DCIS - cancer or Pre-cancer?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007

    holland---DCIS is by definition non-invasive (stage zero bc); once it becomes invasive, it is then referred to as IDC. Perhaps you have some of both?

  • twinbubbas
    twinbubbas Member Posts: 70
    edited July 2007
    Hi,

    When I went in for my exchange surgery (exchanging my expander for the implant) one of the "people" you see, I guess it was a nurse or anesthesiologist, who knows, said, "so you had cancer?" And I said yes. And he said, "so it wasn't in situ". And I said, yes, it was. He shut up then. I guess I gave him the stink eye.
  • Kitty_Cat
    Kitty_Cat Member Posts: 31
    edited July 2007

    My doc said DCIS was 'precancer' -- shows you how docs have their own opinions and stick to it.

  • geebung
    geebung Member Posts: 1,851
    edited July 2007
    I agree with Darbysmom - Beesie, you do explain things so well. I am also wondering about Tamoxifen. I was dx in Feb this year, had lumpectomy and then mastectomy of left breast for extensive DCIS with possible microinvasion. I am 50, premenopausal so have not been prescribed Tamoxifen. This is probably a silly question, but why do you have to have gone through menopause before being eligible to take Tamoxifen (or Arimidex for that matter)? Is it because it will bring on menopause? One of the risk factors for bc is having a late menopause (and also early onset of periods - which I had) so wouldn't bringing on menopause actually help to cancel out one risk factor? Or does bringing on menopause artificially cancel any benefit out? I am not keen to take medication, just curious!
    Thanks everyone for such an interesting discussion.
  • geebung
    geebung Member Posts: 1,851
    edited July 2007

    I forgot to add that my DCIS was estrogen+ as well as progesterone+.

  • SNJulie
    SNJulie Member Posts: 40
    edited July 2007
    Hi geebung
    I am 52, premenopausal and will be on Tamoxifen for 5 years. You do NOT have to postmenopausal to take this drug. There are other drugs that you cannot take if you are premenopausal but it is not the case with Tamoxifen. Ask your doc again for an explanation.
    I was upset about estrogen + and Progesterone + until I read the posts here. That type of cancer depends on estrogen to "survive and multiply" so to speak. Tamoxifen will bind the estrogen in your body so it cannot "feed" tumors. So, being estrogen + and progesterone + is a good thing because you can take tamoxifen and protect yourself in another way. Granted there are side effects that I am worried about as well, but I am looking at the great benefits and personally think it is worth it.
    At least this is my understanding of Tamoxifen...but as we all know, everyone is different and all our docs have different ideas.
    Julie
  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited July 2007
    Hi geebung!

    Actually, tamoxifen is the hormone treatment of choice for those of us who are premenopausal. Here's a link to a couple of tamoxifen discussions: One of the things to be aware (from the NIH/NCI site) is that while it can bring on menopausal-type symptoms, it can actually enhance fertility. However as it also causes fetal harm, pregnancy should be avoided while on tamoxifen.

    HTH,

    LisaAlissa
  • geebung
    geebung Member Posts: 1,851
    edited July 2007
    Thanks so much for your answer SNJulie. There is such a range of treatments and approaches from different doctors and if you get second and third opinions, who do you believe?? I think my doctors have done a great job and I don't really have any regrets - just lots of questions! Although I consider myself fortunate that my cancer was non-invasive, I am constantly seeking information on how I can stay healthy and keep my other breast safe.
    I wish you all the best with your course of Tamoxifen Julie, hope you have minimal side effects and maximum peace of mind.
  • geebung
    geebung Member Posts: 1,851
    edited July 2007

    LisaAlissa - thanks for those links. Boy - the more I learn about all this, the more I find there is to learn! I suppose the reason why I have not been prescribed Tamoxifen is because I had a mastectomy and was node-negative. I am quite happy to abide by that. Interesting about the possible increase in fertility. I'd hate to have to worry about that again!

  • corvette
    corvette Member Posts: 41
    edited July 2007

    My doctor called DCIS precancer - so did my onc.

  • Catherine
    Catherine Member Posts: 305
    edited August 2007
    My surgeon also called DCIS precancer. He said, "The cells are not cancer and they are not normal. Sort of an "in between stage".

    Catherine
  • louishenry
    louishenry Member Posts: 417
    edited August 2007

    Hi. I'm new as of today. Dx with low/intermediate grade DCIS in May. Biopsy showed 4mm and removed it all. Lumpectomy showed no residual disease of any kind. I was very lucky the radiologist wasn't asleep. Onc (3 different opinions) said no rads or tamox. Just annual MRI and digital mammo every 6 months for 2 years. Called DCIS a pre-malignancy, as well. I feel ok, but should'nt I be doing more for such a potentially serious cond?

