DCIS

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gerty80918
gerty80918 Member Posts: 5
Hi:  I have a question has anyone gotten more than 1 opinion for this cancer.  I have done alot of reading and it has been misdiagnoised 17 to 20% of the time.  I'm having a hard time finding a second lab to have this retested.  I have gone to a nutritionist to get my body in an alkline state.  Hope someone can help.  Thank you and Blessings to all.  KarenFoot in mouth

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited August 2010

    Hi Gerty, I dont know of any one off hand that has, but im sure there are woman who have, maybe some will come along that has and give you some advice on that,

    What have you had done so far,have you had surgery, node biopsy? Im just thinking if you have only had a breast biopsy then you could go to a new dr and start all over, i guess what im saying is not let them know what you have already been told and go from there, i know that there are false positives but havnt read it being that high- i will do some research on that my self, just another bit of info, we are all in denial when we are first DX with BC it is a normal thing to feel, but if you feel like you need to do this i say go for it, good luck, and i for your sake hope it turns out bengin

    warm hugs,

    Debbie

  • redsox
    redsox Member Posts: 523
    edited August 2010

    I favor getting a second opinion for almost everyone if only for you to be comfortable with the diagnosis and treatment plan.  The easiest route is to find the nearest NCI designated Comprehensive Cancer Center (CCC) or Cancer Center and call to make an appointment for a second opinion.  That will usually start with the breast surgeon and include pathology review, as well as radiation and medical oncologists.  You can also get a second opinion for just one specialty if you want. I found it useful even though it did not change my diagnosis.  It gave me an additional independent review of the pathology and helped me explore the treatment options and get answers to my initial questions and then subsequent questions (which came in waves as I continued to read). 

    Here is the list of NCI centers:

    http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

  • sweatyspice
    sweatyspice Member Posts: 922
    edited August 2010

    I had my slides read by four pathology labs (three of which were NCI designated cancer centers), they all agreed on the diagnosis.

    Getting another opinion on your slides should be relatively easy, the major cancer centers do second opinions all the time.  Have you contacted one of them?

    http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html 

    You might have to schedule a second opinion with one of the breast surgeons at the cancer center in order to get that pathology dep't to review your slides, but I'm not certain about that.  Normally pathologists don't have patient contact, so that's one reason why they might want you to have an app't with a surgeon - to discuss the pathologist's report.  I had a gazillion second opinions, you really shouldn't have trouble with that - unless it's an insurance issue.  I had good insurance so I don't have experience trying to navigate that problem.

    If that fails, you could schedule a consultation with pathologist Dr. Michael Lagios in California.  He runs The Breast Cancer Consultation Service in Tiburon, CA.  You send him your slides and he'll send a written report and do a phone consult.  It's expensive, though.  But if you have to pay out of pocket anyway, it's probably about the same.  And worth it for the peace of mind.

    Edited to add:  I was still typing while Redsox was posting.  I agree with her. 

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited August 2010

    Gerty, i think i misunderstood your question, i thought you were meaning having more surgery to have it retested, but it seems you just need second opinions on the lab already done?? If thats the case, yes almost every one has second, third and more opinions, we always tell every one that because every onco is different as well as tx plans too, get all of your reports from the hospital and dr. office's every thing you have had done and get another dr. that you trust and feel comfortable with, you are your own best advocate. ((((((((((((hugs))))))))))

  • gerty80918
    gerty80918 Member Posts: 5
    edited August 2010

    DEAR LADIES:  THANK U ALL SO MUCH FOR ALL THE GREAT INFO.    MY GUT FEELING IS TO FIND A SECOND OPINION.  DECIDED  A LONG TIME AGO THE CHEMO AND RAD IS NOT SOMETHING I WOULD DO.  SURGERY IS AN OPTION BUT NEED TO DO ALL THE SEARCHING FIRST.  THANKS AGAIN AND BLESSINGS AND HUGS TO ALL.   KAREN

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited August 2010

    I had mine retested by Vanderbilt and I did get a slightly different read from them.. There are many other institutions who specialize in bc or even more importantly DCIS!  To have the tissues read all you need to do is request your breast surgeon to order a retesting /second opinion from either an institute you want or one your bs can recommend.  It's done all the time and a very easy process.  Your doc shouldn't give you a difficult time and I hope you do get a second opinion - it is important because so much is NOT know about DCIS.  good luck..  Deirdre

    Afterthought:  FYI I didn't have to set up a consultation with a doc at the hospital (Vanderbilt) it's one of the things most hospitals do - a second opinion from their pathology group is done on the slides only and you do not have to be a "patient" with them..  Best!

  • SJW1
    SJW1 Member Posts: 244
    edited August 2010

    Karen,

    Since all your treatments will be based on your pathology, I would strongly suggest you get a 2nd pathology opinion. I had my pathology reviewed by a world renowned DCIS expert and patholgist, who has a consultation service that anyone can use. His website is:

    http://www.breastcancerconsultdr.com/about_dr_lagios.html 

    Because I got this 2nd pathology opinion, I went from needing a mastectomy to being able to skip radiation after my lumpectomy. This pathologist calculated my risk of recurrence as only 4 percent. With such a low risk, the approximate 50 percent reduction that radiation brings wasn't worth it for me.

    Please also feel free to send me a private message if you would like more information or feel free to check out my website if you are interested in learning more of my story:

    https://sites.google.com/site/dciswithoutrads/home

    Hugs and good wishes as you make these tough decisions,

    Sandie

  • lago
    lago Member Posts: 17,186
    edited August 2010

    I have not had surgery yet but I was told by my BS they would test everything all over again. They do not relay no the pathology from the biopsy. Check to make sure they are doing that.

  • SuzyK1919
    SuzyK1919 Member Posts: 1
    edited August 2010

    I just had surgery on August  19th to remove DCIS.  It went well, but I'm in this weird place about what to do next.  The pathology report will be available in two weeks, which gives me some time to research and gather info.  I'm still fuzzy headed from the anesthesia.

    Emotionally, I'm so grateful that it's DCIS. Then, I'm feeling weepy wishing I didn't have any of it which makes me feel like a selfish jerk thinking of those women who have to go through so much worse.  Is this normal?  All of this happened so fast beginning June 18th with my mammogram.

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