High Risk Breast Center

Options
Graceface
Graceface Member Posts: 10
edited June 2014 in High Risk for Breast Cancer

I have an appointment at a High Risk Breast Center in a week. I did have an excisional biopsy (due to microcalcifications, dense breasts) this past summer. Results were negative for cancer, but showed ADH and other negative changes. For this upcoming appointment, I had to complete a really extensive on-line assessment questionnaire, took about 2.5 hours.  I have no breast cancer in my family.  They said my appointment would be about 3 hours. I was curious, if anyone else has visited a High Risk Breast Center and what took place? 

· Share on FacebookShare on Twitter

Comments

  • leaf
    leaf Member Posts: 8,188
    edited September 2008

    I have LCIS and I went to a high risk breast center (by an NCI-certified place.)  I was first reviewed by a nurse practioner, then by a breast surgeon.  

    They mainly went over my Xrays and sonograms  to make sure nothing was missed.   (I had to bring all the ORIGINAL copies.)  That wasn't my concern.

    I wanted to know more about my prognosis and risk. I also had my slides reread, which didn't happen before my appointment. The slide reread gave the same results as my original reading.

    I was pretty disappointed with my visit.  They can't even find my records to send to my onc!!

    I know some LCIS women have PMed me and have said they are quite pleased with their high risk clinic, so high risk clinics do definitely vary.

    They said my chances of dying from breast cancer were a lot lower than my risk from dying from, say, heart disease, which is the biggest killer in general in the US.

    ( 2006 data, Diseases of the heart were ~ 210/100,000 and malignant neoplasms were  ~187/100,000 and stroke was ~45/100,000.)

    http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_16.pdf 

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    Grace---It is not an absolute necessity to go to a "high risk center".  I am very high risk due to the combination of LCIS and family history, (at least double your risk, probably much more) and  I am very closely monitored by my regular oncologist.  I have digital mammos alternating with MRIs every 6 months, US as needed, frequent breast exams, and take tamoxifen as a preventative. (will finish up my 5 years in about 2 weeks). I see my oncologist every 6 months on a alternating schedule, so I am "seen" by some method actually every 3 months. Gettting into a high risk center is a very good thing for you, but I just don't want any newly diagnosed with high risk conditions to think they are not getting quality care by their "regular" medical team.

     I would assume they will be going over your medical and family history, any mammos or other imaging studies you've had done, any biopsies, and will discuss possible preventative measures with you , like tamoxifen.  Do you have an appt with an oncologist yet? Glad to hear you will be followed closely.

    Anne

    · Share on FacebookShare on Twitter
  • cmb35
    cmb35 Member Posts: 1,106
    edited September 2008

    Hi Grace - I was seen at the high risk clinic, but have continued my relationship with my original oncologist. My case is a little strange, I did not know about the quite extensive family history of breast cancer when I was originally dx in 2005 at age 41. I found out about the family history after the fact, hence the appt with the high risk clinic. At that appt, they determined I was a candidate for the genetic testing, which turned out to be positive. I met with the high risk onc to discuss the results and my options, but as I said, I decided to continue my relationship with my existing onc.

    Hope that helps!

    · Share on FacebookShare on Twitter
  • Graceface
    Graceface Member Posts: 10
    edited September 2008

    Thanks all for the great insight. My appointment is with a medical oncologist and a NP.  The breast center is actually part of the system where I have my mammos, had stereo,and excisional biopsy, so all my stuff is available on their computers.  I guess that makes sense that they would review my results with me and any preventive measures.  Thanks again!

    · Share on FacebookShare on Twitter
  • aquariusgi
    aquariusgi Member Posts: 26
    edited October 2008

    Hi,

    Interested in knowing about your experience with the High Risk Center appointment. I'm scheduled for next month (it's also my second opinion), I couldn't get one any sooner. I've been diagnosed with LCIS and have a family history of bc. I'm 30 and am interested in knowing if things might be done differently when considering age. 

    · Share on FacebookShare on Twitter
  • Graceface
    Graceface Member Posts: 10
    edited October 2008

    Hi:

    I met with a NP and an Oncologist.  The NP did a breast exam and did a risk calculation.  The Oncologist discussed Tamoxifen.  He said 1/3 of women (at his institution) decline Tamoxifen treatment.  I'm pre-menopause and he explained how Tamoxifen can throw you into early menopause.  If your post-menopause then they treat you with raloxifene. He discussed all the side effects and risk if I didn't take, did different risk calculations.  I'm scheduled for 6 month clinical breast exams and yearly mammograms.  I left there with, "I'd think about it."  He was a nice, professional physician, but before I left, he said, "The choice is yours.  If over the next year or so if you are dx with cancer, how comfortable are you going to be looking at yourself in the mirror and saying "I made the right choice by not taking Tamoxifen."  He said it in a threatening tone.   

    Good Luck To You!

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Grace---I'm so sorry to hear that you felt threatened by your doctor's words.. A lot of docs could use some extra training in bedside manner. He was probably just trying to show you all the possible scenarios of your decision and was  not the type to "sugar coat" it at all. Personally, I like a doctor who doesn't hold back from telling me everything I need to know to make a decision, but I still value compassion very highly!

    I was premenopausal when I was diagnosed  5 years ago at age 46.   My combined lifetime risk (from LCIS and family history)  was very high (nearly 37%--it's most likely much higher, they just don't know for sure with LCIS), so I wanted to take tamoxifen to try and be proactive in decreasing my risk of invasive bc in my future. I just took my last dose of tamox this am--my most recent scans (mammo/US/MRI) have been clear, so it appears tamoxifen is working well for me. I think it boils down to how much risk we can each live with, and that is such a personal decision, one which no one else can make for you.  The thing with ADH is it is not cancerous, so you can take your time making a decision--do your research, don't let anyone rush you, and most of all, make your decisions out of knowledge, not out of fear.

    Anne

    · Share on FacebookShare on Twitter
  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited October 2008

    Grace face, don't let that dr make you feel guilty about refusing to take the tamox. I refused tamox after my first dx of ADH (pre-cancer), I was 44 and didn't want the menopausal symptoms that early. After my 2nd dx of ADH (in the other breast) 18 months later my dr insisted on taking the tamox and suggested I consider bilat mast as a prevention. 6 months after I started the tamox I was dx with DCIS. Who knows if I started taking it at the first dx I would have not been dx with cancer. My doc never said anything to me that if I had started taking it earlier I would not have been dx with the DCIS.

    Sheila

    · Share on FacebookShare on Twitter

Categories