Join Us

We are 217,654 members in 84 forums discussing 160,670 topics.

Help with Abbreviations

Topic: When is it "official"??

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

Meet others concerned about developing a recurrence or metastases.

Posted on: Jun 3, 2020 01:07AM

JEA16 wrote:

Hello! It's been a while.

A recent spine mri for back pain showed a couple small new lesions, which was followed up with a PET scan a little over a week ago. According to the PET report, there are two spots in my pelvis which "are highly suspicious for osseous metastases", in addition to "questionable findings" in my left hilar region (both of which were not on the last PET scan a year ago). Bone biopsy was done yesterday on the pelvic lesion, so we're still waiting on the pathology.

While I'm pretty sure I understand where this is all heading, my head is spinning and I'm not sure what to think. I thought about heading over to check out the Bone Mets thread, but then wasn't sure if it was a bit premature for that.

Sorry, I don't even really know what i'm asking here, to be honest. I suppose I'll know what this is soon enough, but maybe I'm just looking for people with similar experiences to help me prepare myself in the meantime? Does everyone have a biopsy to confirm mets, or would the scans be confirmation enough?

Thank you all in advance!

BRCA1 and TP53 (dx Li Fraumeni) Dx 8/5/2016, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 9/19/2016 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/7/2016, IDC, Right, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 11/14/2016 Taxol (paclitaxel) Targeted Therapy 11/14/2016 Herceptin (trastuzumab) Surgery 3/16/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 9/7/2017 Prophylactic ovary removal
Log in to post a reply

Page 1 of 1 (18 results)

Posts 1 - 18 (18 total)

Log in to post a reply

Jun 3, 2020 12:05PM berries wrote:

It wont be official until you get the biopsy results in... in the meantime, I will pray for you that it is benign findings and just damage from chemo or arthritic changes. I'm actually going through something very similar right now and so scared, but keeping hopeful that they are just bone changes (as I am only 4 months out from AC/T chemo). Anyhow, please keep us posted and keep positive until you get those results.

Keep us posted! Sending you love xo

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
Log in to post a reply

Jun 3, 2020 01:48PM illimae wrote:

Biopsy makes it official. Scans can show a lot but not everything. I had 1 biopsy proven bone met and 2 suspected/presumed but after 3.5 years of treatment, a trial radiologist stated that the 2 aren’t mets, so I’m back to my original 1. Good luck 🙂

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jun 3, 2020 03:22PM berries wrote:

illimae how did they rule out the 2 suspected ones?

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
Log in to post a reply

Jun 3, 2020 03:33PM illimae wrote:

berries, Great question but I’m not sure, I was driving with the hubs when I got the call and didn’t ask. I assume that having the same radiologist review years of scans back to back allowed him to see things in a different light, rather that having different radiologists interpretations of scans every 3-6 months. But I will ask and report back if anyone is interested.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jun 3, 2020 04:29PM JEA16 wrote:

Thanks, ladies!! That's pretty much what I was thinking. I think I just needed to check-in with reality for a moment. :)

@berries

I'm so sorry you're going through something similar. I hope you get answers soon, and that yours is benign as well! xo

@illimae

How long did it take to get the results from your bone biopsy? I know it can take a little while longer for the results on the bones, but of course each minute feels like an eternity as I wait. Also, I'd be interested in how they ruled out your suspected mets as well if you ever get that information.

thanks again!!

BRCA1 and TP53 (dx Li Fraumeni) Dx 8/5/2016, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 9/19/2016 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/7/2016, IDC, Right, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 11/14/2016 Taxol (paclitaxel) Targeted Therapy 11/14/2016 Herceptin (trastuzumab) Surgery 3/16/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 9/7/2017 Prophylactic ovary removal
Log in to post a reply

Jun 3, 2020 07:32PM illimae wrote:

JEA, once they saw the bone scan, I was told I’d be treated as stage IV but I think the bone biopsy and results were done the following week. FYI, don’t google bone biopsy, I lost my mind for nothing, it wasn’t bad, just some pressure.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jun 6, 2020 06:28AM - edited Jun 6, 2020 06:28AM by kar123

Just chiming in. I just got some bloodwork back. We've been watching my ALP Levels creep up slightly. I have a new onc and I feel like she is paranoid about every single thing, so I've been holding off on scans. It did have a bone scan show a tiny spot on a rib, but I remembered having had an injury there. (nothing confirmed). This latest round of tests showed I'm just a tenth of a point over normal for WBC, Calcium, and while still slightly higher than normal my ALP came down.. The test also showed signs of anemia. Dr. Google has told me this is not good. It will be 10years from diagnosis on June 14th. My birthday was June 3rd. I was diagnosed at 40 and here I am at 50, so happy a few days ago and now I'm frozen in fear just like I was at diagnosis.

