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Topic: Standard care post-treatment

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Sep 14, 2020 01:38PM

StAuggie wrote:

Hey all, I'm looking to see if my post-care is normal, or standard.

I had three 1 cm tumors. Grade 3. All Her2- and Pr-. One was E-, one E+ 3%, one E+ 9%. Four AC, 12 Taxol, then BMX.

I had one pet scan prior to chemo, showing no lymph node involvement, and an ultrasound near the end of chemo to check progress. Two of the three were gone, and a tiny portion of one remained. Surgery removed all with clean margins, and confirmed no lymph node involvement. This was last October. I'm on tamoxifen.

Since then, my onc checkups have consisted only of them asking if I'm having pain, and dealing with side effects from tamoxifen. One checkup included a breast area exam. Is this normal? No blood work, no scans to be sure that mets aren't forming? Is this standard care? I live in fear of it growing where it can't be seen or felt. We all know how triple neg likes to travel. My doctor is ready to have my appointments going to every six months. I just need to know if this is normal, or if I need to advocate for myself.

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/8/2019 AC + T (Taxol) Surgery 10/28/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 14, 2020 02:27PM Ingerp wrote:

I'm not TN, but I currently see my RO once a year, my MO twice a year, and I get an annual mammo. Physical breast exam at all of those but no bloodwork or anything. Scans are not part of normal follow-up.

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 Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Sep 14, 2020 05:06PM Beesie wrote:

Sounds pretty normal. Here are the NCCN Guidelines for follow-up after breast cancer treatment. I've boxed in red the 3 areas that are relevant to you, being triple negative. Note that under Imaging, obviously "Mammography every 12 mo" doesn't apply to you since you've had a BMX.

The only thing that maybe should be different is that you should be getting a physical exam at every visit.

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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Sep 14, 2020 07:32PM MountainMia wrote:

This is my experience, too. I was diagnosed 2/2019 with IDC 1.5cm and DCIS 2.9cm, triple negative, grade 3, no positive nodes. I had lumpectomy, chemo AC x 4, radiation and finished treatment a year ago this week. I will have annual mammogram and ultrasound (dense breasts,) an annual exam with BS, another with someone from the "survivorship clinic," and one with my PCP. The 3 doc exams are spread through the year. Each of those will include a physical exam. No blood tests other than the normal ones my PCP always orders, and no extra scans. My care center is a NCI (National Cancer Institute) cancer care center.

It DOES feel odd to be kind of cut loose, after all the appointments of treatment. It's a bit unsettling. But it's the standard of care, as Beesie shows above.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 18, 2020 07:55PM StAuggie wrote:

Thank you all! I try not to live in this fear-- but the thought of Mets is never far from my mind. I really like my doctor, but I don't know cancer care protocols and wanted to make sure this was normal. I've had other people ask me about it, and they are always surprised that there isn't blood work or scans to monitor it.

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/8/2019 AC + T (Taxol) Surgery 10/28/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 18, 2020 08:26PM - edited Sep 18, 2020 09:15PM by moth

the way my MO explained it is that there are no evidence based reasons to go looking for mets. If they show up, you'll know and there's no documented difference in prognosis.

That said, it's important to not ignore symptoms. New symptom/pain that doesn't go away in 2 weeks, get checked. Headaches, joint/pain ache, cough,.shortness of breath... There's a nice poster explaining common met sites and symptoms

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Oct 16, 2020 05:32PM LillyIsHere wrote:

Thank you for the link Moth. Interesting but for us who are on AI treatments, we have most of the SE similar to recurrence. I guess that's why we get nervous.

I am told to see MO only 2xyear. He does blood check to make sure I'm good to go for zometa infusion and basically answers my questions. The last time I asked him if he can do a physical exam and he just checked around breast area for a second. That's it!

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” 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 11/30/2019 Femara (letrozole) Targeted Therapy
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Oct 16, 2020 06:53PM Cutie wrote:

Hi All,

I also created a post what we do after treatment 2 days ago and nobody joined. But I m here. I had BC diagnosed late 2018 and treatments of 4 AC and T, then double mastectomy. No hormonal therapy. I m seeing my MO every 3 months and she check physical checks at breast area. Also blood work to make sure liver, kidney function ok plus immune system. Some said blood work for CA 17 any issues in your system early. I was wondering if we are required to do scans to monitor.


Dx 12/28/2018, IDC, Right, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+
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Aug 28, 2021 06:02PM - edited Aug 28, 2021 06:02PM by Mememee

This Post was deleted by Mememee.
Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 2/9/2021 Lumpectomy Radiation Therapy 4/21/2021 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 19, 2021 09:24AM santabarbarian wrote:

I got blood work every 90 days for 3 years.  Now I am on 6 month intervals.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes

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