Meet others concerned about developing a recurrence or metastases.
Posted on:
Feb 9, 2020 02:05PM
- edited
Feb 9, 2020 02:12PM
by
clavelle
Joined:
May 2018
Posts:
5
Latest activity:
Mar 3, 2020
clavelle
wrote:
I had my second annual MRI and mammogram a couple of weeks ago, and several days ago found out that they want me to come back for an ultrasound. According to the nurse I spoke to on the phone, they found a 9mm "change" lateral to my scar, something that apparently was not there on last year's scans (about four months after my lumpectomy and while still on Herceptin).
In October I mentioned at my regular oncology appointment that I'd noticed some visible changes to my breast, and he agreed that he noticed some tethering by where my original lump was. I then saw the surgeon, who agreed, said she was sure it was changes from radiation and probably scar tissue, but sent me for an ultrasound. The radiologist immediately said it was fat necrosis that it was calcifying, but no biopsies were done. I'm wondering if this is the same area we saw on ultrasound. The nurse I spoke to didn't seem to know, and at first I thought it might be different, because my incision scar is by my nipple but the tumor was closer to my armpit. But I suppose the mention of my scar could be my internal scar? She tried to calm me down by telling me it's Bi-rads 3, but so was my original tumor. Everyone at every step was convinced it was nothing and were shocked when the biopsy said otherwise.
I had a complete pathological response to chemo and everyone tells me my prognosis is great, but I am freaking out that maybe I didn't really have a pCR and something got left behind. Two years ago, my husband and were just about to start IVF for a baby and I'd just started thinking about coming off hormonal therapy to try to use those eggs. What a rollercoaster!
Diagnosed at 36, no family history. One node tested positive before chemo, 2/7 removed after chemo had scarring
Dx
1/9/2018, IDC, Left, 2cm, Grade 3, ER+, HER2+
Chemotherapy
2/16/2018 AC + T (Taxotere)
Hormonal Therapy
2/16/2018 Zoladex (goserelin)
Targeted Therapy
5/18/2018 Perjeta (pertuzumab)
Targeted Therapy
5/18/2018 Herceptin (trastuzumab)
Surgery
9/4/2018 Lumpectomy: Left; Lymph node removal: Underarm/Axillary
Hormonal Therapy
10/1/2018 Aromasin (exemestane)
Radiation Therapy
10/30/2018 Whole-breast: Breast
Log in to post a reply
KBeee
Iowa
Joined:
Jul 2013
Posts:
5,051
Latest activity:
Sep 10, 2020
Log in to post a reply
Feb 11, 2020 08:22AM
KBeee
wrote:
Sorry you're on this emotional roller coaster. Hoping you get answers soon and it's all benign. Keep us posted.
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)
Mudstick
Joined:
Oct 2018
Posts:
96
Latest activity:
Jan 15, 2021
Log in to post a reply
Feb 11, 2020 08:57AM
Mudstick
wrote:
So sorry to hear you are waiting and everything is in flux :-( Have they scheduled your ultrasound?
I'm really hoping it is just scar tissue and benign changes related to what was seen in October!!!!
Dx at 43 (2018) with multi-focal IDC (1.7cm largest) + microinvasive DCIS 7.5 cm. LVI + Positive Anterior Margin for DCIS. Oncotype Score = 14. Local Recurrence February 2020
Dx
9/2018, DCIS/IDC, Right, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2-
Surgery
10/11/2018 Mastectomy: Right; Reconstruction (right): DIEP flap
Hormonal Therapy
12/31/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Dx
2/2020, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC)
Hormonal Therapy
Femara (letrozole), Zoladex (goserelin)
Surgery
Lumpectomy: Right
Radiation Therapy
Chemotherapy
Cytoxan (cyclophosphamide), Taxotere (docetaxel)
clavelle
Joined:
May 2018
Posts:
5
Latest activity:
Mar 3, 2020
Log in to post a reply
Feb 11, 2020 09:15AM
clavelle
wrote:
Thank you KBeee and Mudstick! My ultrasound is scheduled for the 17th, which feels like ages away, and will be almost 3 weeks from the original MRI and mammogram. Particularly if biopsies are going to be done and we'll have to add more time onto that. I think it's partly due to the imaging department being really busy, but also because they're not that concerned. I did speak to the oncologist on the phone a few days later and he said he can't confirm, but he's pretty sure it's the same area we investigated in October, and for that reason he's not worried, but said he "still thinks it's a good idea to do an ultrasound" (as if I would ever skip something like that!)
I'm trying to remind myself that the chances really are slim it's back, that I had a pCR, that I had radiation, that it's where scar tissue would be expected, and we already know there's fat necrosis there. But I keep thinking back to my original diagnosis being a 3, and no one thinking it was anything sinister – so much so that they suggested I just return for follow-up/biopsy results in three weeks, after I was back from a vacation (and then called me on vacation trying to get me to come in earlier). And I keep wondering why this is something that wouldn't have been there last year.
I go in for my monthly Zoladex injection tomorrow, so I might stop by and try to speak to someone about moving the appointment up.
