DCIS is the good cancer I'm going to scream!!

I had a radiologist tell me that I DIDNT have cancer.  WTF?  HUH?  Then WHY am I SITTING HERE????  The longer it has been, the more i realize what Susan says, DCIS, ICD, ICL etc....all bad cells...all needing treatment.....none of this is fun, easy, or a good thing.  Thanks for the rant.  I get to have my single MX and SNB tomorrow and if I dont have cancer, then please, tell me now so I can keep my breast,  and move on my merry way.

I have to agree with all.  My dh said I didn't have it, that it was PRE-Cancer... excuse me, but I did just lose part of a Ta-Ta...If it was so Pre, then why do they cut it out???  Yes, Cancer, is Cancer, is Cancer... Pre, Post, LUmpectomy, MX, and so on...

I do have peace about the surgery. It has been one month.  I picked up a 4 year old that didn't want to come to school today and said, wow, no pain :-)  so I guess I am recovering well.

Hang in there.  Do what you have to do.  This is a great group.

Deidre'

A diagnosis of breast cancer is earth-shattering and life-changing.  It's something that no woman should ever have to go through and it's not something that I would wish on any woman (or any man). DCIS is breast cancer and and anyone who says that it's a pre-cancer can take a flying leap.  

Women diagnosed with DCIS have to go through the same awful diagnosis process as anyone else diagnosed with BC.  We have the biopsies; we wait and wonder and worry about what the result will be.  Will there be cancer?  Will there be invasive cancer?  Once the diagnosis is in, we struggle with treatment decisions just like everyone else.  Then we have the same surgeries as anyone else diagnosed with BC. In fact because DCIS tends to spread out more than invasive cancer does, women with DCIS are more likely to require mastectomies.  For many of us (I count myself in that group), this is devastating.  And it affects us for the rest of our lives. 

So I get furious when doctors (or anyone, for that matter) downplay the seriousness of DCIS.  But I also understand that DCIS is a pre-invasive cancer.  It is the only breast cancer that is not life threatening (assuming no invasive recurrence).  The simple fact is that if you're going to be diagnosed with breast cancer - which is a horrible situation - the best possible case is to catch it early.  And DCIS is the earliest stage of breast cancer. 

So while there are a lot of similarities in the experiences of women with DCIS and women with more advanced breast cancer, there are also differences.  If you have DCIS, you don't have to worry about your oncotype score and whether you'll need chemo.  If you are HER2+, you won't need Herceptin, a wonderful but very toxic drug (there is a clinical trial underway but I understand that the dosage is very different).  Most important of all, you don't need to worry about your mortality.  

While you are going through your diagnosis and treatment,  it's certainly hard to appreciate your "luck" (which is a bad word, really)  that your breast cancer was caught early, but once your treatment is done, you might find that you do understand this. I hope that all of you come to this realization.  My diagnosis was one tiny step beyond DCIS - I had a lots of high grade DCIS along with a microinvasion of IDC, which means that my cancer was the earliest possible Stage I breast cancer.  I'm five years out from my diagnosis and there isn't a day that goes by that I am not grateful that my cancer was found at such an early stage. It took me a bit of time to start to feel this way but honestly, it didn't take me that long after my treatment plan was in place to appreciate that within the world of breast cancer (which is a world I would wish on nobody), I was in just about the best possible place. 

So scream at me if you will. But just as I hate when DCIS is downplayed or called a pre-cancer, I also worry when those who are diagnosed with DCIS don't come to understand and appreciate that a diagnosis of DCIS is in fact a whole lot better than being diagnosed with a more advanced BC.  It may take some time to come to this understanding, but I think it's an important understanding to have.  

I had a small IDC tumor and two larger DCIS tumors (stage 1b). I guess a part of me feels like I belong here as well as the IDC forum. It all happened so fast. Dx'd Jul 21 2010, a boatload of tests (with no waiting thank god), BMX Aug 30, 2010, and then I take a little pill for five years (arimidex). I do consider myself lucky that I didn't need chemo or rads. I can feel that way now because enough time has passed and it has become easier for me. I was at the same place many of y'all are at and I hear your anger. I felt it, too, several months ago. But I can't help but think how it could have been worse.

I took a break from here and got cancer out of my mind, and now I am prepared to be of support to those who need it. I didn't have that strength before. Don't get me wrong, I love this site and I don't know what I would have done without it during those rough times.

People who downplay the seriousness of DCIS or any other lower staged cancers show their own ignorance, insensitivities, and their own limitations to comprehend. Let's not make it our problem. It is most certainly theirs. There will always be people like this out there and we can't change that.

Please know that although cancer sucks at any stage, it does get easier. Take breaks from it, get it out of your mind, and give it time.

Mindy xxx

Well call me a fool, but as I sit here with my missing breasts, uncomfortable expanders, I do feel damn lucky. It could have been so much worse. I read what some of my sisters here go through, with more advanced cancer. Yes I feel lucky, damn lucky!

I too was told I was lucky that my cancer was found so early...that it was small..but 'regular run of the mill cancer' with lobular features ...and in all honesty, I felt lucky..blessed that it was 'only' going to be a lumpectomy, radiation and tamoxifen. Perhaps it was just my way of dealing with it all. I have not felt angry except when I met my first surgeon- who did not in the end have anything to do with my surgery- and he said I would still have great cleavage. How was that supposed to help me get over the first hurdle of "we are going to perform surgery and you are going to have radiation...maybe chemo..time will tell".WTH? When people tell me it is a gift to my life and really does give me perspective, well...then I feel annoyed. I could hav elearned these lessons without having to lose part of my breast and 7 lymph noded, you know? however, I still feel lucky because I am alive, I have recovered quickly, I am living my life and hoping that all I do combined with a bit of lady luck, will be enough.