  • OldOakTree
    OldOakTree Member Posts: 173
    edited August 2007
    Quote:

    Hi. I'm new as of today. Dx with low/intermediate grade DCIS in May. Biopsy showed 4mm and removed it all. Lumpectomy showed no residual disease of any kind. I was very lucky the radiologist wasn't asleep. Onc (3 different opinions) said no rads or tamox. Just annual MRI and digital mammo every 6 months for 2 years. Called DCIS a pre-malignancy, as well. I feel ok, but should'nt I be doing more for such a potentially serious cond?



    Louishenry, How large were your margins? As long as they were adequate, your follow up plan sounds reasonable. Four mm and low/intermediate grade is very favorable for DCIS.
  • Motherbeartosix
    Motherbeartosix Member Posts: 101
    edited August 2007

    It's my understanding that DCIS "are" cancer cells. They just haven't moved beyond the duct. Atypical duct hyperplasia (ADH) would be an example of "in-between cell," which is why ADH is considered a risk factor.

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2007
    Quote:

    It's my understanding that DCIS "are" cancer cells. They just haven't moved beyond the duct. Atypical duct hyperplasia (ADH) would be an example of "in-between cell," which is why ADH is considered a risk factor.




    Jo, you are mirroring what my surgeon has said for the past 2 years to me. I was dx with ADH Feb 2005 left, ADH Aug 2006 right, DCIS April 2007. That is why I chose bi-lat June 1, 2007 to not let the cancer have another chance.

    Sheila
  • Melissa7
    Melissa7 Member Posts: 14
    edited August 2007
    Hi Louishenry,
    Just want to recommend that you take a look at our rather large section on DCIS: http://www.breastcancer.org/symptoms/dcis/index.jsp
    We hope that this is helpful.

    Best wishes,
    Melissa
  • Motherbeartosix
    Motherbeartosix Member Posts: 101
    edited August 2007
    This is what my path report on my biopsy said about my ADH:

    "The changes as evaluated in these levels do not fully satisfy quantitative criteria for a diagnosis of ductal carcinoma in situ, though qualitative criteria are met."

    If you really look at that sentence, it's saying that my "ADH" meets the criteria for DCIS in quality (what the cells look like), but not in quantity - not enough of them.

    Anyway, some doctors prefer to say that DCIS is pre-cancer, because no one knows which DCIS is just going to stay in the duct and never cause problems, and which will grow beyond the duct.

    I suspect there's a lot of DCIS that never grows beyond, which is why it's such a hard decision to have a masectomy. It's just now with newer technology that more DCIS and ADH is being diagnosed.
  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2007

    As your path report states, there is a fine line between ADH and DCIS in some cases that it could go either way, pre-cancerious or cancer. I have also heard that 2 different pathologists reading the same slide can come up with 2 different dx.

  • 3girls4me
    3girls4me Member Posts: 196
    edited August 2007
    I am very intrigued by this question as well. I was diagnosed with stage 0 DCIS low grade in June. When the doctor called me to tell me, he said "we found a very low grade cancer". And explained that it IS cancer, but pre-invasive cancer. Carcinoma, by definition IS cancer.

    But then, so many say it's NOT cancer. Even the newest article about MRI's and DCIS that just came out last week says "DCIS is a non-malignant tumor". ?????????? Confusing, for sure. And frustrating because I feel like do I really have cancer, and if not, why am I letting the people who love me be so upset about this if it isn't really cancer? when you tell your friends/family that you have this, most IMMEDIATELY think the worst, and don't know about DCIS vs. IDC. Myself included! Now I feel more informed. Not until I was diagnosed did I learn about all the different types, stages, grades, etc.



    Leslie
  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2007
    My surgeon said that DCIS is cancer that is found in the earliest stage and the best one to have because it is contained in the duct and not spread to other areas of the breast. It is the easiest to treat by far. I went through all the problems with friends/family think the worst about cancer. When my mother was diagnosed in 2001, she had to sit down with her mother and explain that she was not going to die like her sister did in 1978 from ovarian cancer because they found the main tumor of my mother and took it out, they could not find the main tumor of my aunt until after she died.
    Sometimes we have to take the lead and teach our loving friends about what will happen and what won't happen because of the new technology.
  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited August 2007
    Quote:

    What I guess kind of gets to me it the idea that I don't have "legit" cancer, but I have all the treatment challenges. I sometimes feel like a want-to-be member of the bc club, when I certainly didn't ask to be included. My doc put me in this club with his diagnosis, but he says I'm only a "pre-member." It's more a feelings on how I view myself in relationship to others who have breast cancer. For me personally, it's a feelings question.

    I'm just glad that there is this thread where I can ask questions and air these feelings without guilt for not being "cancerous enough."

