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I would love some input on CAT results -

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

Hey all -

QUick rundown - I am 35 year old mom of two - stage 3 - colon cancer. Finished 12 rounds of chemo a year ago this week - I had my blood work done this week - CEA totally "normal" and all blood work looked good. I had my CAT done - Onc called today and said that they saw two tiny tiny spots - one on the liver and one on the lungs - ordered the 6 months prior CAT results which had come back normal - he looked and saw that the tiny tiny spots were there last time too - which he said was GOOD news - that they were not new.... so this new CAT scan reader must be extra through or what???? ANyway, doc said I could do a PET if I wanted to. WOndering if they are so small then will they even show on a PET. I have only had CAT scans so far. One mid-way through chemo - showed NED #2 end of chemo showed NED - and #3 6 moths post-chemo - showed "NED" (but this tiny spots were there but not reported or to tiny to report) and then #4 CAT - was the one this week.
Anyone have any thing like this happen - or can relate to this? Good or bad - bring it on.
I am not in panic mode - not yet - I am hoping to hear from you kind people that "stuff" shows up here and there along the way.....
As always, thanks for reading and responding, This site has been a godsend for me during the process of getting through this cancer crap!

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hi Mommy...

I had a small lung nodule appear in the lower part of my right lower lobe mid-way through chemo...it unnerved me, but it's been there ever since and has not changed, nor had any uptake on PET scans. That was two years ago...

The PET scan might settle any uncertainty you may have, and give you a baseline PET for the future.

Let us know what you decide and how it goes.

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

I cannot tell you how much it means to me to be able to jump on here and read your reply - I will sleep better tonight thanks to you usakat. I went to your web page and read about your journey with this. You and I have a lot in common - our time line is about the same. I was dx in Feb 07 - completed chemo in September 07- and here I am September 08 trying to celebrate one year in remission- now this little hurdle - so no champagne quite yet - in some ways I was wondering if it was "too much to ask" to be over it all so quick - not that any of it was easy , but I guess 5 years of all NED CT's and no bumps or scares would be too Pollyanna of me. God has given me a real sense of peace , from the time this whole ordeal began , I felt peace that HE would bring me through this - and He hasn't let me down yet. He didn't promise it would be easy - I know that now - but I also know now what I am made of. I have a daughter who is nine, and a son who will be four next week - so they remind me everyday of so much I have yet to do - I just gotta be patient.
I was so waiting for clear NED results - and my world stood still when I heard otherwise, but after reading up on other's here at CSN, and getting your reply - I feel encouraged and so much better. The initial scare is over - and now on we go!
Sending hugs from a grateful friend in San Diego
Thank you!

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

I cannot tell you how much it means to me to be able to jump on here and read your reply - I will sleep better tonight thanks to you usakat. I went to your web page and read about your journey with this. You and I have a lot in common - our time line is about the same. I was dx in Feb 07 - completed chemo in September 07- and here I am September 08 trying to celebrate one year in remission- now this little hurdle - so no champagne quite yet - in some ways I was wondering if it was "too much to ask" to be over it all so quick - not that any of it was easy , but I guess 5 years of all NED CT's and no bumps or scares would be too Pollyanna of me. God has given me a real sense of peace , from the time this whole ordeal began , I felt peace that HE would bring me through this - and He hasn't let me down yet. He didn't promise it would be easy - I know that now - but I also know now what I am made of. I have a daughter who is nine, and a son who will be four next week - so they remind me everyday of so much I have yet to do - I just gotta be patient.
I was so waiting for clear NED results - and my world stood still when I heard otherwise, but after reading up on other's here at CSN, and getting your reply - I feel encouraged and so much better. The initial scare is over - and now on we go!
Sending hugs from a grateful friend in San Diego
Thank you!

crazylady
Posts: 544
Joined: Jun 2004

Hi,

I have 2 spots in my left lung that have been there for awhile. They showed up in a CT scan, but did not light up on a PET scan. Unfortunately they are now lighting up and have grown and I am back on chemo.

I have heard of spots never changing, but my experience is that they did change. It's really important to keep a good eye on them.

