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Topic: Any tests needed to detect any growths after Mastectomy??

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Apr 4, 2019 05:44PM

NicoleRod wrote:

My doctor here in cali said I wouldn't need any follow up yearly tests to detect breast cancer. Now I don't want to sound stupid so hear me out...I realize I would never need a mammogram bc I have no breasts..however I do remember hearing someone say they get yearly MRI's?? Is this only for people with implants?? Shouldn't we at least need MRI's of our chest for a couple years following the double mastectomy??

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 Cryoblation on 2 of 4 tumors in liver. Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Apr 5, 2019 12:13AM Meow13 wrote:

I don't think they recommended MRIs for double mastectomy patients as routine scanning but my doctor is still doing year blood tests. If you have any symptoms I am sure your oncologist will be happy to order specific MRIs. I have yearly MRI and mammogram because I had left side only mastectomy.

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Apr 5, 2019 05:37AM - edited Apr 5, 2019 05:39AM by CBK

I had a BMX and I just follow up with breast surgeon and oncologist. No MRI or imaging is done on a follow-up or routine basis and I had implant reconstruction.

I do have routine bloodwork at the minimum of every three months; cancer antigen blood test for both breast and ovaries and regular CBC and Comprehensive Metabolic panels. Not that those are going to be reliable for reoccurrence detection.

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/10/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/21/2017 AC + T (Taxol) Surgery 1/24/2018 Prophylactic ovary removal Hormonal Therapy 2/17/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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Apr 5, 2019 09:58AM 2002chickadee wrote:

Physical exams, particularly around scar lines, seems like something to be done with regularity.

DX'ed at age 41 on my first mammogram Dx 1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 3/23/2018 CMF Dx 9/2018, IDC, Right, <1cm, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy: Right Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 5, 2019 10:18AM Lexica wrote:

It makes me uncomfortable, but I concur with the previous posters... Just physical exams and CBC. My MO does not do cancer antigens/tumor markers. Although, my BC center is fairly free with ultrasound - if there is anything close to out of the ordinary (lump, bump, pain, etc), they will order one.

Diagnosed at 34. 2 years of Ibrance via PALLAS trial (ends 4/2020) Dx 7/2017, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- (IHC) Surgery 12/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Dx 12/27/2017, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 5/11 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/16/2018 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Aromasin (exemestane)
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Apr 5, 2019 11:00AM wallycat wrote:

Same here. Breast MRIs are impossible with bmx, similar to mammograms. My onco probably would not even order a CBC or any of the other "wellness" screenings unless I had a specific concern. Physical exam is what she recommends. I love my onco otherwise, I would probably start skipping these visits too.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Apr 5, 2019 02:23PM alto wrote:

Thanks for asking this. I had a single, so I still get a mammo and MRI. I assumed the mammo was useless for the mastectomy side, but I thought the MRI would pick up something. It seemed like on my last MRI they checked out the axilla, so I figured maybe it would get the chest wall area. Sounds like maybe not! I have a soft, slightly puffy area under my scar near the breastbone, that's kind of like a tissue lump, or scar tissue. My doctor didn't seem concerned by it and thinks it's just regular tissue. Since I've never really felt a 'lump,' I don't know what to be on the lookout for, other than a 'hard lump that doesn't move.' There's a lot less certainty with this stuff than one would hope for... :P

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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May 15, 2019 02:55PM kaitlin21 wrote:

Hi all! 

I just had a left total mastectomy for a borderline (not cancerous, but not benign) phyllodes tumor. My surgeon didn't mention any follow-up or monitoring care after my treatment, which is really surprising. Is that true about MRI's not detecting a problem on the side with no breast tissue? 

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May 15, 2019 03:24PM kber wrote:

I'm considering a BMX.  I think my MO mentioned something about regular (annual?) PET scans, but I'll have to ask again.  

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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May 15, 2019 03:53PM Spookiesmom wrote:

I had bmx 7 years ago. No scans of any type. Just follow up with MO. Blood tests about every 6 months. Unless you have symptoms, nothing. Unfortunately I developed symptoms in January. So stay observant, but don’t let fear take over your life.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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May 15, 2019 04:59PM kbram wrote:

You must have some kind of follow-up! I had a recurrence six years after BM. My BS followed me every six months until I reached the five year mark and then once a year. Luckily I found the new lump and made an appointment with her. I always got a physical exam and some times an ultrasound. It can happen!


Dx 10/18/2014, IDC, <1cm, Stage IA, Grade 3, 0/0 nodes, ER+/PR+, HER2-
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May 15, 2019 09:41PM Miranda-P wrote:


I seen a breast radiation oncologist when I was first diagnosed in Sept/Oct and just recently in March following my double mastectomy. She stated & feels because my pathology came back clear after my double mastectomy no radiation was needed. She did say that for the next 5 years I need chest CT’s. No mention of MRI’s.

I am doing excellent. Don’t lose hope or be dismayed. Life does go on and gets better. This is just temporary.

