Think it's back :(

[seasnail]

A follow up to my last post about a noisy scan...apparently it was the computer not the machine (or him moving too much), as the radiologist said it was clear to them without the noise that there was definitely a small light up spot in my husband's liver in the area where one of the old lesions was. The weird part is his CEA went down from around 2.9 in Sept, 4.8 in Nov and back to 3.5 last week (not a good indicator anyway, but still strange), but apparently the radiologist said it was there from his last CT in Sept, but it is not on the report? Our onc did bring up the possibility that there are better case scenarios - like something about it being a sutra spot or irritation (which does make sense as my husband's body hates those things) but we are preparing for the worst. Not sure if it's just going to be a wait and see, but we have more blood tests in about 2 weeks. Are there any other possible reasons for it to light up, or am I grasping at straws?

[eleven11]

My mom is in the same situation. Had a VATS in Jan 2014 and a September PET/CT shows a suspicious spot adjacent to the surgical staple. Three months later, the size is the same and the PET increased from 4.3 to 5.6. The Onc still is not convinced that it is a met, but something post surgical. Options are to keep watching and waiting or to just zap it with SBRT. Hopefully it is just lighting up because it is post surgical.

What are the PET values for the lesion in question?

[singingholly]

Could well be a scar...

[Bev G]

Anything that is inflammatory (ie increased blood flow) will light up a PET. If he has "irritation" or inflammation, or an infection from something, the PET will light, and often at the lower level SUVs. I hope this is nothing. Also, when CEAs are not good markers, they are just that: NOT GOOD MARKERS--so please don't try to read anything in to them.

Hang in there on the wait.

Bev

[eleven11]

my fiance is a dr at a prominent hospital and has a lot of radiology friends. He has asked them their thoughts on Pet SUV and the consistent response is that there is no "standardized values" and they are only concerned when the value is very high. Whatever that means.

[mstults]

Could be possible that they took another look at the reference CT again after the PET light up.

[seasnail]

Thank you all for the responses. The hardest part is now waiting, and we even joked before the results that if it were to happen, of course (sarcastically) it would be now right as we were feeling 'back to normal' again...and then literally got the call on his first day back to work. It just feels defeating, like starting over with the worry and the scans and the discussions on steps for treatment. We are still hoping it's nothing but want to be ready.

@eleven11, I'm not sure...is that found on the written report of the scan results? It's not something they talk to us about so I'm not sure what that is.

Thank you again all.

[eleven11]

Yes, pet SUV uptake values would be on the report.

[seasnail]

Thanks for the info. We haven't gotten the report yet (usually shows up online for us within a week or two) but will check once it comes in and post back.

[seasnail]

Yes, pet SUV uptake values would be on the report.

Just wanted to update, we got the pet results and it says maximum suv is 3.6. What does that mean, generally speaking?

[rp1954]

Don't panic. I would stay on track with current ADAPT treatments until you can find tweaks, information, or major changes. A tweak might be a minor addition, like more vit D3, PSK, cimetidine or perhaps nutritive adjunct.

Even if something were growing the objective should be to stop or slow it down, and most importantly, stop any new metastasis (continuous chemo, cimetidine etc) until any spots can be cut or punched out. One possibility is that your DH is essentially dynamically stable, something growing and then popping, releasing biomarkers and coagulation factors. If that's the case, we monitor for preliminary signs of hypercoagulability too, like shortened PT/INR and aPTT times. If PT and/or aPTT are short we're going to look for treatment adjustments and/or more formal coagulation lab tests and coagulation adjustments.

CEA changes might be partly smoke or DM/sugar influenced or other variables, although taking them seriously is part of the contingencies here.
The SUV 3.6 shouldn't be ignored but it's still pretty low activity. I would interview some and size up surgeons for that potential site.

When we're not sure, we do more blood tests (e.g. CA19-9, ESR, LDH added), more frequently, the blood sample intervals a month or less, or even repeats. Truth is, informed patients can monitor this stuff far closer than the drs can because of longer case dwell time with direct self interest, and fewer artificial data restrictions.

[Maia]

Don't panic. I would stay on track with current ADAPT treatments until you can find tweaks, information, or major changes. A tweak might be a minor addition, like more vit D3, PSK, cimetidine or perhaps nutritive adjunct.

Even if something were growing the objective should be to stop or slow it down, and most importantly, stop any new metastasis (continuous chemo, cimetidine etc) until any spots can be cut or punched out. (...)
The SUV 3.6 shouldn't be ignored but it's still pretty low activity. I would interview some and size up surgeons for that potential site.

I totally agree with that, Puka. My opinion too. NED forever would be heaven but going and going during years, if one has to, with two oral agents (ADAPT) and some interventions, here and there, all the while with good quality of life, until an immunotherapy means cure... all that sounds like something in the horizon for most people. : )

Huge hug

[eleven11]

3.6 isn't that significant to confirm malignancy according to 3 radiology friends of mine at very reputable US hospitals.

[seasnail]

Thank you again everyone for your responses and reassurances. I had to take a little break from everything cancer related as we were getting overwhelmed and ahead of ourselves with the news and forgot to come back to update.

So far CEA/CA 19-9 markers are stable for his last two blood draws. Not up or down. It has been our only measures for the past while, but do have more PET/CT scans coming up in a few weeks. I'm already feeling nervous and having trouble sleeping just thinking about it.

[seasnail]

I just wanted to update.

We had scans again this week and there was no change in the spot. I guess that's good or bad, depending on how you look at it as it could signify it's not a met since there's no change, but if it is, it's bad that chemo isn't killing it! I guess all blood work and whatnot came back normal though, phew, and CEA/CA 19-9 haven't budged. They now came to an agreement that the spot is probably scar tissue or something to do with the surgery because it's right at the incision, and the radiologist went through all the old scans and saw it's consistent to what was seen a few weeks after the surgery, and every scan afterwards, so fingers crossed this is the case! My husband will stay on ADAPT as normal and we are even pushing scans out to every 3 months instead of every 2. We feel relieved, but are still anxious since only time will tell with this.