Your thoughts about this study

Options
HelenJan
HelenJan Member Posts: 1
edited February 2016 in DCIS (Ductal Carcinoma In Situ)
I was diagnosed with DCIS after my mastectomy (they thought it was IDC before the surgery). I was relieved to find out it was "only" DCIS. But when I came across this article about quite a new study it scared the living crap out of me. If I understand it right it doesn't matter what you do to beat this shitty disease, it can kill you anyway. And that's even if you dont get an invasive cancer, which means you can get mets from the DCIS...?
And what they wrote about reccurence, that women with DCIS often experience a second primary breastcancer. What does "often" mean, that you most likely will get cancer again?
I'm sorry for this sad post and for my poor english (I live in Sweden).

Here's a link to the article

http://oncology.jamanetwork.com/article.aspx?articleid=2427491

Regards Helen
· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Hi Helen - Welcome rot Breastcancer.org!

    Until other members post here with personal opinions about it, you may want to take a look at what we have in our main site related to DCIS and recurrence:


    Hope this helps!

    The Mods

    · Share on FacebookShare on Twitter
  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited January 2016

    Hi Helen,

    I don't think that article is scary -- the risk of dying of breast cancer is still low if your initial diagnosis was DCIS. What it points out though is that the 98% survival rate that is often touted is not really accurate either - because those numbers only include "recurrence" of original cancer and not the risk of a new breast cancer in women with a previous DCIS diagnosis. The risk is still low. Make sure you keep your follow-up appointments, stay healthy (eat right, don't smoke, drink in moderation, and try to be happy and as stress free as possible).


    Best wishes to you for a long and happy life!!

    · Share on FacebookShare on Twitter
  • TB90
    TB90 Member Posts: 992
    edited February 2016

    What I read is that breast cancer mortality rate for DCIS at 20 years is 3.3% and .47% appear to progress without an apparent invasive component. Cancer is terrifying and with time, it does get easier to accept. Two plus years out from dx, these numbers actually reassure me. I have seen so much worse with my friends dying from other cancers. We want to be told that DCIS will not kill us. Well, it overwhelmingly will not, but there will never be any guarantees. Like BLinthedesert wrote, live as healthy a lifestyle as you can. I actually read a study that suggested that women dx with DCIS outlive their counterparts due to improved lifestyles. That is the study that I hold in my heart. It also helps to turn the numbers around. 96.7% of women live past 20 years. 99.5% of women with DCIS will not be surprised by mets. I hope this helps. I have become a master at seeing the positives, but it did take time. Take care of yourself.

    · Share on FacebookShare on Twitter
  • redsox
    redsox Member Posts: 523
    edited February 2016

    I agree with the previous posters and find these numbers reassuring.

    Biologically DCIS must become IDC before it can be metastatic, but the medical record for some patients may not show the middle step because:

    1) IDC was present at initial diagnosis or occurred at a later time but was not detected or

    2) IDC occurred and was detected but was not recorded in the medical record related to the initial diagnosis

    What does that mean for you? Get follow-up and don't ignore signs or symptoms.

    Note: Cancer registries and even SEER are more fragmented in the USA than they are in Sweden. Americans move around frequently and often move out of the catchment area of the initial registry. Follow-up data over long periods of time may well miss information. I read only the abstract and not the full article, but the authors seem to have overstated that patients got metastatic disease without IDC when missing data is a likely explanation.

    · Share on FacebookShare on Twitter
  • okbecca
    okbecca Member Posts: 106
    edited February 2016

    One thing that is missing in the way doctors toss around statistics is that statistics are meaningless on an individual basis. If my DCIS has shed rogue cells that come back later as tumors in my bones or wherever and kill me, then I believe my "odds" of dying from this disease would be 100%. If, on the other hand, I never have a recurrence, then my odds of no recurrence would be 100%.

    My odds of never getting breast cancer were, based on my different risks and family history, 98%. The doc who first spotted a problem wrote all about this in my chart to protect himself against charges from his colleagues of over diagnosing me and subjecting me to an unnecessary biopsy. I was labeled a "bad" patient -- albeit a patient whose instincts were more right than the statistics -- from day one.

    If I hadn't insisted that we biopsy rather than "watch" it, I guess invasive ductal carcinoma would probably be heading my way right now. The reason? I fell into that unlucky 2%. I think that means I didn't have a 98% chance of NOT getting cancer. I actually had a 100% chance that I WOULD get it.

    My point is just that statistics are only indicators. If you have bad statistics, that doesn't mean you need to resign yourself to dying. Somebody always beats those odds and it might as well be you. On the other hand, somebody had to make up that 2% of people with my history who do get the big C. Lucky me, I was one of them. My cancer is just as real as the cancer of someone with much "worse" odds. The only difference is that I got to start arguing with my docs (by insisting on a biopsy for what they were "sure" was benign) before I was even diagnosed, rather than waiting until later.


    · Share on FacebookShare on Twitter

Categories