Dx 6/2010, ILC, 6cm+, Stage IIIA, Grade 2, 2/7 nodes, ER+/PR+, HER2- Chemotherapy 6/27/2010 AC + T (Taxol) Surgery 11/16/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 1/23/2011 Breast, Lymph nodes Hormonal Therapy 4/3/2011 Arimidex (anastrozole) Hormonal Therapy 4/30/2013 Femara (letrozole)
Log in to post a reply

Jun 6, 2020 10:46AM berries wrote:

I'm so sorry you're going through this, kar... do you have any pain? Its amazing you are 10 years out and that alone should be celebrated. I pray for clear results and peace of mind for you!

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
Log in to post a reply

Jun 6, 2020 10:52AM - edited Jun 6, 2020 10:54AM by GiGiL

I am right there with you girls. I am 9 years out and was feeling pretty fit. I did some heavy lifting which caused rib pain that wouldn't improve for about a month. My husband is an MD so he did a CT scan and found a broken rib. The CT also showed some spots on random vertebrae. That CT sent me to an Oncologist. Now I am scheduled for a mammo and ultrasound and also PET scan. I am frightened and my mind is running overtime. The Onco ran blood tests and everything looks perfect except the cancer marker is elevated. Ugh! How does one get through the waiting and worrying? I have always done meditation, it it isn't cutting it this time. ❤️

Dx 5/6/2011, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2-
Log in to post a reply

Jun 6, 2020 01:56PM DebJenx2 wrote:

I'm here to ladies core biopsy is back and after 14 yrs NED it's looking like a right side mastectomy, with limp nodes. MRI and bone scan in my immediate furture. None however will happen before my 58th birthday which is the 9th.

Dx 11/10/2005, IDC, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER+/PR+, HER2+ (IHC) Surgery 11/30/2005 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant Chemotherapy 12/31/2005 AC + T (Taxotere) Hormonal Therapy 4/30/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 4/30/2006 Herceptin (trastuzumab) Dx 6/5/2020, IDC, Right, 3cm, Stage IV, metastasized to other, Grade 2, ER+/PR+, HER2- (IHC) Chemotherapy 7/13/2020 CMF Chemotherapy 8/12/2020 CAF
Log in to post a reply

Jun 6, 2020 04:53PM Moderators wrote:

Dear DebJenx2,

Welcome to the BCO community. We are sorry that you find yourself here with these new findings after 14 years NED. We are glad that you reached out to our members and we hope that you will find support and helpful information here that will guide you along the way. Please keep us posted on what you continue to learn and when your surgery and tests are scheduled. Please let us know if we can be a help to you as you navigate your way around the boards.

The Mods

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

Jun 8, 2020 09:20PM illimae wrote:

berries and anyone interested, I heard back about the suspected right scapula met that I was recently told is not actually cancer. The doc said his radiologists reviewed CT and bone scans for the past 3 years and the scapula appears on the bone scan but not the CT every time, therefore they are confident that it is something benign, not cancer.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jun 8, 2020 09:56PM GiGiL wrote:

That is good news! I am very happy for you.

Dx 5/6/2011, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2-
Log in to post a reply

Jun 8, 2020 10:12PM berries wrote:

great news!!

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
Log in to post a reply

Jun 9, 2020 08:33PM MinusTwo wrote:

Illimae - FANTASTIC news. Thanks for sharing the scapula issue is benign !!!

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

Jun 12, 2020 03:45PM JEA16 wrote:

Hey there! Good news - preliminary results from ilium biopsy don't show cancer. So that's great! But I guess I'm not totally able to relax just yet. Since there were a few spots on the scan looking like mets they are working to decide the next steps, which will likely include a chest CT and thyroid biopsy to start (I also have a new thyroid nodule that wasn't on my ultrasound this past Nov which was also avid on the PET scan and is highly suspicious on u/s). I wish I could fully celebrate, but I'm still holding my breath over here.

thanks for the support, ladies!

BRCA1 and TP53 (dx Li Fraumeni) Dx 8/5/2016, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 9/19/2016 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/7/2016, IDC, Right, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 11/14/2016 Taxol (paclitaxel) Targeted Therapy 11/14/2016 Herceptin (trastuzumab) Surgery 3/16/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 9/7/2017 Prophylactic ovary removal
Log in to post a reply

Jun 15, 2020 09:24PM LillyIsHere wrote:

Hi Ladies, here I am worried for my thyroid. In beginning of May I noticed a thickness of my neck, the opposite side of BC. I had a blood test and my TSH from normal a year ago has moved to Hypo levels. Also, a noticed a nodule and the ultrasound last week did show a nodule. Now I am back to my PCP and waiting for her to direct me where to go. Also, my right ear is starting to hurt as well. Can it be cancer in thyroid? I am so worried. Any of you has any similar experience? Any suggestions?

Thank you ladies!

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
Log in to post a reply

Jun 23, 2020 11:17AM KBeee wrote:

JEA16, hoping you get firm answers soon and that all is benign. Sorry for this extended time of uncertainty which is so hard.

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)

Page 1 of 1 (18 results)