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zil
zil Member Posts: 4
edited June 2014 in Stage I Breast Cancer

In June of 2009 I had bilateral mastectomy for stage 1 breast cancer. I was node negative. I did not have chemo or radiation. I have see my oncologist 2 times. His office calls and  cancells appointment and reschedule 3 months later over and over. I don't know what kind of follow up I should be having. I started with Arimidex and am now on Femara. Advice

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  • badger
    badger Member Posts: 34,614
    edited March 2011

    Edited to redact a post with personal information.

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  • Makratz
    Makratz Member Posts: 12,678
    edited January 2010

    Hi,

    I had a lump in June of 08 with 36 rads.  I still see my onc every 3 months.   Why are they cancelling?  Any chance of finding a new onc?

    Best of luck to you.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited January 2010

    I would also suggest a new onc. Doesn't sound like this one cares much. I know that sounds harsh, but if they cancelled one appt and made it for soon after that would be one thing, but having this happen over and over sounds a little callous to me.

    Leah

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  • mississippiqueen
    mississippiqueen Member Posts: 29
    edited January 2010

    How does one find a reputable oncologist?  My surgeon and plastic surgeon are 4 hours away and they want me to see an oncologist closer to home intially because I suspect they think I'm a chemo candidate, or at least hormonal therapy.  But they don't know one near me.  Most I find seem to be "general" and I am not going that route again after a butchered excisional biopsy from a general surgeon.  I demand specialists now.

    My MX was 12/28 and my path report yesterday given by my breast surgeon was clear margins and no nodes.  But he says go see an oncologist before my first TE fill with plastic surgeon later this month.  I plan to ask for the Ocontype DX test but I'd really like to find a doctor that is very familiar with it.  But how?

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  • pj12
    pj12 Member Posts: 25,402
    edited January 2010

    MsQueen,

    I asked my surgeon to order the Oncotype and he did.  That way the results were back when I went to see the oncologist.  Saved time. Good luck.

    pam 

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  • mississippiqueen
    mississippiqueen Member Posts: 29
    edited January 2010

    Thanks pj...good idea...as soon as I can confirm ins coverage I may ask them to do that.  At least then I will have that and can conduct an informed interview with a doctor we find.

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  • Koolsmom
    Koolsmom Member Posts: 4
    edited January 2010

    Try checking with your insurance carrier for the names of oncologists.  Their information can be limited, but it will give you a place to start.  Also the Social Services dept.at the hospital you had your surgery at should have contact information. 

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  • carcharm
    carcharm Member Posts: 486
    edited January 2010

    I too am a stage 1 Her2+. I just finished chemo and my onc informed me there was no need for her to see me other than 1 time after I've had my herceptin infusion since I had every side effect possible with chemo. She was clear it was just to make sure I had no side effects from the herceptin. I am so upset. I don't know if this is standard treatment for Blue Cross/BS insurance carriers-and being stage I. She said to call her if I have pain. Sorry but I think I need alkaline phosphatase, calcium, liver function tests, and cbc's to monitor my anemia and wbc counts. I walked out of her office with my platelets at 80K and am still having bloody noses and bruising easily. Why wouldn't she want to at least follow that? It is so frustrating because I've already switched oncs once due to the first one being a bit.. My first onc said I had a 30% chance of reoccurance with chemo so wtf? Anyone in the Cleveland Ohio area with an onc following stage I please PM me.

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  • roseg
    roseg Member Posts: 3,133
    edited January 2010

    Carcharm - Why not see your Internist for your other issues? They're more than qualified to deal with anemia and counts. Oftentimes Oncologists are really busy with people with active disease. Once you finish up your active treatment you'll usually get better care from an Internist.

    There really isn't anything they can do about platelets until you get down to less than 20. 

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2010

    You better find a new doctor, the sooner the better. He should be seeing you every three months for the first year, twice a year for the next four years after that, and then once a year forever and ever (amen).

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  • PT63
    PT63 Member Posts: 329
    edited January 2010

    zil,

    I agree with Ruthbru.  I saw my oncologist every 3 months for the 1st year and every 6 months after that.  My treatment and yours are similar.  Sometimes I think it is a little crazy to go there because there is really nothing to look at.  But they insist that I come every 6 months for a face to face visit.

    msqueen

    I found my current oncologist through word of mouth.  I had a very bad experience with my initial visit to a different oncologist even though the practice came highly recommended by my surgeon - he just wasn't for me.  And truthfully you get to see your oncologist for a very very long time so you really need to at least trust them and feel like they have your best interests in mind.  After I hated the first practice I asked around to friends or friends of friends who had unfortunately had the same diagnosis.  The local hospital also has a breast cancer support group which would have been a good resource had I not found an oncologist I liked through people in my neighborhood.

    carcharm

    My oncologist asks me to have all of my blood work done through my internists office and then have it faxed to her.  She recommended the blood work to be done every year since I am on Tamox. - more often if I have symptoms.  I also had a bone density study done through my internist.  But as I said before I still get checked by the oncologist every 6 months and I have BC/BS for insurance.

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