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6 month check up after NED/update

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hello everyone, as most of you know, I just found out the I am NED and that I don't have to go back for a scan for another 6 months. My family thinks that is a long time to go without a check up, so thought I would ask my freinds here on the board what the norm is for a followup scan after your first NED results. I know I should be escatic with the NED news, but their concern has me thinking...........again.

Thank you!
****************************************************************************

I talked to my ONC and he told me that he was planning a blood test in 6 weeks to look at my CEA. That makes me feel better. He also mentoned that if I get pain on the right side and on my right shoulder I should call him because that is an indication of tumour activity in the liver.

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

What stage are/were you? And when did you finish chemo?

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I had a 60% liver resection in April......to get the two mets that spread to my liver.

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

ah yeah, 6 months out seems long.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

They say that on the average, it takes a cancer cell between one and a half
to two years, to grow to a size that's big enough to identify as a cancer cell.

If they don't see a growth today, they probably won't see it within six
months from today, unless they overlooked something.

Once a cancer has metastasized, the rate of growth can double. But
even at that rate, six months would be about right.

It always bothers me when an oncologist tells a patient that they're
"NED"; that they are free of cancer. The onco has absolutely no idea
if the patient still has cancer cells growing or not.

The "industry" has set five years as the point that they can consider the
specific cancer as being gone, if in all that time it hasn't surfaced again.
Anything less than that, is a moot point.

To me, it's a disgrace to give a patient a false notion, then crush the patient
and the family a half dozen months later.

Every one of us that has cancer worries daily, about every single sore,
headache, cough, and pain. I have lumps come and go, and I die a bit with
each event.

If I have a hangnail, I swear it's cuticle cancer.

Is it worth all the worry? I had my colon cancer operation a little
over three years ago. I was stage 3c or 4, depending on the oncologist.

I did not have chemo, radiation, or any other western medicine treatment,
since they said that my wound did not heal within the time that chemo
would have any real effect. It was six months after the operation that
my wound finally stopped oozing, and healed enough to not soil.

Since I had 7 nodes infected, they said it was more than likely
throughout my entire body.

I have worried every day since, and worrying has not helped. My last
scan 6 months ago indicated some spots on my lung, but since there were
no previous scans of that lung, they told me to wait at least six months
for another scan. And aside from those curious unknown spots, there
are no other signs.

It means absolutely nothing. I could have cancer in the brain, lung, liver,
anyplace; There simply isn't any way to tell unless it's big enough to see.

Too many scans, equates to too much radiation exposure, adding to
a problem we don't need.

Enjoy life now. Get the scans when they say it's time for one, and
deal with a problem when it happens.

Otherwise you'll be like me.... grey, balding, fat and obnoxious.

Smile, and look forward to each tomorrow. The next six months
will go fast. So will the six months after that, and after that,
and the years will fly by. Try to enjoy every one of them.

(I am an avid advocate of Traditional Chinese Medicine, and have
relied on herbal broths to stifle cancer cells. They told me that if
I'm still here by now, it'll be by sheer luck alone.)

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

and no scans at all unless my CEA goes up......every 3 mo for 2 years then every 6 months for 2 years then 1 more at the end of the 5th year and its over completelyyyyyyyy.

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I think I have been pretty steady at 6 months since originally being NED in April '05. The CT Scan will be focused mainly on your liver, I would also have a chest X-Ray every 6 months or so and bloodwork.

Don't let this dampen your sense of good health. YOU ARE NED!! Ha-Le-Lu-ia!

Be well... Rob; in Vancouver

Annabelle41415's picture
Annabelle41415
Posts: 6733
Joined: Feb 2009

I just had my first scan since diagnosis in December of 2008. She said now every six months for me, but I only had the rectum cancer and just finished "mop up chemo". Not to diminish your families concern, but they are not your doctor and your doctor has been a doctor for many years. Don't let this wonderful news diminish what should be a wonderful news event for you. Congratulations and let your doctor do the "doctoring." I'm happy for you.

Kim

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

My shopping habits have sure changed since this diagnosis, seems that I now buy what I need for the present or not at all....my husband says, "I have always bought for today, not a bad way of thinking...my socks have holes in them, Get Me Some Socks, Woman!" Funny guy!

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

I think 6 months is too long to go without a checkup with blood tests, but not necessarily too long to go without a scan. Scans involve considerably more radiation than simple X-rays, so they have some risk of their own. I had only a stage 2 cancer, but after 4 years being NED, I'm still getting a checkup with blood tests, including CEA, every 3 months (and a CT scan every year).

jscho
Posts: 62
Joined: Jun 2009

I'm also worried about being scanned every six months since my tumor was a high grade adenocarcinoma with tumor budding evident, 4 lymph nodes were positive, and NO CEA test was done prior to surgery. My cancer must have grown quickly since I'd had a colonscopy 4 years earlier with no polyps or dysplasia found. I have no idea whether CEA is a good marker for me, so it seems imprudent to just go with bloodwork. On the other hand, I know that CT scans involve a fair amount of radiation, and I've already had 3 scans this year.

This is an issue I will discuss with my oncologist when I go for my CT scan report and bloodwork next week now that I have completed the 12 rounds of adjuvant FOLFOX.

Best,
Jeremy

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi Nana -

I think given that you are Stage IV (like me) that at this point 6 months sounds like a long time.

I was scanned every 3 months, then every 4 and then finally we went to almost 6 (which is when my recurrence happened - 3 years off chemo). At this point, 4.5 years from diagnosis, 6+ months since lung resection, we are going to monitor me with PET scans every 3 months (and only do CT's if something is suspicious). [We are doing this because PET has always been good for me and I have had 20 diagnostic CT's since 5/2005 and we are trying to limit radiation.]

Good luck. Personally I would push for scans at least every 4 months for at least a year, maybe 2 and then start stretching them out.

Betsy
diagnosed Stage IV, liver met, 5/05
6 cycles Xeloda, oxaliplatin/ Avastin
solitary lung nodule, 11/08
thorascopic wedge resection, 4/09
6 cycles Xeloda / Avastin
Currently on the "Avastin for a year or perhaps forever" plan!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I talked to my ONC and he told me that he was planning a blood test in 6 weeks to look at my CEA. That makes me feel better. He also mentoned that if I get pain on the right side and on my right shoulder I should call him because that is an indication of tumour activity in the liver.

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