DCIS - cancer or Pre-cancer?

I think 80% of women develop Microcalcification (which is linked to dcis) but only 20% become cancer (DCIS).  That is what I was told by my radiologist, surg, and oncologist.

Namomi- I agree with all that you said.....I did NOT get my breast removed for pre-cancer....

I've done a lot of research on risk and I've also read anything I can get my hands on about Tamoxifen, so I may be able to help with both questions. 

About one's risk to get BC in the other breast (or the risk to get a new BC in the same breast for those who've had a lumpectomy), generally speaking, having had BC once, all of us have about double the normal risk to get BC again.  This varies by individual depending on family and personal health background. 

It also varies depending on how old you are when diagnosed.  The average woman has about a 12.5% lifetime risk of getting BC, based on the latest North American data.  That's a 1 in 8 chance.  While our annual risk is higher as we age, our total risk actually drops.  For example, for someone in their 40s, the annual risk to get BC is only about 0.14% per year.  Once they are in their 50s, the risk is 0.25% per year.  By their 70s, the risk is 0.39% per year.  But as we age, we "leave risk behind".  So in our 40s, almost all our lifetime risk, about 12.1%, is still ahead of us.  By the time we reach 70, less than 5% of our lifetime risk remains.   http://www.cdc.gov/cancer/breast/statistics/age.htm

In my case, I was 49 when diagnosed.  At that age, my remaining lifetime risk was about 11%.  But because I'd already been diagnosed with BC once, my risk to be diagnosed again doubled, to about 22%.   It's now been a couple of years and I haven't been diagosed again so at this point my remaining lifetime risk is about 20%.  But, as I mentioned earlier, because each of us has a different risk profile, the actual risk % will vary by individual, although the basic concepts of doubling risk once diagnosed and leaving risk behind as we get older are pretty much the same for all of us.

As for how much Tamoxifen reduces breast cancer risk, here's the information from the Tamoxifen clinic trial.  This is specific to DCIS women who had lumpectomies w/radiation (trial NSABP B-24).  The results are based on an average of 8+ years of results.  These are the results on which the approval of the drug was based:

Ipsilateral (same breast) cancer risk (recurrence or new BC)

• Women who took Tamoxifen - 1.419% per year were diagnosed with ipsilateral BC.  Of these cases, 0.59% were invasive BC and 0.829% were DCIS.
• Women who didn't take Tamoxifen - 2.101% per year were diagnosed with ipsilateral BC.  Of these cases, 1.060% were invasive BC and 1.04% were DCIS.
• Therefore Tamoxfen reduced total ipsilateral BC by 32% in total (invasive BC by 44%; DCIS by 20%).

Contralateral (opposite breast) cancer risk

• Women who took Tamoxifen - 0.436% per year were diagnosed with contralateral BC.  Of these cases, 0.371% were invasive BC and 0.065% were DCIS.
• Women who didn't take Tamoxifen - 0.79% per year were diagnosed with contralateral BC.  Of these cases, 0.564% were invasive BC and 0.226% were DCIS.
• Therefore Tamoxfen reduced total contralateral BC by 45% in total (invasive BC by 34%; DCIS by 71%).

http://www.rxlist.com/cgi/generic/tamox_cp.htm (the results from this study are about 1/2 way down this webpage)

Hope that helps and isn't simply confusing!

DCIS is cancer. Pre-invasive cancer, but cancer nonetheless. It is contained within the ducts, but it can invade (ask any of those dx with DCIS w/micro invasion). As yet, they haven't figured out why some DCIS gets outside the ducts and some doesn't. That's why the standard of treatment is lumpectomy+radiation (and maybe tamoxifen).

There isn't a need to change the definition of cancer because DCIS is already included.  My dx was cancer. Ductal Carcinoma in situ.

The DCIS topic reached from the home page of bc.org is pretty clear as well. 

I don't mean to seem abrupt and snippy, but this is a hot button issue for me and many others. There is a pretty good discussion WRT DCIS on "please stop minimizing my diagnosis".

Same as me Trish - except that my suspected microinvasion was dismissed by the final path report (I hope they got it right!). I wouldn't have had my breast removed (April last year) if I hadn't had cancer. At the time of my dx, I knew only one person with bc and she was about to die from it. I was frightened and didn't receive much support from either my support group or any of the other health professionals because it was "only dcis"! I was made to feel that I should count myself lucky (and I was grateful that I didn't have to endure chemo or rads), so I appeared to breeze through the whole thing. As a result, I don't think I really came to terms with the whole thing - am still in that process. I had a snb as well and that has caused my arm to be achy and heavy. I think I am keeping LE at bay so far by drinking lots of water, doing deep breathing and MLD but it is a constant reminder of my cancer experience. I thought I would have the surgery, heal and put the whole thing behind me but every day there is the worry that I will develop full-blown LE. Not cancer?? Hrrrmph!

Yet I feel compelled to say, after being on these boards for several months, that those women who endure chemo etc, inspire and humble me. "There but for the grace of God go I". 

