Has anyone been diagnosed and NOT treated their Stage 1?

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Mary_Long
Mary_Long Member Posts: 7
edited July 2015 in Just Diagnosed

I've had mammograms, sonograms, and even a biopsy. They all say I'm Stage 1 DCIS and that I should get a mastectomy because there are two lumps that are somewhat far apart (~1.5 cm in size).

While this news sucks, I am just really hesitant to get surgery done. Part of it is disbelief that this could happen to me, but the other part is fear that this disease is over-diagnosed in America.

Are there any stories of women who were diagnosed and decided to not get any treatment whatsoever? Are they living alright today? I'd almost rather keep a close eye on the size of the tumor and make sure it doesn't get any bigger instead of just removing the entire breast.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2015

    Mary,

    Are you sure that your biopsy shows only dcis ? My understanding is that dcis is always stage 0. Wereboth areas biopsies? Is it possible that there is an invasive component in one or both areas? Sorry to give you more questions than answers, but the stage 1 piece seems to indicate that it might be more than dcis. Do you have your pathology report? Please give us some more info as to why it would be stage 1. Take care.

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  • Mary_Long
    Mary_Long Member Posts: 7
    edited July 2015

    Apologies, I should have clarified. It's Stage 1 and they say it's invasive Ductal and Lobular. It's two different spots. But there has just been so much confusion since the mammograms and sonograms couldn't confirm anything. And then there was flip-flopping in the pathology report because it required a ton of testing to confirm

    I am having my doubts about the pathologist. I am thinking I want to get a 2nd opinion from another pathologist. I have just realized that the real person who diagnoses you is not the doctor you have been seeing, but the pathologist whom you never even speak to.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2015

    Hi Mary!

    By all means, get a second opinion. Or a third! A mastectomy is a significant surgery; you should feel confident that you're making the best decision for yourself.

    By themselves, those two lumps will not kill you. It is when the cancer spreads elsewhere (lungs, liver, brain, etc.) that it becomes a serious problem. You could choose not to treat your IDC and ILC. You may be one of the lucky ones whose cancer is so indolent that it's just not going to spread to other parts of your body. But, right now, no one can say (for sure) which cancers are going to spread and which ones aren't. That's why surgery is usually recommended, as well as other treatments (should they be deemed helpful in preventing recurrence for your cancer).

    Best of luck to you, whatever you decide!

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  • Italychick
    Italychick Member Posts: 2,343
    edited July 2015

    Mary long, I actually called and spoke to my pathologist about my report. If there is a name and phone number on there, you can call. The person I spoke to was very nice and it gave me a comfort level he knew what he was doing.

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited July 2015

    kayb is right. With IDC, it's hard to avoid some sort of treatment. However, that doesn't have to mean mastetomy. Definitely get a second opinion on treatment.

    For what it's worth, I don't think bc is over diagnosed or over treated.

    good luck!

    Jen

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2015
    Thanks for clarifying that , Mary. If you are not confident in your doctors, do seek a second opinion. I was able to take all of my films and biopsy slides to the tumor board of another hospital and used that same facility for subsequent second opinions on my treatment.
    Over diagnosis/treatment is usually talked about in reference to dcis, which is non-invasive. IDC and ILC are a different ball of wax and although mastectomy may not be your only option (possible lumpectomy), some sort of surgery is almost always recommended for invasive bc. Get that second opinion ( make sure you take all of your films and biopsy material with you or have it sent) and find a doctor who inspires confidence in you.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Mary, First I'd like to welcome you to BCO. You've picked a great place for support.

    I asked those very same questions at the beginning. I really did not want any treatment other than having it surgically removed.

    I also had two tumors, both with different pathologies. One being a tn tumor, and the other was a HER2+ tumor. It was so unusual that I had it retested by a very well known doctor. My second opinion doctor was very insistent on retesting because it was so unusual. Turns out the original pathology was correct.

    I know it's scary at the beginning, but just take it one day at a time as you gather as much information as you can. The ladies here are very knowledgeable and have given you excellent advice. If you're having doubts, I don't think you can ever go wrong with a second opinion. My second opinion doctor made me realize no treatment really wasn't the best option for me.

    Sending best wishes and gentle hugs to you.

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  • Mary_Long
    Mary_Long Member Posts: 7
    edited July 2015

    Thank you for all your support, everyone. My main concerns are that the slides were mixed up at the hospital. I read this can definitely happen. So I have reached out to knowerror.com to see if I can send them my slides and some DNA to confirm that everything is indeed mine.

    If they are indeed mine, I plan to reach out for a second pathology opinion. I was leaning towards Johns Hopkins since they seem to do this a lot and can get results back within 24 hours: http://pathology.jhu.edu/department/services/consu...

    If anyone else has any other top notch pathologists, I would really appreciate their names. Thanks again and bless you all.

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  • newlydx15
    newlydx15 Member Posts: 20
    edited July 2015

    Do not ignore this diagnoses, the tumor will not stay the same size, it will continue to grow. At least consider chemo to shrink the size, consider a lumpectomy

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  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    Once you know more about your patholgy, ask why an mx is being recommended over lx. It is lilkely because they will have to remove so much tissue that your breast will be disfigured. Also, lobular is a little bit sneaky and may be larger than it appears on a mammo or ultrasound. 

    Unless you are very old with a very slow growing tumor, you'll want it out of there before it spreads to another organ.

    Good Luck

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2015

    Mary have you had an mri? Usually you would have that before any surgery.

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  • newlydx15
    newlydx15 Member Posts: 20
    edited July 2015

    Get treatment, this is not going away, I work in the medical field, I myself 35 just diagnosed with IDC, masectomy, chemo, do all of it, it will only become more aggressive, invade more of you, become stronger, get rid of it, my advice


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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2015

    You guys nailed it. Second opinion for sure and not doing anything and watching it not a good option. I bet we all have heard of or know someone who decided to forgo surgery and/or treatment and it didn't end well.

    Good luck Mary keep us posted.

    Diane


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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    I sent my slides to DFCI I'm Boston for second opinion. Confirmed the original opinio

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited July 2015

    Mary, get all the info first before you decide what to do. Panic is the first reaction as well as shock and denial. But that won't help your issue right now. You need to find a care team that you trust, and then decide. You really can't just say no without the facts and reports. It's already there, you really need to address this. Good Luck! Cheryl

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