I am getting ready for the last stage of my reconstructive surgery and get my FOOBS next month. I’m not looking forward to another surgery but, I’m hopeful and know how incredibly blessed I am. Just trying to take one day at a time and allowing myself to “just be.” Stay positive and know that you’re not alone in this journey.

Don’t lose your joy! Smile and know you’re supported and loved.

All my best,

Pam 😊

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Jun 9, 2019 10:07AM Kellyruss wrote:

Ok just out of surgery about 10 days ago. They suggested I now proceed with an oncologist. Get my onco score. I had a BMX and nothing in lymph nodes. So basically all cancer removed. How does an onco score help me? Is it necessary?

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Jun 9, 2019 11:14AM - edited Jun 9, 2019 11:16AM by Beesie

Kellyruss, with a BMX, the odds are that all the cancer was removed from your breast. But even after a BMX, a small amount of breast tissue always remains - it's impossible for the surgeon to remove every cell of breast tissue - so you do still have a small risk, probably about 1% - 2%, that you could develop a local (in the breast area) recurrence.

More significantly, however, is that the BMX does nothing to address cancer cells that might have escaped from your breast prior to surgery, and moved somewhere else in your body. Clear nodes is a good indicator that no cells moved into the body through the lymphatic system, but it's not a guarantee - if it was just a few cells, they could move through undetected. The same thing can happen through the bloodstream. When women develop a distant recurrence, i.e. metastatic breast cancer, it's usually because those cells moved out into the body before the cancer was even detected. Breast cancer has usually been in our breasts for years before it becomes large enough to be detected, so there is plenty of time for a few cells to break away. Therefore a BMX, while reducing your risk of a local recurrence and reducing your chance to develop a new primary breast cancer at some time in the future, does nothing to reduce the risk of a metastatic recurrence. This is why study after study have shown that the survival rate is the same whether a patient has a MX or a lumpectomy + rads.

There is unfortunately no way to know with certainty if any cancer cells escaped before you discovered your breast cancer and before your surgery. This is because in most cases, it's just a few cells, too small to be detected by screening or tests. This is where systemic (i.e. whole body) treatments such as chemo and endocrine (anti-hormone) therapy come in (i.e. Tamoxifen and the AIs). Those treatments are given to track down and kill off rogue breast cancer cells that might be sitting somewhere in the body.

The Oncotype test is used to analyze the genetic make up of the cancer, to determine if it's a cancer that's likely to have shed off some cells as it was developing and growing. A low Oncotype score will suggest that the risk is low that your cancer would have shed cells, which would mean your risk of mets is low. With a low Oncotype score, chemo won't be recommended but in all likelihood hormone therapy will still be recommended as a precaution, because it's still possible that some cells could be sitting somewhere in your body. With invasive breast cancer, no matter how indolent, there will always be a least a small risk of mets. A high Oncotype score means that your cancer has an aggressive genetic profile, increasing the risk that some cancer cells might have moved out from your breast into your body prior to surgery. With a high score, both chemo and endocrine therapy will be recommended.

If I may ask, what was your diagnosis? Specifically, size of tumor, grade of tumor, ER/PR status? Since an Oncotype test has been suggested, it means that your tumor is ER+, but the % ER+ is an important factor that influences the Oncotype score. I'm assuming you are HER2- because if you were HER2+, chemo would likely be recommended without need for an Oncotype score.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jun 11, 2019 06:35PM footloose wrote:

Beesie, excellent reply. I copied for others who asked a similar question. thanks.


Dx 1989, IDC: Papillary, Left, <1cm, ER+/PR- Dx 6/2002, DCIS, Right, <1cm, Stage 0, ER+/PR-, HER2- Dx 11/2005, DCIS, Right, Stage 0, Grade 3, ER+/PR- Dx 12/18/2018, IDC, Right, 1cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR+, HER2- (DUAL) Dx 1/28/2019, IDC, Right, <1cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR-, HER2+ (DUAL) Dx 1/28/2019, IDC, Right, 1cm, Stage IIA, Grade 3, 1/12 nodes, ER+/PR-, HER2-
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Jun 11, 2019 09:57PM Beesie wrote:

Thanks very much, Footloose! Feel free to copy and paste.

Wondering if Kellyruss has seen the response and whether and when she'll be seeing her oncologist.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 31, 2019 02:19PM JCC4958 wrote:

kbram, curious....where did it occur? I had a BMX in July 2015. Right, IDC Grade III, 2cm er/pr/her2+, no nodes, but MRI prior to BMX showed suspicion in left side which had already had several benign lumps removed over years prior including cystocarcoma phyllodes...hence my decision to do the BMX. Had chemo and herceptin, still on exemethane.

Thanks in advance for your reply.


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Oct 31, 2019 04:48PM kbram wrote:

JCC4958, my recurrence was on the chest wall on the same side as the original breast cancer. Very, very small lump (2 or 3 mm). I had to show exactly where it was to all my drs (breast surgeon and oncologist) because it was so small. It can and does happen! The recurrence was five years ago now and I still go every six months to my oncologist!


Dx 10/18/2014, IDC, <1cm, Stage IA, Grade 3, 0/0 nodes, ER+/PR+, HER2-

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