Guilt and Judgement

DCIS is cancer

Isn't there a push from many oncologists to re-name DCIS? I read somewhere that they want to take the word "carcinoma" out and replace it with "benign lesion", or something like that...I thought it was pre-cancer unless/until it became invasive? Sorry, could have misunderstood....there's so much research and info out there that it's bit confusing.

Hi all:

The earliest paper I have from Esserman et al. suggesting the renaming of DCIS as an "IDLE" (indolent lesions of epithelial origin) tumor is dated October, 2009. The proposal was made almost seven years ago, and has not been implemented. The main problem with the concept is that "DCIS" encompasses a broad range of conditions with very different risk profiles, and as of this date, clinicians cannot reliably identify which DCIS lesions are truly lower risk and would be properly classified as "IDLE".

Layperson reports are often superficial and anecdotal. The fact that a few people with small, low grade DCIS have declined surgery and are addressing their disease with an investigational regimen of endocrine therapy plus surveillance does not speak to the appropriate treatment regimen for the majority of DCIS patients. According to the American Society of Clinical Oncologists (ASCO), in women diagnosed with apparently pure DCIS by minimally invasive biopsy (e.g., stereotactic core-needle biopsy), invasive cancer is reported in 10% to 20% of cases overall, approximately half of which are microinvasive cancer. As of this date, current imaging methods appear to lack the ability to detect either the presence or onset of invasive disease. My own diagnosis of "apparently pure" DCIS (Stage 0) is illustrative; despite the use of MRI in the work-up, I was found to be Stage IA on surgical pathology.

Clinical trials are underway to evaluate other approaches to DCIS, such as active surveillance alone (LORD Trial, in pure low grade DCIS) or neoadjuvant endocrine therapy plus surveillance, but evidence establishing the long-term safety of such approaches is many years away. Accordingly, these approaches remain investigational and are outside of current consensus treatment guidelines, which include surgery at a minimum (see e.g., NCCN Guidelines for Breast Cancer, Version 2.2016).

BarredOwl

I understand what you are going thru. I had my lumpectomy a month ago and my margins came back not clear. I now have to get a second lumpectomy along with genetic tests to see if I can the gene mutation for more invasive cancer. I need additional imaging as well. There was mention that I may need a bilateral mastectomy if the tests come back positive and or if they can't get a clean margin. I also am getting a sentinel node biopsy. I feel guilty for feeling so lost and scared but realize there are women out there fighting for their lives and losing hair and getting sick from chemo. I hope all is getting better for you. You definitely are not alone as I mentioned with feeling guilty. All the best. Alicia PA

Alicia, please don't feel guilty. The hair, it grows back. The sickness, it ends after the chemo finishes. Our breasts don't grow back, and waiting for tests and pathology reports is the worst part. We are all of us fighting for our lives no matter what treatment we are having, and you are one of us.

According to my understanding, DCIS is a heterogeneous disease, and small low-grade lesions may have different prognosis than high-grade extended DCIS. Molecularly and histologically those tumors are different.  As I remember reading Dr. Esserman's publications, she clearly  separates  these two cases, and recognizes the seriousness of high-grade DCIS.

As for the survivor's guilt, I guess we have to compare ourselves to healthy people that are pain-free and enjoy life without a cloud of cancer over them for the rest of their lifes.

Those whom this disease did not touch, are usually do not want to be bothered with our problems, hence the response. In the words of my lovely father, "Why are you bothering me with your cancer? Didn't I have enough of you over the years? This is you problem;  leave me out of it." Others told me that bc is  eithert curable or highly treatable indicating  that they do not want to be bothered either.  

 There are good compassionate people in this world, you'll  meet many of them on this site. This is your crowd now. Please disregard what  people  that are not capable of understanding are thinking, and, please, do not let them  pushing their standards on you.

Those would be the abnormal cells that were necrotizing my breast, right?

Speaking as a person who had to get BMX, chemo, radiation, and Tamoxifen, I can tell you that my only feeling for anyone who needed less is happiness for you.

I don't like to be called a survivor either, but I don't get into it with those who don't understand, it's not worth it. People just want to be able to put a label on it.

DCIS IS CANCER! Please do not feel guilty. You were fortunate enough to catch it at an early stage. I went through the ringer and I guess still am, and I consider it cancer. Don't pay attention to those who tell you otherwise, you need to concentrate on you and your health!