Do you call DCIS "breast cancer"?

gumshoe

Hi everyone, 

I'm fairly new to this site. I have been reading a lot, and the information has been invaluable! 

Things have moved very quickly for me (as I'm sure they do for everyone). I was diagnosed, had a partial mastectomy, and a re-excision to clear the margins -- all within the past 6 weeks.They are also suggesting radiation but I don't yet have the details on that.

My issue is that I don't really know what to tell people! That might sound weird, but if I say I have DCIS, most people don't know what that is, and then I have to launch into an explanation. I am being treated for breast cancer, but I know that technically they don't call it "breast cancer" (at least here in Canada). On the other hand, it's defined as Stage 0 breast cancer elsewhere.

Just wondering if there are any other people who are terminology-confused, like me! 

redsox

I found that the easiest short terminology to use with most people was, "I have Stage 0 breast cancer".  Everyone knows someone with breast cancer and most people know that stage is related to how bad it is with higher stage being worse than lower stage.  The most common response was, "I didn't know there was a Stage 0" to which I would say, "Yes, it is very early."  They understood the situation in general quite well then.

If I wanted to go into more detail and they knew more about medicine, biology, or cancer, I would get into DCIS as "non-invasive breast cancer" or "pre-invasive breast cancer" or other levels of detail. 

But for most people "Stage 0 breast cancer" gave them a pretty accurate picture.

Beesie

I call DCIS "pre-invasive breast cancer".  While there is a small group of "experts" who are trying to position DCIS as a non-cancerous condition, most doctors and breast cancer specialists do consider DCIS to be breast cancer. 

This is true in Canada as well. Why do you say that in Canada DCIS is not considered to be breast cancer?  Is that how your doctors have discussed DCIS?  That's not my experience - my doctors definitely called it breast cancer -  nor is it what I've found in reviewing Canadian websites.  Some examples:

The Canadian Cancer Society on breast cancer staging: "In the earliest stage of breast cancer, cancer cells are found only in the milk ducts or lobules."  

The Canadian Breast Cancer Foundation on types of breast cancer: "Ductal carcinoma in situ (DCIS). This is the most common type of noninvasive breast cancer. DCIS means that the cancer is located only in the milk ducts." 

The Breast Cancer Society of Canada on types of breast cancer: "The term "in situ" or "in place" refers to a very early form of cancer that has not spread. DCIS is a type of early breast cancer inside of the ductal system that has not attacked the nearby tissue. This is a very common type of non invasive cancer." 

3monstmama

In as much as my oncologist said that my DCIS would have become invasive at some point (grade 3 with comodo necrosis) I am fine with saying pre-invasive breast cancer.

Layla2525

www.medscape.com has a current article regarding latest research on DCIS and its relationship to IDC. I got IDC but I first has LCIS instead. I would copy the link onto here for you but I tried it a couple of times and I am unfortunately computer illiterate so it didnt work. sorry. Also this mth they have an article on MRI breast imaging and some other articles on meds for advanced breast cancer.hope this helps a bit.

1openheart

I either say I had an early stage of breast cancer that did not spread beyond the ducts or pre invasive breast cancer.  Mine was grade 3 with lots of comedonecrosis, so my doc. said it was well on its way to becoming invasive.

mrkffr11

I too was recently dianosed with DCIS and will watch this tread as it develops.

I'd like to add to the question and ask - medical paperwork - when asked have been dianosed with cancer.  Do you say Yes?

Can answering Yes have implications for coverage? 

Emaline

I just say I have breast cancer and leave it at that.  If they are friends and family, I will go into more of an indepth talk, that it is stage zero, blah blah blah.   My doctor who is the head of breast center at a major hospital calls it cancer. While it is not invasive, it is still cancer and needs to be treated.

I had to fill out new insurance paperwork and I explained to the intake person my situation, she made a couple of calls and yes the insurance company said it was cancer and it had to be listed.  

Emaline

Here is the thing I find funny about this whole: Is it cancer, is not cancer....I work at a nursing home and we have a couple of residents who have colon cancer situ (stage 0 as well) and no one minces words.  They are said to have cancer.  I don't know why it would be different with our breast.

gumshoe

Wow, thanks for all the responses and information. Here I have been struggling with this for the last few weeks, and all I had to do was ask! I have been mostly using what redsox suggested, "Stage 0 breast cancer".

Beesie: Thanks for all the information. My doctors said, when they told me about my diagnosis: "The good news is that you don't have cancer; the bad news is that you have a high-grade DCIS." I think that is what started me down the road of confusion: most other things do define it as a zero-level cancer.

1openheart and 3monstmama: It sounds like we have similar diagnoses. Interesting though, that I did not receive any info on ER/PR receptors.

 Thanks Layla2525, for the info -- I'll read this later. 

