Saturday, April 10, 2010

Martina Navratilova diagnosed with DCIS

By now, most of you have heard the news that Martina Navratilatova was diagnosed with breast disease.

I avoid all sports like the plague that they are. Anybody who enjoys spending time in front of a TV eating chicken wings while they watch people play with balls is a mystery to me. (Hi honey!) Therefore, I know nothing about this woman, except that she played tennis and possibly made money doing it. If my Jeopardy question was "Who is Martina Navratilova?" I'd have answered "What is a tennis player?" but if they asked me if she'd ever won a tournament or made a perfect score of Love, I'd have had to switch categories to "Beers from Around the World."

So, when I got a google alert with her diagnosis, I almost ignored it - after all, she's no Maura Tierney - except that the blurb in the article actually said that she was being treated for pre-cancer.

The exact quote was, "DCIS is the most common type of non-invasive breast cancer and is sometimes referred to as Stage 0 or precancer."

Now, you cancer-free folk don't know this, but calling DCIS "pre-cancer" is sort of a controversy in Breast Cancer World, and I'm likely to get hate mail for even mentioning it. People are very protective of the dangerousness of their disease and believe "we are all in this together."

Except that we are not.

You can't compare the experiences of a woman with DCIS with the experience of a woman with Stage IV breast cancer. I've heard people try, and I understand that the fear seems the same to them, but it's unreasonable, irrational fear. You don't die of DCIS.

What makes cancer dangerous - what makes cancer CANCER - is that it is invasive. Which DCIS isn't. Invasive means the cancer cells aren't trapped in one spot, but have spread to other cells within the area where they arose, dancing and mating, and their uncontrolled free spirit have given them the ability to spread throughout the body.

Which uptight, confined, rigid DCIS cannot.

Cancer, by definition, can kill you. DCIS? Not so much.

DCIS (Ductal Carcinoma in Situ) cells don't behave like invasive cancer; they don't have the capability of spreading and growing in distant body parts. They are abnormal cells that line the ducts of the breast, but they will never spread. It isn't life-threatening and has a nearly 100% cure rate. Proposals have even been made to change the name to remove the word "carcinoma" from this diagnosis. However, the media has not picked up on this at all, preferring to jump on the pink ribbon bandwagon and promote cancer fear. So seeing it mentioned as pre-cancer in this USA Today article startled me.

Way to drop the ball on the fear-mongering, USA Today.

Now, before you stop reading and pick up your poison pen to write me hate mail saying I'm insensitive to the suffering of women with DCIS, let me say this:

I think it's the hardest breast disease to deal with.

Aside from Stage IV, which goes without saying.

You see, the unfortunate thing is sometimes DCIS changes character and becomes invasive. And, nobody knows why, how, when, or if. A woman might live her entire life with DCIS in her breast and never know it. She might get DCIS that disappears and never realize she had it. But sometimes a switch turns on and it becomes invasive cancer that can kill. Nobody knows when/why/how or to whom this happens.

So, it has to be treated as if it was early stage invasive cancer.

Along with my 3.4 centimeter largest invasive tumor (out of 3 total), I also had 4 centimeters of DCIS. Did my invasive cancers arise from my DCIS? Maybe. Likely. Nobody knows.

No question: a woman with DCIS has to make an agonizing decision. While she will escape chemo, she may have to take tamoxofen, she may have to have a lumpectomy, she may have radiation - and she may even have to have a mastectomy - knowing she doesn't have cancer, and knowing she never might. Worse, unlike the women with the BRCA genetic mutation who have a 60% chance of getting cancer, she doesn't even know her odds of it turning invasive. It might be zero or 100. There just isn't the data to tell yet.

And yet, she has to take that leap and cut her breast off.

At least with me, I had no choice. It was clear cut. Mastectomy and chemo, or eventually die.

That's not the case with DCIS, and that is why, I believe, so many women don't want to take the word "carcinoma" out of a DCIS diagnosis, and why it is so controversial in Cancer World. It's why many doctors don't want to change their wording either. You need that word to make the decision okay.

As mammography screening gets better, more and more woman are being diagnosed with the disease. What is not known is if there are more women than ever before with it, or if it just went unnoticed and women lived full lives with it, like many men do with prostate cancer.

Much more studying needs to be done on this.

So, Martina, who technically never had cancer, and who never had a disease that could kill her - who only had an increased risk of getting invasive cancer - she is going to become the new poster woman for breast cancer.

I'd much rather she use her platform and status to highlight the difference between DCIS and invasive cancer - not to denigrate DCIS, but to help solve the problem. I'd like her to educate people by explaining she didn't have a dangerous invasive cancer but still had no choice but to have disfiguring cancer treatment. I'd like her to use whatever fund-raising skills and name recognition she may have to promote research that will find out which and why some DCIS cells will become invasive and some won't, so women don't have to go through barbaric treatment unnecessarily.

Someday, I'd like the Jeopardy category involving her to be "The tennis player who helped prevent the most mastectomies?"

"Who is, Martina Navratilova?"

In case you are interested here are a few links about DCIS from legitimate sources: description of DCIS

University of San Francisco

Dr. Susan Love

Abstract from the National Cancer Institute on Medscape

Health Central


  1. Very informative and and educational post. I wish more people would understand the difference between DCIS and invasive breast cancer. I also hope that new and aggressive scientific studies will continue to be funded in the future, but unfortunately, I feel that timely and vital research endeavors will most likely be pushed to the bottom of the priority list in health care. Time will tell.

  2. I had a bilateral mastectomy to treat DCIS (good decision and no regrets) and I wish I could just hug you right now.

    Thank you for saying what needed to be said and thank you for saying it so well.

    Of course I miss my breasts, but I did not have breast cancer. I did not have chemo and I am not taking drugs.

    Most importantly, DCIS can't kill you.

    These differences are huge. Especially the part about dying.

    I'm not that old and there are women younger than I am with stave IV breast cancer: women who are smarter, nicer, and more accomplished than I am. There are women who know that their young kids won't remember them.

    We are not all in this together. My life goes on unaffected and I'm more grateful than you can imagine.

  3. Well said - both the blog and the comment above.

  4. Thank You. I am so tired of breast cancer poster people. Like DCIS is some kind on invite to the breast cancer sisterhood. Like you, I had DCIS and two micro-invasions. I remind myself everyday that Stage I is very fortunate. In addition, I decline to wash myself in "pink". I am tired of all the breast cancer attention seeking I see and admire the people I know who deal - everyday and move on with their lives. Stage 0 and Stage I is not IV or IBC and I firmly feel that there is an appreciable difference. I refuse to get stuck in my diagnosis. I do what I need to stay as healthy as possible and I intend to live each and every day as happy and productive as possible. The notion that this diagnosis makes one a "hero" or a "survivor" leaves me cold. I am not my missing boob. I am not my reconstructed boob. I am not a boob!

  5. It is so disheartenting to read things that start off along the lines of "my cancer is worse than your cancer." The divisiveness serves no purpose. I think it goes without saying that nothing is the equal of being diagnoised with stage IV of ANY type of cancer. Then again, I've never heard anyone say that they were equal. Yesterday I learned of a friend diagnoised with cancer in her leg ---I certainly recognise that my DCIS is not the same fear level or treatment level that she will require.

