another newbie - seeking advice

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deb1973
deb1973 Member Posts: 96
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi ladies,

So I got diagnosed Tuesday and it already feels like an intervening lifetime has passed between now and then. I was in a fetal position the first two days, then yesterday tried to bounce back, and this morning, am back to mush. The only help/voice of reason I've found over the past few days is the strength and advice of the women on this board.

I am just so scared. I was dx after bloody nipple discharge but no mass showings on ultrasound or mammogram. The MRI showed regional non-masslike enhancement so the doctor took out a big section (6x7 centimeters of tissue) on an excisional biopsy and they found DCIS, grade 3 (papillary), ER-negative, in every duct. So they are recommending mastectomy and SN testing. Fine by me, but what really scares me are the awful studies suggesting that even after mastectomy my prognosis is poor. I have a two and a half year old son who means the world to me.

I guess my only plan right now is to attack this as hard as I can. I've already ordered a second-look path review by Dr. Lagios to see if he has any additional insight since he has received so many recommendations by ladies here. Also, my mother found an article that mentioned that suggested that there me be a false-negative rate in hormone receptor testing. I am curious from survivors, what steps would you recommend (from experience) for a newbie to take right now to maximize her chances of a healthy and long-term recovery? 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2013

    deb1973 - sorry you find yourself here, I know how hard the beginning is!  What is your reason for thinking that your prognosis is poor with a DCIS diagnosis, if it is cleared by mastectomy?

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  • ballet12
    ballet12 Member Posts: 981
    edited April 2013

    Hi deb73--

    Please read all of the materials on DCIS posted on this website (as well as reviews by Beesie).  DCIS, even ER-negative, has a good prognosis.  So long as it is "pure" DCIS, and that is what is found on the final biopsy for the mastectomy, the prognosis is good.  If they do find invasive ductal carcinoma, then the stage is not "0", and the prognosis would possibly change, depending upon the information they get at that point (as well as the nodes).  Good that you are getting another path review.  As far as I know, with mastectomy, the recurrence rate for pure DCIS (which would include either DCIS or IDC) is 1 to 2 percent at most.  If they feel that you have pure DCIS, but still don't have clean margins after the mastectomy, they may recommend radiation as well.  About the ER-negative business, they will re-test with the mastectomy pathology.  Maybe it will change or be slightly positive.  I think they treat with even 10 percent positive ER.

    I'm not quite out of the treatment phase, but I think getting lots of exercise and eating pure, whole foods, is the way to go.  There are also recommendations about reducing exposure to BPA in cans, bottles, plastics, shopping receipts (it's apparently in it).   Some individuals stop using conventional deodorant because of the chemicals in it. Reducing stress, getting sleep, yada, yada, yada.  I'm not a purist. I just try to do the best I can.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2013

    Deb,

    As ballet pointed out, you may find it helpful to read up on the main Breastcancer.org site's section on DCIS for tons of info.

    Hope this helps!

    --The Mods

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  • Heart2930
    Heart2930 Member Posts: 139
    edited April 2013

    Hi Deb73,

    Sorry you find yourself here and in this situation. I am a newbie as well. I was diagnosed about a month ago. My lumpectomy is scheduled for this coming Monday. Why do you think you have a poor prognosis? Pure DCIS normally has a very good prognosis.

    I really do understand your anxiety though. I have been going through it for over a month now. MANY sleepless nights filled with "What ifs??" At this point I will actually be very relieved to have the finaly pathology from the lumpectomy in (whatever it is). Getting rid of some of the uncertainty and getting some answers will go a long way to restoring peace of mind for me.

    Not that I have been of much help, but just wanted to let you know you are not alone.

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

    Deb, I know that a diagnosis is scary, but don't scare yourself more by imagining the worst.  Let me repeat here something that I said to you a few days ago in your previous thread:  "The survival rate for women who have pure DCIS and who don't get a recurrence is 100%."

    With a mastectomy for DCIS, as long as you have clear surgical margins, your recurrence risk will only be 1% - 2%.  So there is at least a 98% chance that you will be in the clear after surgery alone. 

    But let's say you are unlucky and you are one of the 2% who has a recurrence. Most women who have a recurrence after a MX for DCIS catch the recurrence early, while it is still a local cancer and in many cases, while it is still DCIS. About 50% of recurrences are invasive cancer, but most are still early stage. Even for women who have an invasive recurrence after an initial diagnosis of DCIS, the survival rate is in the range of 80% to 90%. So what it comes down to is that with your current diagnosis, you have approximately a 99.8% chance that you will be just fine and you will live a long, full life.

    I don't know what you've been reading that suggests that you have a bad prognosis.  Either you are reading something that isn't at all relevant to your diagnosis, or you've misinterpreted what you've read. The truth is that a diagnosis of DCIS, no matter what the pathology is or how aggressive it is, is not a life-threatening condition.

    Life is full of risks - every time we step out the door, we face risk. There are probably many risks in your life that you never even think about that put you at greater risk than this diagnosis. A diagnosis of DCIS is scary, it does turn your life upside down, and it does change your perspective on life. But it's not life threatening. You will get through the surgery and any other treatments your doctors might recommend and then it will be in the past and you will go on with your life. 

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  • deb1973
    deb1973 Member Posts: 96
    edited April 2013

    Oh ladies, I wish I could send you all a bouquet of flowers or some of the fragrant herbs that my son is growing in our backyard.

    The studies, unfortunately, are out there. I can't find the cites right now, but the basic message was that younger women have a poorer prognostic outlook (esp. w/ large lesions, aggressive grade, ER negative, etc.)/higher risk of dying that exists regardless of whether the surgical intervention involves BCT or mastectomy. I know some of them can probably be critiqued based on sample size, when the study took place, etc., but they scared the crap out of me.

