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Topic: Wow, I *really* don't want to be in this group

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Mar 31, 2021 11:09PM

sunshinegal wrote:

I hate being back on this board.

I had DCIS 10 years ago, and had really moved on with my life. Married, two kids, pandemic puppy, doing life and not thinking about cancer *at all*. I was sure, in fact, that the lump I found a month ago was going to be nothing.... but it wasn't nothing. It was 6mm of IDC, ER+/PR+ HER2-.

Coincidentally I developed sciatica in the last month or so, which didn't shock me because I've had back & core issues for years, and I've been a desk jockey (too much sitting) for 6 months, but of course everyone is worried about bone mets. So far I've had X rays of my back, hip, and femur and nothing shows mets - orthopedist believes degenerative disease in my back is causing radicular pain (whee!), but I am having a PET/CT scan soon to check everywhere else. Needless to say I'm terrified about what the PET/CT will show. It's really hard not to go to the bad place mentally. I went to a *very* dark place 10 years ago during this waiting phase and it's hard not to go there now.

Any encouragement or suggestions to help me stay out of the bad mental place would be most welcome. Thanks.

And, sorry to be back. No offense.

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)
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Posts 31 - 46 (46 total)

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Apr 9, 2021 10:57PM 2019whatayear wrote:

glad the test is done and hoping you get unremarkable results asap

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020
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Apr 10, 2021 03:37AM Olma61 wrote:

A few more vibes for a positive outcome <

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External: Bone
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Apr 12, 2021 12:23PM sunshinegal wrote:

The PET/CT came back clear! NO METASTASIS!!!!

I burst into tears at the news, my husband cried at the news, my sisters cried at the news. We've all carried SO MUCH STRESS waiting for these results. Now I feel like I can breathe a little bit.

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)
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Apr 12, 2021 12:34PM Beesie wrote:

Yay!! Congratulations!


Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Apr 12, 2021 12:52PM ctmbsikia wrote:

Yes!

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Apr 12, 2021 02:47PM 2019whatayear wrote:

Im so happy! Wonderful news!

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020
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Apr 12, 2021 04:21PM sunshinegal wrote:

Met with the medical oncologist this afternoon, who says treatment plan is shaping up to be lumpectomy, radiation, hormone therapy. Possibly ovary suppression (I think that's what she said?) in addition to tamoxifen if genetic testing results indicate something. Or maybe if I have positive nodes? I don't quite remember. She thinks tumor is too small to do oncotype dx on it. Does this sound right?

I still need to have a chest MRI - plastic surgeon wants it, to check for implant ruptures - and MO will get another look at the nodes even though nothing in the nodes lit up on the PET.

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)
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Apr 12, 2021 04:56PM Olma61 wrote:

Great news! Best of luck with your treatment .


Heart

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External: Bone
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Apr 13, 2021 09:27AM sunshinegal wrote:

Thanks, Olma61!

So DanaFarber (DFCI) has started reviewing my info and their report differs a little bit from the original pathology:

  • DFCI says it's Grade 2 (7 of 9 on modified Bloom-Richardson scale). (Orig report says grade 2-3)
  • DFCI says no DCIS present with note explaining why (orig says DCIS present alongside the IDC)
  • DFCI says Estrogen 95% STRONG staining (orig says MEDIUM staining)
  • DFCI says Progesterone 95% STRONG (orig says 80% MEDIUM)

These are interesting nuances. Don't think they change treatment decisions, but I wonder why they're different.

I see DFCI in person on the 19th...

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)
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Apr 13, 2021 06:34PM cookie54 wrote:

Yaaay......I love hearing positive news! Best wishes going forward with all of your treatment.

Dx 8/15/2016, IDC, Right, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 9/13/2016 Mastectomy; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant Chemotherapy 10/13/2016 AC Dx 6/2020, IDC, Right, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/28/2020 Carboplatin (Paraplatin), Gemzar (gemcitabine) Surgery 10/18/2020 Lymph node removal: Right Radiation Therapy 11/22/2020 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Xeloda (capecitabine)
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Apr 14, 2021 08:25AM Salamandra wrote:

So glad for you! Good luck with the treatment and I hope you get all best case scenarios from here on out!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Apr 14, 2021 03:07PM sunshinegal wrote:

Is it normal for a lumpectomy to get scheduled 2 months after dx? This seems so long, I don't get it! I'm not having any pre-surgical treatment.

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)
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Apr 19, 2021 09:18PM - edited Apr 20, 2021 11:49AM by sunshinegal

Had the 2nd opinion at Dana Farber today. They would be more conservative about the axillary nodes. In fact they had me do an axilla utrasound while I was there, which shows normal nodes / no indications of cancer. That, combined with the clear PET/CT scan might lead them to leave my nodes alone if the MO indicated he didn't need node status to determine treatment.

So that was the first thing that was different with them.

The second thing was that MO thinks he wouldn't do tamoxifen but instead Lupron & letrozole. I'll have to replay our recording of the meeting to remember the reason why.

Interesting stuff to mull over.

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)
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Apr 23, 2021 12:00PM KBeee wrote:

Glad the pet scan was clear. Lupron plus Letrozole has been shown to be more effective which is why they may be suggesting that.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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May 5, 2021 01:13AM Rrobin0200 wrote:

sunshinegal,

Forgive me for asking, but I didn’t read the thread. Did you have a single or double MX for the DCIS? Where was the second diagnosis found.. in the dcis breast or the other breast?

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/31/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 5, 2021 12:36PM sunshinegal wrote:

Rrobin0200,

I had single MX at the original dx in 2010, and prophylactic MX on the other side in 2015. The 2nd dx was on the DCIS side.

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)

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