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ct , pet scans, ct/pet scans: what are people's experience of these re: enlarged nodes?

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

sisters,

there was an earlier thread on this subject that was deleted. am wondering if some of those who had posted on this subject before, wouldn't mind doing so again? e.g., some had pet scans, some had ct scans, some had ct/pet scans--many with differing results/outcomes, false positives, etc.

thanx,
maggie

GracieGold's picture
GracieGold
Posts: 23
Joined: Jun 2010

I have been having PET/CT scans either once or twice a year for my NH Lymphoma (currently in remission). That is how my USPC was caught fairly early (stage 1A). My insurance company does pay for it. I do worry about the radiation. I asked my lymphoma doc if I could have the PET only for much less radiation and he said that I could--but if the test showed something questionable, I would have to have the CT to pinpoint it. That seems reasonable to me. Has anyone else done this or had this discussion with their oncologist?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Originally my oncologist said he didn't trust PET scans as much as CT scans, because when tumors are smaller than 1 cm (= 10 mm) the false-positive rate on a PET scan for tiny tumors can be as high as 45%. And so I just got CT-scans, as long as they were NED. But as soon as I had a CT-scan showing a couple enlarged lymoh nodes, coupled with a spike in my CA125, he ordered a PET scan. And I have been getting CT/PET scans ever since.

If the CT scan shows something larger than 10 mm (= 1 cm), PET scans are statistically accurate at diagnosing malignancy something like 97% of the time. So if you have something measurable on a CT scan larger than 10mm, a PET scan is a very accurate diagnostic tool. & my oncologist said that if you get a CLEAR PET scan, where nothing lights up, BELIEVE in it, as False NEGATIVES almost NEVER happen.

For UPSC, CT/PET scans should be covered by most insurances, if your oncologist makes the argument that this is similar to ovarian cancer. The CT-scan part shows the SIZE of the tumor and any change in size from the prior scan; the PET-scan part shows the metabolic activity and if a tumor larger than 1 cm lights up with an SUV of 3.5 or greater, there is a very good chance (97%) that this is a malignancy. Still, if you can, you want a needle biopsy to confirm the malignancy before you start taking chemo again for the results of the CT/PET, if it is safely do-able.

Was that what you were looking for?

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i did know quite a lot about the differences between ct and pet scan, but was very glad to learn your specific experience, linda. and, i was glad to know that there may be false positives, but not so many false negatives. because my enlarged para-arortic node is 1.4 cm, doctors are recommending a pet scan. they've been refused twice by my insurance, blue shield. my medical oncologist will do a physician-to physcian phone call, and seems fairly otomistic that blue schield will eventally approve the ct/pet. we'll see... will also depend on the numbers of my ca 125 in later november, i imagine. i am, i have to say, as i've said before, leery about doing a needle biopsy, and neither of my doctors has ever recommended one. mosly, i have reservations about disturbing it if is is malignant, because it will no doubt have a few malignant cells attached to it as it makes its way out. soo, guess i'll cross that bridge when i come to it. (the most knowledgable person at my chemo hospital is the charge nurse, and she, fortuitiously, took a look at my ct scan and said she doubted my node was malignant because it didn't have anything suspicious around it, no debris, or whatever, so she thought it was adhesions/scar tissue: "from her lips to god's ear."

the thread i'd been following also had a number of other posts by women recounting their experiences; some women's nodes dissolved on their own, others were false positive, others had decreased in size, without any intervening treatment--just time between one type of scan and another. so, i was hoping some of these other women might post again. the thread was only up a couplie of days before it was deleted presumabley because of a scammer.

hugs, maggie

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi Maggie,
I had lymph nodes enlarged per a CT and then light up on PET scan but two later resolved - without intervention. In rechecking my report, the SUV was only 1.3, 1.5, 1.9 on the three nodes: 2 in lower pelvic area, one para-aortic - 1.7cm x 1.1 cm). I noted this time that radiologist's interp was: suggests malignancy based on my history and location but rec was: follow and repeat study in 3 months.

