Doctor says no need to worry for recurrence but I am

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Blogger
Blogger Member Posts: 93
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I am so glad I found this site and happy to have so many brave "sisters" to ask my questions to. I was diagnosed with DCIS in September of 2012. I had a lumpectomy and they found a 7cm tumor in my milk duct on my left side. On an earlier ultrasound they found suspicious tissue on my right side which I was going to have to watch very carefully. The lumpectomy was successful but the surgeon found that both breasts were peppered with non-invasive cancer cells. I opted for a bi-lat mx which occurred on 10/10/12. They found that all my lymph nodes were clear. I am still going through reconstruction. Recently had expanders removed and replaced (after 5 months) with silicone implants. I am stage 0, had no chem or rad, no drugs and said I will never have another mammo. I am going in for my first chest wall exam in a couple of weeks and will continue these for 5 years. I was trusting my onco/breast surgeon with this follow-up procedure until reading your many blogs. These blogs are from strong, courageous women who are on the same breast cancer journey I am on. I was told by my breast surgeon that I will never have to worry about breast cancer ever again. I was confident until I started reading the many blogs and am now wondering if I am WAY overconfident and should be asking more questions. I am seriously thinking I am not asking enough or the right questions for my future health. What are your thoughts to help me? Am I too trusting? How should I continue my breast cancer follow-ups? What would you do if you were me? One more thing: I have never been one for mood swings but I can cry at the drop of a hat right now. My journey is entering its 8th month. Could that have anything to do with it. Please help.

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2013

    If you have 5 years of follow-ups with the breast surgeon or oncologist, for a diagnosis of pure DCIS, that's good.  Many of us have much less follow-up than that. 

    What's important however is to understand that even after a BMX, you can still develop a recurrence or a new primary breast cancer. Your breast surgeon was wrong when he said that you "will never have to worry about breast cancer ever again."  Well, maybe he was partly right and partly wrong. The risk that you might develop BC again is low enough that it's not something to worry about. But there does remain a small risk (about 1% - 2%), so you always should be diligent.  Both during these 5 years while you are still getting follow-ups, and ongoing after that, you should do regular breast self exams and check for new lumps or anything suspicious.  You may not need mammos anymore, but you do need to always check your breasts.

    Does that make sense and help?

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  • LAstar
    LAstar Member Posts: 1,574
    edited March 2013

    I had a very similar diagnosis and treatment, and I've had two MO's tell me there is no monitoring for me other than manual exams. It's frustrating and scary to be on one's own after so many changes! There is a non-zero chance of recurrence, and I haven't felt like an odds-beater this past year. But we have gone to great lengths to lower the risk of recurrence, so we should find some relief in that. Like Bessie said, be diligent! Keep an eye on things, live a healthy lifestyle, which includes not stressing about things that can't be changed. At least, that's the pep talk I give myself several times a week. :)

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited March 2013

    JUne of 2008 I found DCIS on my mamo, did lumpies and rads and now nearing what I hope is the end of 5 years on Aromasin

    I hav been followed all the time by my BS, once a year to read my mamo.  and my MO who is still checking me once every 6 months

    actually, I guess the idea of not being checked by anyone, would scare me.  I have during this time had two cases of junk that needed biopsy but both were fine

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