PET scan after IDC diagnosis?

Pingmama

Hello,

I am hoping there are others out there with a similar situation. My mom was just diagnosed with IDC, grade 2 (score 6) based on the biopsy on a 1.7 cm tumor. It wasn’t visible on mammogram due to dense breast tissue.

Is it common practice to have a PET scan after breast cancer diagnosis? She also had a stage 1 lung tumor removed 6 months ago (no chemo or radiation).

Basically she has one doctor recommending a PET scan and one doctor who says she doesn’t need it. Are there others out there who have had a PET scan done?

thanks for listening

MinusTwo

I had three tests before surgery: CT with & w/o contrast; MRI with & w/o contract; and a PET/CT to make sure there weren't some rogue cells running around.

godisone

Hey dear, you just mentioned about the invisibility of the tumor in the mammograph. So, i guess the doctor suggested PET scan because he wishes to have a clear picture before starting with the treatment plan. The scan is non invasive and does not pain,I find no harm in undergoing the scan for better understanding of the tumor mass.

IAmACat

Yes, I had a PET/CT done before I started chemo. Another doctor wanted a bone scan and CT.

Spookiesmom

Yes I did, and a MUGA, MRI, and a whole bunch more. Felt like pitching a tent on hospital campus was there so much.

Jons_girl

Hi pingmama:

My tumor was missed on a mammo too because of extremely dense breast tissue. I had a ultrasound that caught the tumor. I’ve had no other scans other than ultrasound (every 6 mo)since my surgery due to mychoice so far. But plan to add maybe MRI as a breast surgeon who’s following me now would like me to have another type of diagnostic since not all diagnostic scans catch all cancer potentially. She wants to cover all bases. A PET scan hasn’t been talked about but I haven’t had other tumors in other areas. That’s probably why that dr wants to have her have a pet scan Im guessing.

lovepugs77

I had a PET scan before chemo and after surgery. My doctor ordered it because of my positive lymph nodes. He would not have ordered it had I been node negative.

ElaineTherese

I had an MRI and a PET scan after diagnosis because 1) my lump was big; and 2) one lymph node looked suspicious. I would much rather get a PET scan than an MRI because it is a far more peaceful and less claustrophobic experience. If your Mom's insurance approves a PET scan, she should think about it. But, be warned -- PET scans can produce false positives that can be worrying. I had "something" light up on my left hip on three PET scans; my oncologist would have biopsied it but it couldn't be found during an MRI.

Beesie

Pingmama, at this point, based on imaging, your mother has a Stage I sized tumor. That doesn't mean that she will end up being Stage I once the surgery and all other testing is done, but that's the clinical diagnosis.

I notice that most of the people who've responded who've had PET scans are Stage III. The NCCN Treatment Guidelines (the gold standard of treatment guidelines, used by most doctors/facilities in the U.S.) indicate that PET scans are not indicated for operable early stage disease but may be useful for more advanced diagnoses where there may be questions about nodal and metastatic involvement. What this means that is most Stage I patients do not get PET scans whereas most Stage III patients do.

This might warrant a question to the doctor recommending the PET scan as to why he is suggesting your mother have one. Is he concerned that there is more going on, or is he just overly cautious with all patients?

Pingmama

thank you so much for all of your replies! I guess my concern is because she has had nowtwo primary cancers that there’s another hidden cancer somewhere.

muska

I was clinical stage I before surgery and did not get PET, but I had CT scan and MRI. After surgery, I was re-categorized as stage III and didn't get PET scan either.

Pingmama, I think your mom's case is a bit different because it's a second cancer within a short period of time, so I would leave up to the docs to make the case for PET, especially for the insurance - that is if you want it.

Do you know what scans/labs were done for the lung tumor? I am not familiar with lung cancer protocols, aren't they doing CTs and more before surgery?

Best of luck to you and your Mom.

AliceBastable

I was coming here to say what Beesie said (but she has much more information about it). I'm another multi-cancer crap magnet, and I had a PET scan earlier this year. It was ordered by my urologist, who did my nephrectomy last year, but coordinated through the oncologist. I think people who've had multiple cancers get more thorough testing and are watched more closely. Some do the extra tests before surgery and some do it after.

