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

Posted: Tue Oct 22, 2019 5:15 pm
by Punky44
My mom went in today for her 6 month check and got a CEA draw and CT scan....

Her CEA rose from 1.9 to 2.6. I saw this in the portal even before the meeting and it freaked me out. I know it’s still “within normal range” but it just seems like such a significant jump given that her other readings were 2.1 and 1.9.

I held my breath the rest of the day but we just got the results of the CT and my heart sank—they said they found multiple “specks” in her lungs and said it “could” be inflammation (she’s been sick with a minor cold/cough) but “as a precaution” they want her back in January for another CEA and a PET scan and to “try not to stress” in the meantime.

Well I AM STRESSING because this basically screams recurrence to me and I feel like it’s like saying “Yeah we think your cancer is back but we don’t have the technology to prove it right now so let’s let it grow for three months and then we will be able to prove it.”

I literally am crumbling right now—what can we do????? Are we seriously just supposed to twiddle our thumbs for 90 days until we get devestating news?

Please help me understand what we can do at this point. “Worried” “stressed” and “freaking out” is an understatement for how I am feeling right now. I prayed so hard to just have a stable number and a “clear” CT and now this.

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

Posted: Tue Oct 22, 2019 5:44 pm
by boxhill
I think you should take the report at face value: it may be inflammation and it may not be.

Many, many people have lung nodules that are related to current or former infections and are NOT malignancies.

Try to refrain from sharing your fear with your mother, unless she also feels that way and brings it up. In which case a balanced reaction would be helpful.

I totally get your reaction, but try not to freak out until you KNOW you have something to freak out about.

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

Posted: Tue Oct 22, 2019 5:56 pm
by stu
We have surfed a few of those anxiety inducing situations . You are both definitely going to get through this.
Many people discover their lung nodules are infection / inflammation. It is not a case of waiting for confirmation and they may be gone at the next scan .

The way I handled it was to permit an allocated slot to worry , look at the options / worse case scenarios . Then drag my mind back to the reality of the situation. The facts . There is a situation they want to keep an eye on but may well be nothing .
She is doing very well so far .
Take care ,
Stu

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

Posted: Tue Oct 22, 2019 6:54 pm
by radnyc
Take a deep breath and try to relax. This could be nothing at all. 2.6 is well within normal. There are many things that can cause an elevated CEA. A lot of people are cancer free with above normal readings.

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

Posted: Tue Oct 22, 2019 7:56 pm
by Punky44
Thank you for your replies Boxhill, Stu and Radnyc. I am trying so hard not to jump to the most catastrophic scenario but it’s really hard. I am also failing miserably at trying not to project my fears and anxiety onto my mom—I am like the total opposite of a strong supporting caregiver right now.

Okay the report just got published to the portal and says:
“CT of chest showed new nodular consolidation and patchy groundglass opacities in the left lower lobe since 04/23/2019, most likely infectious in etiology. Associated mildly enlarged left hilar nodes are likely reactive. Development of a 13 x 9 mm irregular nodular opacity in the region of the previously stable smaller nodule. This could represent infectious infiltrate superimposed on underlying nodule, however cannot exclude an enlarging/neoplastic nodule. Short interval follow-up could be considered. Slightly increased thickening of the margin of a small air cyst in the right lower lobe may be infectious/inflammatory, but indeterminate.”

Then the doctor’s note says:
“Today her CT scan did not reveal any clear evidence of recurrent/metastatic disease in the abdomen/pelvis. However, CT of chest showed some nodularity change in both lungs, the left lobe nodularity is more consistent with infection/inflammation, I am more concerned for the right lung nodular lesion so I would bring her back in 3 months with repeated CT scan and blood tests.”


His use of the word CONCERNED literally makes my stomach turn. Like I don’t know how to read this any other way than....cancer.

I have severe anxiety obviously but would you guys read this as doom and gloom like I do? Please be honest.

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

Posted: Wed Oct 23, 2019 1:10 am
by Punky44
More questions since I can’t sleep...