    I was never told, nor was it implied, that my DCIS was the same as Stage IV cancer or even a Stage II or III. I was specifically told that it needed to take a developmental leap to become Stage I, that I would not die and that I would be fine. But, and this is the big issue, when they completedly the pathology report from my biopsy and the lumpectomy [which found more DCIS than other testing had revealed] it was determined that I had grade 3 DCIS and that it was different than a lesser level. I was specifically told that left alone, grade 3 DCIS would eventually become invasive cancer. That, to me, is the difference and the problem. All DCIS is not the same, yet the treatment recommendations women receive are often the same whether she has grade 1 DCIS or grade 2 DCIS or grade 3 DCIS.

    FYI, if you have DCIS with "micro invasions," you don't have DCIS; you have the first stages of invasive cancer.

    What we don't know is what makes DCIS go from grade 1 to grade 3. Personally, I am troubled when I hear or read about women with grade 1 or 2 DCIS having mastectomies because there is so much that isn't known. Isn't it in the interest of all breast cancer patients that more research go into this topic so that eventually we will know and be able to do something before grade 1 DCIS decides to advance itself through the stages to invasive cancer?

    1. Nothing can be compared to stage IV, that is a given. However, I feel I must share my story to bring some reality to what DCIS is and can be.
      In 2011 I was diagnosed with DCIS after my second mammogram ever at 42. After much deliberation, I decided upon a bi-lateral mastectomy with reconstruction. I really did not want to be 'looking over my shoulder' wondering if this thing would return. I felt the odds would be more in my favor, apparently there are statistics that say it's only a bit better than lumpectomy and radiation as far as recurrence but I felt it was the most extreme thing I could do. Sentinal nodes came out clear and margins were good. After dealing with the effects of mastectomy and reconstruction, I got my final implants and was on my way to living my life. Never really worried about the cancer returning. My prior breast surgeon never said I should return every 6 mo. or year. There was nothing to mammogram, why would I go back in? there's no breast tissue left. would be my reply to family members who bugged me about getting checked again.
      Then I started having some breast pain on the side -same area as the DCIS was. Didn't think much of it. Although it's been 3 years, I thought my muscles and things were getting all healed, or scars were pulling. It was off and on. Then after feeling it more constant in April 2014, I felt the area alittle closer and realized I felt a lump. I decided to go to the new breast surgeon who took my old surgeon's place. Yes, she felt the lump too. She did an ultrasound right there. Yes, it showed up. Hmmm....maybe it was fat necrosis she said. Besides, "cancer is not usually painful" she said. Ordered the MRI, it lit up. Hmmm... fat necrosis can light up I was told. Surely this thing couldn't come back. It only happens to like 1-2% of women who had the DCIS like I did and the double mastectomy I had.
      Then I had the biopsy and everything changed.
      It was cancer. No longer called "DCIS" but invasive this time. Yet there were DCIS cells there. Stage 2 and Stage 3 (like last time). I was shocked. Blind sided, really. How could this happen? I did MORE than they told me to do!
      Now I face a second surgery in a few weeks because the first surgery did not get all of the cancer cells, which by the way had way more DCIS scattered around than they thought and the tumor was sitting in its midst. HER2 positive ER/PR + '
      When I told my oncologist I didn't want chemo, after all it was early stage, under 1 cm and not in the lymph node taken out, she looked at me and said "you NEED chemo"...this is aggressive and will likely recur again if you do nothing. Only next time we may be talking Metatsis and being on chemo and all that goes on with that which Ann always explains beautifully here.
      Basically she's saying the results of doing nothing will be far worse than the effects of the 'poison of chemo' (as I put it to her). Yes, she is right. point is...yes, I ONLY had DCIS in 2011. If I listened to some of the talk out there, I might have done nothing because it "wasn't really cancer"... but I decided to do the most drastic to avoid a recurrence, and I got one anyway. This nasty thing decided to somehow come back, and nobody can give me an explanation of how. I do agree with the previous poster that it also depends a lot on the grade of the DCIS. Mine was grade 3-comodeo necrosis. Now it is still grade 3 with HER2 positive. Don't ever underestimate the power of cancer to be stubborn... I believe I am more stubborn, but one cannot be too cocky with these things. It would have cost me more time. Thank God I did have the pain or I might not have checked that breast area and found the lump. I was never told to continue to do self exams. I never worried because I thought there is no breast tissue left. Wrong. There always is some left there.
      thanks for listening to my story.

      Debbie in Colorado

    2. thank you for sharing your story..i have DCIS grade 2 and im about to do a lumpectomy. I had changed my diet etc..holistic interventions after my diagnosis in January 2014..but it grew 2 to 3 millimeters which is very slight. but its a change. so it will become invasive cancer a 100% I was told. I know I wont die immediately from DCIS..of course. the issue is its a time bomb. you don't know when or if it will go off. when you get cancer of any type including DCIS, even after treatment you have a stress in the back of your head when will this get me? its the coping with that stress that is overwhelming at times. that's how I feel about it.

    3. Wow!!! Thank you so much ladies. I got diagnosed DCIS. I'm still working things through and I was not liking all the belittling side of my situation. I was told to be at ease since it's not invasive. I'm fine with that. Because the microcalcifications are all over my lest breast, I was told I should get a masectomy. I'm still having a lot of ups and downs about that. Your shares are giving me the strength and guidance I need. My mother had stage two cancer and after her surgery, her pathology showed it was an aggressive kind that we were lucky to get her treated for. She had to go for aggressive chemo and radiation. At this point I feel DCIS if any kind should not be treated as a joke. Should not be said that it's not a serious disease merely because it is not full blown invasive cancer. It's an opportunity to bring awareness of early detection and that we should demand more research for future generations. My fight and feelings don't compare to stage IV but should not be scoffed at. T

    4. Diagnosed with DCIS in March 2106: Mammogram, ultrasound, stereotactic biopsy, and an MRI. Definitely DCIS. Thought I was overdoing it, but I opted for bilateral mastectomy last week.Lymph nodes came back positive. My appointment with the oncologist is next week. DCIS won't kill you .... as long as that's all it is. Diagnosis is not a perfect science

    5. hi lourdes flores I just got diagnosed monday for dcis and im scared out my wits!!!! I just wanted to talj to someone about this disease and your post is the most recent one.

  6. I have mixed emotions here because something very important has been left out of the article. It is not the patient who is fearful it is the doctor's.. better education of the doctors to understand that DCIS is pre-invasive is crutial. How do I know this - I was diagnosed with DCIS and I wanted to handle it with removal and "watchful waiting" my phone started ringing off the hook - several doc's that I had seen didn't want me to do this and after 2 weeks of this I went from approaching this as a pre-invasive (so safer) to being scared out of my wits by the very people who were suppose to help me! I ended up with a bi-lateral mastectomy with reconstruction even though I was BRCA neg, and the lesion was small.. So it's time to stop blaming the patient for their irrational fears and start educating doctor's to the potential risk (or lack thereof!) of DCIS.. By the way my insurance company now has me catagorized as having had CANCER - do you think I will be able to raise my life insurance with this on my records.. It is a very complex situation and one that needs to be handled gently.

