Follow up tests for Stage 1?

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Baxter
Baxter Member Posts: 234
edited June 2014 in Stage I Breast Cancer

I am two years out from having my second mastectomy.First cancer was DCIS stage 0 . Then 1 year later an invasive stage 1 grade 1.  1 cm tumor nothing in lymph nodes.

The 6 month follow ups with my oncologist seem useless, She asks if I have any new sympyoms, listens  yo my heart and lungs and feels my liver...that's about it. Since I don't have breasts, there is nothing to examine. I have asked about blood work or scans etc. and she says there is no testing out there that would be beneficial to determine if the cancer has gone anywhere else.  I would need to exibit symptoms.

What does your oncologist do for your follow ups?

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  • VJSL8
    VJSL8 Member Posts: 652
    edited December 2011
    • tumor marker tests (blood test). Mine are low (9 and 10), so I don't do any scans. Only it it starts going up.
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  • kal21
    kal21 Member Posts: 77
    edited December 2011

     This is were the problem is... stage one they do nothing till symptons show.. then way to late..

    I was losing weight.. so I said I was concerned..That was a good reason for dr and ins.. so they did do chest xray and a marker test.. and CBC..marker test was more to do a comparison later..

    they usually don't because to many false positive..

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  • Kaara
    Kaara Member Posts: 3,647
    edited December 2011

    One thing you can do is get a thermogaphy.  It is a device that films the areas of concern and lights up in red if small blood vessels, like the ones cancer needs to grow, are present.  If something like this showed up, it would be cause for getting an MRI, but it is less expensive initially than an MRI, and it shows smaller areas of suspicion that a Mammogram or Ultrasound can't see. 

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  • lisa-e
    lisa-e Member Posts: 819
    edited December 2011

    Baxter, I had a bmx, no reconstruction.  My oncologist always examines my chest, lymph nodes,and my scars, in addition a brief physical exam -  heart, lungs and liver.    She says a local recurrence has a distinct feel.  To me my chest just feels lumpy and bumpy.  so I am glad she examines it.  I was told that even if a scan were to show a recurrence, discovering  it early in the absence of symptoms,  that wouldn't give me a survival advantage.

     I think one of the major reasons I see my oncologist is that it allows us to maintain a relationship and for her to monitor my compliance with ant-hormonlal therapy.  I have had a lot of side effects with all of the anti-hormonals I have taken and without some tweaking and encouragement, I would stop taking them.

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  • Pessa
    Pessa Member Posts: 519
    edited December 2011

    I am a little more than one year from my second MX and 1 1/2 years from end of chemo.  My onc does the sams as lisa-e......feels the scars, nodes, liver.  Asks questions about possible symptoms.  She also gets tumor markes.  I go every 4 months at this point.

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  • Baxter
    Baxter Member Posts: 234
    edited December 2011

    Pessa, your diagnosis is similar to mine. Can I ask your stage and grade? My oncologist said I wasn't  a good candidate for a tumor marker test. I'm sure she explained why, but I can't remember what she said. She also said that they don't do the oncotype test unless they are looking to see if chemotherapy would be of benefit, which she said would not have been for me. 

    I declined to take Tamoxofen. She said she was okay with that. I knew that taking a pill everyday would just remind me I had cancer and I felt the other risks with taking it weren't worth the few extra points it gave me in my 10 survival equation. .Personal choice on that.

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  • Susie123
    Susie123 Member Posts: 804
    edited December 2011

    I'm stage 1, grade 1, bmx with implant reconstruction, diagnosed on 12/22/2009 and still have to see the onco every 4 months. The routine for an onco visit is one week you have blood work, the next week you see the onco so he has the results of the blood work when he sees you. I know he does tumor markers because he has told me they are about the lowest he has seen. I know the blood test also includes liver markers because I had to have a CT because they were elevated and the liver is one place mets could go to (the CT was ok). I recently saw an article naming the cancer center I go to as in the "top 10 private cancer centers in the country". Of course, that doesn't mean I can't recur, I had a friend diagnosed the same time I was and treated in the same place who recently died. My oncotype dx said no chemo so I went with that. She did chemo and still died. We always wonder if we're making the right decisions about our treatment but in the end with this disease I'm thinking more and more that it's a crap shoot since my friend was a nurse and would have definitely made informed decisions about her treatment. Sorry if I'm a bit dark, I'm coming up on my 2 year anniversary and she just passed last week. 

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  • wenweb
    wenweb Member Posts: 1,107
    edited December 2011

    I think it's normal to feel that there should be follow-up that "looks" for a recurrence.  I was very surprised when I found out that regular blood tests would not even be ordered.  However, my CA 125 # was below what is considered normal when I was diagnosed...

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  • Pessa
    Pessa Member Posts: 519
    edited December 2011

    BAXTER:  I was stage 1 grade 1.  My onc just goes ahead and orders the tumor markers.  Didn't ask her why.  I guess psychologically it is comforting to know that someone is doing something to catch an early recurrance, if it's going to happen.  I did the Oncotype test and was a 28 (gray area) but decided on chemo.  I am also on an AI(anastrazole).  My bilateral mx reminds me every day that I was a cancer patient, so the extra pill doesn't make it worse from that point of view.  It does, however, give me joint pains, which I am willing to live with at this point.

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  • Janeybw
    Janeybw Member Posts: 199
    edited December 2011

    My onc told me he will be seeing me every 6-8 weeks to make sure I continue on the tamox.  He gets a CBC, liver function, CBC the week before.  The nice part for me has been that my weight has been steady over the past 5 months I have been on the tamox.  I was very worried about gaining weight and decided that my life was worth more than my vanity.  I saw a quote on here a while ago that rings true: Surviving early stage cancer is like getting away from the mob.  You're alive but you are always looking over your shoulder.  

    I'm very sorry about your friend, Susie.  I think it can be a crap shoot as well. 

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  • Baxter
    Baxter Member Posts: 234
    edited December 2011

    I met with my oncologist this week for my 6 month and asked about followup..... Why they never did tumor markers or oncotyping on me. She said that the usually protocol for tumor markers was to monitor the cancer that has spread, which mine hadn't. And the oncotype is used to determine if chemo would be of benefit. With the characteristics of my cancer ..being a grade 1 slow growing.... the recommended treatment was Tamoxifen.

     I just had my 2 year anniversary and she said the first 2 years are when they are really watching, for symptoms so this was good news for me. Then the  milestone is the  5 year mark.

    I noticed that several of you have the same cancer characteristics that I have, and yet your treatments and follow up are different, and some are more extensive than mine.

    It's kind of amazing how all doctors do things differently. I get the impression that there still is no uniform protocol on how to test for recurrance..I think once you have cancer you will always be looking over your shoulder. I know we can't worry about it, But you are right Susie...none of us really knows with this disease, we just do the best we can.

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  • kal21
    kal21 Member Posts: 77
    edited December 2011

     Just saw these post.. I am amazed how different the treatment is. For Pessa.. stage 1 grade one but onco high.. don't get that..Doing chemo with stage and grade 1 is low but than the onco high..

    My MO does not do anthing but liver test but my RO did recheck with xray and CBC and a marker test.. MO does not think I need to see RO anymore either.

    Pr- though is something that will always bother me that I did not do chemo..

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