I hope yours stay the same!
Take care,
Jamie

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

I was dx in 2006 and at first pet scan done before surgery it showed one tiny nodule in one lung,Dr. told me not to worry,that it was not uncommon to have nodules in the lungs,it could be for other reasons not cancer, but that we were going to get monitored after 3 months,and so on ,it have been already 2 years,and it didn't change not bigger not smaller after chemo,which is the best sign,because if it was cancer it would have changed after chemo.I have been NED for 2 years,and you will be too, as you said the Dr. compared with your previous scans and the nodules where there already with no changes, I'm very confident that everything is going to be fine for you. God bless you.

apache4's picture
apache4
Posts: 272
Joined: Jul 2007

I was dx.in 6/06, Stage IV,and have had a small lung nodule the whole time. It does not light up on PET scan and has not changed. So, it is a not to worry thing for now. The PET scan would show if it was a cancer as it would light up if it was. It is a good thing to keep an eye on...but, it looks good for you.

taraHK
Posts: 1961
Joined: Aug 2003

Certainly there are a lot of "spots" which all humans seems to walk around with which are nothing. Yes, it is good news that a review of the previous CT scan showed that the spots were there previously. Some radiographers read the scans more carefully than others (which can give us a minor heart attack). Presumably they were the same size this time? If it were me, I would probably consider getting a PET scan (if insurance allows, etc). Just to put your mind at ease. However, as you know, lesions have to be a certain size before they show up on PET. I guess this varies lab to lab -- but my understanding was 0.5-10 cm at least. I have had experience where a node showed up on CT, didn't light up on PET. We entered a period of "watchful waiting" (otherwise know as torture ha ha). Eventually mine did light up on PET, and was indeed a met. However, as you have seen from other postings, often these spots turn out to be nothing -- and sit there unchanged for year. Sending all best wishes your way. Tara

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

Hi Tara HK - Thank you so much for your reply - all input helps so much - After I read your reply I read your page and was wondering how you are doing - you have certianly been through so much - What is your current condition ? I noticed your last update awhile ago so I was wondering hoe you are doing at this point.

What a total life change this is for all of us - who knew we would all become experts in THIS field????? I was very pollyanna after all the chemo to think that my days of cancer were over - I figured 5 years of free and clear scans were all I needed and that will be that. I know this is more real - ups and down and tests and results and waiting. Much more realistic now, for this is what it means ti be living with cancer. I am not letting it control my life, or give it any more attention than I have to - but I am also not in denial as I might have been right after - so on we go.

Hope all is well with you - let me know if you have time.
Thanks
Honor

hoagiemom's picture
hoagiemom
Posts: 87
Joined: Feb 2007

It has been 1 year for me also. I was dx Feb 2007, Surgery and 12 rounds of chemo and as of Aug 22,2007 I was NED. I'm up for my 1 year scan on Sept 17th and now comes the anxiety. My CT scan back in March showed something on my ovaries. It turned out to be a cyst after internal ultra sound. That was an interesting procedure. I know how you feel you think this is behind you and then all of the sudden cancer comes front and center again. I hope all goes well with everything keep us posted. We need to believe that we beat this disease.

take care

Michelle

SATTERMAN1
Posts: 5
Joined: Aug 2008

My wife is almost 5 years clean with her colon cancer. She had two spots on her lugs three years ago. Doctor told her they have not changed so don't worry, so she hasn't....john

littlejulie's picture
littlejulie
Posts: 311
Joined: Mar 2004

Hi there,

My mom had Stage 3 rectal cancer over four years ago. She's had many ct scans and spots have appeared which turned out to be nothing. Once there was a spot on her lung and just like you the doctor looked at the previous scans and they were always there. Another time a spot appeared on her liver and turned out to be nothing again even though it was a 'new spot'.

I'm 32 years old and have one child. My heart goes out to you, you will be FINE (just like my mom who's been clear for 4 years) but I can't imagine dealing with the stress that you must have. Keep faith, you will be fine! Every year that passes with my mother it gets easier - I'm sure you're looking forward to all of this behind you - I will you ALL THE BEST!

Julie

You and your children are beautiful!

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

I cannot thank you all enough for the reply to my post -The encouragement alone is amazing - the stories are just what I needed to to hear - even the not so great on. LittleJuile - thank you so much for your sweet thoughts and kind words - I cannot thank you enough.

Update: I am set for a PET scan next Tuesday - meanwhile my doc is pulling the old CT to see of the spots are there - I will know all next week - It is my son's 4th birthday and we are off to Disneyland - the Happiest Place on Earth right?? Well, I have such a better grip on all of this than I had at the start of the week - thanks to you my kind CSN friends - All of this is really our of our control anyway right? - So we learn about it, we talk together, we pray - and we go to DISNEYLAND! LIfe goes on - and when you are a Mom of two little kids - it is going on ALL the time! So my "job" is to be the Mom, the wife , and a cancer fighter!