  7. Oh, Ann. It makes me sad to see you give such a simplistic and inaccurate explanation of DCIS.

  8. Anonymous @ 12:40 pm - I agree with you about the watchful waiting. It is starting to happen and as digital mammography and the new sonogram techniques come into play, I think it will become the norm as it is with prostate cancer. But for now, I think it's better to be safe than sorry. It'll all be different in a few years. For all of us.

    Anonymous @ 6:13. Not only did I get this information from my own surgeon, but I followed up my blog post with legitimate sources for my opinion. But, this is a blog, it's all opinion and I allow anonymous comments to facilitate discussion. I would be happy to hear where you think I went wrong or was simplistic.

    I'm not unsympathetic, I did, after all, say it was the most difficult decision to have to make and that was from the heart.

  9. I am happy to give you two significant reasons your analysis is both simplistic and wrong:
    1. You fail to take into consideration that DCIS comes in different grades and that the grades make a difference. Treatment for grade 1 DCIS is NOT the same as with grade 3 DCIS. Martina was diagnoised with grade 3 which is considered one step below invasive.
    2. You fail to take into consideration the number of women who are told they have nothing more than DCIS --because nothing else shows on any test--but who are found post-surgery and post pathology to actually have invasive breast cancer. Micro invasion is still invasion and NOT "just DCIS." Do you think those woman are not entitled to think of themselves as having breast cancer? And what if they had just waited? The one thing that is known about all cancer is that early detection is key to surviving.

    I'm sorry you have breast cancer. I'm sorry anyone has breast cancer.

  10. Anonymous 8:29 AM: Here's another problem with the grade vs treatment style.. I had my pathology slides reviewed by Vanderbilt and they came up with a Grade 1 and my local pathologist came up with Grade 3 - the grading system must not be a very good indicator or there wouldn't be such discrepancy IMO. So do I trust Vanderbilt (who has the strongest pathology history as opposed to my local pathology) or do I trust my local pathologist. Also, there is the possibility that we can see all three grades within one sample - showing a progession and yet they (medical community) do not focus on this!

    Ann: you didn't mention MRI's and that too will help with the watchful waiting.. My DCIS was not found on regular, digital or sona - only the MRI saw it!

  11. I've recently had a mastectomy for DCIS. I don't compare my breast cancer to others. I have endured several painful tests and surgeries, along with fear, worry, and sadness, throughout this entire experience. As far as I'm concerned, the "C" in DCIS stands for carcinoma or cancer. I have breast cancer. No matter how you slice it, I have lost one of my breasts to cancer and I refuse to allow anyone, including you, to minimize what I have suffered and lost.

  12. Actually Martina Navratilova's description on TV interviews was accurate and well informed. Too bad that you are too ignorant to realize that but enjoy being provocative even while clueless. Maybe it is not you but just the effects of chemo.

    The statement that, "People are very protective of the dangerousness of their disease" is just plain silly.

  13. re: "Martina Navratilova's description on TV interviews was accurate and well informed."

    Really? I found, "my personal 9/11" to be somewhat dramatic for a condition that can not kill you.



    You got this information from your own surgeon. A surgeon who, as I recall, is a general surgeon - not a specialist in breasts or cancer, or breast cancer or is affiliated with a major cancer hospital. Perhaps more importantly, you were diagnosed with more advanced disease and your treatment, quite rightly, focused on taking care of that. So I wonder how much time you and your doctor spent discussing the nuances of DCIS. Two minutes? Five minutes? Ten? Frankly, I hope it was two because were I stage II rather than stage 0, I wouldn't want to waste precious time discussing DCIS.

    As to your blog post:

    You write: "The exact quote was, 'DCIS is the most common type of non-invasive breast cancer and is sometimes referred to as Stage 0 or precancer.'"

    I doubt that's the exact quote. I'd bet you decided to bold the word, precancer, because that's what you want to emphasize. The original statement was technically accurate, your repetition and change, bolding with word without indicating that as YOUR change, is already showing bias and somewhat misleading.

    You wrote: 'People are very protective of the dangerousness of their disease and believe "we are all in this together."

    Except that we are not.'

    It seems to me that you're implying women with DCIS are 'very protective of the dangerousness of their disease.' I have to disagree. I am fully aware, and extremely thankful, that I caught his nasty crap early, it did not spread beyond the duct, and that I will not die from it, at least not unless there's an invasive recurrence. I'll set that issue aside for the moment. I am not the least bit protective of the dangerousness of my disease. I am protective of people respecting the hell I am currently enduring in treatment, the permanent disfigurement, the long term side effects, the time, the energy, the money, the fear, the anger...all that stuff.

    I do believe we're all in THAT together.

    When I go to my rather expensive plastic surgeon, I get the hefty Cancergirl discount. I'm not charged the same rates as women who want implants just because they want bigger, firmer, whatever. Should that not be so?

  15. Continuing....

    When I go to the Drs, which is ALL the damned time, there's a really big CANCER CENTER sign. Do I not belong inside?

    Should I demand my oncologist refer me to a different specialist, after all, I might have had malignant cells but they weren't Cancer....?

    When I show up for my radiation treatments, which you will not have, I see the women with their hats and scarves and wigs - my heart aches for them and I feel sooo grateful to not have to deal with THAT on top of everything else. But there I am, in my robe, slathering on my lotion, just like all the other girls.

    There is so much more shared experience than there is difference, and yet you say 'we're not all in this together.'

    Sure, there's difference. When I go out for the not-allowed-anymore drinks with my friend who is stage IIIB, she reminds me that in her world of support groups, it's all about 'how soon am I gonna die?' not 'how bad treatment sucks' - I hear that loud and clear.

    But where do we draw the line? 5 year survival for stage 0 is 100%. 5 year survival for stage I is also 100%. It starts to decline below 100% for stage II, III, and of course IV. So, with a 100% 5 year survival rate, does Stage I not REALLY belong either?

    I think you're the one who's protective of the dangerousness of her disease.

    Maybe you're exposing a common thought among women with more advanced cancer. Maybe all of you really don't think we belong. Maybe you're jealous. Maybe it makes you feel better to make us feel bad.


    I've never heard a woman with DCIS compare her experience to that of a woman with terminal (Stage IV) disease. I don't know where you hang out, but I suspect you misunderstood something. Any reasonably intelligent woman with DCIS fully understands that she will not die of DCIS.

    That said, it's worth mentioning that until a woman has definitive surgery, she doesn't know if she has "only" DCIS. About 10% of biopsy proven DCIS turns out to have an invasive component on final pathology. Therefore, it seems perfectly reasonable to be scared until you know you have "pure" DCIS - after the "real" surgery and after the path report is in.

    If you pull the short straw and there's an invasive component, all the invasive rules apply. But they're irrational to be frightened while your fear is not?

  16. Continuing....

    For those of us who are lucky enough to be confirmed as having DCIS and nothing more, there's the recurrence issue. Of DCIS which recurs, 50% is not found until it has become invasive. But we're not allowed some measure of apprehension?

    If we're not allowed any fear whatsoever, as you suggest, then please explain the difference between the mindset of invasive women. You're diagnosed, you're treated, hopefully there's no evidence of disease, and you worry about recurrence. We're ALL worrying about recurrence. We ARE all in this together.

