The Colon Club

Hi everyone
I posted on another place here but I dont think my question was clear. Im hoping for people in similar situations to tell me there stories of what was next in terms of testing. If CT scans and ultrasound are inconclusive what did/does your dx do for small indeterminate lesions? I have another CT scan tomorrow and if they once again dont offer any clarity ( Onc on the fence about what they are) what should I ask for? My onc thinks they are too small for PET scan - largest 1.1 or 1.2 cm, sthen 4, 6 and 8 mm.
take care,
Nordy

My earlier post:

When I was first diagnosed with cancer on my colon last year it was noted that I had indeterminate nodes on my liver, lungs and kidney, all smaller - largest being 1.2 cm. I was under the impression that they would be watched for 3 things - growth (potential cancer) shrinkage (potential cancer responding to chemo) or stagnant (potential scarring). Non of these were concrete but loose rule of thumb to watch for as infection was another possibility. On my second scan the nodes had disappeared and there was/is a big question of "were they or weren't they" mets. I was sent to ultrasound on Monday for a different look and low and behold the nodes are all still there. The ultrasound has not been able to clarify anything except they show bigger butt that could apparently be differences in measuring between ultrasound and CT scan. So now I'm back on Tuesday for a 3rd CT scan for yet another look. If that doesn't tell the story then I'm really not sure what the next step usually is or what I should ask for. If they are indeed mets then early intervention is supposed to be key which makes me uncomfortable with the "lets just wait for them to do something" approach. On the other hand I dont know anything....

I have learned that when nodes are under 1 cm they can seem to disappear but just not be visible in that particular scan but it sure doesn't help you feel confident in the process of scanning..

Any input from others on what the next step usually is from your experience?

Have they mentioned doing a biopsy? I believe it's an easy procedure, they use a needle. My onc mentioned biopsying my liver mets at my first appt. but he never did saying it wasn't necessary.

Hi martd
Another Onc at the clinic mentioned biopsy in passing but I forgot to ask my own onc about it. I hesitate a bit there because of the chance of needle track seeding should it actually be cancerous, but of course if there is no imaging techniques that can answer then that is probably the next step.

thank you for answering
Nordy

On my husband’s PET scan they could see 2 nodules in his lung. They were noted as 8mm and 11mm on the CTscan a week earlier.

I had a 4mm nodule show up on a scan 2 years ago. My oncologist and pulmonologist both said too small for pet scan to pick up or to biopsy. Pulmonologist said it would have to at least double in size. I had 3 repeat scan within the following year with no change in size. The last scan in May, the radiologist attributed it to fibrosis as I have been monitored for lung scarring and inflammation that appeared after chemotherapy. I will have a scan in April which will be a year from the last, and hopefully it will have not changed or maybe even shrunk or disappeared.

Hi ,
My mum had uptake on a 7 mm lung met with a PET scan . Removed by VATs and confirmed to be a met .
Hope you get answers soon .
Stu

The size you mention can definitely be detected on PET by a good radiologist. My lung nodule was 9x11mm - uptake only 1.0 on PET, but my wonderful radiologist could see that it was ever so slightly brighter than surrounding tissue (I looked at it with him) - it was very subtle, but detectable and did turn out after VATS to be a met.

Take care,

Thank you all for the replies!

This gives me confidence to look at another facility if ours wont continue to test with other modes of scanning. CT tomorrow morning so I might possibly have an answer by Friday

thanks again,
Nordy1

Nordy1 wrote:Thank you all for the replies!

This gives me confidence to look at another facility if ours wont continue to test with other modes of scanning. CT tomorrow morning so I might possibly have an answer by Friday

thanks again,
Nordy1

Best of Luck tomorrow Nordy1 !!

Hi All

Just thought I would update. The scans have shown no growth for the last 3 months so they called it stable. The kidney node is still indeterminate and the liver they think is NAFLD. I see the doctor in a couple weeks but I think they want to take a watch and see approach. Im not sure Im comfortable with this yet, they haven't done a PET or an MRI so i cant help but feel they should try something else first. I also wondered if a second radiologist opinion of the scans would help, not really sure if thats a thing though.

Im struggling....it feels like im giving up if I just agree to wait and see what happens. I know its a legitimate sometimes, but are 2 CT scan and an ultrasound reasonable diligence?


Nordy1

6.6 mm met in lung. They tried to talk me into chemo and watching to see how it reacts. No thanks! Had it removed by VATS at Mass General and THEN did the follow up chemo. Since then, my scans are clear. I had no idea how much chemo would affect me. I went from 150 to 103 pounds. I am happy I had the surgery first because I was stronger than.

I was NED according to CT scans during and immediately after FOLFOX, but my oncologist and I pressed for a liver MRI because I had had a tiny liver met detected and removed by the surgeon during my hemicolectomy. That met did not show on the pre-op CT scan. The MRI showed another tiny liver met and two enlarged nodes in the porta hepatis, so I was clearly not NED after all. The radiologist reviewed the prior CT, and in hindsight was able to find the nodes now that the MRI had revealed their position.

I think that the liver met is 5mm, about the same size as the earlier one that the CT also could not detect.

At this point, my next scan to see if Keytruda is working will be an MRI. More CTs are obviously likely to be useless.

I had "dozens and dozens" of tiny sub centimeter tumors throughout my liver that never showed up on any of my CT scans and were only found when my MD Anderson liver surgeon opened me up to do a liver resection and found them all.

My liver resection was terminated...he told me that there was nothing more he could do. I got a second opinion from Dr, Kemeny at MSK...and the rest is history.

Generally, a 7-8 mm lesion on CT can be detected on PET. Smaller lesions that are very hypermetabolic can sometimes be seen. But if a lesion is smaller than 8 mm, and it is negative on PET, you can’t be sure that it is truly negative because it may be too small.

Sometimes a person will need all modalities. Each has its advantages and limitations.

I had nodes that were 1cm on a CT scan but never noted on my report (angry about that) and then my CEA went up slightly and they gave me a PET scan. PET showed high activity in the nodes with suv of 12 which is HIGH! They knew then that they were mets. The next CT scan showed one grew to 1.3 cm. So both CT and PET were able to pick them up at that size. I think PET/CT is your best bet if they agree to it. My opinion only of course but that's been my experience. Best of luck!!

-Brenda