please stop minimizing my diagnosis

I also was diagnosed with DCIS. My local Dr's all told me it's just "precancer" but we want you to go see some specialists. The specialists I had were very professional and very caring. I still hear those original words in my head though. I had to go through mastectomy, reconstruction, meetings with oncologists, tests, etc...

I was at a fitness camp and the instructor asked if there were any bc survivors and at that point I didn't know whether I should raise my hand or not. Recently I found this web site and am very grateful that I did. It really helps me understand that yes I should have raised my hand! I should not feel ashamed that my cancer was not as aggressive as someone elses. My wish is that none of us would have to go through this. 

Barbie--I coordinate a mentoring program for women with breast cancer.  I'll have to say that after 5 years of doing this I think that DCIS may be the most confusing and difficult diagnosis for many women.  The options are so many and research is changing the choices daily.  While other stages of breast cancer may be more immediately life-threatening the treatment options are many times fairly cut and dried.  Not so with DCIS.  And there's been a radical change in women's reactions (in this country) from doing nothing for something sometimes seen as "precancerous" to having an immediate bilateral mastectomy with reconstruction. 

From San Antonio:

1100] Unexpected effects of reassurance in women with low-risk breast cancer.

Griggs JJ, Corbin K, Weiss M, Shields CG. University of Michigan, Ann Arbor, MI; University of Rochester School of Medicine and Dentistry, Rochester, NY; breastcancer.org, Narberth, PA

Objective: Patients with low-risk breast cancer are often told they have a good cancer. The purpose of this study was to investigate the impact of this form of reassurance on distress and concerns about recurrence in women with ductal carcinoma in situ (DCIS) and early stage invasive breast cancer. Methods: We conducted an anonymous survey on the website of breastcancer.org, a non-profit organization. The survey inquired about disease and treatment characteristics and contained the Positive and Negative Affect Scale (PANAS) and the Concerns about Recurrence Scale (Vickberg, Ann Behav Med 2003). Participants were also asked if they had been told by any of their medical providers that they had a good cancer or favorable cancer Analyses were performed to investigate the impact that being told one has or had a good cancer and feelings of reassurance, isolation, distress, guilt, and concerns about recurrence. Results: A total of 646 participants with localized or regional breast cancer (n = 323) or DCIS (n = 323) breast cancer completed the survey. Being told that she had had a good cancer was reported by 62% of women with DCIS and 32% of women with invasive disease. Among those told they had a good cancer, 59% reported that being told this led to their feeling moderately-to-extremely reassured. A high percentage of respondents (29%) reported feeling minimally reassured by this phrase. Many respondents also reported moderate-to-severe negative responses to being told that they had a good or favorable cancerfeeling moderately-to-extremely isolated (21%), distressed (40%), scared (45%), or guilty (20%). In addition, among women with DCIS, the good cancer message was associated with greater level of concern about recurrence, controlling for age, time since diagnosis, surgical treatment, and mental health (p < .005) Conclusions: Although telling patients they have a good or favorable cancer leads to feelings of being reassured in many women, such terms may also contribute to distress, feelings of isolation, and guilt among many patients who otherwise might enjoy a good prognosis quality of life. Providing reassurance is a complex process. Further research into effective ways of communicating reassurance is warranted in order to minimize distress and enhance quality of life.

Thursday, December 13, 2007 5:00 PM

Poster Session I: Treatment: Psychosocial Aspects (5:00 PM-7:00 PM)

Faith, Happy Birthday!  I'm a 1956 baby too, just a few months ahead of you.

Fireweed, how interesting that they have a study on this issue.  My conclusion from the study is that the message for someone who has DCIS should be a combination message, sort of what Barbie (and the others here) have been saying, but also what Rose said.  DCIS is a breast cancer that needs to be taken seriously and treated as any other breast cancer, but the good news is that it is early stage breast cancer and because of that, it will require less treatment than many other cancers (no chemo!) and it has an extremely favorable long-term prognosis.  I think something like that would be a reasonable message that would get across both the severity of the situation but would also provide reassurance.  Actually, that's pretty much the message that I got when I was diagnosed.

