so the PET result from this morning says...

[MBinOregon]

Hello Everyone,

so my 3 months CT on Tue was not good (it showed increase in size for nodules or whatever things on my right side where my right lung used to be), so my rad onc ordered a PET and I went in 745am this morning for the scan.  MyChart (it's an online patient portal if you're not familiar) popped up saying a test result came in.  I didn't jump on it and read it cuz 1. my rad once had said he'd call me after the result came out and 2. I really didn't want to confirm CT and my fear.

Well, it's been over 2 hours since the result came out and he hasn't called.  So I decided to brace myself and read the report myself.  Conclusion: it's not good. sigh.

I'm copying/pasting the entire content here - if someone can tell me what first 2 lines are saying please... cuz on top of right chest area I'd been worried about, now those 2 lines are making me freaked out to say the least.  

-MB

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FINDINGS:

Head and neck:

Limited evaluation of the brain demonstrates intense FDG uptake in the visualized cerebral cortex gray matter.

Physiologic FDG uptake is seen in the ocular muscles, salivary glands, oropharynx, and vocal cords.

There are no pathologically enlarged or hypermetabolic lymph nodes.

Thorax:

The right lung is surgically absent. Simple fluid is seen within the right pleural cavity. There is compensatory hyperexpansion of the left lung with rightward midline shift of the mediastinum. Mild uptake along the right pleura is similar to prior.

Redemonstrated mild uptake in 2-3 subcentimeter right retroclavicular lymph nodes, with SUV max of 3.2, previously 2.9 (CT 72).

Redemonstrated mild uptake within a subpleural nodule of the right apex with SUV max 3.6, unchanged (CT 77).

Redemonstrated periaortic lymph node is unchanged in size on CT, with max SUV of 3.7, previously 2.5 (CT 105).

Right axillary lymph node is unchanged in size measuring 1.1 x 0.8 cm, with max SUV of 4.2, previously 3.4.

Redemonstrated mild uptake within a right subcentimeter subpleural nodule posterior to the right lower lobe with SUV max of 2.4, previously 2.5 (CT 124).

There are no suspicious pulmonary nodules of the left lung.

Abdomen and pelvis:

Physiologic FDG uptake is present in the liver, spleen, and bowel.

The adrenal glands and pancreas are unremarkable on the non-contrast CT.

Physiologic radiotracer clearance in the kidneys, ureters, and urinary bladder. Intense signal from excreted tracer limits evaluation for malignancy in the urinary tract.

The abdominal aorta is normal in caliber.

There are no pathologically enlarged or hypermetabolic abdominal, pelvic, or inguinal lymph nodes.

Musculoskeletal:

Physiologic FDG uptake is present in the axial and proximal appendicular skeleton. Degenerative changes of the spine, with associated multifocal increased FDG avidity favored to be degenerative, most pronounced at L3-L4.

No suspicious lytic or sclerotic osseous lesions are visualized on the CT.

IMPRESSION:

1. Since 5/4/2020, stable mild uptake along the right pleural nodularity. Mild increase in the level of uptake within the right axillary, mediastinal, and subpleural lymph nodes, although not significantly changed in size, nonspecific, may represent recurrence.

2. No new suspicious lesions.

[Tom Galli]

MB,

Don’t take this for gospel but to me, the first line means: they didn’t see much brain area and what they saw shows very high FDG uptake in cerebral cortex. But cerebral cortex is always in high gear. It regulates automatic body functions like breathing, heart beat and etc. So it is an odd way of saying “normal”. I think!

The second says, I think, normal uptake (up take consistent with physiology activity of the named areas.) 

I conclude this because neither mentioned area, cerebral cortex, ocular muscles and the like is mentioned in the “Impressions” paragraph. 

But, be mindful I’m not a radiologist. 

Stay the course. 

Tom

[Lisa Haines]

Dear MB,   

 

     As a non Pet Scan person or a medical professional --  I have NO idea what most of this is saying?  

     But,  I did want to pop in and wish you the very best.   I hope you'll soon get an upset from your Oncologist so that you can better explain exactly what this means.

     I know I see that it show Stable uptake since 5/4/20 and Stable is always a good thing for me.  Also noting that there are no NEW suspicions lesions, sounds good to me too!

    Take care and please post again, once you have more information from your team, but PLEASE try to to overwhelm yourself!

