Pet Scanxiety!

swimangel72 · 08-05-2010, 07:48 PM

Last Friday I underwent my very first Pet Scan - my onc asked me to undergo it because I was complaining about pain in my left chest area near to my old port scar. Also he agreed to give me a vacation from Arimidex as long as I agreed to the Pet Scan. I got a call from his nurse today asking me to come in to talk with the Onc - my appointment is for next Tuesday. This sent up a huge Red Flag in my mind - so I emailed him and asked him did I have anything to worry about..........great guy that he is, he immediately emailed me back saying,
No major problem. Minor uptake in the Left Chest at the hilum of the Lung – probably vascular and normal, but the radiologist is recommending follow up, and I just want to review it with you before deciding how to monitor it.

So now of course I'm worried - especially since I am experiencing this weird pain (mild but consistent) - it's been bothering me for about 2 months - I can't get a handle on when it gets worse - or when it gets better. I have no breathing problems - and since stopping Arimidex, my energy level is getting much better.

My question is - am I needlessly worrying? What kind of "normal vascular" issues could cause an uptake at the hilum of the lung? And could it cause me pain in my chest? Also what kind of follow-up would my onc recommend?

Thanks my friends for any answers you can offer!

Jackie07 · 08-05-2010, 08:43 PM

Kathy,

There's no way for anyone to know what exactly it is at this point. That's why they want to follow up and monitor it.

I can only share with you my scare of hepatic hemangioma. It's like a 'birth mark' type of thing 'growing' in the liver. When we first saw it on CAT, nobody could be sure exactly what it was. Then they ordered an ultrasound and confirmed it was harmless. (The enhancement showed on one scan but not the other - a characteristic of hemangioma.)

That was a very scarry experience - I was so sure about having liver mets at the time because of the discomfort, etc. But it turned out to be harmless.

ElaineM · 08-05-2010, 09:11 PM

I am glad your oncologist is so thorough. It is better to have one like that rather than a one who isn't that way. It is better to take care of potential problems sooner rather than later no matter what those problems may be.
I am keeping my fingers crossed for you.

tricia keegan · 08-06-2010, 02:41 PM

Kathy, I dont know what this could be if anything, I had my first pet last Sept for suspected bone mets which was clear. However, because the bone scan showed a "spot" and the mri was inconclusive, my onc had me wait two months for another mri as it was too small to biopsy.
Try not to panic as it may nothing, easier said than done I know!!!

Joan M · 08-06-2010, 05:02 PM

Kathy,

What is the SUV, or uptake value for the spot the doctor referred to? Or what is the SUV of the "minor uptake"? While values of 3.0 and above may be suspicious for cancer, they're not always cancer. For example, early last year the hot spot that kept lighting up in my lung (SUV 6.0) ended up being a fungal infection.

I'm praying that there's nothing to worry about.

Joan

BonnieR · 08-06-2010, 08:48 PM

I recently posted my sad tale of something lighting up in my lungs which set off a big cancer scare resulting in unnecessary lung surgery. I dont mean to scare you but rather to reassure you that even when things seem dark they can turn out to be nothing at all. In my case, it was an old pneumonia apparently and should have been treated conservativly with antibiotics to see if it went away. So don't jump to conclusions and try not to let the doctors do it either. Sounds as though your doc is going to keep an eye on things. Keep the faith. Just cause we have had cancer doesnt mean that we cant get other ailments.

swimangel72 · 08-08-2010, 06:10 PM

Thank you all so much for your excellent advice! I feel much less anxious - we had a very busy weekend (wedding on Friday night and today the beach) so that kept my mind off the scan results. Thanks Joan for the info on the SUV numbers - I don't know much about Pet Scans so I appreciate your help. I'll be sure to report back on Tuesday what my onc says..........bless you all!

swimangel72 · 08-11-2010, 07:39 PM

I saw my onc today - he gave me the Pet scan report which states "There is mild increased uptake in the left hilar region (SUV max-2.7; reference right hilar SUV max-1.7) Normal varian physiologic activity is favored, however, given the clinical history of breast cancer, consider further evaluation with contrast-enhanced CT of the chest. No abnormal uptake is seen within the lung parenchyma. There is a probable 3 mm nodule in the left upper lobe anteriorly, too small for PET detection."

My onc doesn't want to expose me to any more radiation right now. I asked him if the pain in my chest over my port scar would correlate with the hilar region of the lung but he didn't know - especially since I have no difficulty breathing. So he wants me to see a pulmonologist (appointment made for August 24th).......and he ordered another CA 27.29 since the last one showed a tiny bit of increase in numbers. But he reassured me that he was very happy with the PET scan report - nothing lit up in the bones or nodes or neck area at all and he feels confident that this mild uptake will just be vascular in nature (even though I read online that "Typically, the SUV value of metastatic lesion is above 2.5." ) I also read that there are many reasons other than cancer for uptake in a Pet scan in the lungs - and that gives me confidence, so I'm not going to worry any more. We leave for a week's vacation this Saturday and I'm really looking forward to it so that'll be a wonderful distraction!

Adriana Mangus · 08-11-2010, 11:52 PM

Can you have a biopsy done?

In May a had a pet scan, the uptake --can't remember the name something like UV? but it measures a tumor-- it was not 100% readable, now the latest Pet scan shows that I have mets to 4th rib. It took awhile to show up on the Pet scan, but I do remember having some discomfort before hand.

The sooner the better, there are a lot of treatments available if indeed the ca is found in the lung.

Take care,

Adriana

swimangel72 · 08-12-2010, 01:19 PM

Hi Adriana - thanks for writing. I'm so sorry you ended up with mets........I truly wouldn't be worrying at all about myself even after the Pet scan except for the weird pain in my chest that comes and goes. I had to remind my onc about this pain (he was acting like the uptake was no big deal) - and only then did he suggest I see the pulmonologist. If the pulmonologist shows any concern, they'll probably order the cat scan with contrast before doing anything invasive, which is fine with me (I'm terrified of needing a lung biopsy!) So I'm thinking positive thoughts - and sending some your way too - thanks again for sharing your advice.

BonnieR · 08-12-2010, 01:35 PM

Kathy, it is good your doc is taking a conservative approach. Although I may be biased since everybody jumped the gun with me and I had the unnecessary lung surgery. In retrospect, it would have been wiser to keep a close eye on things via a pulmonologist. Regarding the biopsy, mine had to be done surgically due to the location. But often they are a needle proceedure, if that is any comfort to you. Probably not!!

Hey, enjoy your holiday. And keep the faith.

swimangel72 · 08-12-2010, 07:36 PM

Thanks so much for your encouragement Bonnie!