PET/CT follow-up of lung RFA

Joan M · 02-01-2009, 10:25 AM

Hi to all my sisters ... and brothers,

On Jan. 6 I had my second follow-up PET/CT to the lung radiofrequency ablation I had in mid August, and I'm wondering what you think.

The first follow-up in mid Sept. was what the intreventional radiologist expected, but the second follow-up is inconclusive as to a recurrence. The rest of the scan was nonremarkable (yippee!).

Three people weighed in on the results. Besides the staff radioloigst, the films were also read by the interventional radiologist who did the procedure and a pulmonologist. All agreed that it's difficult to determine the difference between inflammation due to the RFA and a recurrence.

Also, I had a wedge resection 1 1/2 years prior the RFA, so there was a lot of scarring and fibrosis due to the surgery. The RFA was treatment for a recurrence in the surgical area.

There's a whole lot of fireworks going on, according to the second report.

The first follow-up report said that the area ablated had an SUV of 1.9 (as opposed to 3.0 prior to the RFA). The second report showed 6.0. There are also two other puntate areas in the vacinity of 3.0 and 2.8. But they have no correlation on the CT part of the scan (also, I was given a CT contrast medium to drink, which is usually not the case for other PET/CTs I've had).

I also have two dilated bronchi with hypermetabolic activity seen along the length of the bronchiectatic segment, and a left hilar lymph node with an SUV of 5.1. The lymph node size was not noted.

My oncologist is concerned about the lymph node. She is less concerned about the punctate spots because they do not correlate with the CT. That is, even though the spots lite up in PET, the CT showed nothing there physically. (The guideline for lighting up in PET is 1 cm, even though something could light up under that size. But CT can show spots as small as 2 mm.)

Here's the report's impression:

1. New bronchocele and bronchiectasis in the left uper lobe at site of prior RFA associated with increased FDG update.
2. Increased metabolic activity in soft tissue inferiorly within the bronchocele is inderminate for the recurrent tumor versus chronic inflammatory change or mycetoma formation. Activity in left hilum is likely reactive change in the lymp node.
3. New inderminate faint foci in the extreme left apex and left subclavian region, requiring attention on follow-up.

Sorry to bog you down with all the details, but just in case anybody's interested in what all this meant to the staff radiologist.

I'm planning to add Tykerb. But my oncologist first wants to get the results of a brain MRI I had the other day, which was a follow-up requested by a neuro-oncologist I'm supposed to meet next week (this is not the regular follow-up by the radiation oncologist who zapped the tumor bed after the surgery, which is scheduled for March, but rather due to a suggestion my the brain surgeon to follow up with a neuro-oncologist).

The radiation oncologist did not recommend antibiotics, in the event of a lung infection for instance, or a biopsy, even though the procedure can be done if I want one. My oncologist did not recomment either of these, as well.

Therefore, I'm going to take a wait-and-see approach, and repeat the scan again in April, unless I have symptoms.

I do have one slight symptom. Sometimes in the morning I have a small cough that produces sputum which has to have a small amount of blood in it. Both the radiation oncologist and my oncologist know about this.

I'm very nervous about waiting another three months for the next PET/CT scan, as I usually don't wait.

Joan

Ceesun · 02-01-2009, 11:23 AM

Hi Joan, Thinking of you and hope you feel well. It sounds like the various docs are right on top of things and you are being monitored closely. I am a little unclear as to what your onc wants do about the lymph node, perhaps the chemo will take care of it, IF it is some kind of recurrence. I probably would focus on that right now. It seems the report does not suggest an "action plan" right now and perhaps a 1-2 month wait would be okay. Wish I could suggest more. Ceesun

chrisy · 02-01-2009, 12:52 PM

Joan,
Indeterminate reports are the absolute worst. If we have to be dealing with this crappy disease, the least they could do is have the ability to accurately figure out what is going on. Unfortunately, these scans are just another reminder that both treatments and diagnostic tests are art AND science, and both are imperfect. I'm still waiting for perfection of the Star Trek medical tricorder.

Mainly what the report seems to say is they can't say - although I'm encouraged by the comment on the node "likely reactive change"

I'm not clear on what, if any, systemic approaches you are taking - you say you are going to add Tykerb, but I forget, you are adding tykerb to ....what?

Rather than focus on the uncertainty of the reports, my doctor usually considers what the ramifications are for treatment. IF, and that's a capital IF there is recurrence, what would the plan be?

My heart goes out to you, I would be a total wreck waiting for the follow up - but at a minimum, discuss what the next steps would be so you are prepared and maybe consider them as precautionary steps now.

Hang in there.
chris

Patb · 02-01-2009, 03:57 PM

It is hard for me to understand exactly everything
they are saying but my thoughts and prayers are
with you. As for me, I could not wait that long, just
have to check things out sooner especially with the cough.
patb

Jean · 02-01-2009, 05:16 PM

Dear Joan,
I just wanted to let you know I am thinking of you and I am sorry the answers are unclear....It is very difficult playing the waiting game. Joan go with your good instincts, they have never failed you.

Will keep you in my prayers and please keep us updated.
Hugs,
Jean

Henny · 02-01-2009, 05:31 PM

Joan,
I know it's really hard not to get definitive results (one way or another) but it can take a long time for the inflammation to settle down after treatment. The SUV's (Standardized Uptake Values) are based on your weight, amount of tracer you were injected with, and how long after the injection you waited for the scan. The numbers can change if you have the scan on different scanners. Sometimes I guess they can be useful but I wouldn't put all my money on that horse. Imaging is a zillion times better than it used to be a few years ago but it still isn't an exact science since there are so many individual quirks
How about another PET/CT in 2 months instead of 3?
My positive thoughts are with you

Henny

Shobha · 02-02-2009, 10:43 AM

My heart goes out to you, Joan. I am still new and not in a position to give much advice.

My prayers and postive thoughts are with you. God bless you with the right information to make the correct decision.

Joan M · 02-02-2009, 05:56 PM

It does seem a mystery that even though there are areas in the lung that are lighting up with SUVs higher than I've ever had before, that a determination cannot be made.

Chris, I take Herceptin (When I re-wrote my signature I inadvertently left that out).

I initially took Herceptin off label for 52 weeks when I was diagnosed in Sept. 2003 with Stage IIb, and then started it again after the 1 cm lung nodule was discovered in April 2007. I haven't added chemo yet because I've been NED after each procedure (after the lung wedge resection, after the radiofrequency ablation for the lung recurrence, and then again after the brain surgery in October that removed the 3 cm nodule from my left frontal lobe). I went off Herceptin for three months in late 2007 because my muga score dropped from 70 to 57, and my onc said that a 10 percentage point or greater drop is the guideline for stopping Herceptin. After three months my muga came back up and I started taking it again. Now my onc wants to add Tykerb.

Ceesun, my onc was concerned about the lymph node more than the two new spots that lite up because no nodules could be seen on the CT portion of the scan where the spots are. That is, the PET part measured a signal for metabolic activity, but the CT didn't actually physically see tumors. Also, she'd be concerned if it were in my lymph node.

I've been thinking that I might not want to wait until April for the next scan. It does seem like a long wait.

Your thoughts and prayers are great comfort to me. I often wonder how I would have ever gotten through the brain surgery if it hadn't been for all the support and care I received here. I can't explain it other than to say that when I got into the operating room it felt somehow like I had been there already, and in some way that really helped me deal with the fear.