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Topic: Follow-up scans after treatment has ended

Forum: Share Your Experiences Of Life After A Breast Cancer Diagnosis —

Share your experiences of life after a breast cancer diagnosis and offer advice on how you cope with life's daily challenges, including how you develop a new daily/weekly routine while you deal with breast cancer.

Posted on: Apr 12, 2021 10:09AM

kmldpl wrote:

I was diagnosed in November 2020, stage 1 B (3 small -- under 2 cm) tumors in my left breast, no lymph node involvement. Had a bi-lateral mastectomy, followed by 4 rounds of T&C chemo, and about to start AI drugs. But my doctor said she doesn't do scans -- so no follow-up MRI's, bone scans, lung scans, etc. This scares me! I know some of my friends do get scans, others don't. Wondered if I could get some guidance on what standard follow-up protocol is. Thank you!

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Apr 12, 2021 12:17PM VioletKali wrote:

Due to implants I have a yearly breast MRI.

My tumor was 1.7cm, 10% of it was noted to be DCIS. No family history of cancer at all. Discontinued Chemo d/t uncontrollable side effects which caused hospitalizations, blood transfusions, and poor quality of life. I am doing well! Dx 6/19/2014, DCIS, Stage 0 Dx 6/19/2014, IDC, 1cm, Stage IA, Grade 3, 0/10 nodes, ER+/PR+, HER2+ Surgery 8/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 9/14/2014 Herceptin (trastuzumab) Chemotherapy 9/14/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Apr 12, 2021 12:19PM kmldpl wrote:

Thank you!

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Apr 12, 2021 01:34PM exbrnxgrl wrote:

I have had implants for almost 10 years and no mri’s. Beside the guide that beesie posted you may see that some people do have more frequent scanning even at lower stages. This is not standard and simply exposes folks to more radiation without much benefit, not to mention the stress scans create for many of us. I am stage IV and went from scanning every 3 months to just once a year. Of course if I have any concerns, my mo would order a scan as needed.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Apr 12, 2021 01:41PM kmldpl wrote:

thank you!

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May 1, 2021 05:45PM edwards750 wrote:

I didn’t have scans either. I was DX in 2011 with IDC, Stage 1b, Grade1. I had 33 rounds of radiation and took Tamoxifen for 5 years. My MO never suggested scans for me. I took the Oncotype test and my score was 11 with an 8% chance of a recurrence.

My sister had lobular breast cancer and had constant scans. I guess it depends on your MO believes is necessary.

Diane

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May 2, 2021 06:52AM Salamandra wrote:

I asked about follow up MRIs and my doctor agreed and my insurance agreed to pay for it. I think these were the main factors:

  • strong family history
  • young age of diagnosis
  • lumpectomy
I alternate now yearly MRI and yearly mammogram, about six months apart. So far I had one MRI scan that picked up a false positive, which (along with radiation) is a known potential harm of scanning. It was indeed a scary roller coaster ride, even intellectually knowing the highly likelihood of exactly that outcome.

Overall I think I'm still feeling good about this course. That said, my initial cancer was found by a doctor manual exam (my gynecologist). I personally couldn't feel anything even after the doctor tried to point out to me where it was. But ever doctor who laid hands on it found it. So I don't discount the huge value of a simple manual exam by a trained and experienced professional, and I prioritize that as much as the other scans.

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 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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May 2, 2021 07:56AM Spookiesmom wrote:

No scans for me either, until 7 years later I found a pea size lump on the other side. That lit up like 4th of July. Yep, it was back.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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May 2, 2021 09:38AM moth wrote:

there are official guidelines on what type of follow up is evidence based for pts who have finished breast cancer treatment. Figure 1 has the summary

https://ascopubs.org/doi/10.1200/JCO.2015.64.3809


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 2/14/2018 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 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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May 2, 2021 06:22PM NorCalS wrote:

Thanks Moth, that was helpful. MO doesn’t believe in routine scans, but if something comes up, i.e. headaches for over two weeks, she will order a scan. I received a second opinion, and the second opinion felt that due to my initial staging (3c/4), I should have more frequent physical exams - every three months vs. once a year that MO initially scheduled me on. Second opinion also felt that additional yearly MRIs could be helpful since my breast cancer was missed during routine exam. It just seems that doctors have a lot of flexibility on ordering scans and the amount of time they’re willing to spend on monitoring a patient. It is an adjustment not to have weekly blood tests and monthly exams

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2019 AC + T (Taxol) Chemotherapy 4/6/2020 Xeloda (capecitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall

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