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Ductal Carcenoma question- new to forum

jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

I had a lumpectomy for a ductal carcinoma 3 years ago. The surgeon said, When asked if you had cancer, trll them no." Since then my husband was diagnosed and treated for base of tongue cancer. I had to leave my job and move for his treatment therefore I have no insurance. My new PC doc is concerned that I no longer see an oncologist. I have also read on the web that ductal carcenoma insitu is cancer. So, my question is, "Should I be concerned? Is ductal carcenoma insitu cancer?"  I have found that the head and neck forum members know more than my husbands doc because of experience so I thought I would ask here.

Thanks in advance for any advice.


TraciInLA's picture
Posts: 1994
Joined: Jul 2009

Welcome to our little corner of CSN, Debbie

There is much controversy among medical professionals and researchers over the issue of whether or not to call ductal carcinoma in situ (DCIS) cancer.

Some doctors call DCIS "stage 0 cancer," some call it "pre-cancer," and some say flat-out that it is not cancer, because by definition "in situ" means that it's not invasive.

I had invasive cancers in both breasts, and am on Tamoxifen for 10 years, so I'll continue to see my oncologist every 3 months for probably the rest of my life.  I don't know whether or not women who've had lumpectomies for DCIS only typically continue to see an oncologist, so I'll let other women here weigh in on that issue.

Hope that helps a little?



jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

Thanks Traci that does help. I was sppose to take the Tamoxifen for 5 years but only took it for 1 year. I am suppose to see an oncologist every six months so that is what confused me on the is it or not cancer issue. When you don't have inxurance it is hard to justify paying specialist prices when not necessary.

New Flower
Posts: 4299
Joined: Aug 2009

Hi and welcome 

please sign up for insurance for the next year. There should be no pre-existing conditions under the new law. Depending on your location several state exchanges have been functioning very well. I live in California it seems to be working Ok Under Obama Care you will be eligible to subsidy and will be able to afford doctor,s visits and generic Tamoxifen. Prices for this medication came down significantly .

in my opinion you need to be followed by oncologist and have your annual mammogram without delays.


sandra4611's picture
Posts: 121
Joined: Sep 2013

Three years ago was an eternity ago! Doctors know so much more now. Ductal carcinoma in situ DCIS and lobular carcinoma in situ LCIS are cancer that is contained in the place it started. It has not spread yet and become invasive ductal carcinoma IDC or invasive lobular carcinoma ILC. LCIS is more worrisome than DCIS according to my oncologist. I had both.

Since I was just diagnosed at a major medical center 3 months ago, I know that doctors are no longer saying it is not cancer. It is - it just hasn't spread yet fortunately. Sometimes it is low grade, slow growing, or doesn't ever spread. Doctors didn't used to do sentinal node biopsies on lymph nodes because it was felt a few years ago that DCIS and LCIS wouldn't be in lymph nodes if it hadn't spread beyond the ducts or lobules. Now they know it can be in the nodes so most doctors are doing sentinal node biopsies.

They can predict a lot by the grade of the DCIS and LCIS. My LCIS was grade 3. My DCIS was an agressive sort and had completely filled the duct, comedo necrosis, and gone into the supporting cell structure of the duct. It's possible both could have stopped growing and stayed where they were. I wasn't willing to take that chance and had a double mastectomy. Many women choose lumpectomy. 

In 2013, DCIS treated with lumpectomy is followed by radiation 5 times a week for 7 weeks & 5 years of hormone therapy. (But not usually after a mastectomy.) DCIS and LCIS patients see an oncologist every 6 months.  

You should definitely get a diagnostic mammogram and see a breast surgeon for a current assessment. Hopefully, your DCIS was removed in your lumpectomy. 

Posts: 1191
Joined: Dec 2010

breastcancer.org has an excellent forum for people with DCIS. I highly suggest you check that out as well as here.

There is a lady named Beesie who is our resident "expert" on DCIS. 

There are lots of postings on treatment plans.

A lot depends on grade of cancer, size or if it is multifocal, size of clean margins, hormone status (er or pr positive or not), your age and BRCA status. I think that is all, but knowing my forgetful brain, I could have forgot something.

We may have DCIS, but everyone's circumstances are different, helping pave the way to individual treatment plans.

Posts: 1416
Joined: Mar 2001

I truly stopped all cancer care after a few year period because they believe you are cured.

If I didn't continually have pain issues I wouldn't have been going back having to rely on GP.

With doctors increasingly hard to find due to shortages just getting to see a doctor is a good thing...


carkris's picture
Posts: 4554
Joined: Aug 2009

Sandra I am wonderng if you have it mixed up. I was told DCIS  is cancer, although it is 50/50 whether it would become invasive. LCIS is a marker of increased risk and not considered cancer.

sandra4611's picture
Posts: 121
Joined: Sep 2013

According to my oncologist, there used to be some disagreement about DCIS and LCIS but current research says both are cancer and need to be treated, not watched. Makes sense to me... invasive lobular carcinoma used to be lobular carcinoma in situ until it spread. Same with IDC...it used to be DCIS until it grew out of the duct.  Sometimes DCIS is low grade and stays put. Same with LCIS. My oncologist says there is no point taking the chance. If you have LCIS, your chances of developing some kind of cancer in the other breast is greatly increased. The oncologist says it is more worrisome than a DCIS diagnosis.


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