Now if only we can get all the doctors & cancer associations (and I mean all of them, incl. Dr. Love) to stop calling DCIS "pre-cancer".  DCIS is pre-invasive cancer but it's not pre-cancer.   Someone who has DCIS has cancer cells in her (or his) breast. The only difference vs. IDC is that the DCIS cancer cells happen to be still contained within the milk ducts and haven't yet broken through to the breast tissue.  To me, calling DCIS pre-cancer is a lot more concerning (and wrong) than saying that DCIS is "the best cancer to have".

hello again....what the he_ _? i had stage 0 non invasive. after 1 mammatone biopsy followed by 2 lumpectomies followed by bilateral mastectomy and a sentinel biposy of the lymphnodes. i was told they got it all...that i do not need chemo, radiation or tamoxifin? i am currently undergoing reconstruction...started my first fill today....

but i can't help but wonder????????? how do they determine who needs what? should i always be concerned for quick recurrence? when will this end?

i have an appointment with oncologist the 18th...what questions should i be asking??????????? please help

Barbie,

DCIS is cancer and it needs treatment. I'm very tired of the term precancer,it is an error made by out of date health professionals. The national cancer institute calls DCIS cancer, and I am very glad my mammo showed it at an early stage.

Saw my rad onc yesterday, she was awesome, she treated my DCIS seriously as did my breast onc.

Take care,

Karoline 

Pure DCIS is not benign, but it is not malignant. Invasive cancer is malignant. Oncologists should probably give up on the pre-cancer word and just start calling it pre-invasive or a pre-cursor to invasive cancer. Personally, I was OK with it being called a pre-cancer. I suppose I would have felt differently if I had a different course of treatment.

 Beesie - that quote is exactly why I don't have a copy of Dr Love's book. Reading that at the outset of my BC journey had me so upset the book went right smack back on the bookstore shelf.

My path report noted malignant cells and everyone, from my internist who gave me the dx, to the oncs treating me now have called it cancer. Curable cancer, but cancer nonetheless.

One of my hot button issues - right up there with I must have done something to 'cause' my cancer.

I agree

I am 29 and dx in Oct this year with stage 0 grade 3 DCIS. I had a bi-lat mastectomy because of the size of my DCIS and family history. For anyone a mast is a massive thing but at my age I just feel awful. I had a reconstruction but I have no nipples and am badly scared for life on my back and chest.

I asked my surgeon if there were any cancer support meeting groups in the area? She just said bluntly "But you don't have cancer!"

Great Hey! You kind of feel like you are cheating

I just had an wire excision for ADH cells so I am hoping I don't have DCIS or anything else....

However, while I am getting the wire inserted.  The radiologist went on and on about how I should go out and drink champagne this weekend to celebrate.

I am like what r u talking about?

He said cause you found it early. ( Ummm...ok. )  I told him my other biopsy said ADH so hopefully this surgery will prove nothing else.  He then went on and on about DCIS and that it is okay to have cancer ...you just need to stay on top of it.....

I just about decked him....had my boob not been squished in mammo at that time,,,it would not have been pretty for him!!!

I'm here with a slightly different perspective.  Was diagnosed 4 1/2 years ago, had good margins on the first try so no re-excision, small, intermediate grade so no radiation and my doctor said in my case the risks of Tamoxifin outweigh the benefits.  I guess you could say I have cancer "extra light" or maybe cancer "extra lucky."  Yet not a day goes by when I don't worry about recurrence and not just local recurrence but distant.  From the day I was diagnosed until I got that first Lexapro in me 5 months later I cried daily, sobbed is more like it.  My doctors were totally perplexed as to why I fell into such a deep depression when it was caught so early and thousands of women would give anything to be in my place.  They told me over and over how lucky I was and to get out and get a life.  So from the start I was made to feel that I had no right to feel the way I did when others were so much worse off than I.  Yet I did feel terrible and I got NO support for this from anyone, family, friends, doctors.  The general consensus was that it was small, early and I'll be fine.  Still, I had a hundred unanswered questions in my mind, such as "how do you know there is no more in me?"  Just a couple of weeks ago I mentioned to someone that I still worry about this and she said, "Why? that was years ago, you were cured!"  I'm sure her words were intended to reassure me but they hurt and showed me that she didn't understand.  It was as if she thought you can get bc ONCE and I had it my one time and now I don't have to worry about it for the rest of my life.  Because I didn't have a mastectomy or radiation and am not taking Tamoxifin does that mean I have an even lesser bc?  The way I look at it I have an even greater chance of it coming back as I HAVEN'T had radiation to kill those pesky stray cells and I DIDN'T have a mastectomy (or even a re-excision for "good" but not "excellent" margins) to remove nasty breast tissue and I'm NOT taking Tamoxifin to ward off any future occurrences. There is very little support for someone in this position and quite honestly it is lonely fighting the battle alone.  My doctor tells me she knows many who have been treated in the same way as I but she can't produce one name.  The one support group I went to, I left feeling like a complete misfit and at the same time scared to death that I would be back someday joining in on their conversations of chemo and ports.  I even feel like a misfit here because I can't talk about reconstruction or tamox side effects or sunburn from radiation.  What right do I have to complain when others are going through worse things than I?  I feel as if I am supposed to be so grateful that it was caught when it was.  Okay, I am grateful, very grateful.  But does that exempt me from being scared out of my mind that it will come back with a vengeance in the future?

