DCIS not "real" cancer??

It took a lot of sleepless nights to convince myself that a mastectomy was the right treatment for me, although my BS told me I really didn't have a choice given the extent of DCIS.  In fact when I got the patholgy reports from the operation and SNB, I had only DCIS and clear margins.  I thought to myself, "What if I lost my breast for nothing, and the DCIS could have just continued to lay there for years not bothering me."  Then, a couple days after the final pathology report, one of the lab people sent an e-mail to both my BS and PS telling them "a minute focus of just under 1 mm of invasive well differentiated ductal carcinoma appreared on the additional sections prepared for hormone receptor stains."  1mm today, and who knows how much by next year's mammogram?  They didn't find that tiny bit of invasive cancer on any of the mammograms, sonograms, biopsy, lumpectomy, two re-excisions and an MRI.    --All that to say that DCIS most certainly is cancer and I'm just thankful that my BS took it as seriously as he did.  That mastectomy may have saved my life or at least the side effects of chemo and radiation later on.

Almost more than hearing people say it's not cancer,  I really hate it when someone tells me it's the "good cancer."'  Geeze Louise, what are they thinking?!

My experiences absolutely mirror others.  DCIS is cancer.  My largest "lumps" of it were 2.5 centimetres, or about an inch wide.  Also it was grade 3 with necrosis.  Most of that piece and the others were in the top of my breast, but the BS (does that mean breast surgeon?) said she couldn't get good margins so I'd have to have a UMX (unilateral mastec?) on that side.  AFter quite a workup of tests, and an mri-biopsy, nothing found in the other breast, but on all films has been dense, calcifications, etc. like the other one.  So I did consider a BMX but decided not to at this surgery.  My DCIS is ER/PR-, which the Center's tumor board said was atypical.

When I saw the oncologist about further treatment, he hesitated to prescribe, because of my chronic depression and a medium-severe case of fibromyalgia ( I take 80mg of Oxycontin/day for pain).  Since my treatment plan calls for an mri and mammogram in 6 mos., he felt that I had a good plan for monitoring the clear breast.  Then he did say it was my decision, but I'd been thru alot this summer (also a very badly sprained ankle that tore most of the ligaments, still have a brace on it.)  So I decided to wait for now to take tamoxifen.

Does anyone else have this type of cancer (er/pr-), and NOT taken the hormonal therapies?  The oncol also said that neither radiation nor chemo seemed appropriate, since I'd had a MX, clean margins to the chest wall, and negative sentinel nodes.

I think I've made the best decision for now, but I'm curious to hear feedback and other similar experiences with DCIS and an MX but no further treatment beyond the 6 month mammo and MRI of the clean breast.

Thanks so much for all the info in this forum!

RN: I concur that you need a new doc/2nd opinion.  This surgeon sounds a bit daft!  It was my understanding that IDC was, at one time, DCIS!!!!!   I don't think one needs to be a psychic friend to know, left unattended to, the maturation cycle of DCIS!!!  Sounds rather precarious to even suggest taking it lightly because it is not in it's most lethal form YET!  

Best of luck to you and I don't care if you live in Taiwan, get yourself to Hong Kong and get a 2nd opinion!  

Your doc may not be very tactful, but maybe he was trying to help you feel calmer, hard to say.



From everything I understand DCIS is cancer, but it is not invasive at the moment. It's the "at the moment" stuff that gets me worried! For mine, LCIS, I still am not totally sure if that is or is not cancer. People ask if I had breast cancer and I am not quite sure the answer. I say what makes me feel best, which is, no cancer, just a dangerous form of atypia. Who knows!



If you have any room in your insurance have the MRI! Also, if possible, get a surgeon who only does breast oncology surgery, not general plus breast. Mine does breast cancer surgery only, nothing else and has done this week in, week out for 20yrs. Has seen it all! I had BMX with no pain, no problems, no loss of motion, really good outcome and I give him the credit.

Karla2011 - I also was diagnosed with DCIS, ER-/PR-. However, my area was very small (confirmed by MRI) and was successfully removed with one lumpectomy with clear margins.  My surgeon told me I 'hit a home run', in regards to the successful surgery and the fact that, being ER-/PR-, I would not need hormonal treatment. I just completed 33 rads treatments yesterday, excited to be DONE. 

I was grade 3 which I know increases risk of recurrence, but I had not heard from anyone that ER-/PR- was worse than +. 

