Can you help interpret PET scan results?

My husband has Stage 4 HL. After his eigth chemo he had a PET scan to determine if any remission and compare to scan at his initial diagnosis.

His Doctor is on vacation, and although we have a paper copy of report... the terminology is beyond us.

IMPRESSION:
1. Interval complete metabolic response of multiple previously described foci of hypermetabolic malignancy
2. Diffusely increased uptake in the bone marrow, reactive in nature.
3. Mild diffuse uptake in the lungs, with associated interstitial changes, likely representing post-treatment/inflammatory changes.

Can anyone add.... it's so hard to wait to have someone verbalize with words we understand.
Thanks,
~ Joyce

Hi Joyce, although I do not have direct experience, I am here to help you in any way that I can. I am hoping that one of our wonderful Supporters here will give you some insight. Your husband is in my thoughts and prayers.

Hi Joyce,

I was in something of the same situation a couple of months back - I'd completed what they had hoped would be my complete chemotherapy treatment, but my doctor was out of the country on vacation. I strongly recommend contacting another oncologist to interpret the results for you. I went to go see another medical oncologist at another hospital who specialized in Hodgkin's.

Do you have a copy of the actual PET scan images? If you can load those up on your computer, sometimes that can give you a fair idea of what's going on - it's a little more tangible than the paper report (which confuses me too).

I was lucky in that I received copies of my PET scans on disc, along with every printed out paper report. This was a request I made of my doctor/hospital, and I think sometimes it costs more, depending on the policies of the hospital. If you can get them to give you DIACOM discs, they usually load up ok on a regular PC.

They never showed up as crisp and clear as they do on my doctor's computers, but I was able to take a peek and look for hot spots (bright yellow), showing strong growth activity in the cancerous/tumorous spots, and was able to gauge the remaining size of my tumors.

From my own conversations with my doctor about PET scan reports, I can tell you only what it sounds like to me from my own reports:

"1. Interval complete metabolic response of multiple previously described foci of hypermetabolic malignancy"
- Based on what I saw with my reports, it sounds like this is saying that the cancerous areas are still metabolizing the radioactive sugars, so the cancerous areas have not abated.

"2. Diffusely increased uptake in the bone marrow, reactive in nature."
- This looks like they're reporting that there may be some spots in the bone marrow that are showing increased activity in response to the PET scan solution.

"3. Mild diffuse uptake in the lungs, with associated interstitial changes, likely representing post-treatment/inflammatory changes."
- This looks like they saw some activity in the lungs that is most likely part of the inflammation that can be caused in those treated with Bleomyacin. Your doctor may want to send your husband in for a pulmonary function test if this concerns him.

One thing to keep in mind (because every set of PET scan results made me fret) is that there are many treatment options. One PET scan that doesn't yield positive results can just be a sign that a different action needs to be taken. ABVD was found to be ineffective treating my Stage 3 Hodgkin's, and after four months of ABVD, I was switched to Escalated BEACOPP, which was highly effective for me.

I'm not a doctor by any stretch of the imagination, I'm just hoping to offer any information I can based on my own experiences. I really recommend that you talk to your cancer treatment center about other doctors in the area who might be able to see you on short notice, just to help you determine your results. Be sure to bring a disc copy of your PET scan images, along with your report (if you're visiting a doctor at a different hospital. Doctors in the same center should be able to access PET scans on file.). If they are unable to set you up with another doctor to review your PET scan results and ease your mind, they may be able to schedule you some time to discuss the report with a pathologist, just so the terminology is more clear.

Hang in there. It's a long and arduous fight, but there are ups with the downs. I know we're all here for you both.

Stratafied,
I can't thank you enough for taking the time to explain and share your own situation.

There are 10 doctors in this hospital's Oncology office. We were seen by a Nurse Practioner before John's chemo last Friday...and didn't think to question her at the time.

I will be reading and re-reading your message many times...and may even print it out so I can absorb it all.

Thank you again for your advice... I WILL be following to the 'T' and will post again when there is a final answer.
~ Joyce

p.s. I hope YOU are doing well.
p.p.s. John has PFT tests twice a month and is severely affected by the Bleomycyn which is why the Doctor discontinued that as part of his treatment. He received ABVD for several sessions but now only gets AVD. (he also gets Neulasta... read your other post about it's possible side effect)

Joyce,

I'm so happy to be of any help - I certainly hope that I haven't mislead you with anything! Going through this process makes me wish I'd gone to medical school. Cancer seems to have a language all of its own.

I've taken to writing a set list of questions that I take with me every time I go see the doctor after PET scans. I tend to forget what I wanted to ask at home, when I'm in-the-moment discussing results with my doctor. It can really help to have some sort of reminder of general questions or thoughts, because in my experience, this whole process can overwhelm your mind. Even if my list doesn't apply to the particular PET scan, having it with me can remind me of other things I wanted to ask.

I hope you and your husband get some answers soon - the stress of waiting alone can make you feel worse than ever!I'll

(P.S.- I'm doing very well!)
(P.P.S - I am so sorry to hear how your husband's lungs are struggling. I remember my doctor refused to give me neulasta despite my tragically low white counts for the first two months of my treatment, for fear of damaging my lungs. He finally had to break down and give it to me. I hope someone works something out soon that doesn't have such horrible reaction potential with Bleomyacin!)

Stratafied,
Thanks for response. This message of mine is going to go on far too long. I just need to vent a bit, so bear with me.

John (my husband) has two cancers They are treating the Hodgkin's first and putting the Prostate cancer on hold with hormone therapy.

His white blood counts are and have been good all along.
Some up and down, but all above range (24.27 in Feb. 18.9 last test) Maybe the Neulasta should be discontinued.

I'm a certified list maker, and always have plenty of questions on paper when accompanying John to his appointments!

The difficulty right now is getting a face to face with the Doctor. A bit hard to explain, but the hospital Oncology department has 10 doctors (12 next month) and three offices in different towns. We chose to go locally. Our (one of ten) doc is at this facility only on Fridays.

This past Friday he was due to go on vacation so we were instructed to go to the hospital location where we were seen by a Nurse practioner (not sure why not one of the other Docs). John's Doctor DID call us at home the night before, which was most appreciated. The facts were shared with me by my husband after the fact... So I have no clear understanding of 'what's up'... just that everything 'looked good, except the lungs'.

When John got his booster shot yesterday we were told that his next Chemo (10th) would ALSO have to be scheduled at the distant Hospital location because our local would be closed all week due to construction (doubling in size)and his Doctor is not at the Hospital office on Fridays. (where is he going to be?)

So this means... a month without a personal explanation of the PET test!!!! I'm frazzled. Don't know if I should write to our Doctor, request an appointment with another (unknown) doc... or just wait it out.

In the mean time, I continue to search the 'wording' on my paper copy of PET without conclusive results but did find a technical report which I'll copy and paste below. The wording there for "complete" sounded promising... (just wishful thinking on my part)

If you've bothered to read this whole mess, you're a brave man. Thanks again. ~ Joyce

________________________
IMPRESSION:

[No hypermetabolic malignancy.* | Hypermetabolic malignancy in the | Complete
metabolic response to therapy. | Partial metabolic response to therapy. |
Progressive metabolic disease. | Stable metabolic disease. ]

{Primary Tumor Response WHO Category:
CR: Complete Response. No radiologically detectable residual tumor.
PR: Partial Response. At least 30% decrease in longest recordable dimension of
tumor.
PD: Progressive Disease. At least 20% increase in longest recordable dimension
of tumor.
NC: No Change.
}