 And mrkffr11: Yes! That's what prompted me to ask the question, because I was filling out a form, and there was no "sort of" box to check!

And yes, Emaline, you have a great question -- why does it have to be different for breasts?

GmaNiki

I am newly diagnosed with DCIS and was told it was cancer. In 1982 I was diagnosed with Cervical Carcinoma in situ. and also in 1992, in the 30 years since that diagnosis I have been told I had cancer and that no not really cancer, well yes maybe cancer because....blah, blah, blah. My thoughts go back to the original doctor who said it was cancer, an unusual cancer for the for someone my age, but cancer none the less. When I have my hysterectomy he also said there were cancer cells in the uterus, but not well defined. Lots of people do not understand about cancer, but they are all scary, serious and cancer. The only people who need details about this will understand all that. I dont go into details about my health to everyone, but I will always acknowledge that I am a cancer survivor. That is the important fact.

Merritmalloy

Great question. Sometimes I like to think about how lucky I am that it was caught early. Other times I worry that if cancer showed up once it will show up again.

agada

I consider my stage 0 as a breast cancer being caught early.  I had my doc tell me (an onc) that I did not have cancer at all.  So I asked him if I had fake bilateral mastectomies to fix the fake cancer.  He did not have a come back for that.  I still think it is an early cancer, like I said before.

Agada

CTMOM1234

I called it stage 0 bc but think in my heart I was in denial . . . then my lumpectomy final pathology report came in to reveal that there was a small amount of idc (no idc had shown up on mammos, ultrasound, mri, or during surgery prelim pathology) and it helped clarify that dcis sure as heck is real bc, even grade 2 dcis.Headed into rads glad to be zapping away any remaining traces.

Moderators

Dear gumshoe, 

 

On the main breastcancer.org site there is a lot of good information about DCIS.

 

We hope this helps. 

 

Your Mods 

Merritmalloy

Agada - Loved this - "So I asked him if I had fake bilateral mastectomies to fix the fake cancer." Made me laugh out loud.

RockiesGal

I usually tell people I had non-invasive breast cancer.  If they ask what that means, I tell them it did not yet have the ability to spread when it was removed. 

If I were filling out a form, I would answer yes to cancer.  When hormone replacement therapy came up in a discussion with one of my doctors he said, "Of course that doesn't apply to you because you have had a cancer diagnosis."  That was a couple of weeks after my diagnosis and it was like a cold slap in the face.  It was the end of denial for me and I could no longer tell myself DCIS wasn't really cancer.

My genetic councilor told me "they" (whoever they are) have classified DCIS as cancer for only a couple of years.  Prior to that, "they" called it pre-cancer.  She said the reason for the change was so that it is taken more seriously, both by doctors and those who have been diagnosed, which helps cut down the number of recurrences.  Of course that also means it is taken more seriously by insurance companies, which has both pros and cons.

For some purposes, DCIS is classified differently than other cancers.  I have a relative who needs a bone marrow transplant.  I am on the registry and had hoped to be a match, so I checked their website to make sure I am still qualified to be a donor.  You cannot donate if you have had any type of cancer except DCIS.  If you have had DCIS, you can donate but only if you have not had surgery for DCIS within the last 12 months.

iswimibikeirun

Yes, I would.  If this diagnosis is enough to preclude me from easily obtaining private health insurance in the future, then the answer will be yes.  Why would I need to be seen by an oncologist more than once if I do not have breast cancer?  Why am receiving the same treatment that others with "real breast cancer" receive if I do not have breast cancer?

That being said, I understand how some people would not want to categorize themselves as having cancer because it probably gives them more hope.

Barbie7

I call it what my surgeon, rad onc., med onc. and primary care physician have called it.  Cancer.

VeganGal

Right now I call it cancer too! And, I'm not sure about the rest of you ladies . . . but if I have one more person tell me how lucky I am I may strangle them. I feel like responding, "yes - I am really lucky be getting my boobs cut off - yup - so lucky" . . . ug . . . I'm venting . . . I even had my sister email me about how lucky I am  . . . I don't know how to respond to her . . . and the way I feel at this very moment . . . I can't imaging what I will ever be able to say anything to her again . . . how do all of you handle it when people tell you how lucky you are? is it just me?

