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Topic: Will they do a pet scan

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Aug 19, 2019 09:28AM

Missmom79 wrote:

i had a core needle biopsy done on August 13 and on the 15th results came in as high grade solid dcis with central necrosis. They took 10 samples! Anyways I know you can have IDC and DCIS together. So that is why I’m asking is will I need a pet scan because DCSI is not invasive but IDC is.

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 19, 2019 10:34AM Ingerp wrote:

I've never had a PET scan, and others know better than I but I believe it's more for when mets are suspected.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Aug 19, 2019 11:23AM mustlovepoodles wrote:

I doubt you will need a PET scan for DCIS. PET scans are used when they suspect metastasis to other areas. DCIS is contained. It does not metastasize. If they find IDC after the lumpectomy, they *may* do a PET scan, if there is reason to question it, due to size, lymph node involvement, etc.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Aug 19, 2019 11:57AM - edited Aug 19, 2019 11:58AM by Missmom79

well it's odd because my biopsy came back DCIS and the reason that prompted me to get a diagnostic mammo was because of redness and enlarged hair follicles. Al ost like orange peel skin. Unless in some kind of weird thing that can happen with DCIS involving the skin. Trying to google it but can’t find anything

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 19, 2019 07:46PM Spoonie77 wrote:

I was dxd with IDC first and then they found additional DCIS during my lumpectomy, so yes you can have both.

I have asked for a PET scan numerous times from my two different MOs because of all of my chronic conditions and immune issues, my radiation caused lymphedema, and recently had a thyroid nodule discovered plus had an allergic reaction to Zoladex....and no PETscan still.

I would like one for peace of mind but in my experience and from reading others here on the board, getting a PET scan is unlikely in most cases.

"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Aug 19, 2019 08:30PM Beesie wrote:

PET scan for DCIS? Almost certainly not.



PET scan for invasive cancer? In most cases, only if symptoms warrant it.



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 19, 2019 08:35PM Missmom79 wrote:

i didn’t think so either but with everything going on with my path report and my mammo and ultrasound i don’t know what the heck to think.

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 19, 2019 08:43PM Beesie wrote:

Once you get an accurate diagnosis, you should get the appropriate testing for that diagnosis. You won't get scans appropriate for IBC if your diagnosis is DCIS or early stage IDC. So you need to focus on getting clarity about yourdiagnosis and whether there remains any concern about the possibility of IBC.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 19, 2019 08:53PM Missmom79 wrote:

thank you for talking with me. 🙏😊

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 20, 2019 07:25AM ksusan wrote:

My next step was contralateral MRI. After that found IDC, I had a PET/CT.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 20, 2019 10:40PM WC3 wrote:

PET scans are usually only done if they suspect lymph node involvement or distant metastasis.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Aug 21, 2019 09:30AM - edited Aug 21, 2019 09:32AM by Missmom79

well I am upset. I hate not knowing what's going on. As with anyone I'm sure. I have to see a surgeon tomorrow at 1:30. I looked him up and all it says is general surgery. It does say he does lumpectomy and core biopsy but I already had a core biopsy the next day after my abnormal mammogram. Which came back DCIS. Radiologist should have done punch biopsy. So I am wondering if I'm just going to him to get a punch biopsy? I just feel they need to hurry up and start treatment as they are prolonging things. Had mammo on the 12th, abnormal, core biopsy came back as a high grade DCIS with an Er- and PR- on the 15th and apparently the Her or whatever ir called has to be sent to another lab to Determine that? So I am really hoping I am not triple negative. But anyways I am upset that the radiologist could have done the punch biopsy instead of sending me to a surgeon and it is just wasting precious time. I just don't know what to think.

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 21, 2019 09:51AM Beesie wrote:

The only person who can answer your questions is the Radiologist. She wrote the imaging report indicating a concern about IBC but then she scheduled you for the stereotactic biopsy rather than a punch biopsy. Now you have a finding of DCIS and not IBC. She owes you an explanation and an indication if she remains concerned about IBC.


If you don’t contact her, you won’t get the answer. No one here can explain the inconsistency. The surgeon can provide his input but can’t read her mind

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 21, 2019 10:12AM Missmom79 wrote:

i tried calling her yesterday. The nurse said she doesn’t take calls as they are so busy with so many patients. I doubt the nurse would know anything. As LoriCA stated in another thread that maybe legal and insurance issues and that she wasn’t approved to be able to do lunch biopsies but how it that so I’d she did a core biopsie? And now I am being sent to a surgeon tomorrow.