Every single comment made above is so correct.  Since, I got the "good" cancer, dcis, almost but not really cancer, precancer, I have lost one breast and have lymphedema for the rest of my life, I would say that we have all been lied too, don't smooth my feathers, tell me the truth.  DCIS sits at the devils dinner table right along with the rest of the cancers out there changing and taking our lives.  I hope that someday they can redesignate its explanation because it is on the way, in development of becoming an invasive cancer if you don't do anything to it.  So, in my opinion, its kinda like the "almost pregnant" type of thinking.  It has a date it becomes life threatening and violates everything sacred about our bodies and spirits, it challanges us, makes us ill and gets smarter everyday.  DCIS should be described more like in development or in the process of:

Bless you all, cancer has turned my life so upside down I am on diasability at the age of 52.  Yeah, DCIS, the Good Cancer....

be well and fight the fight as the warriors we all are!  Sherry

OldOakTree,

I think your perspective is very consistent with the theme of this discussion.  Yes, DCIS is the "better" breast cancer to have.  Yes, some cases of DCIS (and some cases of small, low grade IDC) don't require all the treatment 'big guns', but that doesn't mean that emotionally it's any easier to deal with DCIS than any other cancer.  I think that's an important point in all of this.

Looking at what we much ensure physically, I do understand the perspective of an oncologist who says that we're "lucky".  I wouldn't want any oncologist to say that to me and hopefully most have enough common sense to not say it to any DCIS patient, but I do understand why an oncologist might think this way.  From their perspective, considering the range of patients they treat and considering the treatments that they must prescribe for patients with later stage BC, DCIS patients are "lucky". 

I wouldn't however understand any surgeon saying the same thing.  From a surgeon's perspective, the surgery that we must undergo for DCIS (or early stage IDC) is the same as what someone with later stage BC must endure.  In fact, in many cases our surgeries are more extensive. Mastectomies are more often required for early stage BC because this may allow us to forgo radiation and/or hormone therapy. Those of us with large amounts of DCIS don't have our tumors shrunk with neoadjuvent chemo; mastectomy is our only option.  On the other hand, someone with later stage BC will require radiation, as well as chemo and probably hormone therapy; as a result, they get fewer 'benefits' from having a mastectomy and are more likely to have a lumpectomy.  They may also be prescribed neoadjuvent chemo to shrink their tumors so that a mastectomy isn't necessary even for those who start out with a larger tumor.  So surgically, DCIS patients get the short end of the stick.

Then there is the equally important emotional side of things.  This is where I think the repercussions of downplaying the seriousness of DCIS most affect us.  Emotionally DCIS is cancer.  Along with a DCIS diagnosis comes all the fears associated with cancer.  Too many health professionals (and laypersons) don't understand this.  A DCIS patient requires the same emotional support as any other cancer patient.  To suggest that we have a 'lesser' cancer or to make us feel out of place among 'real' cancer patients shows a lack of understanding of how any cancer diagnosis affects the patient.  This is very hurtful to DCIS patients.  Emotionally there is no good cancer.

Oldoaktree...I want to hug you.   It's tough, I know.  As I said up there, for some the news is worse (and harder to get in perspective) than fpr others.  At the end of the day, this isn't a competition abou who has the worse prognosis...it's about how we learn to cope with our own, very personal situations and how the non-BC world perceives us.  We all deal with those who don't really get it.  I imagine that camp is larger with a DCIS diagnosis although, to a great extent, I expect, the non-BC-knowledgeable community just doesn't get it, PERIOD.