    You can argue that what you're worrying about
    is mets and not recurrence. OK, I'll buy that, but with the caveat that mets is just another stop on the continuum. If you've been diagnosed with invasive cancer at all, you're worrying about mets. If you've got pure DCIS and are worrying about mets, first you'd have to get the bad news of an invasive recurrence, so yes, it's a step removed. But it's certainly not impossible.


    Not entirely true, they can spread throughout the ducts, but more importantly....

    You said:


    You've just contradicted yourself. Suddenly, it's not that DCIS can never spread, but that DCIS can and does morph into invasive cancer.
    You make it seem as if it's uncommon and completely mysterious. I'd suggest while much does remain unknown, there are many known indicators of who, and how quickly. There are subtypes of malignant cells, some known to be more aggressive than others, which leads to the grading system. No, it's not known with 100% accuracy, but a woman with aggressive celled DCIS is far more likely to develop invasive cncer than have it spontaneously disappear.

    There are probably reports of invasive cancer that spontaneously disappeared too. But you don't mention those.

    Die with DCIS you didn't know about? Sure, but you can also die with invasive cancer you didn't know about. If you were hit by a car a year ago, you'd have invasive cancer on autopsy. I don't see what that proves.

  17. Continuing...

    You say: "[A woman with DCIS] doesn't even know her odds of it turning invasive. It might be zero or 100. There just isn't the data to tell yet." That's just misleading, As I discussed above, while it's not known with certainty, it's also certainly not the crapshoot of a risk anywhere between 0 and 100.

    Hypo: 6cm+ grade 3 DCIS w/comedonecrosis. No one's going to put that risk anywhere remotely close to zero and a hell of a lot closer to 100.

    You say: "You need that word to make the decision okay." Maybe. And removing the word may make more women choose to not treat it, allowing it to progress to invasive disease. I also prefer leaving the word in because it gives me some dignity when I go through treatment. Otherwise, what am I left with? I'm having cancer treatment but I don't have cancer. Hence, I must be an idiot? I'll take pre-invasive cancer as a description. That works for me. The cells were malignant.


    You leave out an important alternative - what if more women are discovering their disease earlier, before it had a chance to become invasive?


    That sounds like jealousy. Obviously, you're blogging and presumably want to get paid and maybe get famous and maybe become a professional Cancergirl. Martina had to join the club you don't think she deserves membership in. And rather than keeping it private, she's going public and encouraging women to get screened and try to catch it early. Her motivations are probably much like yours, except that she's already rich and famous. From what I've heard, admittedly secondhand, she's been pretty good about making the distinction between DCIS and invasive disease.

    As far as I’m concerned, when they do figure out DCIS they'll have basically cured cancer. And anything, and anyone, who can help push that goal forward is fine with me.

    In the meantime, I'm happy to share research dollars. IMO, money should be thrown at things which may be helpful to Stage IV women, as well as all women with more serious disease than I do. Because I think we ARE all in this together

  18. Continuing...

    Oh, I forgot.


    Which uptight, confined, rigid DCIS cannot."

    Invasive means the malignant cells are no longer confined withing a barrier and can spread throughout the body, potentially causing metastases. It's the mets that kill.

    The malignant cells don't "spread to other cells in the area," the cells divide uncontrollably, much faster than healthy cells are supposed to. And those malignant cells travel and continue to divide and the clusters continue to grow.

    I don't think they infect their neighbor cell and make the neighbor cell malignant, so much as they overwhelm by their quickly expanding number.

    "Dancing amd mating and uncontrolled free spirit"? It's interesting that you choose to romanticize your disease, endowing it with playfulness and passion and a love of the arts - but there ain't no mating going on here. It's a cell dividing, no partner needed. No dance.

    "Which uptight, confined, rigid DCIS cannot."

    So you've got dreamy, romantic, passionate cells that dance and f*ck while mine are uptight, confined and rigid? Sorry, it might make for an easy breezy writing style, but it's inaccurate.
    My DCIS cells aren't frigid. They're malignant cells, dividing in the same uncontrolled and unhealthy way as yours.

    I think that's enough for now.

    1. Thank you so much anonymous. I had grade 3 DCIS at 40 and decided on a double mastectomy because my mother had breast cancer twice before her 50th birthday. It is definitely hard to know where to fit in. I have never compared myself to a breast cancer patient who is going through chemo to fight for their life. I do however thank the lord every day that this was found when it was and have endured the pain of 3 surgeries so far as I am still in the healing stages of my reconstruction. I wish people would however stop trying to diminish the choices and pain we have to endure because of this diagnosis. I think we need to start understanding each other instead of judging each other.

  19. Wow Anonymous 11:50, 52, 53 + 54 etc: I think YOU should be writing a blog and by the way I agree with you 100%! Thank you from another DCIS individual who doesn't know where she fit's in the world of "cancer"... wish I didn't have to push anyone over at all but here I am - dx'ed by several doc's who insisted on removing both my breast!

  20. I too have to add a BIG WOW to anonymous...I feel like I've had SO MUCH weight lifted off my shoulders after reading your post :) :) :)

    THANK YOU!!!!! from yet another DCIS individual who is scheduled for a lumpectomy with IORT in 2 weeks. Then 5 additional weeks of radiation to follow.

  21. Wow, Anonymous, THANK YOU VERY VERY MUCH! FYI, throughout the whole routine mammogram (which I didn't even "need" to get because I'm in my 40s with no risk factors) then biopsy, then lumpectomy process, everyone kept thinking it was "just plain old grade 2 DCIS." Well, guess what showed up on the final pathology report? Yup, a little bit of invasive cancer at the end of the DCIS-filled duct! Is DCIS cancer? HELL YES! Do I compare myself to the stage 4 people? HELL NO, I thank my lucky stars that hopefully the 30 radiation treatments have killed any stray cells that the lumpectomy didn't get and that I managed to get out of this awful diagnosis without having to go through chemo. But I'm as scared as anyone diagnosed with BC, doesn't matter whether it's stage 0 or higher -- I went from stage 0 to 1 in the drop of a post-lumpectomy pathology report.

  22. I love you anonymous! Thank you so much. I had high grade DCIS and had a lumpectomy with zero clear margins. I was told I needed a mastectomy so I did. Still not good margins and now I need rads. All this for something that isn't even cancer? Really? I find that so demoralizing. I don't want to be in your little 'club' but here I am. I am 39 and only found out I had DCIS because I had a lump. I had 6.5cm of DCIS in a AA breast surgeon tells me I had a guardian angel. I agree. I would not have had a mammo for several years and at that point it probably would have been invasive. Don't tell me I didn't have cancer.

  23. There is no debate that DCIS is cancer. It is, hence the name Ductal Carcinoma it Situ. Carcinoma IS a type of cancer, just as is carcinoma in situ of the colon or bladder. The debate is how and when it should be treated, not if. Please do not trivialize or condemn the women facing this disease. For many, they face an unknown diagnosis until the final pathology. They fear facing chemo and fear facing mestasis if the pathology shows microinvasions or infiltrative ductal carcinoma. The time line of having this fear is approximately one month. They also face mutilation of their bodies, serious surgeries, and possibly radiation. After, they must deal with toxic medicines which have high risks of their own. Unfortunately, you can not shut off the emotions like a lightswitch once a diagnosis of pure DCIS is made. By dismissing DCIS as non cancer, you may be encouraging women to not seek treatment. Stage 3 DCIS is a direct precurser to invasive cancer. Untreated, it could cost someone their life. I am sure you would not want this on your conscience. Rather than worrying about nomenclature, or who should be suffering more, lets support one another and stand together for a cure! I hope that your treatment goes well for you and pray that your recovery is quick and effective.