 

     Lisa

[GaryG]

Hi MB:  As Lisa noted the impression section does not show anything alarming or new. If It were me I would have called the Onc and asked for explanation. Hopefully there is nothing to worry about.

[SamGirl50]

Praying 🙏

[LexieCat]

I didn't read anything that sounded bad, to me. I think Tom is right, that "physiologic uptake" means it's consistent with what they expect to see. Here's an article that distinguishes "physiological" uptake from "pathological" (caused by disease) uptake: 

And yeah, the brain is ALWAYS hyperactive. That's why they use MRI to look for brain mets--not PET or CT scans.

Of course, your doc is the expert--hope you hear from him soon.

[LouT]

MB,

I remember when my Pulmonologist reviewed my first PET scan.  I saw my head and almost fainted.  He explained that some areas of the body burn loads of glucose and also showed some areas where I was lit up like a Christmas tree.  Please let him your Onc explain to you, but Tom seems to have nailed the data.

Lou

[Judy M2]

I kind of rely on the Impression section of my PET scan reports, and my oncologist reinforces that summary. His office doesn't post PET scan results to the online chart until he has conferred with the patient, probably so as not to scare us with radiologist language.

Hope you hear back soon so you don't have to worry too much longer. 

[MBinOregon]

Thank you so much everyone, much appreciate your support, as always. My rad onc never did call yesterday (he had said he would - what is he, busy or something? LOL & sigh). The pet report just confirms what ct report said. Dang growing nodules, why can't they either just be junk or go away altogether...

MB

[Rower Michelle]

Hey MB,

I hope your weekend hasn’t been too sucky.   My general rule of thumb is not to panic if there isn’t an immediate call following the scans.  Last Fall I had pulmonary edema pop up & I got a call within two hours to set up a cardiac ultrasound the next day.  
 

If there’s one thing I’ve learned along the way is the oncologist often has a different interpretation than the radiologist.  I’m not a doc but my read on this one is “stable lung junk”

If memory serves me correctly you’re not taking a targeted therapy any more?   Is that right?  If so, now might be a good time to ask about maintenance therapy???

I’m sure your grace and good sense of humor will carry the day.  Hang tight  

Michelle

 

[MBinOregon]

Thank you, Michelle. 

I almost felt your "there, there, it's okay" - LOL and waaaaaaaaaaa (for a visual reference to this, please see the pic below 🤣).  Yes, I was done with the targeted therapy Jan of this year (so I took it for 2 years) - from what I understand, if recurrence, it won't be an option.

I so appreciate your support - I am virtually imposing my head on your shoulder, so stay, don't move.

Lacking grace (have I ever had any? hmmm),

MB

[Rower Michelle]

I hear ya sista.  So now it’s time to get a second or possibly a third opinion.  Ask about a Crizotinib re-challenge.   The rules of the targeted therapy game have totally changed.   That would be my first question.  Since the “old days” of your diagnosis there are newer ROS1 inhibitors available.  This isn’t the end of the road but the start of a new one and with any luck your oncologist will be in the lung junk camp.   Keep us posted. We’re riding this wave right there with you!!!

[TJM]

MB

Tomorrow I meet with my Oncologist in Longview. I am very curious what he will have to say.

I have scheduled a tentative second opinion for Dec 7th in Seattle.  To be completely honest I'm not sure what he could tell me to ease my concern. He has almost zero experience with large cell and in the past when I asked about second line treatment he was pretty dismissive.

Teach me how to post a gif. I have tried several times. I am a talented gif'ter.....😎

I wish you and I both the best. Doubt I sleep much tonight.

Peace

Tom

[MBinOregon]

@TJM Hey, Tom,

Let us know what your onc in Longview says. I'm also curious as well but I hope for the best for you.

I think it's great that you're seeking 2nd opinion - my unsolicited 2cents is I'd look for an onc who has experience with large cell... I was going to say OHSU, but I just remembered you have Kaiser 😬

In the meanwhile, to post a gif or anything into your post, save it in a format this site accepts (the list of it shows as you type a post, I'll capture and add it below so you can see it), then either drag it or click on "choose files".  Once you do that, then you'll see "uploaded images" section pops up under Accepted file types.  Then you click "+" (if you hover over it, you'll see "insert into post" tip) and voila!

Adding you to my prayer...

MB