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Topic: Is it or isn't it?!

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Jun 20, 2016 10:30AM

NancyHB wrote:

I'm confused, tired and a little frustrated right now, and unsure how to proceed. I feel like I need to suck it up and move forward, but that's a real challenge right now.

I just completed 6xTC last week (yea!) for a local recurrence 4 years after initial dx. I will be having a left mx with immediate DIEP in 4 weeks. Prior to this last round of chemo my MO ordered a pelvic/abdominal CT which showed enlarged mediastinal and hilar lymph nodes, and lung lesions. Follow-up CT a couple of weeks ago show previous lung lesions gone (except one which is stable) and a new lesion that is 8 mm. Mediastinal lymph node has grown from 1.3 to 1.6 and new radiologist days it was never a LN but rather a goiter.

My surgeon at UofM decided they needed to do an independent evaluation of the CT scan, and I got the results this morning. They see nothing in the mediastinum at all. They see a new 8 mm lung lesions in the right lung, as well as lucent lesions on T2 and T3, and sclerotic foci on the left iliac bone and left femoral neck - none of which was reported by my previous radiologist.

I called the surgeon to ask her to explain and she said they're all too small to do anything with and they're plan is to focus on "symptom management." She would not say yes, these are mets because they can't biopsy them, but she also won't say no, they aren't. She just kept saying, When you have symptoms we'll deal with them then.

Seriously? At present I feel great, and I don't want to do anymore treatment unless necessary - but it would be nice to know if I should be watching for something. I'm taking this new report to my current MO and want to push for another CT in six months. Is that unreasonable?
"Be happy for this moment. This moment is your life." - Omar Khayyam Dx 11/22/2011, IDC, Left, 1cm, Grade 2, ER+/PR-, HER2- (FISH) Surgery 12/5/2011 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole-breast: Breast, Lymph nodes Dx 1/27/2016, IDC, Left, 1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/15/2016 Lumpectomy; Lymph node removal: Left Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy: Left; Reconstruction (left): DIEP flap Dx 1/31/2017, IDC, Stage IV, metastasized to bone
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Jun 20, 2016 06:54PM KBeee wrote:

how frustrating for you. I think I would seek a third opinion. Sorry you have to deal with this uncertainty. I would not be comfortable with symptom management as the response

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Jun 20, 2016 07:08PM ChiSandy wrote:

Nancy, I would be frustrated as hell, too--especially since you've thrown everything in the book at the beast twice already. I would definitely seek a second opinion from another center.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Jun 21, 2016 09:03AM cive wrote:

It would appear that your er status changed - I would think you might want to get an opinion from a MO meanwhile. It maybe that your treatment plan wouldn't change, but MO could advise best on that.

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Jun 21, 2016 10:16AM - edited Jun 21, 2016 10:23AM by NancyHB

Thank you for your responses.

Karen and Sandy, I've thought about a third opinion but worry that in making too much of this? I've been told by my current MO as well as the specialists at UM that mets aren't sought out or dx'd until symptoms appear, at which time stage and treatment change. I understand the reasoning behind this - why rush to progress dx to incurable but treatable, and instead enjoy QOL without a Stage IV dx? Right now I'm fine, feel pretty good, miss the hell out of my running but hope to get back to that after surgery...

I keep getting mixed messages which simply confuses me. It is, or it isn't. Commit, please. Stop being so nebulous. Even say, "This looks like the beginnings of..." Or "We suspect..." Or better yet, "Nothing to see here, move along." It's made even harder when 3 radiologists can't seem to even agree on what they see on the scans. Ugh.

Given where these new lesions are - do Ireally wait until I fracture my hip or back before someone says "Now we know?!"

It's the limbo that's so hard. Like that waiting period when first dx'd.

It's not that I want to "go there", rather I just want answers. Maybe that IS my answer, which begs either a third opinion or a wait-and-see approach.

I dropped the new reports off at my MOs office this morning for his review. He's on vacay until Thursday so maybe I just wait for his response. That's only a couple of days - I can do that. 😉

"Be happy for this moment. This moment is your life." - Omar Khayyam Dx 11/22/2011, IDC, Left, 1cm, Grade 2, ER+/PR-, HER2- (FISH) Surgery 12/5/2011 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole-breast: Breast, Lymph nodes Dx 1/27/2016, IDC, Left, 1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/15/2016 Lumpectomy; Lymph node removal: Left Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy: Left; Reconstruction (left): DIEP flap Dx 1/31/2017, IDC, Stage IV, metastasized to bone
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Jun 21, 2016 10:26AM ShetlandPony wrote:

Nancy, I think a PET scan could clarify things, especially a combined PET -CT. This should be available at a major cancer center.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 21, 2016 10:47AM - edited Jun 21, 2016 01:40PM by NancyHB

Do areas need to be >=1 cm to show up on a PET scan?

(Edited to correct horrible mid-afternoon spelling and grammar)

"Be happy for this moment. This moment is your life." - Omar Khayyam Dx 11/22/2011, IDC, Left, 1cm, Grade 2, ER+/PR-, HER2- (FISH) Surgery 12/5/2011 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole-breast: Breast, Lymph nodes Dx 1/27/2016, IDC, Left, 1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/15/2016 Lumpectomy; Lymph node removal: Left Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy: Left; Reconstruction (left): DIEP flap Dx 1/31/2017, IDC, Stage IV, metastasized to bone
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Jul 22, 2020 10:14PM outnumberedx4 wrote:

Hi NancyHB.

i know this was a long time ago, but did your lucent lesions on your T2 and T3 end up being mets? I have the same thing in the same place. My radiology oncologist told me my scans were clear, but when I read the reports online, it mentions a 5-6mm lucent lesion on the right aspect of the T2 and T3. I also have a hyperintense spot on my brain. The report says “likely gliosis from remote insult” but I’ve never had a brain injury before. My rad onc didn’t mention that finding to me. He said it was “artefact” and sounded very adamant that I was all clear. Then I read his notes from our appointment online and it says “unsure what to make of this” regarding the brain spot. I’m just lost because he sounded plenty sure when speaking with me.


so needless to say, the spine lesion plus the brain spot have me worried.

Not fragile like a fLoWeR, fragile like a BOMB. Dx 9/23/2019, IDC, Right, 3cm, Stage IIIA, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 10/17/2019 AC + T (Taxol) Surgery 3/26/2020 Lymph node removal: Right; Mastectomy: Left, Right Radiation Therapy 4/27/2020 Whole-breast: Lymph nodes, Chest wall

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