How are you monitored post mastectomy?

Mavericksmom
Mavericksmom Member Posts: 635
edited January 2020 in ILC (Invasive Lobular Carcinoma)

I recently had a mammogram on my remaining breast and it made me wonder how the small amount of remaining breast tissue in my reconstructed breast will be monitored?

Of course I will have regular doctor visits and they check my reconstructed breast, but I don’t even know what symptoms someone with chest wall breast cancer, or recurrence would have. I do know the chance of recurrence at the site of the mastectomy is very small. My doctors never told me to doanything other than to see them every three months and have yearly mammograms on remaining breast. Just curious.

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  • Dani444
    Dani444 Member Posts: 522
    edited November 2019

    My BS is having me alternate with MRI and mammogram every 6 months. I had to have a biopsy on my remaining breast at my 1st mammo post treatment, so I don’t know if that factored into that decision. Maybe you could ask for MRI if you are worried.

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  • OnTarget
    OnTarget Member Posts: 447
    edited November 2019

    No monitoring other than doctor's visits. I think they'll be every 6 mos or every year.

    Pretty worrisome for me!!

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  • karen1956
    karen1956 Member Posts: 6,503
    edited November 2019

    I only see medical oncologist (every 6 months) - he takes a detailed history every visit, does breast exam and labs.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2019

    Ultrasound, and a breast MRI every few years. My PS actually orders this, so insurance will cover it (he uses a code for checking implant integrity). Other than that, six month check ups with CBC work and a meeting with my MO, always scary (one coming up this Monday).

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited November 2019

    Good luck with your appointment, Claireinaz!

    I have an appointment with the oncology NP in three months. I am going to ask if I can just do all my follow up visits with her for consistency. I will ask her about ultrasounds/MRI, but they cannot use the same coding your doctor usesbecause I don't have implants, but maybe there is something they can use. I know I would feel better at least having an ultrasound every few years

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  • alexandra1967
    alexandra1967 Member Posts: 1
    edited December 2019

    Itoo just have doctor visits only . It really worries me because my friend in Italy , with the same type of cancer gets a lot more tests and checkups twice a year !

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  • jessie123
    jessie123 Member Posts: 532
    edited December 2019

    It seems like since you have the remaining breast you would at least have an MRI occasionally. I had lumpectomy and have alternating mammograms and MRI's every 6 months. Since I also had LCIS I guess the mammogram is warranted since I'm at increased risk for IDC. However, I will never trust a mammogram for ILC

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  • wallycat
    wallycat Member Posts: 3,227
    edited December 2019

    No boobs so no scans. Onco visit annually and she does a quick physical and manual touch/exam of the scars and surrounding area/arm pits.

    Indeed, after seeing DHs scans, I wonder what I have (or don't have) lurking.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2019

    I hope everyone is doing okay. My new MO said (he didn't have to, but I was polite) "you don't need mammos anymore" (which I already knew). He did support an MRI every two years, and my PS orders them because he can write up the orders for insurance coverage (to check implant integrity). My MO was more concerned about getting too much calcium and future heart disease for patients who've had ACT, since there seems to be a correlation. I guess that was good since he didn't seem to be concerned at all about a future recurrence ;)

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  • Houston2016
    Houston2016 Member Posts: 317
    edited January 2020

    Hello,

    I would like to ask about chest wall recurrence. I don't have reconstruction, had a UMX back in 11/2016, with the TE put in at the time but later the TE was removed 04/1/2019. After the surgery the chest surface was initially smooth, but few months ago around October or November I started to feel some kind of sensation or contractions once in awhile on the MX side near the arm pit and above the scar line. Then I noticed there are slightly lumps on the chest but hard to touch. Why are these changes in appearance. Does anyone have the same experience? Can this be recurrence?

    Thank you all.


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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2020

    Houston, the lumps are probably scar tissue but they could be a recurrence. Definitely get it checked out.

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  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited January 2020

    Houston: Last fall I noticed a raised area (not quite an 1 inch long) along my scar line, right on a rib. Both my MO and BS say it's scar tissue. I also get occasional little stabbing pains at the end of my scar, which is near my arm pit. Both drs. say that that is normal.

    My MO is recommending that I get an breast MRI in March. She said that MRIs is a new recommendation for women with dense breast -- we'll see if my insurance approves it. I think she wants me to alternate between mammograms/USs & MRIs. (The only breast MRI I have had was over 3 years ago, right after my dx.) I hope an MRI can tell the difference between scar tissue and BC!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2020

    Re recurrence: I thought I felt something in my scar last fall; felt it a few times, then couldn't find it. I went to my PS (he couldn't find it), but he's a good doc and he ordered an US anyway to be sure, and it turned out to be nothing. The radiologist did a pretty thorough job examining it, so my PS and I felt comfortable. In a bit longer (probably next year or maybe even this?) he will order an MRI to check implant integrity, and that would reveal any new trouble. My insurance company won't pay for MRIs except when an US shows trouble, or when implants need to be checked, and that is like every three years I think. My MO could also order MRI, and if my PS wouldn't my MO said he would anyway.

    Claire in AZ

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