DCIS...did anyone have a MO tell you that you don't have cancer?

Yes, the MO walked in and said, "Congratulations -- you don't have cancer.  We don't consider this cancer."  Fortunately, my BS and radiologist both considered the 7cm of high-grade DCIS to be serious and didn't laugh off my worries like she did.  I'm driving 2 hrs next week to see someone else.

The only doctor who told me this was one of the "doctors is training" who was following my oncologist around for a few days.  My oncologist left him alone with me so he could do a "patient history" but intead he spent 10 minutes trying to tell me I don't have cancer.  He probably meant well but to me he came across as ignorant and stupid and I was so totally turned off by him that I didn't even bother to set him straight.

It is somewhat controversial within the breast cancer community as to whether or not DCIS is cancer.  Most experts do consider DCIS to be cancer, but there is a movement that is trying to get DCIS reclassified as being a pre-cancer.  Some experts, such as Dr. Susan Love, are quite open in saying that DCIS is not cancer.

Most definitions of cancer state that there are 3 criteria that define a cancer:

1. Abnormality of the cells.

2. Uncontrolled growth of the cells.

3. The ability to spread beyond the original site.

DCIS meets the first two criteria but by some definitions, does not meet the third. DCIS can spread extensively within the breast (I had over 7cm of DCIS) but it cannot spread beyond the breast.  And that is the reason why medically there are some who believe that DCIS is not cancer.  What Is Cancer?

Personally, like everyone else here, I get very frustrated when I hear someone say that DCIS isn't cancer.  But the more that I've been involved with this and the more I understand the wide range of diagnoses that are included under the DCIS umbrella, the more I am starting to understand why it might make sense, at some point in the future, to reclassify some types of DCIS (but not all) to be pre-cancers. Currently however I don't think that the medical community knows enough about DCIS to know which types legitimately could be considered pre-cancers, and I worry that anyone who calls DCIS a pre-cancer today might discourage from treatment some women who have very serious, threatening diagnoses.   

Tamiami, it sounds as though you ran into a MO who is in the camp of believing that DCIS is not cancer.  That's unfortunate, however regardless of how she personally feels about this, given your extensive family history and your diagnosis of DCIS, she should not discount your desire to have a BMX, whether she considers DCIS to be cancer or not. 

Good point. With the BMX, you won't need the MO. Good riddance to her!  

Seeing a genetic counsellor is a good idea.  Has anyone in your family who's had BC been tested for the BRCA gene?  And are there any other cancers on your mother's side of the family, such as ovarian or prostate? 

Woo Hoo to you! Well done!

I have a diagnosis of DCIS too. I'd hate to think that next Wednesday when I have my right breast removed that it's for nothing because I don't have cancer. 

It was my choice too, and everyone close to me has backed up my decision. I am not going to reconstruct either.

I did have an MO tell me that I had never had cancer with DCIS stage 0.  However, when my path report came back positive as pn0(i+) the cells were called tumour cells.  Why call them tumour cells if its not cancer?

Agada

Tamiami,

FWIW - I was diagnosed with DCIS and had no trouble with my insurance company paying for the BRCA testing.  Due to my age at diagnosis and some family history, the genetic counselor did recommend the test, but the likelihood that I carried the gene was not high.  You may want to check with your insurance company ahead of time and see what they will cover.

Good luck!

Jill, are you taking any meds?

Hi

Just new to this but thought I would add my two cents worth. I was diagnosed with DCIS last week - calcification found on a mammogram then a vacuum assisted biopsy. When I was told the results the Dr was very clear that I had non invasive breast cancer - ie contained in the duct. I had the diagrams in front of me and even asked - so when I explain to my husband the results I have breast cancer - YES. It would be lovely to think I could just leave things but every specialist along my path has been adamant that I need to act. Lumpectomy done 10 Dec and pathology showed 5cm high grade DCIS - this was not seen on mammogram or ultrasoud - surgeon was quite shocked - me too obviously. Now definitely MX,(surgeon's advice) trying to make the decision about BX or not.

Can not understand how medically there is such a wide varience in opinion and find it scary that some Drs are down playing the danger.

Last summer I was diagnosed with DCIS. My BS told me that because it was Grade 3, it had a greater chance of turning into "real cancer". This upset me greatly and I felt as if I was wasting his time. Despite my strong family history, I opted for a lumpectomy. I was also told by the rad tech at the hospital the day of surgery that it wasn't considered cancer either. However, my MO kept telling me how calm I was after getting a cancer diagnoses (but I thought I didn't have 'real cancer"!!!).......Anyway, fast forward a year later. A few months later I was then diagnosed in the opposite breast with IDC. In less than a year I had 2 lumpectomies, 4 rounds of chemo and 58 radiation treatments. MY BS had a whole differant attitude with the second diagnoses. It's funny how after that he would refer to the first DCIS diagnosis as "cancer." 

It seems to me that MO's are more likely to consider DCIS "not cancer" than BS's or RO's. Maybe it has to do with how one defines cancer; for example, as a neoplasm with the ability to spread to other areas of the body. Plus, every day, they deal with people who are really sick because of their cancer.

In my personal experience, my BS and RO treated my DCIS as cancer, without question. So did my insurance company. When I first met my MO, he told me that I had "pre-cancer" or "pre-invasive cancer." He also said that it was not a matter of if it will become invasive, but how long it will take to become invasive: 1 year, 2 years, 5 years, etc. So maybe he takes DCIS a little more seriously than those who believe that the majority of DCIS will never progress. And even though I am BRCA negative, due to my "extensive" family history, my MO (and BS) seem to think I am high risk for BC in the future.

For those women who have lost one or both breasts to DCIS, it must be like a slap in the face to be told by a medical professional that they did not have cancer. Where is the care in healthcare?

Hi m4babies; your post really is the very scenerio I keep playing out in my "what if?" thinking.  I have just had my second surgery (re-excision).  I really struggled trying to decide between a lumpectomy or mastectomy.  I kept thinking, it's not 'real' cancer. I didn't want to 'over-react' to this cancer that my family Dr. called pre-cancer and not a concern.  I opted for lumpectomy but already they have me booked for follow-up on the other breast.  Now I am trying to stop thinking..."What if?"  I hope you that you doing well now. 

jill47;I am wondering about the tamox for 10 years news.  Do you remember where you heard about it?  With DCIS there seems to be a lot of decisions that have to be made about what level/kind of treatment.  It seems to be such a gamble and depends on that level of 'risk' each individual is comfortable with.  I find the decision making the hardest part.

Teresa---I just asked my oncologist about  the recommendation for using tamoxifen for 10 years now. (I took it for 5 years). She said "that's only for invasive breast cancer".

anne