Isn’t 13mm x 9mm huge?

Why can’t they do a PET scan right away?

Why can’t they biopsy it?

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

Posted: Wed Oct 23, 2019 3:07 am
by stu
Hi ,
Have a look at your thumbnail and it’s probably the size of the nodule so really it’s not that big . But I agree with you it’s big enough to have a PET scan .
My mum had a PET scan on a lung nodule under 1 cm and it had uptake and was removed . They were concerned that the PET scan works better in mets over 1 cm so she would fit that criteria .

I am honestly not sure why they want to leave it 3 months . I can only suggest you contact her oncologist . I can understand their desire to eliminate infection . However my mum’s were very slow growing so three months did not concern me . If you don’t have a gauge of the growth rate I can understand why you are concerned . I don’t think your over reacting to ask that question .

Please come here to share your anxiety. You can PM me anytime . The way I put the brakes on with my mum is by continuously telling myself I am concerned but she has to then also endure treatment . We are here to support you .

Take care ,

Stu

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

Posted: Wed Oct 23, 2019 3:10 am
by stu
I also have read that lung biopsies are not always popular as they can cause tumour tracking as they withdraw the needle. Although some do get them so you could discuss this with your mum’s team to see which side of the fence they sit on this .
Take care ,
Stu

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

Posted: Wed Oct 23, 2019 9:42 am
by Claudine
I agree with Stu - I think a 3 month wait is long, especially if you and your mother are worried. I'd request something closer, maybe in a month to make sure that the infection cleared? As you can see from my signature, my husband had many, many small lung lesions but since they were small when discovered (too small to register on PET actually), they all cleared with chemo (and of course, there's a strong chance that what your mom has is just benign and caused by the infection, fingers crossed that's the case!)

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

Posted: Wed Oct 23, 2019 12:06 pm
by Punky44
Thank you so much Stu and Claudine.

I called this morning and asked all of these questions and said we didn’t feel comfortable doing nothing for three months so the oncologist agreed to order a PET in a month, but he cautioned me that the PET will also show uptake for infection as well so that’s why he wanted to wait. So I asked if it was possible it could clear in a month and he said there’s no way of knowing. So I hope we are doing the right thing here. In my mind I’m thinking we can either see it disappear (good news), grow (bad news) or still be in limbo (no different than right now) so it’s worthdoing the PET in a month and at least get our answers 2 months early.

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

Posted: Wed Oct 23, 2019 1:50 pm
by stu
Sounds a good plan . Is she on antibiotics? I honestly don’t know how long lung infections take to clear but it sounds a reasonable amount of time .
You sound more comfortable with that plan anyway .
Take care ,
Stu

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

Posted: Wed Oct 23, 2019 2:28 pm
by Punky44
No antibiotics—I would say she started feeling better last week. We’ve all had this upper respiratory thing for a couple weeks.

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

Posted: Thu Oct 24, 2019 11:27 am
by AmyG
That's really reasonable.

I get why they wanted to wait, but I also understand why you wouldn't want to wait that long! Here's to hoping it's nothing. And even if it's something, it's been recognized sooner rather than later.

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

Posted: Thu Oct 24, 2019 12:02 pm
by Punky44
Thanks Amy.

I just wish I could find some guidance on how long to wait for infection/inflammation to clear or start to clear so I can be sure the scheduled PET in a month will be meaningful. I also wish I could better understand statistically what we are looking at here—is it like a 50/50 chance it’s malignancy vs infection or does it swing more one way or the other? The oncologist she had the meeting with was totally poker faced in his responses so we walked away having no idea just how “worried” we should be (so of course I default to maximum worry.)

It just sucks to wake up every day since Tuesday and feel differently about her NED status and outlook now. I feel so depressed and anxiety filled. And we have a family wedding this weekend and I just feel like I will zombie through it.

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

Posted: Thu Oct 24, 2019 3:44 pm
by ams5796
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 :shock: ) 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.