectum. Not even one poly anywhere else in the colon. CT scan showed no signs of cancer anywhere else in the body. All this before surgery or pre op chemo/rad. All blood work normal.
Hope you guys can answer a few questions for us:
l. Do you ever feel free of the disease?
2. Are many of you cancer free and for how long?
3. His chemo/ongologist said my husbands CEA(?) has always been normal. Is that good?
4. Should my husband call his surgeon for an appointment when he finishes his chemo and request another CT scan and colonoscopy?
5. How long do you usually wait to have these test again?
6. Is it heard of to only have the one cancerous tumor and the rest of the body be cancer free?
(life doesn't seem that easy to us anymore)....
7. Do you ever consider yourself cured?
8. Do you ever stop worrying that ever little cramp, drop of blood, soft bm, etc means the cancer is back?
I'm sorry to sound stupit, but we've been thru so much this past year, we just don't know when we are coming or going. Our surgeon just seemed so confident when we last saw him that my husband was cured and should only have a colonoscopy every l8 months like he recommends from all patients over 60.
I will say this. WE would not have survived this last year without out faith in GOD, family, friends and people like you to share your experiences with us. No doctor can make you feel better or reasure you like someone that has lived this life.
GOD bless you all....
And thanks for being there when I felt very alone and in the dark.

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

Hi Kaye...I've had a lot of coffee this morning and feeling rather chatty, so here goes...
(rather than recite for the millionth time my story, read my web page so I don't have to bore everyone again!)

1.) As far as feeling free from the disease, it will at some point take a back burner to other things in life. The further you get from your original diagnosis, the "safer" you feel. It won't consume your every thought, but will never fully go away. Which is good in a way, since early detection is key, and by staying on top of things, detecting and treating problems will lead to greater success.

2.) I was diagnosed in Oct 2001, at age 33. Today, all clear. I was stage 4, and don't plan on going back to that status again! Several here have wonderful success stories, so browse the personal web pages for inspiration (SpongeBob, Judiths, Monikaz, 2bhealed, ron50, andreae, Lisa Rose, just to name a FEW of the MANY!)

3.) Normal CEA is good, but as many will tell you, it's not a good indication of a true reading. There are times when the CEA level is high, but no cancer is detected.

4.) After chemo, they will do another CT scan. I have one done once a year. PET scans are even better. They can give false positives, as they detect "hot spots" which can be misinterpretted, but can pick up things a CT scan can miss. The docs are usually pretty good about making you follow up with some kind of testing. PET scans are pricey, though, so call insurance and iron out those details, as to prevent any bad "surprises."

5.) The further you get from the original diagnosis, the further apart the testing.

6.) Yes. Just like it's hard to understand why a cancer spreads to other organs, it's sometimes hard to understand why it doesn't. Chalk it up to just a good experience, and don't think too much about it.

7.) I do consider myself cured. I have been cancer free for sometime now, and although I feel I am more prone to getting cancer than someone who was never diagnosed, I don't let it weigh on my mind everyday...life is too short to wallow in the "what ifs."

8.) Yes, you do question things more than you would have normally. But that is really good, in that you're on top of any abnormalities, and can nip something that may spiral out of control. Better to error on the side of safety, don't you think?

Finally, nothing you can say here can sound stupid. We all totally understand, and we truly are a bunch who doesn't question a person's need for information or support. In my unprofessional opinion, your husband is blessed to have such a wonderfully supporting wife who takes the time to come to places like this to help you BOTH out. Now get out and enjoy your day! You have earned it!

All the best,

Stacy

Anonymous user (not verified)

Bravo Stacey...you have said it all so right on target that not even long winded me can add anything to it ;-) I would only like to reiterate what Stacey has already said...once diagnosed, I don't think the thought of recurrence ever leaves any of us, caregiver and patient alike, but as hard as it can be on some days, life is too short to dwell only on cancer and in doing so, we deprive ourselves of living, which is a gift that God has given us.

I am so glad to hear that things are well with your husband and I pray that they will continue to be so for many, many years to come.

