DCIS - cancer or Pre-cancer?

Hi Louishenry -
I'm 3 and a half years out from diagnosis at age 49 with not just DCIS, but IDC as well. I refused radiation and also refused any hormonal therapy and I'm still cancer free after just a lumpectomy. Your specialists telling you that low grade, non-comedo isn't as serious are correct. Even having had invasive cancer along with the DCIS (both within the same tumor just under 1 cm in size) and both low grade, I felt very comfortable doing nothing other than having the tumor surgically removed.

Smalls,

I think your surgeon needs to write a letter for you explaining the standard of care for DCIS. If your DCIS was in more than one spot or was widespread, mastectomy is the standard of care. Certainly, mastectomy is considered one choice even without more than one area of DCIS being involved.

Get your doc's working on this; they should be able to convince your insurer.

Smalls,

I agree with the info given. I had non-comedo DCIS two yrs ago and BCBS and my cancer rider both paid on the surgery/treatments,etc. I'm post-menopausal and had never had any issues prior to this time. I opted for lumpectomy followed by rads and now Arimidex. The 33 rad treatments were covered by BCBS and I,additionally,had a supplement from my cancer policy. I had some ADH and hyperplasia around the DCIS area;single focal area. Perhaps all this comes into play abt the choice for rads or none. I did not really want rads;however,had faith in my dr and was not as adept at researching two yrs back. I went with the drs opinions as it was a very stressful time.He was able to achieve good margins during lumpectomy.

 My radiation onc filled-out the paperwork for me to submit to the insurance co. All of this not cancer/pre-cancer talk has been annoying since I began this journey two yrs ago. I was treated like a stage 1 and do not regret my choices. However,I will still have people say that you did not have cancer and I sit here remembering all those 40 plus visits to the cancer ctr! Maybe it was not invasive;however,it needed to be treated.

 I feel really well and have check-ups this wk as I still go back every 6 mos to the rads onc.  I know this is rambling just had to share as your case sounded similar to mine. I had sev different opinions as to cancer or not cancer as there are gray areas-JMO.

 Good luck to you and thanks for sharing your story. Also,I have found lots of help with the billing dept at the cancer ctr as that person knew all kinds of codes to help me with the ins paperwork.

Iris 

Hi Beesie. You seem so knowledgeable. I have 4mm ,micropapilary, non-comedic low grade dcis. My treatment was lumpectomy that had no residual disease left, as the biopsy had removed all dcis. Therefore, the margins were huge. My treatment is just mammos every 6 months and MRI every year for 5 years. No rads, but they are leaving tamox up to me. Two oncologists, though, did not recommend it because of the potential probs. They felt that my chance of recur. is about 7% in 10 years and tamox would lower about 2-3 %. Do you think it's worth trying? Do most people not have many side effects?  Is it true that the majority of DCIS does not turn into invasive, even if the dcis is not treated?

To address some earlier comments, my understanding is that DCIS cells are cancer cells, they just are contained within the duct.  Here are a couple comments about this, one from this site and one from the ACS site:

"We generally think of cancer as a type of disease that grows out of control. DCIS, on the other hand, is not an invasive cancer. It stays inside the milk duct of the breast in which it started. It can grow to cover a small or large area of the breast. But it does not spread OUTSIDE the duct into the normal surrounding breast tissue, to the lymph nodes, or to other organs...  So, is DCIS actually cancer? The answer is yes, because DCIS is an uncontrolled growth of breast cells." http://www.breastcancer.org/symptoms/dcis/index.jsp

"Ductal carcinoma in situ (also known as intraductal carcinoma) is the most common type of noninvasive breast cancer. DCIS means that the cancer cells are inside the ducts but have not spread through the walls of the ducts into the surrounding breast tissue. "  http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_breast_cancer_5.asp

While it is true that DCIS (but not invasive breast cancer) is found in the autopsies of many women, I question whether this  supports the argument that most DCIS will never become invasive. As we know, most BC is slow growing.  Recent studies have suggested that many, possibly the majority, of breast cancers may start as DCIS.  But DCIS may be present for years before it becomes IDC.  So when DCIS is found in an autopsy, it could simply be that this DCIS developed later in the woman's life and had not yet had the chance to become IDC.  Given more years, it may well have evolved to become IDC.  Nobody can say that this wouldn't have happened and in fact I think that data supports that it would.  I keep coming back to the fact that 50% of DCIS recurrences come in the form of IDC.  To me that's the most convincing argument that the majority of DCIS cases will eventually become IDC if not fully removed from the breast.

Ultimately what frustrates me most about the designation of DCIS as a "pre-cancer" by some doctors & organizations is that this harms the women who have DCIS.  To suggest to these women that they don't have cancer is, to me, absurd.  DCIS women absolutely must undergo invasive surgery, sometimes even mastectomies, and often need radiation and hormone therapy to stem the risk of recurrence or a 2nd BC.  Our risk of getting a 2nd diagnosis of breast cancer is increased exactly as it would be had we been diagnosed with an invasive cancer.  To put DCIS women in a position where we question the seriousness of our condition, to tell us that we don't have a "real cancer" and therefore make us question whether we are entitled to all the fears and concerns of a "real cancer" patient, to require us to argue with health care providers, insurance companies, family & friends about the seriousness of our condition when in fact our treatment is the same as the treatment for any other early stage breast cancer, well, that's absurd.  