  24. But that's the point: there's a huge difference between fearing that something will happen and actually having that something happen.

  25. Anonymous April 20@,7:40, please, based on your argument, no one with Stage 1 or Stage 2 has the right to worry about dying either--the cure rate for people at that point is extremely high.

    Look, this is all riduculous--as Anonymous 6:29am said, emotions do not have an on/off switch and we need to support each other and not quibble over who has the worse condition.

    Whether DCIS by itself [or carcinoma in situ of the colon or anything similiar] can kill you is not the issue. Its still cancer. The fact remains that a woman diagnoised with DCIS has a statistically significant greater chance of being diagnoised with invasive breast cancer later in her life. Moreover, until a diagnoised woman has had treatment for the DCIS, she has no way of knowing if all she has IS just DCIS as opposed to invasive cancer.

  26. coolbreeze - are you suggesting that I should have just watched and waited with my grade 3 DCIS? Really, I should have done nothing until it turned invasive? How exactly would we have known that? I think my husband and 4 kids would not be happy with that plan. I did actually ask my surgeon about that option and she said there was no way to effectively monitor it. My DCIS only appeared on MRI and only 1cm showed on that. In the end it literally went from nipple to chest wall. But, hey, no big deal. I just over-reacted with my mast. God, do I feel stupid now. Thanks for setting me straight. Maybe I should go cancel my radiaion treatments. Maybe you could be my Dr too since most Dr's 'over-react' to DCIS.

  27. I think the defensiveness this issue has elicited on BOTH sides shows how complicated DCIS is. One the one hand, we have someone with invasive cancer basically saying "my cancer is more real than yours," and, on the other we have women making passionate (and often ad hominem) arguments that their DCIS diagnosis is cancer too. It sure feels that way because many women diagnosed with DCIS have to do the same things women with invasive cancer have to do: surgery, radiation, and tamoxifen. Of course, they don't have to do chemo; and that is a HUGE difference. But physicians already know they are basically over-treating some women. The problem is that they don't which ones are being over-treated because they still don't know enough about DCIS. Obviously one day, physicians will look back in amazement at the fact that everyone with DCIS was treated more or less the same, just as we now look back on people once diagnosed with invasive breast cancer (of any stage) who were basically treated the same. But until that happens, we are stuck with a set of disease markers that no one really understands.

  28. I was happy to see that there is discussion here - I hadn't looked at my comments in a while.

    However, it appears some think I am minimizing their diagnosis.

    What I said was this:

    "I think it's the hardest breast disease to deal with."

    And this:


    So, it has to be treated as if it was early stage invasive cancer."

    I see that most of these comments are coming from a breast cancer DCIS forum. I also know that one person who posted their comments had a horrible time and saw dozens of doctors trying to make her decision. She called me numerous times to discuss it and we spoke for hours, and I was always sympathetic to her pain and never minimized her diagnosis. I am not sure I understand why she is so upset with me, except that apparently I didn't validate her own opinion of her diagnosis.

    There IS debate in the medical community about treatment of this disease and many doctors do not consider it a cancer - but they know that it needs treatment. That's why I posted links from legitimate sources showing that it wasn't only my opinion.

    The one thing I'm not doing is saying "my cancer is more real than yours" What I was saying is "if your disease is not considered cancer by medical experts, why should you have to go through such agonizing treatment."

    I know from my friend who posted so vehemently that there has to be a better way than to go through the trauma she did.

    I thought Martina could use her celebrity to highlight that better treatments for DCIS should be funded - just as Revlon helped with HER2 funding.

    Wouldn't you want to know which of you with DCIS have abnormal cells that will remain abnormal and can be left alone, and which must be treated because they will turn invasive? That's what I think Martina could highlight.

    Right now, medicine is doing a slash and burn on any abnormal cells in the breast and that isn't good for anybody.

    I'm sorry if I offended anybody.

  29. Ann,

    Yes. And No.

    Months ago, when we were both first beginning our "journeys," I phoned Ann a handful of times. I have no idea if any of those phone calls lasted more than an hour. I kind of doubt it, but it's certainly possible.

    Yes. By the time I let anyone cut into me, approximately six months had passed since my initial diagnosis and I’d consulted with 9 breast surgeons, 5 plastic surgeons, 2 medical oncologists and 1 radiation oncologist. My apologies to any physicians I might be forgetting.

    During that time I was very aware my disease was not yet invasive with the caveat that there was a 10-15% chance I could find out otherwise on final pathology. Mastectomy was the standard of care for my presentation, but I did not want to have a mastectomy, especially not for a pre-invasive cancer. I referred to it as a "pissant level of disease" which upset some people. If I knew I was dealing with invasive disease, I would not have dragged out the process for so long. I was working and tried to space out my appointments so as not to jeopardize my job.

    At a certain point though, I did begin to worry if I'd waited too long.

    Most of the physicians I saw were not concerned with my taking time to decide on a treatment plan, but some had the opposite view. One, rather dramatically, "read me the riot act" and asked if I was intentionally trying to give myself metastatic disease by putting off the surgery. He gave an example of a patient who had apparently consulted him for DCIS, went off to explore her options, came back to him 8 months later for surgery, and it turned out to be in her nodes.

    My point is that I spent approx 6 months doing my own research and spoke, sometimes at length and over the course of multiple appointments, with some of the most renowned breast surgeons in the country. (I had decent insurance and live in a city with multiple NCI cancer centers.) I stood my ground and fought to understand what I was dealing with and how I wanted to approach it. If a layperson could teach a Continuing Medical Education class in DCIS, I think I'd do a passable job.

    In other words, I know where there is disagreement in the medical community. While most of the physicians have said that I had pre-invasive disease or "very very very early stage cancer" or "the earliest possible stage" or something like that, both my gynecologist and my oncologist tell me I don't have cancer. I want to bitch slap both of them, and have probably told them to STFU.

  30. Continuing...

    One surgeon was incredibly dismissive of me, as though I were wasting her time because I was not as sick as the other women waiting to see her. (I complained to patient relations afterwards and she is no longer with that institution. Mine was not the only complaint.) Another surgeon, as I've said, "read me the riot act." Another insisted that I have a mastectomy, and if I didn't I was being mucho dumbass. Some were willing to try lumpectomy with various degrees of enthusiasm. Some were very pro-nipple sparing mastectomy, others refused to consider the procedure. One thought all the others took way too much tissue when they operated. The others thought he was full of it. Some were vehemently pro MRI. Some were vehemently anti MRI. Some wanted to do an SNB. Some thought it was better done as a second surgery if necessary. Some kept me waiting for hours. Some made sure their schedule ran on time. Some gave me their personal cell phone number if I wanted to call with questions. Some encouraged me to email. Some had me go through their nurses or secretaries and made it basically impossible to contact them directly. One, 3000 miles away, answered my emails in the middle of the night (his time). I bought a medical textbook on DCIS from Amazon - it's a bit outdated and therefore it was cheap - edited by some of the DCIS "gurus." I watched the video of the NIH "State of the Science" conference on DCIS, in its entirety, all three days of it, twice.

