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Any tests needed to detect any growths after Mastectomy??

nicolerod
nicolerod Member Posts: 2,877

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??

Comments

  • meow13
    meow13 Member Posts: 1,363

    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.

  • cbk
    cbk Member Posts: 323

    https://www.ncbi.nlm.nih.gov/m/pubmed/21337876/

    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.

  • 2002chickadee
    2002chickadee Member Posts: 79

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

  • lexica
    lexica Member Posts: 138

    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.

  • wallycat
    wallycat Member Posts: 1,185

    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.

  • alto
    alto Member Posts: 82

    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

  • kaitlin21
    kaitlin21 Member Posts: 1

    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? 

  • kber
    kber Member Posts: 243

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

  • spookiesmom
    spookiesmom Member Posts: 8,149

    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.

  • kbram
    kbram Member Posts: 63

    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!

    Kathy

  • Miranda-P
    Miranda-P Member Posts: 1

    Hello,

    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 😊

  • Kellyruss
    Kellyruss Member Posts: 4

    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?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    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.


  • footloose
    footloose Member Posts: 25

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

    Footloose

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    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.

  • JCC4958
    JCC4958 Member Posts: 3

    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.

    JC

  • kbram
    kbram Member Posts: 63

    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!

    Kathy

  • DJmamafly
    DJmamafly Member Posts: 1

    I had DCIS/IDC in one breast, then a single mastectomy without reconstruction. I am about to have my 6 month follow-up appointment. I feel very lucky so far in that my cancer could be removed surgically and my risk lowered with Tamoxifen, but I am gearing up for my appointment now and I want to be able to advocate well for myself. I want screening and lots of it! Mammograms on the remaining breast are a given, but I want ultrasounds on my chest wall and also an MRI to look at my liver to make sure there aren't any metastices! I am sure they would do this if there was a lump but can we still request scans if there are no palpable lumps? Can we request MRI's without having a specific complaint? Thanks!

  • minustwo
    minustwo Member Posts: 13,000

    DJ - since you had IDC, did you have chemo? Radiation? If you go to my profile you can enter your diagnosis & treatment so we can better understand. Have you had cancer antigen blood tests for example?

    You can certainly request imaging. I don't think diagnostic mammo & ULS are out of the question. Whether any insurance will pay for MRI or CT is another questions altogether.

  • DJmamafly, welcome!

    Unfortunately the screening you are hoping to have is not consistent with follow-up protocols so you might have problems getting a doctor to order these tests and getting insurance to approve them (if you are in the U.S.).

    image


    MinusTwo, we were answering at the same time

  • minustwo
    minustwo Member Posts: 13,000

    Beesie - So glad you saw this. You are so much more knowledgable than I am.

  • DATNY
    DATNY Member Posts: 53

    djmama my onc, who in general is pro-screening told my that best tests are pet or ct scans, but they require too much rad exposure. MRI gives lots of false positive. US for liver are relatively easy to get prescribed if you have any right pain, which many have as we age (gallblader issues).

    He monitors blood work and symptoms. He has very low threshold on symptoms and is careful to check them out if they persist.

  • Beekc
    Beekc Member Posts: 31

    Edited: Update from below...the conversation progressed recently. Surgeon satisfied with flat option request after I saw plastics and declined. Learned a lot! No MRI routinely. Yeah! I’m impressed with your self exams after the flat closure. I appreciate what I’ve read. Original comment: I'm trying to decide how to handle the BM "Flat" conversation with my surgeon. This thread is helpful. I have an additional concern. The actual sound of the MRI (not space) seems to really terrify me! It is so hard to remain still with arms and shoulders stretched. The MRI is so very loud, even with two ear coverings (and I've removed hearing aids!) I just read Beesie's post of the NCCN guidelines for IDC (which I have.) Maybe MRI's are not mandatory with one remaining breast? With a Bilateral Mastectomy would the MRI's be necessary? My Cancer Team is good. But the questions bump between the surgeon and the medical oncology doc and I can't figure out who to expect these answers from. The surgery is April 7th. The consult with the Reconstruction Surgeon will be 10 days prior. My hope of getting a full aesthetic closure if I choose to go for Aesthetic Flat is uncertain and it troubles me. I know there is no perfect answer here, but you may have some experiences with this. Thanks!