Freaking out of my mind...CEA climb and specks on lungs

[Punky44]

I do this all the time. In fact, I just came home from a three month lung scan. The spots he saw three months ago were not there today. Yay! I was diagnosed with rectal cancer almost thirteen years ago and have had recurrences in my lungs three times. Twice I had VATS and once I had SBRT. My lungs aren't in great shape now, but for the most part I feel great. I have lots of scarring in my lungs from the recurrences and a MAC infection that they thought was a huge amount of mets. (long story, luckily it was an infection ) Lung mets usually grow slowly so I don't think waiting three months will be a problem at all. I also think in many instances there are ways to get rid of these mets depending on how many and where they are located. You asked in the above post what the odds are that it is an infection vs. mets. I think it is usually an inflammation or an infection. There is absolutely no reason to be upset now. Chances are it will be fine We think that what he saw in my lungs on the last scan (three months ago) was inflammation from a bad flu/cold that I had in March. It can take that long for the inflammation to clear up.

Wow thank you so much for this comment and so happy for you that you keep kicking cancer’s butt with these recurrences! So lung Mets are typically slow growing? She’s always had a 5mm spot that remained totally unchanged even through chemo when her tumor and lymph nodes were shrinking and now all of a sudden there’s a 13x9mm “density” in that area and they are telling us it’s either that spot grew or an “infectious infiltrate superimposed” over that spot. Praying it’s the latter.

With how long it took for your infection to clear up, do you think I’m wrong to have a PET in a month? I guess I’m hoping it’ll give us more info one way or another. If it lights up, do you think they’ll just say come back in X months and we will try again?

[ams5796]

Everyone's tolerance for this journey is different. When they first started seeing nodules on my lungs and I was told that we were going to "wait and watch" I hated that idea. I wanted to know right away and treat it right away. I found out over the years that lung mets are slow growing and there is time to wait. If it were me I would wait for the three month scan. I don't think you'll get any good information from the PetScan at this time. As I mentioned if it is cancer there are so many ways to get rid of lung mets. It's all about how many there are and where they are located. I know it's hard, but I would try not to think about too much until the three month scan. You may be worrying for no reason. It very often turns out that way.

Good luck. I can answer any other questions you have.

[bitchslapped]

Punky,

You know how I feel about inserting oneself as the patient vs your mother & then sharing those stresses w/the patient that a caregiver should carry on their own back (for the most part). Remember our little talk here:
viewtopic.php?f=1&t=61055&p=483618#p483618

Her doctor is your guidance unless you get a 2nd opinion (pulmonologist?).

Just keep in mind that if she is on Medicare, they don't give those PET/CTs away. There may be a lifetime limit. Check her Medicare booklet & make those PET scans count.

Remember the cancer journey is hurry up & wait. It's rough @ best, I know.

Best Wishes
BS

[Punky44]

Everyone's tolerance for this journey is different. When they first started seeing nodules on my lungs and I was told that we were going to "wait and watch" I hated that idea. I wanted to know right away and treat it right away. I found out over the years that lung mets are slow growing and there is time to wait. If it were me I would wait for the three month scan. I don't think you'll get any good information from the PetScan at this time. As I mentioned if it is cancer there are so many ways to get rid of lung mets. It's all about how many there are and where they are located. I know it's hard, but I would try not to think about too much until the three month scan. You may be worrying for no reason. It very often turns out that way.

Good luck. I can answer any other questions you have.

Sorry for the delay in replying—thanks so much for your input—right now our PET is scheduled for end of November but we are going to try to connect with the original oncologist we saw back in April to see what her thoughts are...I know we may very well not learn anything new if the infection is still there and “lights up” but I’m wondering if maybe we could get any new info one way or another—if the spots were smaller, wouldn’t that lean toward infection? Or if they were bigger, lean toward aggressive spread? I know you said they are slow growing but since this is the first time we’ve ever seen anything like this, watch and wait for 3 months is really giving both me and my mom a huge amount of anxiety. I guess we are thinking we’d rather be overly cautious just because it’s our first go-around with “lung thingys.”

I will keep you posted—please keep us in your thoughts.