    Most importantly, I HAVE the damned disease.

    Yes, it sucked. Learning about it, dealing with it, the endless unknown, the bullshit bickering about is it or isn't it cancer which I mostly think is a waste of everyone's time because shouldn't we be curing cancer rather than arguing about the name, the money and time I spent, the sleepless nights, the nervous diarrhea in the very beginning, the surgery which makes me feel my rack is now my plastic surgeon's creation and no longer my own, my inability to find a bra that fits, the fact that my body isn’t remotely close to being in proportion any more....hell yes, it sucked. Radiation sucks now and Tamoxifen will suck later and then the follow-up screening will suck and it will REALLY uber-suck if this crap comes back for round two.

    Ann, if I remember correctly, the last time we had personal contact was an email exchange in which, I think the term you used was 'nagging me', to have surgery because you were worried I was waiting too long.

    The last ‘impersonal’ contact we’ve had was on a breast cancer support website, in the DCIS area of that website, in one of those threads that pops up ALL too often titled something like "Don't minimize my diagnosis!" or "If I hear one more person tell me I don't have cancer!"...anyway, you stopped by and posted, among other things, that if you were told you had DCIS you wouldn't have surgery until it turned invasive because you're "not a worrier."

  31. Continuing....

    I bring those incidents up because it seems to me that you have a very confused and conflicted view about DCIS.

    Although we haven't spoken in months, I do check your blog every now and again to see how you're doing. I always have. While I wouldn’t really consider us friends, I do care about you and wish you the best. And I am endlessly grateful that I don’t need chemo and happy to see that you've survived it.

    I've never felt a need to post a comment in the past, and only took the time to reply this time because - who knows, someone someday might actually stumble upon your original blog post, maybe even someone recently diagnosed with DCIS who's been Googling all night. Now that you're hooking up with the Bee, you might get even more traffic.

    I was incredibly offended by your Martina piece and felt a responsibility to present a different view. Although I expect most people wouldn't bother reading the comments, if someone did click, I thought another "voice" needed to be represented. Not because you "didn't validate my opinion of my diagnosis" but because you absolutely seemed to be saying "My cancer is more real than yours."

    Perhaps that's not what you intended, but your tone conveyed thoughts like 'we're not all in this together', 'women with DCIS irrationally compare themselves to women with stage IV', 'women with DCIS are overprotective of their disease', 'women with DCIS have nothing to worry about', 'how dare Martina talk about cancer when she doesn't even have it' etc etc etc - I've already covered that ground.

    Your words conveyed that meaning to more women than I, since others have since posted to thank me. I don't know who those women are, and I sure didn't put them up to it.

    And, as I said originally and have since addressed, I thought you were giving a simplistic and misleading view. I tried to forget about it all but after a few days I still couldn’t let it go, so I went ahead and lent my opinion to the mix.

    Of COURSE women with DCIS whose disease will never turn invasive would want to know, just as women with invasive cancer whose disease will never turn metastatic would want to know. Frankly, better than that would be a nice easy injection that would just neutralize everyone's nasty. Or prevent it. Like a measles vaccine or polio vaccine or something. Better yet, something that would give you a nice high for a couple of hours. What the hell.

  32. Continuing...

    Deep inside cancer world, it might make sense for Martina to advocate for DCIS research. But not on Larry King. IMHO, in the general media the best thing she can do is encourage women to have regular mammos (yeah, I know all about how imperfect mammos are). A woman outside cancer world shouldn't be expected to understand the nuances of the precancer debate. 'Get a mammo because you're afraid of breast cancer' works for me. I'd rather be treated for DCIS than stage 1, because chemo well and truly sucks more than my world of shit.

    And, as one of my best friends was recently diagnosed with lymphoma (and I can’t even remember if it’s Hodgkins or non-Hodgkins, hence my assumption that people without breast cancer will have little interest in the nuances of DCIS – but I digress), I’d really like to see a cure for Cancer. Period.

    By the way, medicine is NOT "doing a slash and burn on any abnormal cells in the breast." I had nice, fat, clean margins. For DCIS, that is. But there's LCIS in them there margins. ADH and/or ALH too. No one gives a crap about those, other than recommending Tamoxifen. Does that concern me? You bet it does, but I can't change the fact that I'm dealing with this in 2010 not 2110.

    Your last sentence was an apology, and I accept it.

    May you live long and prosper, and continue to blog about your own disease.

  33. Quote: Right now, medicine is doing a slash and burn on any abnormal cells in the breast and that isn't good for anybody.

    Really?! Everyone should make informed decisions about their own treatment plan, but I prefer not to play russian roulette with my health.

  34. I've just been denied life insurance thru Aetna, due to my history of DCIS and bi-lateral mastectomy (no lymph node involvement). I plan to appeal. Does anyone know of good documentation that I can use to strenghten my case. I honestly feel that the chances of my getting cancer now has got to be very very low (as low as any woman's).

  35. Anon @8:29, you may want to try a different insurance company if that's an option for you. I asked my GP for recommendations before getting insurance. The first thing he said was "avoid Aetna". He also disliked Unicare or as he called it, "you need care, we don't care". He said BC/BS and United were ok, and Humana was good.

    This has been a fascinating blog and discussion to read. Thanks for posting and for allowing the comments, too.

  36. DCIS is not a life threatening cancer. It is a precancerous condition. I'm sorry if anybody gets it, and has to do the radical treatment necessary to prevent true cancer from forming -- whether it be a mastectomy(ies), radiation, anti-hormonal therapies, whatever. But it is not life-threatening, when treated properly.

    And as to the comment of Stage 1 and Stage 2 invasive cancers having a high "cure rate" -- that is BS. Invasive breast cancer is NOT curable. Five year survival rates are NOT cure rates. No one is cured of invasive breast cancer, unless and until they die of something else completely unrelated, with no evidence of disease.

    Also, FYI, DCIS with microinvasion is really stage 1 invasive cancer-- it no longer is pure DCIS.

    Invasive breast cancer is a sneaky disease, that has a habit of recurring years, even decades later. There is a 20-30% chance of distance recurrence even after adequate treatment for Stage 1 and 2. After you develop distant mets, breast cancer becomes incurable.

  37. I was diagnosed with DCIS and LCIS in December 1994. Double mastectomy recommended with reconstructive surgery. Very good doctors but opted to see one more surgeon in Chicago who said no surgery for you, let's watch it. I had mammograms every 3 months for 2 years, then every 6 months, then every year. Never got invasive cancer, lived with this diagnosis for 17 years.

    1. Just came across this blog, and your comment intrigued me, as I want to 'wait and see' , but am being encouraged not to wait too long. What happened at that 17 year mark? Did you end up having a mastectomy?

  38. I was diagnosed in August 2010 with DCIS in both breasts. Two lumpectomies later the pathology indicates low to intermediate grade, non-invasive. In shaping my breasts, the pathology found DCIS in tissue that did not appear in mammograms and MRIs.

    Before I rush into a bilateral mastectomy, is there any other treatment I should consider? Is there any research that indicates it can be lived with under a different treatment plan?