Technically, I believe that DCIS does fit the description of a cancer.  "In situ" cancer is not unique to breast cancer; in other forms of cancer there is no debate as to whether an in situ cancer is "real cancer" or not.  However, even if technically DCIS could only be defined as pre-cancer, from a medical treatment standpoint I still think that the term "cancer" is more appropriate.

Okay, off my soapbox (for now, anyway!)  

Thank you for this great information.  This information goes right along with what my surgeon told me about DCIS.  I too had grade 3 DCIS. I also chose to have a mastectomy.  I see the nurse practioner tomorrow for a check up and to talk about this report and the insurance company.

Many thanks to all of you for these comments.

Jan

It is an additional insurance policy to cover cancer dx. I took out the Aflac cancer policy. Started 2 years ago when first offered at my office. It pays a set amount for cancer tests each year even if no cancer is found with a max pay out per year. It pays a lump sum with initial diagnosis, so much for each proceedure performed, for each day in hospital. If I was having chemo or rads it would pay a set amount for each treatment. The cash is paid to me directly to use as I see fit and not paid to the providers.

I was glad that I took it out after my mother's dx of Breast cancer.

Sheila 

catherine  please read some books on dcis.....becauce IT DOES matter what it is called.  DCIS is cancer....it is not INVASIVE cancer....but if not treated it will become invasive....they just dont know when.  Women dx with this cant get life insurence, cant give blood and all that related to having cancer.  We are the "LUCKY" ones and most dcis is detected at stage O.  It might make one feel better to hear the words pre-cancer...but make NO mistake that it is.....I would not be getting a bilat mast for just pre cancer  I was responding to a women on the first page of this discution toward the bottom

uh....I had DCIS and I have donated blood twice since and got a new life insurance policy just this past summer ($500,000 to boot).

I can't speak for sharon, but I was not able to "up" my insurance policy for a duration of time or it will cost me a fortune.  I am not sure about donating , but I also cannot change my individual health insurance policy without being tagged with a "pre-existing" cancer dx.  I have to wait (I think it's 5 years) before I will be eligible to change without the pre-existing attached....or I could go with a very expensive policy right now and not worry about it.  Point being, I have had issues after my dx with dcis. 

Am 62. DX DCIS 4/07. Lumpectomy w/SNB 5/07. Nodes clear; Hi grade w/comedo necrosis, ER+, PR+. Rads completed 7/07. Onc. recommended 5 yrs tamox  but said I was lo risk & he'd feel comfortable if I decided not to take it. Didn't give me any numbers as to risk. Gave me a prescription for tamox which I put in jewelry box, haven't filled it. Rad onc. said basically same thing, that risk was low since it was "only DCIS." Had total hysterectomy, ovaries, cervic removed 2/07 for endometrial cancer.  Read on breastcancer.org that endo cancer is a contraindication for tamoxifen altho med onc saw no prob. w/it.  Given all the mental, emotional anguish it causes & treatment options, my vote goes w/cancer.

Joan

Beesie

Thats very interesting and I plan on hopping on that site to check it out.  I have been reading ALOT of books and everyone of them (all written with in the past 10 years) and all of them label dcis as non invasive  cancer.  One dr.   stated how it could be dangerous for other Dr.s to tell their patiants that its pre-cancer.  I know the debate will go on and on.  Just remember this......fact....the breast cancer survival in usa has gone up ALOT, and the dx has gotten younger and younger.  dcis is classified in that statistic.

Sharon

Maybe each state is different.  One can call it "pre-cancer" if it makes that person deal with it better.  Its important to deal with it and take care of it:<}  Or the beast will bite you in the you know what.  I will look up NIH and do more reading.  Like I said this is a funny debate to have.  I cant help to think how trivial  the tittle"pre-cancer" has on women who dx was bilat mast.  

Jodi

beesie

thank you.  I will check out the info you provided.  Im just SO GLAD that the cure rate of cancer has sky rocket.

How was your care in Toronto?

jodi aka jade:<} 

Hi - I just finished mammosite radiation following lumpectomy for DCIS and my med oncologist prescribed tamoxifen.  But I have a genetic predisposition to blood clots that he did a blood test to reveal.  He prescribes folic acid, vitamin b complex and a full dose aspirin daily to reduce the affects of the genetic factor thereby reducing blood clot risk.  Then he suggests vitamin e for hot flashes.  I'm 54 years old - have been having hot flashes since coming off HRT when I was dx.

I'm trying to decide as well whether to take the tamoxifen.  He said it will help prevent recurrence and from a new cancer in my other breast.  I'm thinking I will call and make another appointment and just tell him of my concern and see if he can be more specific about risks.  I'm glad I found this forum and can tell I'm not the only one with doubts about the benefits vs risk and side affects of tamoxifen.

Thanks!  Laurie