Monika

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Hi Kaye,
Iwas dx in 98 stage 3 6 cancerous lymph nodes but no mets. It is now 6yrs and 8 mos later and yes I feel cancer free as a matter of fact in jan 2003 my surgeon told me that my tumor was officially cured. But as Stacey said having once fulfilled the criteria for developing ca I was told to remain vigilant and have regular colonoscopies. CEA meant nothing to me at worst I was 2.8 and now st at 0.7 so it has never been used as a diognostic indicator for me. As for the worry about ca yes I worry but at age 54 my poor old body screams about lots of little problems I had pancreatitis and lost a gall bladder last year both of those things had the worry beads working overtime so I guess the upside of ca is that I am more aware of my body and staying healthy,I now eat healthy and walk an hour a day. As for tests I hate them ct scans are the equivalent of hundreds of xrays so I only have them on doctors orders I just live my life ,go to work go fishing as often as possible and stop to smell the roses at every opportunity. If ever I'm feeling down I just slip into this room and get uplifted by these wonderful people ,.Good luck with the treatment , do what the docs tell you and come and see us here often Cheers Ron.

spongebob's picture
spongebob
Posts: 2598
Joined: Apr 2003

Hey, Kaye (cool rhyme, eh, Kaye?)

Anyway, Kaye (there I go again...) Stacy (as usual) has hit the nail on the proverbial head. She's one of the MANY heros here at CSN. Her story has inspired me since I first came here to the site.

Here's my 2 cents worth:

1. My cancer is genetic, so I have accepted the fact that I will never be truly "cancer free". I know it may come back at any time. You know what? I could get hit by a bus at any time, too. So I don't play in the street. Likewise, I don't smoke, I use commin sense in my diet, I work out daily, and I do the proper surveillance to watch out for a recurrence.

2. I've been in remission for 2 years now.

3. CEA (carcino-embryonic antigen, or something like that) is a blood marker for cancer. It is not a particularly accurate indicator, but it's one of the best blood tests they have. In my case, my CEA has always been low - even when I had active cancer. Like Stacy said, you can be well and have a high number, too.

4. Your husband's oncologist will prescribe a surveillance schedule for follow-on scopes/CTs. These aren't usually done by the surgeon. They typically are every year for the scope and as required for the CT.

5. Like I said, usually a year. Colon cancer is typically a slow-growth cancer.

6. Many people have had colon cancer and it has not spread. There are other cases where it spreads to the liver, lungs, pancreas, etc. We call these "mets". Being from Cleveland I like to think that this word is what they refer to a certain pond-scum baseball team from New York!

7. One is "cured" after being cancer-free for 5 years. It's a big anniversary date that deserves much rejoicing and celebration (wine, tequilla, dancing, etc. is optional, but highly recommended). In the case of we genetic mutants, every cell in our body has the DNA code to be a cancer cell, so I don't consider myself cured - but Ican certainly consider myself "not sick"!

8. Nope. And Like Stacy says, that ain't necessarily a bad thing. The closer attention we pay to our bodies, the better off we'll be.

God bless you. And I hope you and your husband enjoy many more happy healthy years together.

Cheers

-=SpongeBob

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Any chance all yu guys in tha states can change your clocks to Australian time?---crikey--by the time ah get to read some of these posts and post an answer yu all have done tha good stuff n left 'ol kanga with tha scraps!!!---lol
OK--seriously Kaye---all these guys have got tha good oil on all your questions(btw--I do have a pers. site if yu care to take a peek)
For my nickles worth(er--2 bobs worth in oz slang) I am in rem. 5 months now and as the guys said it kinda seems that once one has these mutant cells it is pretty hard ta get them to go completely away.I have a sneaking suspicion that it is also genetical in my case as my mum passed from a brain tumour 5 years ago.SO--yes--I am still worried but try not to let it get to me.One of the main things that affect my thinkin is--"not to sweat tha trivial stuff"--that is I no longer get riled about really trivial matters.
Over here in oz--post op/chemo testing seems to be concentrated on easier tests--well, it is in my case.I have ultrasounds/bloods every 2-3 months, mainly to check my liver.It does concern me that these tests will only pick up a met. if it gets to a size that can be seen on ultrasounds.I kinda wonder if this is a "money saving" ploy by our medical system as ct's/ pets etc are expensive--who knows. Anyway--our very best to your hubby--yu take care of yourself too--caring wives are what I call "angels"--so join the "angel" club with my lovely Jen.
luv n huggs--kanga n Jen

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