  39. While I certainly hate the fact that Martina had to go through her cancer treatment she does us all a service by who she is and breaking the stereotype that women get breast cancer because they are fat, lazy and ate the wrong kinds of food! FYI: Martina is probably the greatest women's tennis player in history and forever changed the game of women's tennis with her aggressive style of play, fitness regime and healthy eating program. Already the face of AARP, Martina hopes to spread the message to all women to get their yearly mammos so they can be as lucky as she was to find cancer at an early stage. I don't think she is trying to be a cancer "hero."

  40. Wow, I was startled reading this blog and comments. Breast cancer patients typically rally around each other with support...not argue over semantics.
    I myself was diagnosed with DCIS, later to find microinvasion. There IS a debate as to staging...they feel my 5-10 cells of microinvasion puts me at stage 0...STILL. This is Dana Farber, a top cancer institution. I will also add that they DO refer to this as a pre-cancer. So, why is everyone pissed off at each other? Even the specialists don't agree.
    For the record, I certainly do consider myself a cancer survivor, regardless of this debate over words and feelings.
    Let's support each other!

  41. Technology is improving and there are now many more women getting the DCIS diagnosis, remember the tag line Early Detection? It is the point of the whole advance in BC medicine and the push for women to get mammos regularly. To try and catch the BC disease in its infancy before it has spread and to give the next generation of women a better chance at never having to get to stage IV ... geesh! that is the whole reason for this new phenomenon.
    And hopefully at some point the screenings for breast cancer will become quicker easier and doctors will be able to tell which DCIS cells have the potential to become invasive and the potential to metastasize and which ones are less likely. But, we aren't there quite there yet...
    Wouldn't a person who is diagnosed with stage IV any type of cancer wish there had been some test that could have caught their disease at any earlier stage? Isn't this in a way what has happened with BC and the discovery of DCIS? Maybe at some point there will be other super early breast cancers discovered. Should we poo poo these discoveries and make the women who are lucky to catch it an earlier stage feel bad that they are treating something that isn't really cancer?
    What if a person with colon cancer could catch it at an early stage 0 with a screening test, before it metastasized to their liver and/or their lungs? If they could catch it at that stage should they wait/see because they don't really have cancer? I had a friend whose mother died of stage IV breast cancer 5 years ago after a 1 year battle... bet she would have loved to have caught it at stage 0, at the stage that you consider the not really cancer stage... this whole comparison thing is really absurd!! Should this friend of mine,who obviously is getting screening mammos regularly, if she discovers she has DCIS, not treat it, because it is really not cancer? Have you ever wondered if any of these women who are being diagnosed with DCIS have had mothers or grandmothers who have had invasive BC? Maybe that is why they dare call it cancer and they are thankful to have been around at a time to get that diagnosis rather than one with a worse outcome?
    It is the whole point of the early detection push and hopefully the whole mystery of cancer cells will get figured out in our lifetimes with all this new data that the medical community is gathering...

  42. I'm in pieces, don't know what grade I am, dumb struck when told Mastectomy only choice & heard nothing else. I'm not prepared to loose a boob at moment if it's not life threatening, I thought I had cancer.

  43. Anon @ 5:18, I am that woman Googling in the middle of the night. Thankyou.

  44. You see, that's the problem with an article like this! Although I am assuming it was written with all good intent, tha above poster is now not sure what is going on or what road to take...sigh...we ALL must be careful with our words! If an article like this revents just ONE woman from getting needed medical intervention, and a life is lost due to someones personal opinion, that is truely horrific!!!! Although I do agree with most of what the author says, as I have done much research on DCIS, LCIS ect. and am on my own journey...I just would like to say to the above poster...I hope if you are in doubt, you will have gotten a second or third opinion from the medical community and taken your own medical history into account...let's all fight this horrible disease together and if writting about current medical indecision, atleast give women viable options from BOTH sides of the medical view!!! JMHO God Bless all who have to take this journey and may God be with you all!!!!

    1. Please note that I wrote this 3 years ago. It is also not an "article" but a piece written in my online diary of my breast cancer experiences. Anybody who takes it as anything but my musings needs to learn how to research disease much better. Blogs are the way to get personal experiences - they are not the way to get medical information. And, while I wrote this three years ago I am pretty sure I stated that everybody with DCIS must get treated, since they don't know which will become invasive or not.

      Bottom line: if you are making a medical decision, rely on your doctors. Not bloggers. :)

  45. Wow. Late to the party but I had high grade (3) extensive DCIS with paget's disease of nipple. I had mastectomy and margins are "extremely close" I believe .04 mm. They say greater than 1 mm is what they need. So now I am in limbo-no boob and no radiation but my chances of recurrence are not slim. I agree with anonymous. If I had waited longer no doubt I would have invasive. I don't feel free and clear and will always feel nervous about this.

  46. As a husband of a beautiful wife who was recently diagnosed with DCIS grade 3 and is waiting for a second surgery as clear margins were not obtained, I hope that the discussions I've read here and elsewhere bring only one conclusion: DCIS is not the common cold. If offers enough mystery, fear and physical and mental pain to go around. I only hope that more women become vigilant and make life changing decisions based on their research in conjunction with the knowledge of their competent surgeons and oncologists. I know my wife is not gloating about having cancer or pre-cancer. She and I are being as proactive as we can be. One day we may all say that breast cancer is
    a thing of the past. In any case, my heart is with all those courageous women (and men) who are hurting in any way with a breast cancer. I may or may not dress in pink in the weeks ahead but I know that any extra dollars I have after my wife's experience is going to be channeled into viable research to help define this cancer.

  47. Sounds like all the above are YOUNG . Iam nearing the big 80!!! .Would do a DOUBLE mastec. in a minute but don't want to go through surgery. Have this DCIS in one BR. (in 2 places). 70 to 75% of my family (past and present) have and had C. of all sorts. Even children and Gr. children.I live alone ,have few friends left. Most who have gone onto the hospital at my age never came home!!! Wish I could just find an honest soul that would explain what one will go through with this DCIS as it PROGRESSES . Forewarned is forearmed!!!! Yes , I know we all are different w/ different issues and maybe this case will not be the end But it still would help to KNOW something. Doctors are NOT forthcoming .....almost to the point of saying ''.SURGERY IS THE ONLY OPTION"", I'm to old to go through surgeries, been there done that , through life. .
    I pray for you all who have C . Have faith, be POSITIVE,and if its DCIS and your young (!!!!or older!!) get it removed if its not going well. God bless you .

  48. I had dcis 14 years ago - then I had dcis and cancer when I had my masectomy. Because they discovered cancer in the site of the 14 year old dcis. Now I'm having chemo, I also had a lumpectomy, radiation, and tamoxifen 14 years ago. I get my genetic 11 panel Genetic screen next week, after which I face the possiblity of removal of the other breast and an oompherectomy. Then in January come the dermatological tests. I'm still working, but during last week's chemo I got a tripal round of steroids and now I'm fighting an infection. No wonder I'm tired. Cancer is cancer is cancer - what a petty argument - is cancer as bad as ductal carcinoma in situa?