Merritmalloy

VehanGal - I understand where you are coming from and going thru an mx certanly was no picnic, but I have to say that I do consider myself lucky in terms of a cancer dx.  If you are going to be told you have cancer, stage 0 sounds far less scary than advanced stages.  I guess it's how you look at it.  I was the person who didnt smoke, drink, eat trans fats, corn syrup, etc. and I got cancer.  Now that is the part that made me mad.   Maybe I should be downing Twinkies and Mountain Dew!  And I have the opposite reaction from people I tell.  They seem to be blown away by the dx and I get the pity look.  I guess the C word just rattles most people. Maybe people are just showing that they are relived that you had the C word, but a great prognosis.   To be honest, whenever I'm feeling sorry for myself it seems invariably I check the "Active Topics" section of these boards and see a post that details the experience of a Stage 4 member.  Then I think about how they feel and how scared they must be and then I count my boob-less blessing.

cinnamonsmiles

DCIS is breast cancer. And as far as it effecting coverage, that is too broad of a question to answer. I looked into life insurance through State Farm in WI and at first was told I couldn't be covered til I was cancer free for five years. But when I told them I had BMX for DCIS, the tune changed and I was able to get coverage.

As for not being able to donate blood if you have had any other cancer than DCIS, it is no longer true. There was a lengthy discussion on the Breast Cancer Boards at the American Cancer Society's boards and you CAN donate blood if you have been cancer free from other types of breast cancer! There is a lady on breastcancer.org who is trying to donate an organ to a family member and her doctor's are saying yes, but the tumor board is still looking into it. She had a higher grade than 0. I will let you all know what is decided.

VeganGal

Thank you . . . like you I too am a bit of "health nut". I have been a vegan for 25+ years, rarely drink, never eat processed food, faithfully exercise, don't smoke, etc. . . . and literally everyone around me said - "you have BC? you're the healthiest person I know" . . . and I guess the reality is that I'm pretty mad. Yesterday I spent the day sad, and today I've been really mad all day. And, yes, I have a very good friend who has very advance BC (I'm just learning the short forms - I don't know them all yet), and she has been given about 6 months to live. My heart is breaking for her, and in contrast, and I am so fortunate . . . but it still feels pretty weird for people who are not touched by BC to tell you that you're lucky . . . .

Merritmalloy

VeganGal - are yourecently diagnosed? 

VeganGal

Yes - I was diagnosed on February 17th. Three areas of DCIS in different quadrants of my left breast. I've been told that I need a mastectomy . . .

lassie11

The "C" in DCIS stands for carcinoma and that means cancer. Somone who ought to have known better suggested to me that my diagnosis of DCIS was "not really cancer". Of course it was!! That's why I had surgery and radiation. If it wasn't anything at all then nothing at all would have been done about it.  When I suggested to an acquaintance who had chemo that maybe mine wasn't real, she very kindly pointed out that it is all real.

Yes, it is not invasive - yet - but it really is cancer, albeit with a much better prognosis than later stage cancer.

Merritmalloy

VG - When you said in your post that you were mad/sad that clued me in.  I think you are in the grief stages of the diagnosis.  I was there back in Sept when I was told.  It's like the floor falls out from under you!  I was so scared and dreaded the surgery.  I had a unimx.  It wasnt fun, but wasnt horrible.  I think the fact that you are so healthy will  make a huge difference in your recovery.  My doctor was amazed at how quickly I rebounded.   Thank you swiss chard, lemon, olive oil, pineapples, eggs, organic food...!     If you have any questions at all, please feel free to send me a private message and I'll answer any questions you have.  I know it's daunting, but you are healthy and strong and you will bounce back!  I have my recon surgery on 3.14 and then I'm taking the family to Disneyworld end of April.  It's my reward for putting up with the fallout from DCIS.  Maybe it would help you to think of your "happy place" and make plans to go there as your end goal.  Puts a positive spin on the steps you need to take to get to the other side of this.

Dixiemine30

VeganGal -- i know exactly what you are going through, exactly.  I was diagnosised on Jan 3 and had surgery BMX on Feb 2.  I remember how "raw" I felt.  I remember wanting to punch the next person who told me how lucky I was.  Seriously, I certainly didn't feel lucky.  I was mad, sad, frustrated....and then guilty because, like you, I have a friend with a much more agressive cancer.  I felt terrible that I was crying my eyes because I had a curable cancer when she was fighting for her very life.  It's a terrible disease!  Looking back I do feel a little lucky, I am now cancer free....but sadly, I'm also breast free.  I'm 100% at peace with my decision and I rarely have a pity-party anymore :-)  Prayers for you as you come to terms with your cancer and make decisions regarding treatments.

Dixiemine30

MerrittMallory -- Excellent advice!!  I'm going to pick out my beach house right now!!  I will have exchange surgery some time this summer...probably June.  I think a week on the beach in August/September would be a grand reward :-)

Dixiemine30

Merritmalloy --  I totally messed your name up.   Sorry

VeganGal

Thank you ladies . . . you've both made me cry (again) . . . ug . . . do I seriously have tears left inside of my body? Punching someone has occured me How do you learn all the short forms that everyone is using? Is there a list or a chart somewhere? How do you send private messages? Sorry if these seem like silly questions . . .