Stepping into this conversation late but....you bet DCIS is cancer.   Mine already had some microinvasions, luckily very small.   And...I'm going through 35 radiation treatments - they don't treat non-cancer that way!    Everyone have a beautiful day because we are fortunate that DCIS is the cancer we had and we are all blessed that no matter what kind of BC we have they have more and more weapons to fight it successfully.

I am ER/PR- and HER2+ grade 3.  My DCIS was stage 1 due to two small areas of microinvasion (together they do not equal 1 mm).  I was seen locally and at Duke University and had John Hopkins review my records.  All the oncologists agree that no further treatment is necessary after my BMX.  I had a lumpectomy in the cancerous breast but did not get clear margins.  I then went through another lumpectomy but did not get clear margins.  It was then I decided to have the BMX with immediate reconstruction.  After everything I can definitely say DCIS is cancer.  It is just a very early form.  While I am very lucky to need no further treatment I feel that I definitely lost my breasts to cancer. 

I don't know if you've seen the thread that I started "some thoughts about DCIS" but we discussed this very issue here...is it 'real', are we 'survivors' etc...its a wonderful thread and I encourage you to look at it.

I struggled with the same questions/answers. All my docs told me that DCIS is cancer, true it was small -- but it was there. I opted for the most aggressive treatment I could do, which was a bmx. They found tons of hyperplasia that was not present in my digital mammo in April when this whole thing started. God only knows what that would have turned into later, so I know I did the right thing.

We have early cancer, non-invasive cancer, ductal carcinoma in situ...I think sometimes docs may try to downplay the c-word, maybe in a misguided attempt to offer comfort or support (it's nurses who learn the technique of therapeutic communication, not doctors) but the truth is that it is what it is. 

I can't blame you HappyLibby..I would have felt the same way. My Dr did not sugar coat anything she told me it was cancer, I was just lucky they caught it early before it got worse.. 

Terri

I have been reading this thread with interest.  I was dx 4 years ago and my oncologist called my pathology "pre-cancer". He said that even though I had DCIS, my cells looked similar to ADH which is a pre-cancer.  I then asked him why some call it early cancer. He said  that not all DCIS is created equal. Some very large, grade 3 DCIS looks very similar to invasive cancer.  He calls that pathology "pre-invasive cancer."  That made sense to me. I don't talk about my DCIS much anymore, but when I do, I generally call it pre-cancer.

Louishenry -- I think that's actually a pretty good point. Although I come down on the side of calling DCIS cancer, I can see that, say, a 5 mm grade 1 DCIS tumor is not the same as a 2 cm grade 3 tumor. And that calling the former "pre-cancer" is not unreasonable, particularly when compared to the latter.

However, I think we have the right to refer to what happened to us in any way we please. If you want to call it pre-cancer, that's your right. The one thing that bothers me is when others think they can tell us what to call it. It's mine, and I'm naming it, dammit. 

I'm new to this site and discussion.  I was diagnosed with DCIS in April and had a BMX on July 14, 2011.  My BS was very clear with me that what I had was CANCER.  She will not even recommend web sites or reading material that refers to DCIS as pre-cancer.  This diagnosis has turned my life upside down but I am thankful that it was non-invasive.  No chemo or radiation is necessary after the MX.  None the less, I am a cancer survivor!!

As a DCIS gal, I can tell you that I was ignored by all my doctors.  Both my onc and gyn told me repeatedly that, technically, I didn't really have cancer.  Yet, I still had to go through cancer treatment.

It took me a long time to understand this.

I think it all depends on how your doctor defines cancer. Cancer has the ability to invade other organs and spread. DCIS does not. This is where the confusion comes in.

Before DCIS can break through the ducts, it has to have a DNA change.  Not all DCIS will be able to create this change in DNA.  Because we lack the ability to distinguish which DCIS has the potential to change, we treat all of it the same.

By the way, not all invasive cancers have the ability to become metastatic.  Even if it is in the lymph nodes, that still doesn't mean it can create the DNA change needed to invade other organs.

Cancer is a tricky beast. 

In situ means in place, contained. I do not like when doctors are cavalier about any cancer, for the person that is diagnosed at the moment it is enough that is cancer.

I think that before they did not take seriesly  DCIS but now with some recurrences, have changed the way is treated or expectations.

I would tell the doctor how I feel. When in January I was diagnosed with basal cell carcinoma, the oncologist told me "It is a good cancer"I was furious," OK I told  him , it might not kill me but I do not live in a cave, my scar is on my face and is ugly and large, I work and it might not be the last one I get."

To me  it is another cancer and that is not good news. I would never dream making a caste system for cancer patients with any type of cancer.