Think Whack-a-Mole.

Pingmama

thanks @alicebastable I’m hoping she will do the PET scan after surgery/treatment etc...

@muska - I’m not sure but I think she had a CT scan before the lung surgery? Insurance isn’t an issue since she’s in Taiwan and they have some form of universal health care there.. but she doesn’t want the PET scan she said , maybe after the breast surgery?

If it were me I would want the PET scan right away as to know if there’s anything else suspicious...

muska

If she doesn't want it and the docs are not insisting I would not push her to get one. Keep in mind that no scan is perfect, false positives are possible and would just add to anxiety.

Pingmama

thank you @muska, that’s a great point. We definitely don’t need any more anxiety around here. Thanks again

notdefined

I was stage II. My sister is an ultrasound tech, and she told me to ask for a PET. The surgeon said it wasn't needed, and he was also concerned about false positives. I did it anyway. I also had an MRI on both breasts. I was glad I did it, but I realize the limitations of the test.

mnsotamom74

I had a pet scan after the biopsy that confirmed breast cancer. I had another pet scan after my final chemo. My oncologist does pet scans 2 times a year for the first two years and then once a year until year 5.

Every oncologist is different.

I was stage 2 with no lymph node involvement. My oncologist is super cautious no matter what stage and orders pet scan across the board, my insurance covers it but if it didn’t I wouldn’t have it done. My oncologist is good about compromise.

My mom was stage 3 with lymph node involvement and in 9 years has only had 1 pet scan. Different oncologist. They’re all so different. There isn’t a one size fits all and your mom should definitely go with what feels right for her

Pingmama

thanks @mnsotamom74

yes I guess that is also the scary part! Each has their own method and treatment plan... now her surgery is getting delayed because they want The results of her ER/PR/HER2 first. Is this typical here also

mnsotamom74

Pingmama, for me they knew that status from the biopsy results. So when I saw my oncologist for the first time he knew I had ER+ PR+ breast cancer.

WC3

At my treatment center, typically PET scans are only done if the cancer is suspected to have spread to the lymph nodes or elsewhere.

I'm guessing the one who says it's not necessary is basing that on lack of evidence of lymph node involvement and the one who thinks it should be done is probably thinking something along the lines of "She's had cancer twice. Is there more?"

PET scans, particularly PET/CTs have non-negligible amounts of radiation, which is why they are not routine for cancer that is thought to be localized.

Ahooo7

I’m recently diagnosed not in breast but in lymph node. It has breast cancer markers and I’ll be having the lymph node with the tumor and surrounding lymph nodes removed soon. Anyway I had the breast mri 4 days ago. Horrible experience. I’m bruised and have pain in my rib area. I had pain upon the start of the mri and had to stop before it started. The tech repositioned me but it was still painful. I asked if this had ever happened before and she said no, never. Has anyone else had this experience with the mri? I’m using heat and ibuprofen which makes it bearable until the ibuprofen wears off.

Moderators

Dear Ahooo7,

Welcome to the community. We are sorry for your diagnosis and experience with MRI. If you do not receive timely responses here you may want to check out the topic on MRI. It is in the Not Diagnosed but Worried forum but may be of help to you in your current situation.

The Mods

MinusTwo

I always have pain with a breast MRI. The positioning just hits my body wrong - sternum & ribs. I've also discovered that I can't stay still enough for good images - wiggling because of the painful spots I imagine. Anyway, if I take one .25 Xanax 30 minutes before the test, I can get through it.

Ladyofthelake

I'm surprised the tech would say that to you Ahooo7. My MRI was absolutely painful on the ribs and sternum and I felt bruised for several days. The edge of the table is going to put excessive pressure on those areas, regardless of the padding they put there. It's one of the most uncomfortable tests out there and any tech worth their salt would know that.

Nancy2581

I had a PET/CT scan after I found out I had one lymph node positive for cancer. That one little node bought my ticket to the PET/CT scan and chemo. Though I was terrified of finding out what that PET/CT scan might find it turned out to be fine. My family practice doctor said he wished all of his patients had a PET/CT scan like mine. Made me feel better after being diagnosed with breast cancer.

Nancy