  49. If a person has metastatic breast cancer, is already undergoing cancer treatment and Breast augmentation Dubai has been for the past five years, has regular PETs and CTs to monitor whether cancer has spread anywhere else in her body - why does she need a colonoscopy? I already have end-stage cancer which I'm going to die from, so what would be the point of doing an invasive procedure like that to find more thanks

  50. Thank you, thank you, thank you to "anonymous" above. Ann's response to your first long set of comments was many degrees more humble than her original post and seemed to be a bit like backtracking. The original post was offensive. 'DCIS CANNOT leave the ducts and become invasive cancer. Oh .... unless it does.' Good grief. I have a biopsy next week and surgery soon after. I will remember not to worry or brag about having cancer until the doctors let me know if they found any invasive areas, ok? By the way, I have 12 cm of super concentrated micro calcifications, lots of pain, family history of recurring breast cancer (and all kinds of cancer) and I'm 35 with three young daughters at home. Thanking God I don't have stage 4 cancer, but certainly not going to downplay what I do have. I will be fighting it as aggressively as I can! The worst part was having to tell my dad, who is living with a grade 4 glioblastoma in his brain that will take his life in the next year or so (and makes him miserable in the meantime). Man, I felt so cool when I got to brag to him about having cancer and joining his club!!

  51. I have such mixed emotions reading this post and all the comments there after that have been written over these last four years mind you! :)

    I'll start by saying there are two points that I agree with Ann about, is 1.) DCIS is not the same as a late stage breast cancer dx. Well, obviously, and I don't think any of us out there with it, would ever compare the two. I watched two aunts deal with invasive breast cancer... rads, chemo, surgery... the side effects, the fear, I've seen it. What I dealt with, not even close. Which brings me to the next point that I agree with, that a DCIS diagnosis is one of the hardest things to deal with, and everyone who's posted here, shows how that is true.

    It's "early-stage" cancer.. NO it's "precancerous"... It can't turn invasive, Oh wait.. yes it can. It's over-treated.. then it's not treated enough.. Bottom line is you may get invasive cancer.. you may not. You may get more DCIS.. you may not. You may already HAVE invasive cancer mixed in there that we can't be sure of until we go back in... you may not...So, what are you left with.. Well, this could be as bad as it gets, OR this could just the beginning... (shoulder shrug) Oh, and don't forget to look at your age, family history, and if you've already had biopsies or previous diagnosis of ADH (pre-cancer) because then your risk is even greater! Okay, seriously?? Um, now what?

    I was diagnosed September 4th with my DCIS after a lumpectomy to remove an area of 'atypical dysplasia" precancerous cells that were found. Pathology came back, I had DCIS. (not pre-cancer... now, non-invasive cancer.) As my surgeon said, "this is the one you want to have" as it is still contained. I was told how lucky I was they found it, since if it was a year from now, "it would be a different conversation." Mine.. had micro-invasive cells... So, my options were... rads and tamoxifen for 5 years or bilateral mastectomy with reconstruction. hmm. those are my treatment options..... and I now have a "team" of oncologists.. but you're going to tell me that I don't have "cancer??!! Okay, I don't have a "big"one, and I'm not fighting for my life here... it's super early, and in it's "current" state, it's not dangerous... BUT.... who knows what's going to happen with it and it could turn to invasive, oh and if you get a recurrence..50/50 it will be invasive cancer that time!!! Bottom line, make a decision as you 100% need immediate treatment...

    So for the next month, I went back and forth with my decision, talking to doctors, my family, and just doing a lot of soul searching.. and I decided to have a bilateral mastectomy with reconstruction to treat my "little" cancer and to do EVERYTHING I could to prevent an invasive one. I made a very aggressive decision and I believe 100% I did the right thing.. I have NO regrets.

    Some out there are shaking there heads.. I over-treated.. so ridiculous.. some even think..I didn't "really" have breast cancer. Well, Four women in my family had invasive BC before my diagnosis... one of which had it twice. (one in each breast) I have a very strong family history...(but BRCA neg) and I'm 42 years old. that's a LONG time to cross your fingers and "hope for the best.." Or just wait to hear... "Okay, now you REALLY have it?!"

    My brother was diagnosed with Leukemia (CML) at 25 years old.I watched him literally fight for his life for two years before he passed at 27 years old in 2002. Five years ago my godmother had invasive breast cancer and I watched her fight.. chemo, surgery, radiation.. pretty much a year of her life fighting, and she's doing amazing and I hope/pray everyday that she will stay that way. They didn't have a choice "early-on" I did. I've seen what cancer can do.. and I have a choice to avoid that, why wouldn't I??

  52. Continued...

    Truth be told, I didn't want to deal with that.. I just wanted to be done. Really done and I could do something.. RIGHT NOW while I was healthy! I could do this surgery and reduce my chances of EVER having to worry about this again to almost nothing. I wanted to do EVERYTHING I could to stop this now... Why wait until it was worse? When my three year old son is now 5? 10? 15 years old, and now he'll remember, now he gets it, and he's watching his mom go through chemo/radiation? I know that "maybe" this wouldn't have happened.. but the risk was to great for me to take that chance. I would have never forgiven myself for not doing everything I could have done to STAY healthy when I could have.

    That's the big difference with DCIS is you HAVE a choice. You can do rads/tamoxifen and hope it's enough and that the other breast will be fine.. You can make a huge decision like I did... the bottom line is.. it's so GRAY... and you need to just sit with it all, and go with your gut. I made sure my decision was not fear-based.. I looked at both options in length, did research, talked to people and then sat with it until I knew what to do. Now, four weeks to the day after my surgery, I feel.. relieved. I feel lucky and I feel grateful.
    Four days after surgery my surgeon called me... while the original dx of DCIS was in my right, they found it in the left as well. It was in BOTH breasts when they removed the tissue. It was all non-invasive, thank god, yet it was in both, and if I had decided to just treat what they originally found in the right.. I would NOT have been done. I did the right thing for me, and am completely happy with my decision and yes, I feel I had breast cancer.

    I think of my aunts, one of my best friends mom who is fighting invasive breast cancer again for the 2nd time after being cancer free 15 years, and all the other women/men out there and reading this who had to fight for their lives. They/You are the true warriors. The True Breast Cancer survivors.. I didn't walk your walk, I wouldn't even attempt to say my experience was the same or as difficult or as scary.... it doesn't compare, or come close to being the "same"....However, I did have an experience with cancer, and while My journey was very different, it was very real. My decision was the toughest choice I ever had to make, and I feel just extremely fortunate and lucky that it was found early, and that I was able to do what I did.

  53. Hmm, I think you did not approve my follow-up comment where I updated that my biopsy showed invasive cancer. Just wanted to update *again* that follow up tests on the biopsied tissue showed that my cancer is Her2-positive --- not a good cancer to have. Just wanted to show how fast a DCIS diagnosis can turn into a life-threatening cancer diagnosis. Good thing I didn't relax about the whole thing and "wait and see"!

  54. Hey all! Was anyone told that wide-excision lumpectomy was not an option for cosmetic reasons? I need to have my nipple/aerola lopped off due to Paget's Disease of Nipple and there is a small area of DCIS Stage 0, Grade 3, nearby. I'd rather have that than the mastectomy because I am in the lower-risk category - age 60, no history of breast cancer in family, second spot further away toward chest had a negative biopsy -- just a fibroid or something.