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 21, 2019 10:46AM LoriCA wrote:

Someone else must have said that, it wasn't me. I too don't understand why they would send you for a core biopsy if they suspected IBC. IBC progresses very rapidly and if they suspected it, a punch biopsy should've immediately been ordered so treatment could start as quickly as possible. I saw that your mammogram did look like DCIS, and your biopsy confirmed it. But as I said earlier, DCIS and IBC are at complete opposite ends of the breast cancer spectrum (and start in two different locations), so if multiple medical staff believe you have IBC, they should also do a punch biopsy to see if there are cancer cells in your skin/dermal lymphatics.

If the surgeon is concerned about IBC, they will make sure a punch biopsy is done before scheduling any surgery because no surgeon wants to cut into skin that may be infiltrated with cancer cells.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Aug 21, 2019 10:56AM Missmom79 wrote:

yes it’s been a month now. I want treatment now

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 21, 2019 11:39AM Beesie wrote:

Well, on the positive side, since it's been a month and your breast redness has not progressed, it makes it less likely that the cause is IBC. It's still quite possible that you will end up with a final diagnosis that is Stage 0 DCIS, which is not an urgent diagnosis. Let's hope that's the case.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 21, 2019 01:20PM - edited Aug 21, 2019 01:22PM by Missmom79

yes for sure beesie. I just got back from my primary dr. She wanted to look at my breast again. She said it looks less pink To her. She was looking at notes from the radiologist and my primary says that the reason fov the surgeon is so hell prob take a chunk of skin of the area of concern to rule it out. Maybe she didn't want to do that because with IBC Cáncer can soresd more so. It. Still can be IBC even though she said it looks less pink and if it is IBC then we'll get it taken care of. I also asked her if it's true that most IBC is stage 3 or 4 or even 5 upon prognosis and she said that's not fully true but although she is only a primary dr. She did strongly recommend i do not google.

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 21, 2019 01:47PM Beesie wrote:

Good that you saw your doctor. And good that she thinks your breast is less pink. That's another positive sign that this is not IBC.

What your doctor is saying is what Lori said, which is that the surgeon will do a punch biopsy if he has any concern about IBC. So if he doesn't do the punch biopsy tomorrow, and doesn't schedule you for one, it means he does not see the pinkness as possibly being IBC. Tomorrow is your opportunity to get clarity (other than about what the Radiologist might have been thinking!) so make sure you don't leave without all the answers you need. Is your mother (or anyone else) going with you to the appointment? Two sets of ears can be helpful.

I don't know much (anything, really) about IBC but I believe that it is always at least Stage IIIB. As an FYI, there is no Stage V.

Good luck tomorrow. Let us know how it goes. Very much hoping for Stage 0 DCIS and nothing more!

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 21, 2019 02:11PM Missmom79 wrote:

My mom is going with me and my primary dr is making them do an mri. And thank you I hope so too.

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Aug 21, 2019 02:41PM LoriCA wrote:

Beesie is correct, Inflammatory Breast Cancer is always at least Stage IIIB since it involves the skin (and oftentimes the chest wall), with or without axillary node involvement. If it has spread to the lymph nodes near the collarbone or in the chest, and/or ten or more axillary lymph nodes are involved, it is Stage IIIC. If it has spread outside the breast and surrounding lymph nodes to distant organs or bones, it is Stage IV.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Aug 21, 2019 04:53PM - edited Aug 21, 2019 05:03PM by Missmom79

ya i figured that our. But I'm hoping it's a good sign that upon ultrasound she said my axillary nodes looked pretty normal and they do not hurt. I came here knowing in my bones I’d be back after my mammo and ultrasound. Oh and my primary also put me in a appt with oncology already just in case she said. She has said that she has seen a case of IBC and I was surprised. I don’t think it’s rare as they say and she’s pretty young dr too. But of course the woman she seen her whole breast was asymmetrical and red, hot and swollen ext. my grandmother had it. My grandmother had fell one day at work and she fell on her breast and it’s got worse so she assumed it from her falling. By the time she got to the dr (a few months later) they found out she had IBC and she had her chemo and lost her breast but ultimately died of a heart attack during physical therapy. And my mom told me it spread to her bones. But my mom said she was getting up everyday and still doing her makeup ext with her scarf on her head cuz she had no hair. She was in her 50’s

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3

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