Completely Underwhelmed

MelissaDallas
MelissaDallas Member Posts: 7,268
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

My excisional biopsy was 4/25.  Finally met with the medical oncologist today.  Total waste of time.  Brand new doc (med license in January and med school in Grenada) supervised by ancient doc who appears to have specialized in internal medicine.  They won't let me take Evista.  I had a pulmonary embolism last year when I was very sick from 20 pound ovarian tumor and ascites.  My (Harvard, Vanderbilt, West Point) breast surgeon felt that my taking Evista would not be a huge PE risk, because as she saw it, getting a PE for a REASON is totally different from just spontaneously developing one.  Then they just virtually told me to not worry my pretty little head about LCIS and that my risk was low and that probably an annual mammo would be fine for follow up.  The little twerp actually told me to "go out and live my life and not worry about it".  Thank God they are referring me back to the breast center to determine what my follow up is going to be.  I'll bet if they had a 25% risk that they'd have to get their penis cut off and do radiation and chemo and still maybe have a recurrence they wouldn't think it was so inconsequential.

· Share on FacebookShare on Twitter

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Melissa-----sorry to hear of your experience; it's so frustrating when our diagnosis of LCIS is minimized, I have encountered it myself over the years. From everything I've read, if you have had a DVT or PE (for any reason) then tamoxifen or evista are contraindicated.  With the 25% risk, you should qualify for a yearly MRI, but better check first with your ins. co.  Do you have any family history of bc? My risk is further elevated by my mom's ILC; my lifetime risk was estimated at 36.6% (and 5-year risk at 4.8%), but my onc admitted it was just a guesstimate and could be higher. Even with that combined level of risk, it still took me nearly 3 years to get him to let me go for MRIs (Said he didn't want to "open another can of worms"---he was leery due to false positives, creating unecessary biopsies and anxiety. I told him I'd rather take that risk then miss an invasive cancer. Fortunately, I haven't needed any further biopsies or lumpectomies in nearly 9 years and am doing well). My oncologist was the one who determined my follow-up schedule.

    Anne 

    · Share on FacebookShare on Twitter
  • leaf
    leaf Member Posts: 8,188
    edited May 2012

    I sure hate it when doctors, or any medical personnell talk down to me.  Its important for them to acknowledge the fear you feel!  'Pretty little head' - I'd be furious.  My BS talked that way to me too, and if I have a choice, I'm not seeing her again.   Its totally important that your doc be the right fit for you.

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2012

    Not a lot of other risk factors in immediate family.  I'm heavy & smoked most of my life.  Genetics counselor thinks probably 25% or even a little more.  I noticed that on my MRI radiology report that it said this patient would benefit from annual MRI screening.

    Still, I didn't get a PE from heart/clotting problems.  I got it because I had the equivalent of the biggest untrimmed packer style beef brisket you could find and 3 & 1/2 two liter cokes shoved into my belly.  Was making it kind of hard for the blood to return from my legs to my heart since it was putting tremendous pressure on all my vessels.  I even have broken capillaries all over my chest.

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2012

    Leaf, I'm going through a clinic for uninsured/low income folks.  I don't have a choice on who I see.  Everybody else has been great with really good credentials.  I'm released from medical oncology now.  They feel they don't need to see me anymore.  Back to the specialty breast clinic.  

    · Share on FacebookShare on Twitter
  • loriio
    loriio Member Posts: 247
    edited May 2012

    Hi Melissa. Come on over to Ft. Worth. I was diagnosed with LCIS in March. I have an amazing BS and MO. Both truly listen.



    It's amazing to me when any professional is patronizing. Have you met with a nurse navigator at the breast center at the hospital? She might have recommendations on other doctors.

    · Share on FacebookShare on Twitter
  • msippiqueen
    msippiqueen Member Posts: 191
    edited June 2012

    Thanks for posting MelissaDallas,



    I have been a nurse in two TX teaching hospitals and understand your experience both professionally and personally. By far, most of the attending and medical students /interns/residents are outstanding. I'm guessing you're at Southwestern which has a sterling reputation. As in everything there are a few...



    You can ask for someone else to take your case, if you are concerned or not satisfied. This should at least open a dialogue. Let your nurse know how you feel, she may be able to help, she surely will be sympathetic. You may call patient advocate as needed, the nurse or operator can help with this.



    Conflicting opinions abound, this can be a real eye opener and is unsettling at times. The LCIS experience is rife with this. If you can establish a trusting relationship with someone in charge of your care, that should be helpful.







    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2012

    Yes, in general I have felt like I have gotten superb care.  You just have a few blips every once in a while.  I'll talk to my breast surgeon on my next appointment and then I'll know more about how they plan to follow me.

    Sorry to not respond sooner guys.  My computer died a few weeks ago and I have only had sporadic use of one since.

    · Share on FacebookShare on Twitter

Categories