    Cyd




    Hi Cyd,

    thanks for being so honest about your feelings. I've felt like I'm "not cancerous enough" because I haven't had radiation or chemo, "only" a unilateral mastectomy and aromatase inhibitor for my Stage 1 invasive ductal carcinoma (involved the nipple, therefore lumpectomy not recommended by any doctors whose opinions I sought)!

    So, in my book, anyone undergoing 25 radiation treatments "really" has breast cancer compared to me!

    On another note -- I hope everyone considering tamoxifen is aware of the fairly new genetic testing to see how well you can metabolize the drug. (See discussion here: http://community.breastcancer.org/ubbthr...e=0#Post677097)
  • dissed1006
    dissed1006 Member Posts: 9
    edited August 2007

    Hi all....I had a nurse tell me DCIS was not cancer and that if I wanted to I could even put that on any application for insurance...I asked my breast surgeon and she said "Absolutely not!, That would be insurance fraud, because DCIS IS cancer." My onco also feels that way, plus every medical document on me states "breast cancer" as diagnosis. The way I see it, if they have to remove a body part and do further treatment...it's cancer!

  • Reader
    Reader Member Posts: 58
    edited August 2007
    This is an interesting discussion! I was recently diagnosed, by a doctor who used the words "I'm sorry, it's cancer". She explained that it was high grade DCIS, in 3 areas. The breast surgeon I subsequently saw also referred to it as simply "cancer", as did the plastic surgeon. Each also said "If you're going to have cancer, this is the kind to get".

    While some doctors may use other terms, possibly in an attempt to avoid scaring you (?), mine seemed think that scaring the patient into action was a good thing, perhaps because my questions included a lot of "What if I do nothing?" (BTW, I'm definitely not going to "do nothing".)

    I can understand why one might be concerned with the terms. Who wants to feel that they've had a mastectomy or unpleasant drug treatments for something that isn't actually cancer? I'm calling it cancer in my own mind, because it helps me to feel comfortable with the rather drastic medical treatments. I say go with what works for you!

    Take care,
    Reader Girl
  • dissed1006
    dissed1006 Member Posts: 9
    edited August 2007
    Reader Girl,

    Good luck to you. I too had high grade DCIS throughout the breast. If you'd like to chat look me up in the chat room or get my email address from my profile. You didn't mention what treatment you're going to have, but whatever you choose, I wish you the best.
  • SharonCorrea
    SharonCorrea Member Posts: 40
    edited August 2007

    I think a lot of the ambivalence among doctors is that NIH/NCI refers to DCIS as a "pre-cancer," which is why many doctors do so as well. In a discussion with my ins. agent, he suggested just using "DCIS" on any insurance applications--ins. companies do use the NIH definition and attach the pre-cancer ID on the condition. DCIS does contain the word "carcinoma" but so does LCIS which is clearly a a pre-cancerous condition.

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2007
    I like to think of DCIS as 'Cancer-lite' all the associations of cancer without the 'full monty' treatment.

    If it was not cancer, why in the world did I have a bi-lat mastectomy?
  • joe1234
    joe1234 Member Posts: 10
    edited August 2007

    Hi, I was also dx with dcis in feb. had surgery to remove calcifications in both breasts and had a second surgery in left breast to remove more calcifications and create a clean margin. Path report came back clear. also have ADH in right breast. I agree that this dx is confusing. Surgeon described it as pre cancer but oncologist said it is definitely cancer. He said it is a matter of semantics when a surgeon talks about it to a patient. Just had mammo for right breast and my doctor wants a repeat mammo in oct.

  • joe1234
    joe1234 Member Posts: 10
    edited August 2007

    the oncologist suggested that I take tamoxifen to reduce my risk of developing another cancer. Also saw a radialogist and after dicussing my case with my surgeon they agreed that my cancer was small enough to avoid the radiation. I have decided to not take the tamoxifen at this time, I am very nervous about the side effects, especially blood clots, if I am at such a low risk of developing another cancer. Not sure if the tamox. would be much help in my situation. And to tell the truth I got the impression that the doctors aren't sure eithier. Just lost a close member of our family to a blood clot in his leg. only 40 years old. That really made me more nervous. Hoping and praying that I am making the right choice in my particular situation. Like a lot of you I have been doing a lot of research on my own. All I can say is that this dcis is confusing. Thanks for listening. Joanne

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2007
    Joanne, after my second dx of ADH last fall, my surgeon put me on Tamox to try to prevent any additional reoccurances. I also have a strong family history of ovarian and breast cancer. As luck would have it, after 6 months on Tamox, I was dx with DCIS and I opted for bi-lat mast with recon/expander. Sometimes taking the medicine to reduce the chances is like going to a duck hunt - sometimes you get the duck, sometimes you miss the duck.

    Sheila
  • ginger2345
    ginger2345 Member Posts: 517
    edited August 2007

    I have read that LCIS is going to undergo a name change to eliminate the "carcinoma" confusion. The new name is to be "lobular neoplasia."

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