Is this really cancer?

speech529

I was diagnosed with DCIS in late March and since that time I have received conflicting messages about DCIS.  These range from that it is really cancer and needs to be treated to that it's just a precancer and nothing to really worry about but you should have a lumpectomy and maybe you need radiation.

Should I be more worried and concerned?  How dangerous is this disease--I read all the statistics but this information is so abstract. 

Why are there some researchers who want to take the "carcinoma' out of the name?  It's really a confusing situation and very frustrating when I start to think about it.

anghub

Good morning: In response to your post. I too got conflicting messages about DCIS. The first surgeon I saw told me I didn't have cancer but as I was leaving her office her staff handed me a book called Understanding Breast Cancer and gave me a telephone number for the Nurse Navigator who works in the Cancer Unit of the hospital. I did my mammo's, testing and biopsies at this hospital so this surgeon had gotten all the path reports and was the one who gave me my diagnosis of DCIS.

The 2nd surgeon I went to (who actually performed my surgery) said it is a cancer (both he and the P.A. that I met with before hand said this is a cancer). The P.A. explained it as a preinvasive cancer. The surgeon explained it as a low grade type of cancer. The 2nd surgeon agreed with the protocol that the 1st surgeon had given me which was lumpectomy, followed by radiation, and then 5 years on Tamoxifen. I meet with the Rad Onc tomorrow (I actually had IORT during lumpectomy but I'm supposed to have an additional 5 weeks of radiation).

I feel like I'm in LIMBO sometimes because of the conflicting messages about DCIS.

I am so not an expert on DCIS but I have done SO MUCH reading and research and have found a lot of good information on these boards.

tweetybird

I hear you Speach! I was also diagnosed with DCIS in July of 2006. My breast surgeon and radiologist called it cancer, that does not go beyond the milk ducts. But my oncologist calls it a "precancer", but is treating me like I have "cancer". I asked her a few times if it's precancer, why did I have a lumectomy, 33 rounds of rads, and on tamoxifen for 5 years. The answer that I always get is that it's precautionary, since there is a remote chance that DCIS can spread.

It would be great if all the Doctors were on the same page with DCIS. With all the different stories that are out there, it makes it that much harder for us to deal with having cancer.

redsox

Speech,

The best descriptions of DCIS are noninvasive cancer or preinvasive cancer.  Other terms are also used. For cells to become cancer they undergo several changes.  One change is to proliferate uncontrollably which DCIS cells do.  Another is to invade the surrounding structures which DCIS cells do not yet do. 

Will all DCIS cases become invasive cancer?  No, but many (most?) do (length of time until that happens varies greatly) and studies have not successfully identified which cases will and will not.

Even without becoming invasive most DCIS cancers will proliferate widely in the breast, usually making mastectomy the only option.  Watching and waiting does not work because the only way to know if it is all DCIS is to remove it and do pathology on it. You cannot know if you are watching and waiting what you think is DCIS while it has already become invasive.  Imaging tests can have false negatives or false positives and biopsies can miss an invasive component.

Your father's assessment is as good as you are going to get from anyone here.  Maybe you should go back and talk to him more about it.

prayrv

Speech,

please read the thread Past Post from Beesie on understanding DCIS - a wealth of information!

I bumped it for you but here's a link  http://community.breastcancer.org/forum/68/topic/727963?page=3#idx_90

for what it's worth, it's preinvasive cancer - but still cancer.

Hugs,

Trish

navygirl

IMHO, the doctors can say whatever they want about DCIS not "really" being cancer...but all you have to do is ask a woman (such as myself) who had a DCIS that became invasive, and you'll understand that while it might not be life threatening at the moment, it is definately something to be concerned about and taken care of. It's the second type of pre-cancer I have had. The first time was cervical and I had it removed, with no further issues. The second time was BC and I didn't worry when I was told I didn't have too - and unfortuantely by the time I did, my cancer was invasive and in both breasts. I required a double mast, 4 rounds dd A/C, 12 rounds Taxol/herceptin and another 7 months of herceptin. So much for don't worry. 

Don't let anyone minimize your concerns, give it the attention it deserves; you should understand your options, be your own advocate, and ask as many questions as you need to in order to make the best decision for you.

dsj

When I was first diagnosed, I kept telling myself "I don't have cancer, I have pre-cancer."  And then I was waiting while someone scheduled my MRI, and I heard her say, "she has breast cancer."  Wow, it really hit home --both for me and my husband.  On the other hand, my oncologist, who I really admire and really respect and who is being very proactive in my treatment, continually says "you don't have cancer."  Yesterday, in exasperation, I said "if I don't have cancer why am I seeing an oncologist."  He just laughed.  I guess my point is kind of contradictory:  1) what you call it does matter (hearing  myself described as someone with breast cancer changed my way of thinking); 2) what you call it doesn't really matter (my oncologist who says I don't have cancer sent me to an very impressive radiation oncologist for radiation and has pretty much insisted I do tamoxifen.) 

Doctors now believe that DCIS is not one disease, but many; they describe it as heterogeneous.  The problem is that they don't have a very good way of differentiating which forms of DCIS will become invasive and which will not.  So all have to be treated as though they have the potential to become invasive.  However, preventative treatment is different for different women--depending on a bunch of factors like size of DCIS tumor, grade, age of woman, genetic propensity, etc., etc.  You need to talk to your doctors about what kinds of treatment you specifically need, given all your diagnostic factors.