Diagnosed at 36, no family history. One node tested positive before chemo, 2/7 removed after chemo had scarring
Dx
1/9/2018, IDC, Left, 2cm, Grade 3, ER+, HER2+
Chemotherapy
2/16/2018 AC + T (Taxotere)
Hormonal Therapy
2/16/2018 Zoladex (goserelin)
Targeted Therapy
5/18/2018 Perjeta (pertuzumab)
Targeted Therapy
5/18/2018 Herceptin (trastuzumab)
Surgery
9/4/2018 Lumpectomy: Left; Lymph node removal: Underarm/Axillary
Hormonal Therapy
10/1/2018 Aromasin (exemestane)
Radiation Therapy
10/30/2018 Whole-breast: Breast
KBeee
Iowa
Joined:
Jul 2013
Posts:
5,051
Latest activity:
Sep 10, 2020
Log in to post a reply
Feb 11, 2020 09:45AM
KBeee
wrote:
Definitely ask about moving the appointment up and also ask teh ultrasound place yourself. You also can ask who they'd recommend if you choose to go elsewhere; you want to find someone sooner. They often can find somethign once they know you are willing to go elsewhere.
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)
ctmbsikia
PA
Joined:
Mar 2018
Posts:
639
Latest activity:
Jan 15, 2021
Log in to post a reply
Feb 11, 2020 10:47AM
ctmbsikia
wrote:
Hi clavelle. So sorry you are so young and facing a call back. Wishing you the best of luck that this is benign.!!
I recently passed a mammogram and US after failing an MRI. MRI went from Birads 3 last June to a Birads 4 in Dec.,
The ultra sound labeled this area that was enhancing on MRI as fat necrosis. My BS called and I did just have a biopsy anyway and that is exactly what it was. I am a little surprised that our breast tissue can still go through changes long after recovering from surgery. I really hope this is the case with you as well.
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
1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel
Radiation Therapy
4/11/2018 Whole-breast: Breast
Hormonal Therapy
6/25/2018 Arimidex (anastrozole)
clavelle
Joined:
May 2018
Posts:
5
Latest activity:
Mar 3, 2020
Log in to post a reply
Feb 18, 2020 10:18AM
clavelle
wrote:
Thanks everyone for all your helpful words! To update, I went for my ultrasound yesterday. The radiologist showed me the area of enhancement on MRI, which was pretty faint to my eyes. She said because of my history they have a much lower threshold for doing biopsies—the decision to biopsy was made before she even took a look. This radiologist is not the same one I saw in October who diagnosed fat necrosis (I was supposed to see her, but there was some administrative mix-up and I wound up on the wrong list, apparently), and she was actually unaware I'd even had an ultrasound then. When I mentioned it she pulled it up immediately in the system and said "To be honest, this looks like the same place". She was pretty stone-faced throughout and not particularly reassuring, but after the second biopsy she slipped out a "Oh, I really don't think is anything to be worried about". I interpreted that as maybe her being able to tell from the way the needle went in/how the tissue looked? Afterward I had a quick appointment with my oncologist who told me she really thinks it's scar tissue, but wants to settle this so it doesn't keep coming up in the future. She also told me that this area did not appear on the mammogram from the same day, which she said could be interpreted positively. I should have biopsy results in a week or so. No definitive answers yet, but I think it went as well as it could have.
Diagnosed at 36, no family history. One node tested positive before chemo, 2/7 removed after chemo had scarring
Dx
1/9/2018, IDC, Left, 2cm, Grade 3, ER+, HER2+
Chemotherapy
2/16/2018 AC + T (Taxotere)
Hormonal Therapy
2/16/2018 Zoladex (goserelin)
Targeted Therapy
5/18/2018 Perjeta (pertuzumab)
Targeted Therapy
5/18/2018 Herceptin (trastuzumab)
Surgery
9/4/2018 Lumpectomy: Left; Lymph node removal: Underarm/Axillary
Hormonal Therapy
10/1/2018 Aromasin (exemestane)
Radiation Therapy
10/30/2018 Whole-breast: Breast
KBeee
Iowa
Joined:
Jul 2013
Posts:
5,051
Latest activity:
Sep 10, 2020
Log in to post a reply
Feb 21, 2020 03:16PM
KBeee
wrote:
Hoping it is benign. I am glad they are being extra careful.
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)
clavelle
Joined:
May 2018
Posts:
5
Latest activity:
Mar 3, 2020
Log in to post a reply
Mar 3, 2020 11:00AM
clavelle
wrote:
Hello! I wanted to update everyone with some very good news I got yesterday: the biopsy results were benign!! Just a mix of scar tissue, fat necrosis, and some inflammation. Over the past few weeks my mind was convinced that every possibility was a very real possibility. I'm also very happy because the oncologist gave me the green light to come off Zoladex/AI in June to hopefully start trying to conceive by my 39th birthday in September.
Diagnosed at 36, no family history. One node tested positive before chemo, 2/7 removed after chemo had scarring
Dx
1/9/2018, IDC, Left, 2cm, Grade 3, ER+, HER2+
Chemotherapy
2/16/2018 AC + T (Taxotere)
Hormonal Therapy
2/16/2018 Zoladex (goserelin)
Targeted Therapy
5/18/2018 Perjeta (pertuzumab)
Targeted Therapy
5/18/2018 Herceptin (trastuzumab)
Surgery
9/4/2018 Lumpectomy: Left; Lymph node removal: Underarm/Axillary
Hormonal Therapy
10/1/2018 Aromasin (exemestane)
Radiation Therapy
10/30/2018 Whole-breast: Breast
grainne
ireland
Joined:
May 2016
Posts:
228
Latest activity:
Jan 16, 2021
Log in to post a reply
Mar 3, 2020 02:57PM
grainne
wrote:
So happy for you...great news. Good luck going forward.
grainne
Dx
2/1/2016, DCIS/IDC: Tubular, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
Hormonal Therapy
4/15/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
KBeee
Iowa
Joined:
Jul 2013
Posts:
5,051
Latest activity:
Sep 10, 2020
Log in to post a reply
Mar 5, 2020 05:30PM
KBeee
wrote:
Great news!
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)