    However, I know that the data is imperfect/conflicting and and I know it doesn't do me any good to "wallow" in the scary. There was also a more reassuring Canadian study that showed that, in spite of a ten percent post-mastectomy recurrence rate, all subjects were alive at ten years. So good monitering is important.

    I am going to try to take to heart what a significant number of women have said, though - go as aggressive as you can on it. This means having the path combed over with a fine tooth comb, actively investigating what my options are, and making sure the follow-up is as thorough as possible.

    Clean living definitely seems to be the way to go. I was already a non-smoking, teetotalling, organic eating person, but I could definitely do more w/ diet and exercise - I've been trying in the last few weeks to be mostly vegetarian (except eggs) and cut down on sugar. 

    For inspiration, I've always been amazed by my maternal grandmother who had a mastectomy following invasive breast cancer (in her sixties), a chest wall recurrence that she found herself, and who still lived to be 92, and died of other causes. She was a high-energy person who was always in motion and got lots of exercise.

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  • Annette47
    Annette47 Member Posts: 957
    edited April 2013

    One thing to keep in mind when you read the studies is that the poorer prognosis for ER- cancers as far as I have seen relates to invasive cancer.  It is my understanding (although I could be wrong) that the implications of ER- DCIS are not truly known at this point.  I only bring this up to remind you that if you must Google, be sure what you are reading is discussing DCIS, not invasive cancer as the outcomes and implications of each are quite different.

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

    Deb, I will second what Annette said. When you read studies you need to be sure that you are reading studies about DCIS.  The prognosis for DCIS is completely different than it is for invasive cancer, simply because DCIS does not have the ability to metastasize. Perhaps the best advice is that you stay away from Dr. Google, because all that you've been getting from Dr. Google is misinformation that is scaring you.

    From what you describe, it sounds pretty clear that the study or studies you are referring to were specific to invasive cancer, not DCIS.  So here are some DCIS studies:

    DCIS Prognostic Markers: A Few New Candidates Emerge

    "...“We’re treating DCIS not because DCIS per se causes any problems but because it is a major risk factor for the development of invasive cancer.”...

    The good news is that with currently available therapies, the disease-free survival rates are between 97% and 98%.

    “There is no DCIS associated with a high risk of dying,” said Morrow. “Regardless of how you treat DCIS, fewer than 2%–3% will die of breast cancer.” "

    Analyzing the risk of recurrence after mastectomy for DCIS: a new use for the USC/Van Nuys Prognostic Index.  This study found a recurrence rate of 2% over 7 years among those who had a MX for DCIS.  All recurrences occurred within the highest risk group, those who had multi-focal disease and comedonecrosis; at 12 years, this group had a 9.6% recurrence rate. Within this high risk group, those who were younger were at higher risk. Note however that even within this high risk group, the survival rate is estimated to be 97% - 98%. This study would suggest that if your margins are close after a mastectomy, rads might be a good idea to reduce your recurrence risk.  What you want to do is avoid a recurrence because then you have nothing to worry about. It's only those who have an invasive recurrence who face any mortality risk.

    The Impact of Surgery on Ductal Carcinoma In Situ Outcomes: The Use of Mastectomy

    "Clinical outcomes following mastectomy for DCIS are excellent, with both clinical trial and population-based studies consistently reporting a 1%–2% rate of local recurrence with long-term follow-up compared with approximately 10%–15% following breast conservation and radiation. The increased local recurrence risk with breast conservation has not been shown to affect breast cancer–specific survival when compared to patients undergoing mastectomy for DCIS, with both groups exhibiting up to a 99% long-term breast cancer–specific survival."

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  • hatlady52
    hatlady52 Member Posts: 4
    edited April 2013

    Deb,



    My diagnosis seems similar to yours as I also had the high grade DCIS with ER-/PR-. To address the implication of being ER- and PR- with DCIS, the main point is that hormone therapy such as Tamoxifen won't help prevent future recurrence or reduce size of existing DCIS. But I also was told I was close to 100% cured by having the mastectomy with no further treatment needed, so sounds like nothing to worry about unnecessarily. (Due to my small size I wasn't a lumpectomy candidate had I wanted to go that way). As it turned out, more DCIS was found in post-surgery pathology than identified pre-op, so I got lucky (I had extremely dense breasts that even MRI was inaccurate). Also because I had this aggressive form of DCIS, my preference was mastectomy anyway.



    I was actually very relieved that I only needed surgery as I really feel for our BC sisters who were not so fortunate to have their cancer identified at this stage.



    Continue to read and learn so you feel as much in control and prepared as you can. These forums and other sites by real BC survivors helped me more than the three books my DH purchased on BC.







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  • deb1973
    deb1973 Member Posts: 96
    edited April 2013

    Hi ladies,

    Sending all of you fresh parsley and dill from the garden.  Thank you all for your comments and feedback:) I am pretty sure the studies were on point because I made my mother (who has written jrnl articles on vet med) look at them, but she poked all sorts of holes in them. Beezie is also right that I was linking two different pieces of information and extrapolating - a somewhat higher recurrence rate among young patients (even w/ mastectomy) and scary stats after recurrence, but that data is in flux and the most recent articles look a lot more favorable.

    The Canadian article was a 2013 abstract in a radiology/oncology jrnl that actually had a 7.5% ten-year recurrence rate (not a ten-percent one), but 100 % survival over ten years. M.D. Anderson had a 2013 article that was not mastectomy-specific w/ a 10% recurrence among younger patients over a five year period, but also w/ really good survival stats. 

    Anyhow, thank you, thank you, thank you for all the support and good energy. I will try to use Dr. Google and Pubmed for good rather than evil. 

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