Instead, my gyn-onc jumped on to port insertion and prep to start chemo asap! Freaked me out and made me think it time for last rites, lol. This was Jan/Feb, 2009. However he left the clinic and I chose to stay and change docs rather than follow him (for ins. coverage reasons). Recheck of ca125 for new doc revealed back in normal range (no treatment) and new CT scan in Jun 09 showed lymph nodes shrinking or not visible. However by Sept 09 PET/CT the para-aorta node had enlarged (2.3 cm)and new SUV was 9.5 (up from 1.5), plus another nearby with SUV of 12.1(2.6 cm), biopsy showed malignant cells that matched original cancer slides.

I didn't have another PET until a few weeks ago - no increased uptake in any of the nodes, recent CT scan had showed both para-aortic nodes only 0.8 cm. I had 2 rounds of Doxil in early 2010, and 4 rounds of Gemzar in spring/summer. So resolution this time followed treatment.

I do think earlier enlarged groin area nodes may have been due to a bladder infection a few weeks prior. This could also have been cause for spike in ca125. Now had I had treatment maybe it would have zapped cells that showed up in para-aortic nodes, but I'll never know. I'm just enjoying current clean CT/PET results for now :-)

Hope this helps! -- Annie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

it was very helpful. so glad that doxil and gemzar were so successful. interesting how your nodes resolved by themselves, then enlarged again. anyone ever explain how that could have happened? you said 2 rounds of doxil, how many actual infusions was that? and 4 of gemzar. were there actually 2 and 4 infusions only? did you have many side effects from either?

i don't think it makes much sense to second guess ourselves; we always make the best decisions that we can when we are faced with something requiring us to make choices when we don't really have all the information, doctors don't either. so, glad you're enjoying your current clear ct/pet results--may these results last for many, many years.

sisterhood,
maggie

kathybd
Posts: 126
Joined: Jul 2009

is what I have. The last 2 CT's showed no change, but one has decreased 1/2 mm and they say they aren't indicative of recurrence at this size. My paps and CA-125 have been 2-8; last one being 7. Keeping hopes and positive thoughts as much as I can.
My husband isn't doing well. Colon cancer spreading further after the chemo break; but may start a new study not FDA approved and is Phase 1. Is going to check it out as it's a pill vs infusion. Rough 2 nad 1/2 years at our household, but we just keep putting one foot in front of the other!

Hugs to you and hoping for the best. Prayers are a given!
Kathy

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Oh, Kathy....I am so sorry to hear about your husband's colon cancer advancing! That is just such a lot of stress for both of you! Do you have family who can help? I hope he can do the study, if that is what he wants to do.

Sending very positive energy and HUGE hugs to both of you!!

Karen

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thanx for your response. i'm so sorry to hear about your husband, hopefully he'll get into the new study if he decides to do that, and it will work wonders. it sure has been a difficult 21/2 years in your house; you both seem like you must be real troopers, and you do what you have to do, but oh so hard.

i am glad to hear that things are steady with you. may i ask the sizes of your modes now that they, thankfully, are not indicative or recurrence? your ca 125 is also just about a low as can be. mine is still within "normal" at 20, i plan to have a new one in late november. it will be 6 months, so kinda nervous about that.

it would be great to get together with all of us who live in the bay area, you in san jose, me in berkeley, and whoever else turns out to live in the neighborhood......;let's see who else shows up.

i have this fantasy of taking a road trip with my partner and visiting all our virtual friends across the country; i could take off the time since i'm self-employed, but it would be a lot harder for my partner, thus it's still a fantasy......but.....

in the meantime, take good care kathy, and i'm so hoping for the best for your husband.

hugs and sisterhood,
maggie

kathybd
Posts: 126
Joined: Jul 2009

Thank you for your care and concern, and kind words. My lymph nodes were "small"..don't know if they were measured. They only mentioned the largest one was 6.5mm, down a half mm from 3 mos ago. They have me doing my CA-125 every 3 months as well as my paps. All gets very expensive; even after meeting the deductible!

It would be fun to get together and compare notes and a glass of wine.

Hugs back!!
Kathy

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