Join Us

We are 216,745 members in 84 forums discussing 160,184 topics.

Help with Abbreviations

Topic: PET scan after IDC diagnosis?

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Nov 20, 2019 12:43PM

Pingmama wrote:

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

Log in to post a reply

Page 1 of 1 (24 results)

Posts 1 - 24 (24 total)

Log in to post a reply

Nov 20, 2019 01:30PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Nov 20, 2019 05:05PM godisone wrote:

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.

Log in to post a reply

Nov 20, 2019 06:21PM IAmACat wrote:

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

All my memories, relationships and experiences will be lost in time, like tears in rain. (Blade Runner 1982) Dx 3/2019, IDC, Left, 3cm, Stage IIIB, Grade 3, 15/16 nodes, ER+/PR+, HER2+ Surgery 4/17/2019 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 6/11/2019 Liquid tamoxifen (Soltamox), Zoladex (goserelin) Chemotherapy 6/12/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/12/2019 Herceptin (trastuzumab) Targeted Therapy 6/12/2019 Perjeta (pertuzumab) Radiation Therapy 11/12/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Nov 20, 2019 11:10PM Spookiesmom wrote:

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

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
Log in to post a reply

Nov 20, 2019 11:11PM Jons_girl wrote:

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.

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
Log in to post a reply

Nov 20, 2019 11:17PM lovepugs77 wrote:

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.

DX at age 39 Dx 2/17/2017, IDC, Left, 2cm, Stage IIIA, Grade 2, 4/24 nodes, ER+/PR+, HER2- Dx 2/17/2017, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- Surgery 3/28/2017 Lumpectomy: Left, Right; Lymph node removal: Sentinel Surgery 4/13/2017 Lymph node removal: Left Chemotherapy 5/18/2017 AC + T (Taxol) Radiation Therapy 9/27/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 11/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 20, 2019 11:25PM ElaineTherese wrote:

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.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
Log in to post a reply

Nov 21, 2019 01:14AM Beesie wrote:

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?



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Nov 21, 2019 03:20AM Pingmama wrote:

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.

Log in to post a reply

Nov 21, 2019 04:07AM muska wrote:

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.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
Log in to post a reply

Nov 21, 2019 07:39AM AliceBastable wrote:

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.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
Log in to post a reply

Nov 21, 2019 08:56AM Pingmama wrote:

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...


Log in to post a reply

Nov 21, 2019 10:43AM muska wrote:

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.


Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
Log in to post a reply

Nov 21, 2019 01:25PM Pingmama wrote:

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

Log in to post a reply

Nov 21, 2019 01:56PM notdefined wrote:

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.

Log in to post a reply

Nov 22, 2019 02:16PM - edited Nov 22, 2019 02:23PM by 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

Dx 10/25/2018, DCIS/IDC/IDC: Cribriform, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (IHC) Surgery 11/4/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/3/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Nov 22, 2019 03:29PM Pingmama wrote:

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

Log in to post a reply

Nov 22, 2019 10:47PM mnsotamom74 wrote:

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.

Dx 10/25/2018, DCIS/IDC/IDC: Cribriform, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (IHC) Surgery 11/4/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/3/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Nov 23, 2019 11:45AM WC3 wrote:

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.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jan 8, 2020 01:40AM Ahooo7 wrote:

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.

Log in to post a reply

Jan 8, 2020 04:16AM Moderators wrote:

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

To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

Jan 8, 2020 04:56AM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Jan 9, 2020 06:18AM Ladyofthelake wrote:

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.

ADH found on left side after prophylactic mastectomy Dx 10/15/2018, IDC, Right, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 1/22/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/7/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jan 9, 2020 07:29AM Nancy2581 wrote:

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

2.8 cm tumor with LVI Dx 6/11/2014, IDC, Right, 2cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/24/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/22/2014 AC + T (Taxol) Hormonal Therapy 1/28/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/29/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/17/2017 Femara (letrozole)

Page 1 of 1 (24 results)