High risk but no scans...etc

kathleen1966
kathleen1966 Member Posts: 793
edited June 2014 in High Risk of Recurrence or Second Breast Cancer

I was told I have a 30% chance of having a recurrence of my breast cancer.  I think this is high. And being that I had a mastectomy, I take this to mean a distant recurrence. I am getting one mammogram a year (despite having dense breasts) and I meet with my oncologist every three months.  During these visits I get blood work.  Is everyone else getting this type of follow up?  Should I be getting an MRI of my remaining breast every six months?  Or an ultrasound of the other missing breast area?  I am worried about lymph nodes that will be missed, that will then lead to distant cancer if they ARE missed. I did have the axillary tail removed after having the positive nodes but there is no way they can get all the lymph nodes. I have no idea if I am getting good follow up here. I am pre-menopausal (and yes went back to pre-menopausal after chemo, even though I am almost 46).  Thanks.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited February 2012

    Hey Kathleen, I have a psychic look at my future every three months or so....just kidding...bumping my own thread so I can get a quicker response in this lonely little corner in the high risk area....

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  • jenn333
    jenn333 Member Posts: 178
    edited February 2012

    I am on a six month schedule - in Feb I have mammogram and ultrasound of my remaining breast and in August I have an MRI and ultrasound. This is the plan indefinitely.

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  • greenacres
    greenacres Member Posts: 144
    edited March 2012

    I am on exactly the same schedule as you but I worry about the same exact things.  I want more scans, but I also heard they cause undue anxiety at times as well.   I totally hear you though!  I also went back to premenopausal after I went through "chemopause" :) 

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  • Kicks
    Kicks Member Posts: 4,131
    edited May 2012

    I get a mammo once a yr on remaining breast - have never had a breast MRI.



    Your odds don't sound that bad - I have a 25% - 40% probability of not making it to 5 yrs. This Aug will be 3 yrs so doing good. IBC isn't 'nice' to us.



    I was 44 when I went through natural menopause - 18 yrs before IBC DX.

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  • dogeyed
    dogeyed Member Posts: 884
    edited May 2012

    KATHLEEN, I reckon you've moved on, but just for the record I am getting the same deal as you from my breast cancer clinic, and I protested.  So, I'll get a CT scan at last this fall.  I read somewhere that someone (insurance, trials?) decided scans don't improve our outlook.  And I remember aksing my doc how in the world would he know if the cancers I have spread, and he said, well, they'd just wait and see what happens.  That's when I demanded a CT.  I am high-risk and while I think positive and feel I am okay, the chances are just so not in my favor that I could not believe they wouldn't do a simple CT once in a dang while.  GG

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  • financegirl
    financegirl Member Posts: 114
    edited June 2012

    dogeyed:  - my dx was in April 2011, very tiny but very aggressive tumor.  Cancer stayed local but I had a LOT of positive nodes which sent me straight to stage IIIc. 

    I asked the onc and he said the standard is pretty much not running blood marker tests and not  having scans with BC.  Said both have a lot of false results.  In addition, he said until scans don't emit some sort of radiation, there is always that problem of using them frequently.  

    Three months after treatment I had a mammo/ultrasound on the remaining breast and basically 4 clinical exams (by radiation onc when released from the facility, GYN and one by the oncological breast surgeon when treatment over and another recently because he will be removing my port in 2 weeks.  I had an US of the ovaries, pap smear, and a colonoscopy (last two happened to be overdue and were delayed by doctors till after treatment was finished).  The onc said that right now, breast, area where breast removed, ovaries, colon, etc show no evidence of disease so we move on from there.  I am now on Arimidex and it messes with bloodwork (labs) so I have regular bloodwork due to that.  The onc said that it will reflect any changes in kidney/liver function irregularities.  SO, yeah, I will be having a mammo/US on breast every 6 months, but other than that, no scans/OR blood marker tests unless there is a specific problem.

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  • Helen-Ann
    Helen-Ann Member Posts: 13
    edited June 2012

    I do myself my blood markers and liver enzymes at https://www.personalabs.com/

    Careful history taking, physical examination, and regular mammography are recommended for appropriate detection of breast cancer recurrence.


    The use of CBCs, chemistry panels, bone scans, chest radiographs, liver ultrasounds, computed tomography scans, PET scanning, MRI or tumor markers (CEA, CA 15-3, and CA 27.29) is not recommended for routine breast cancer follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination. 

    http://jco.ascopubs.org/content/18/11/2345.full?ijkey=991d73a1c96d9ea96ca975b0e193bc95e354c9b6&keytype2=tf_ipsecsha#T1

    http://jco.ascopubs.org/content/24/31/5091.abstract 

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