NO MORE TESTING FOR CANCER

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neeliecar
neeliecar Member Posts: 73
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

My surgeons have told me there is no test to see if there is any cancer elsewhere in my body.  Since I had a total mastectomy and chemo, they said an MRI is out cause there is nothing to check.  They all told me that they will only check me through clinical tests, which is feeling for a lump.  I didn't have a lump the first time, it was a shadow on the Mammogram and they found out it was only cancerous tissue, so there was nothing to feel.  What if that happens again?  I am scared if it comes back there will be no way of knowing.  Has anyone else had this same response from their doctors regarding their three month checks.  No one has done anything in the 10 months since my surgery other than physically checking me.  Please let me know what your doctors are doing (especially for those of you that have had a double mastectomy with reconstruction).  Thanks for your responses. Eileen Carnein

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  • pip57
    pip57 Member Posts: 12,401
    edited June 2008

    Yes, I was told the same thing.  I have had bilat mast with no recon so it is easier to see any lumps.  I actually did have one appear and it was removed quickly.  Thankfully, it was benign. 

    When I was first told that I would not be getting regular scans I was scared and horrified. My mom is involved in a clinical trial and even after 14 years is scanned annually.  However, I must say that going to my onc is a lot easier when I don't have to worry about hearing results from the latest test.  

    I am told that these tests will be done if I develop any concerning symptoms.  Apparently, not much would show up on the tests until the tumours were large enough to cause some symptom. And tx would not be any different regardless of when it is discovered.  

    I have decided that if I have any concerns that I will lie if I have to in order to get the scans I want!!

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  • LUVmy2girlZ
    LUVmy2girlZ Member Posts: 2,394
    edited June 2008

    Eileen ~

    That is a concern...I have heard about that too.  What baffles me is if you have reconstruction you still have an MRI every year for silicone... but if you don't have reconstruction then you are on your own so to speak. 

    I have a mastectomy and they are planning on an MRI one year after my completion of rads...didn't you at least get an MRI set up after your surgery ?

    One thing to ease your mind, the Rad. Onc. told me w/ bilateral..is the chances of getting a tumor is very slim and "if" something should show up it would most likely look like sore on top of your breast area.

    I would at least still get monitored by both your OBGYN/PCP for check ups.

    I am interested in every one elses follow up care ....

    Much LUV

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  • neeliecar
    neeliecar Member Posts: 73
    edited June 2008

    Dear Luv, they told me that I don't need any MRI's cause there is nothing to MRI.  I guess every doctor is different.  I don't believe that they will be doing anything to look at my implants.  Seeing my plastic surgeon this week. I will ask him about that.  Eileen

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  • Lolita
    Lolita Member Posts: 231
    edited June 2008

    I had a bilateral in November after IDC and LCIS.  Other than physical examination, I am also not receiving any follow up except uterine ultra sounds since I'm on tamoxifen.  They told me that the outcome is no different if they find something early on an MRI or scan than if they wait for symptoms to emerge, and they don't want to use chemo in the event of a distant recurrence until they have to. That's what they told me anyway.  Good luck to you.

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  • LUVmy2girlZ
    LUVmy2girlZ Member Posts: 2,394
    edited June 2008

    Eileen ~

     I currently have an expander after my mx...and I am still scheduled for an MRI one year from completion of my rads. I agree ...I don't know "what" they are going to exam...not much there...so we will see.  My next MRI is this Oct.

     Thats a good idea...perhaps your PS can shed some light.

     Much LUV

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  • nash
    nash Member Posts: 2,600
    edited June 2008

    Yep, the current protocol is to not do routine scans for mets in the absence of symptoms. I don't agree with that approach, but that's just how it is. Local recurrence is a different matter--I had a lumpectomy, so I get semiannual mammos and MRI's.

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