Should I get a Pet Scan even though negative lymph node?

LisbethS

I had a Uni-MX July 13 for a 1.8 cm grade 3 IDC Stage I. Clear lymph node. Clear margins. Oncotype DX test is high at 40 so I'm starting chemo next week. I also found out I am BRCA2 positive.

Both my breast surgeon and MO said I didn't need a PET Scan and insurance wouldn't cover it anyway since I had a negative lymph node. I changed MOs (for a different reason), and my new MO asked if anyone had ordered a PET Scan and I said they told me insurance wouldn't cover it and she said "Well did they even try?". So I was happy that she cared enough to try and get a PET Scan approved for me.

But then I researched it and found out how much radiation exposure a PET Scan has and they often have to do CT Scans to follow up on every false spot/anomaly=more radiation. If it had spread to my lymph nodes then absolutely I would say the radiation would be worth it to see if/where it metastasized to. But with my lack of lymph node involvement, I'm just not sure I should get it done.

The MO's office called today and they got it covered and wanted to schedule my PET Scan at their facility. Then I remembered that I had to sign something at the MO office stating that I am aware that my MO's office owns their own PET Scanner therefore has a financial gain... Hmmm, all my doctor's said no to a PET Scan except the one that owns a PET Scanner. And when I mentioned to the lady scheduling it that my insurance only covers certain Imaging places and may not cover their PET Scan, she was adamant that I get it done there

Now I don't know what to do. I suppose a second opinion but I start chemo next week and liked this MO and she's my second MO and I don't want to delay chemo since my oncotype DX is so high. I read an article on Consumer Reports about radiation exposure and how they are re-thinking the life time exposure and doctor's ordering too many tests and the increase risk of cancer. One thing they said was if the doctor owns the PET Scanner or CT Scanner, then get a second opinion. I suppose I kind of did get a second opinion because my first MO and breast surgeon said no.

Ugh, did anyone get a PET Scan with clear lymph nodes and clear margins? I feel like a fool because I was excited when the MO told me she wanted a PET Scan, now I feel weird calling and asking why do I need a PET Scan. I think she might have alluded to my high oncotype dx score or maybe she said because I'm BRCA2 positive, I can't remember.

Why are my posts always so long? I try to shorten them and they just get longer.

Thanks to anyone who read this far.

ElaineTherese

Hi!

Yes, you will be exposed to some radiation if you get a PET scan. But, is it enough to be worried about? As someone who has gotten three PET scans in the last two years, I would say, no. But, that doesn't meant that you should get a PET scan or that you need one.

You are right to be concerned about whether or not your oncologist is just looking to earn some more money. That, too, would make me suspicious. However, there might be some good reasons to get a PET scan.

Just because you are node negative doesn't mean that your cancer might not have migrated elsewhere. The chances of migration are smaller because you are node negative, but there is always that slight chance. Your Oncotype was high, and you are BRCA2 positive, so your oncologist could argue that your cancer was aggressive and might have spread. At the very least, a PET scan now could serve as a baseline scan that future scans could be compared to.

I got a PET scan because I was Stage IIIA with a large tumor (5 cm.+), Grade 3, and had one compromised node. The PET showed no mets. It was also used to see how well neoadjuvant chemo worked -- my second PET scan showed that chemo had wiped out all of the active cancer in my breast and in my node.

Since you're getting chemo post-surgery, your PET scan can't be used to determine the efficacy of chemo. At best, it can 1) check for mets, and 2) establish a baseline. If the risks of radiation outweigh these benefits of the PET scan for you, I would say "No" to the PET scan.

Good luck!

dtad

Ditto!

KateB79

Hi LisbethS,

I was in a similar boat, but with HER2+ pathology (and a couple of other differences--I had multifocal disease, close DCIS margins, etc.). No PET here; my MO, RO, surgeon, and PCP all agree, both initially and after taking my case to tumor board, that additional scans aren't necessary. That was a hard pill for me to swallow at first, especially because I know other stage II women who had less aggressive BC who received scans, but I'm starting to see the wisdom in my MO's words: "don't worry unless you have a reason to worry. We all have aches and pains. If something lasts a month, we do a scan."

In essence--and my other three docs agree--we behave as if I'm NED unless I have symptoms that suggest I'm not NED. We do blood work quarterly (the CMP, in particular, can sometimes indicate further testing), and I get a clinical exam from at least one doctor every two months. But their assumption is that the surgery got it all, because the nodes were negative; chemo and radiation was just insurance. As is, I suppose, the combination of Zoladex and tamoxifen that I'm doing indefinitely.

All of that said, I second what ElaineTherese says above, especially because it's theoretically possible, if relatively uncommon, for BC to metastasize with negative nodes and no LVI: if you want a scan, just to establish a baseline or rule out mets with 100% certainty, you should have the scan. If peace of mind is worth the radiation and week of possible scanxiety, your MO can petition your insurance company on your behalf. I decided, ultimately, not to fight for a post-treatment PET, largely because I already had chest-wall rads, but also because, at the end of the day and purely subjectively, I'd rather forego more radiation and bask in being NED for as long as I'm NED (which I hope is forever). Having a scan doesn't change the present moment for me; it would give me more certainty about the future, but the future is always uncertain, regardless of what a scan says and even beyond cancer.

Forgive my existentialist leanings and possible rambling. I hope that helps! Good luck.

muska

No scan PET including is 100% accurate. I don't think they normally order PET unless there is a suspicion of distant mets. I am stage 3 and was never sent for a PET and it never crossed my mind to request one - be it before or after treatment. Of course it's a matter of personal choice but you should be prepared that it might show something - not necessarily breast cancer related - that will lead to more tests and more anxiety. Maybe you can call the ordering MO and ask why she ordered the test (I wonder how that was explained to the insurance)? Was there anything in the labs/tumor markers? Anything suspicious in other reports?