How should DCIS be treated? Is there an inusrance angle?

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Kitchenwitch
Kitchenwitch Member Posts: 374
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I'm struck by something JennSmith said on another board (not to single you out in a hostile way by any means!)  As far as I know, there is NO "standard of care" for the most part. I mean, docs have general guidelines but there are plenty of docs who don't like the MRI for the reasons you mentioned. I had a positive biopsy; I guess I wish I'd been with a doc who then said, OK, let's do the MRI now.

But still lots of docs at perfectly well-respected institutions in New York City don't like them. Or are uncomfortable with them. Or... as my husband and I have discussed, don't feel like battling with your insurance company. Which we think is definitely a factor, even tho I am sure nearly every doctor would hotly dispute it.

My BS said she'd do up to 3 re-excisions ... but she kind of wafffled and seemed more like 2 was her number before a mastectomy. Someone else here said two was IT. Again - does insurance come into this? I don't have a strong opinion this. I'm about to hit my deductible anyway and everything this year is going to be a lot cheaper (how sad is that).

I know they're here to help and heal. And I know they believe that. But they're also here to make money. Why was she so insistent that I get on next Tuesday's surgical schedule? I had an entire month (her scheduling!, and I didn't question it) between lumpectomy and re-excision). So what's the hurry? Could it be that it's looking like a light day, and she's got to fill those slots? I know I sound like I'm ranting, but it struck us as strange and much more about them than about me.

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  • redsox
    redsox Member Posts: 523
    edited April 2010

    The standard of care (best shown by NCCN guidelines) does allow multiple options and is vague on many points for which the data is not clearcut.

    There is controversy about the value of MRI and your doctor may not think they are valuable.  Insurance can be a factor but I think most insurance plans that are reasonably good (and we all know some are really bad) will pay for a diagnostic MRI once you have a diagnosis of DCIS.  Insurance refusals are a bigger issue for those who do not have a diagnosis of cancer or for follow-up after treatment.  Most of the doctors I saw favored MRI but one (who was a very good doctor) did not. 

    I think the insistence on Tuesday for surgery is ridiculous.  You should be able to have some choice for scheduling, especially with DCIS.  For a patient with much more aggressive cancer that kind of urgency might be OK.

    When in doubt get a second opinion! 

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  • dsj
    dsj Member Posts: 277
    edited April 2010

    Just to follow up on what redsox said.  The only doctor I consulted who did NOT recommend an initial MRI was the most highly placed (the director of a multidisciplinary breast cancer center that is accredited by National Accreditation for Breast Cancer Centers).  I'm not sure altogether what her reasoning was, since in the end I elected to go to another surgeon, but I don't think it had to do with insurance.  

     There does seem to be a lot of controversy about the value of MRI (along, it seems, with everything else connected to DCIS!).  I'm glad I got one, though (and I think it was a factor in the later onsensus by BCC not to re-excise).  I definitely think you should have the opportunity to talk to another surgeon.  Given how cavalier they have been about scheduling you up to now, it seems ridiculous to make you kowtow to them now.   

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  • KAR
    KAR Member Posts: 225
    edited April 2010

    Kitchenwitch,   in response to the insurance angle I don't think so, but I will tell you that my insurance did balk at my MRI, they requested records but finally  paid.  I think the confusion lies in the fact that MRI will show one persons DCIS but not another. Mri is also knowen  to showing false positives (it showed a spot on my lung).  My MRI showed no areas of concern in my breast but mammo showed calcification's.  My doc said that the verdict on MRI is still out when it comes to finding dcis.  I think the reason docs dont like to keep doing re-excisions is that you could have dcis scattered throughout the duct and then also multi centric dcis (many areas of dcis in many ducts).  I ended up with a mx because personally I was sick of them telling me I had a tiny amount of dcis and they had no clue how much I actually had.   I actually had about 3cm of high grade dcis with scattered dcis/lcis and adh throughout the duct.     

    Have you seen a oncologist?  That might be a good thing for you since it sounds like you dont trust your BS.  My oncologist was the voice of reason for me.  Also you have to think, will you be happy with how you look after 3 re-excisions?  This is a hard decision and I understand your confusion, I felt it too.  But this will come to an end soon and you will start to feel normal again.  Its been a year for me, horrible aniversary but glad its behind me.  Best of luck. 

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  • redsox
    redsox Member Posts: 523
    edited April 2010


    Following dsj, the one doctor who did not favor MRI would probably make any valid list of the 10 doctors in the USA most knowledgeable about DCIS.  I think MRI is promising but its net value is unproven. 

    Even so, I think you should push for it if you want to.  It could be helpful for you.

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