[Punky44]

Punky,

You know how I feel about inserting oneself as the patient vs your mother & then sharing those stresses w/the patient that a caregiver should carry on their own back (for the most part). Remember our little talk here:
https://coloncancersupport.colonclub.co ... 18#p483618

Her doctor is your guidance unless you get a 2nd opinion (pulmonologist?).

Just keep in mind that if she is on Medicare, they don't give those PET/CTs away. There may be a lifetime limit. Check her Medicare booklet & make those PET scans count.

Remember the cancer journey is hurry up & wait. It's rough @ best, I know.

Best Wishes
BS

Sorry for the delay in replying! I remember that time all too well! Ugh. Right now we are both just really worried to wait 3 months since it’s all new to us and since they agreed to a PET, we went with it. I know it may just be ambiguous but I guess I’m hoping it somehow yields new info one way or another and will let us get a 2 month head start on anything that could be bad.

[MetastaticEquilibria]

Do you have access to the raw imaging data? And past raw images? I have noticed that lung spots that turned out to be believed to be infections start out large (~1 cm or more ) and cloudy looking. They don't shrink, but sometimes fade away. Lung mets, on the other hand, start out small (a few mm) and solid, and grow slowly. At least in my case, and noting with reservation that even the experts have said they can’t rule out anything for your mother yet. But I would go with their gut feelings for now. In my experience radiologists are not deceitful.

[MetastaticEquilibria]

Just keep in mind that if she is on Medicare, they don't give those PET/CTs away. There may be a lifetime limit. Check her Medicare booklet & make those PET scans count.

A lifetime limit on PET/CTs? That’s insane!

Is that a limit on PETs, PET-CTs, and/or CTs? Or just a limit on PET-CTs? Either way, how is that medically justifiable?

So glad I don’t live under that insurance system.

[Punky44]

Do you have access to the raw imaging data? And past raw images? I have noticed that lung spots that turned out to be believed to be infections start out large (~1 cm or more ) and cloudy looking. They don't shrink, but sometimes fade away. Lung mets, on the other hand, start out small (a few mm) and solid, and grow slowly. At least in my case, and noting with reservation that even the experts have said they can’t rule out anything for your mother yet. But I would go with their gut feelings for now. In my experience radiologists are not deceitful.

No just the text of the findings.

This “spot” was unchanged for a year since diagnosis (5mm) then all of a sudden is 9x13mm in that same area.

[MetastaticEquilibria]

Do you have access to the raw imaging data? And past raw images? I have noticed that lung spots that turned out to be believed to be infections start out large (~1 cm or more ) and cloudy looking. They don't shrink, but sometimes fade away. Lung mets, on the other hand, start out small (a few mm) and solid, and grow slowly. At least in my case, and noting with reservation that even the experts have said they can’t rule out anything for your mother yet. But I would go with their gut feelings for now. In my experience radiologists are not deceitful.

No just the text of the findings.

This “spot” was unchanged for a year since diagnosis (5mm) then all of a sudden is 9x13mm in that same area.

Oh, that is even better, they have measured the size for you. Mine typically just say “grew/shrank/unchanged,” leaving me to make the measurements myself, at least for small ones. Partly I think because measurement errors are surprisingly large in that regime.

Anyway, the machine operators are the ones who know best the characteristicts of their machine. That’s what they do all day. If they say it is not time to panic yet, I’d take their word for it. There will be plenty of time to panic later if needed, and doing so before it is needed is unproductive.

[Punky44]

Mom’s PET is tomorrow. Please keep her in your thoughts/prayers that it gives us some answers, preferably good answers.

[stu]

Will do . All the best and hope it brings good news.
Take care ,
Stu

[AmyG]

Hopefully it's nothing! How long do you have to wait for results?

[Punky44]

Hopefully it's nothing! How long do you have to wait for results?

Scan is this afternoon and we will know results tomorrow.

[claudine]

Fingers crossed. I hope you manage to get some sleep tonight. Waiting for results can generate so much anxiety!

[AmyG]

Hopefully it's nothing! How long do you have to wait for results?

Scan is this afternoon and we will know results tomorrow.

Update us tomorrow if you're able, I'd love to hear that everything's just fine!!!!