'Good cancer' be damned, I say!..."No..oops our mistake. You don't have cancer"...now that would be the good kind of cancer!

Fair enough...my oncologist and radiologist took my cancer very seriously and the surgeon who did the surgery was supportive and encouraging of my going for a lumpectomy rather than a masectomy because of the size etc. but she was also open to a full masectomy if that was the way I had chosen to go...I also feel blessed that  my annual mammogram found the cancer at an early stage and that my prognosis is excellent. Cancer is cancer...but I am grateful nonetheless.

My family physician's nurse told me, "It's really nothing."  I lost both breasts.  The general surgeon told me that he didn't know when he had ever seen a breast so full of cancer.  It was high grade, aggressive and was microinvasive.  Nothing benign or "good" about DCIS.

I LOVE the "Cancer Lite" expression!!!  I think Ill use that one!

Ya know, a lot of people started to make me feel like 'it wasnt that bad' and I felt like I was almost apologizing when I was telling people about it.....but looking down at my new scars and feeling the tighness on my chest, I know they were the wrong ones!!

Beesie put it very well.  As someone who has had both DCIS (10+ years ago) and the "real" thing more recently, I can say that in spite of the numerous biopsies and surgeries (including mastectomy) for the DCIS, I felt very lucky back then and was wishing that this time around it was "only" DCIS again.  While the procedures are just as uncomfortable, there is a significant difference between being told that you have a non-invasive - thus non life-threatening - cancer and invasive cancer.  In fact, it really bothered me when anyone would call me a survivor for having gone through DCIS. There is virtually no threat of spread or mortality with DCIS, as opposed to with Invasive breast cancer. It is never pleasant and always scary to deal with something like cancer, be it DCIS or invasive, but the fact is, those with DCIS are very lucky when compared to those with invasive breast cancer. No one wants to get any kind of cancer, but if there is something growing in the body that has the potential to develop into something more serious and deadly, then we should consider ourselves lucky when it's found before it has the chance to do so.

momto4ct, I appreciate that you know that DCIS is a better diagnosis than invasive breast cancer but unfortunately I don't know that I agree when you say "I think that everyone with a DCIS diagnosis KNOWS that it could be a lost worse". In fact, studies have shown that women with DCIS greatly overestimate their risk; in a 2008 study, 28% of the women diagnosed with DCIS feared that the DCIS would spread to other parts of their body (something that DCIS cannot do). Every day, women make treatment decisions based on these fears and these misconceptions.  

In fact, it's because of these misconceptions about the risks associated with DCIS and the resulting anxiety that the National Institute of Health has tabled the idea of removing the word "carcinoma" from the name "DCIS". Personally I think that would be a huge mistake because it could lead to the undertreatment of high risk cases of DCIS and that in turn could have a drastic impact on some women. Frankly to me the idea of changing the name of DCIS in order to ease women's minds is ridiculous and insulting to women.  Rather than do that, I think the onus should be on the medical community to better explain what DCIS is, and what the risk levels are.  That has to be an individual discussion between the doctor and the patient because DCIS is such a heterogeneous disease, with some cases being low risk and other cases being high risk.  But overall, the simple fact is that DCIS does not present the same risks as invasive cancer and that needs to be better communicated to all patients with DCIS. 

That's why although I agree completely with your comment that "hearing any diagnosis of "you have cancer " is not easy to hear and no one is lucky to hear that. No one with a BC diagnosis is lucky!!" whenever this topic comes up in the DCIS forum, I am careful to remind those with DCIS that in fact it could be a lot worse! 

Risk perceptions and psychosocial outcomes of women with ductal carcinoma in situ: longitudinal results from a cohort study.

NIH Consensus Conference Urges: Defuse Fears of DCIS at Diagnosis 

lisa, I'm so sorry.  Your situation shows why the word "cancer" shouldn't be removed from the name DCIS.  DCIS is breast cancer and needs to be treated as such, in part because you never know what you might find. The idea that DCIS may be reclassified as a pre-cancer is frightening because without question, it would lead some women to forgo treatment. And that could be hugely dangerous. But your example also shows that the risks after being diagnosed with invasive cancer (as you were once you had the BMX) are different than the risks after being diagnosed with pure DCIS. 

For a long time, I felt guilty because I never went through chemo and radiation and the other BC survivors every year at Komen (the race - we hand out t-shirts for Survivors) had--they'd talk about their treatments and what all they had and were still going through.  I'd just nod my head and listen, my gel implant breast silently throbbing in pain.  Still, many of them are now living pain free, with their breasts intact.  Me?  While I had no chemo, no radiation, I did undergo a mastectomy and have endured 24/7 pain since 2001 when I first went through surgery.  I've had reconstruction, a redo on the reconstruction due to capsular contracture, an infection that threatened me with a redo on the surgery (and probably my life--I was just so out of it on pain meds I didn't realize how serious the infection was). 

While I am grateful to be alive and grateful I didn't have to endure poison being injected into my body to fight the cancer cells, I have fought my own battles and continue to fight them.  Cancer is cancer.  I'm not going to diminish anyone's battle with cancer, and the first jerk who tries to tell me I didn't have cancer may be listening to a litany of my experiences from the last 9 years.