Thank you again , and I will keep you all posted on my special "spots"!

LOUSWIFT
Posts: 372
Joined: Aug 2006

I have had two CT scans come back clear NED with changes in my CEA over the years. Both Ct scans were absolutely wrong. Colonoscopies found colon cancer in 2006 and 2010 after being told I was NED from the scans. The radiologist opened his book of excuses I think the last one was my cancer was a low grade (slow grower) but the first tumor was the size of a plum and the second was slightly smaller but involved three localized nodes. I don't trust the techs or the radiologists who read them. The best way is get a PET scan. Then get a second opinion. Best of luck Lou

k1
Posts: 220
Joined: Dec 2009

OK here was my experience March 2011 to June 2011 with all types of scans.

In March of this year I was scheduled for my three month followup CT scan. I asked if I could have an MRI instead due to less exposure to radiation. My oncologist argued with me, said the standard protocol is CT scan for following up Stage II colon cancer. He also said the MRI was great for scan of abdomen and pelvis, but that it was not thorough enough for chest area. I argued back, saying I still wanted the MRI.

So I got the MRI in March. It showed three tiny lesions on my liver. The oncologist immediately said I must have a CT scan to confirm these lesions because they might be mets. So I did (so much for saving myself any radiation exposure!). The CT scan showed nothing. The technician could not find the lesions seen on the MRI.

Next I was sent to have a PET scan to see if the three lesions lit up on the PET scan. They did not light up.

I was asked to repeat the MRI in 8 weeks, which was in early May. I did so. The three lesions were still there, and one of them was slightly larger.

My oncologist sent me for a consultation with a surgical oncologist. I saw him and he said they did not know what these spots on the MRI were for sure, but they still might be mets even though they did not show up on a CT or PET scan. He said my choices were do nothing and wait till they got bigger and showed up on a CT scan in a few months (if they were going to be mets) or have exploratory abdominal surgery and remove them for biopsy (they were too small to hit with a needle biopsy and there was and they were divided between two sides of the liver).

If I opted for the exploratory surgery, they wanted me to have yet ANOTHER CT SCAN to check again for mets in the chest/lungs since MRI does not pick up those as well as on a CT Scan (remember, this whole process started with me wanting to avoid radiation of CT scans).

So I had another CT scan the first week of June. It again showed nothing. The report said "cannot confirm three lesions seen on MRI."

A week later I chose to do the exploratory surgery...I couldn't live with wondering if they were cancer. Indeed it turned out all three were. One was bigger than it looked on the MRI and next to a major blood vessel. While in there they found two additional "things" on my liver that had not showed up on MRI or other types of scans. Those were removed but they turned out not to be cancer.

So I am now 8 weeks out from liver resection surgery, and starting chemo next week.

They caught my mets very early, and never would have until months later if I had not had an MRI instead of a CT scan. So if the CT scan and PET scan are negative, you might want to ask for an MRI instead of letting it go and thinking you are NED.

Again, what my oncologist said is CT scans are best for finding mets to lungs, but MRIs are more sensitive to abdominal area (don't know about pelvis).

Ironically, today I had to have another CT scan as a baseline before chemo. That made me wonder if they never showed the cancer when I had the mets how useful it will be as a baseline? Just more radiation, although I guess at this point now that I am Stage IV that should be the least of my worries.

I just have to hope for the best, and when chemo is over you can bet I will be fighting for another MRI instead of or in addition to the CT scan at the end of chemo.

By the way, I had no symptoms with the mets and my CEA was only 2.5. It was 2.0 when I had my colon resection surgery in 2009. Back then, my colorectal surgeon said CEA would not be a useful cancer indicator for me because it was always within normal range even with cancer. For the 15 months between Stage II colon surgery and Stage IV liver surgery, my CEA bounced back and forth between 0 immediately after colon resection, to 1.5, three months later, to .8, 1.5, .6, to 2.0.

What gets me is that in my case neither CEA nor CT nor PET scan was useful as a marker in finding my cancer mets recurrence. It is by chance it was found at all before it became large and difficult to remove or inoperable. Boggles my mind.

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