Hugs 

gb 

LCIS does not need to be removed; someone who has a mastectomy for LCIS is having a prophylactic mastectomy to reduce their future risk of getting breast cancer. This is similar to someone who has a mastectomy because they are BRCA positive.  These women don't have breast cancer but are choosing to have a mastectomy because they are high risk to get breast cancer. It's a choice, an optional surgery, a preventative action.   

Someone who has a mastectomy for DCIS is not having a prophylactic mastectomy.  I know, because that's what I had.  I had no choice - believe me, I would not have had a mastectomy if there had been another option.  But the two surgical oncologists I saw were both very clear that there were cancer cells in my breast that needed to be removed.  While I had a microinvasion (so technically I'm not a DCIS patient) I didn't need the mastectomy to deal with the microinvasion - the original excisional biopsy took care of that - I needed the mastectomy to get rid of the DCIS cancer cells.  These may be pre-invasive cancer cells but they are cancer cells nonetheless, like all cancer cells they are growing uncontrollably (a key characteristic of cancer cells) and like all cancer cells they need to be removed before they cause serious harm.   

By the way, although recent research suggests that some LCIS may develop into cancer (rather than just being a marker or risk factor for cancer), the name of the condition called "LCIS" is being changed to Lobular Neoplasia, to remove the term "cancer" from the name.  http://www.imaginis.com/breasthealth/lcis.asp  

The same is not being done with DCIS.  "Carcinoma" is staying in the name DCIS because DCIS is already cancer, it's just been caught at a stage when it's contained within the milk ducts and hasn't yet moved into the breast tissue.  It is pre-invasive, but it's not pre-cancer.

lrm, I would recommand that you go visit another oncologist and get a second opinion. It is pretty standard to do so, even if you like your onc, and you will feel more confortable with your treatment decision.



I beleive that most doc use a scale call the Van Nuys scale to establish the treatment for DCIS. It takes multiple variables, grade, margins, size, age. and translate these into points. It is a very simple scale that you can find on the net or ask them to explain it to you.



Having low grade is really good, that in itself may be the reason that they decided against radiation.

I went thru a similar thing.  I am 38 and was referred to an oncologist to discuss Tamoxifen and we decided that because of the increased risk of blood clots and bone loss that we would wait until I was older and my risk for reoccurance increased and then do the Tamoxifen because then the risk of the breast cancer would be higher than the risk of the blood clots etc.  Because at this point I was looking at it cutting my risk of reoccurance to 3% or so, but increasing my risk of blood clots by more, so it just didnt balance out for now.  I dont know if this helps or not, it was a really tough decision to make, but who know in a year they may come out with something other than tamoxifen that would be just as effective and not have the clot risk . 

Irm,

As you can see from the numerous responses to your post, there are a good number of DCIS "sisters" who have elected not to receive radiation.  In my case, my onc recommended against rads, stating: "It is not a benign treatment."  (I do take tamoxifen.)  Next month I will be 4 years from dx, and am doing fine.

I also sent you a private message, if you know how to access it.

To others reading this, why don't we create a new category: "DCIS, No Rads."  We seem to be a significant subgroup.  Does anyone know how we can create a new post category?

Best to all,

Pam

My surgeon in Pittsburgh unequivocably says DCIS is cancer, just not invasive and highly curable.  Then I go to a support group, and the leader a nurse says in front of the whole group, "you're not like these other ladies here--you're lucky, you just have pre-cancer."  So because this cancer is labeled in different ways, it robs those of us with DCIS of the support we need.

After two biopsies in which they couldn't get clear margins, I had a bilateral mastectomy and one sentinel node removed on each side, with the utmost care by my surgeon to make sure that there was no invasion and no cells left behind.

I didn't go through all this for pre-cancer.  My life and my body is forever altered.  Do I feel lucky?  Definitely, I feel lucky to have a highly curable form of cancer.  Do I feel like an "outsider" in the bc community.  Yes I do.  Most with DCIS have lumpectomies and radiation these days, but due to mine being so pervasive (not invasive) throughout the duct, high grade, necrosis etc, I had no choice except to have the mastectomy.  Second breast removal was my choice--over the years I have had lots of biopsies of both breasts due to calcification.  And I didn't want to go through this emotional rollercoaster ever again!

But mislabeling this condition makes us less a part of the "family" of bc survivors. 

And by the way I didn't go back to that support group.  You're sitting there and everyone is talking about chemo and radiation.  And all you had was both breasts removed!  Even the treatment conversations leave us out.  Everyone says your're lucky and you know you are.  But then again, if you're really lucky you wouldn't be here in the first place.  I don't know why anyone with bc should ever be told "you're lucky".  There are degrees of the disease and treatments, but none of it feels particularly lucky!

Jan

Thank goodness for this website, crazydaisy.  It has given me the most I could hope for in support.

Jan

DCIS is a very serious cancer.  I had 7 clusters that they thought were all DCIS but after the mastectomy also found 1.1 of ICD.  Everyone needs love and support no matter what grade an stage of the tumor

All of my doctors have referred to my condition as "cancerr", and I do believe that by definition it is.  Why did I have a lumpectomy and six weeks of radiation if it's only pre-cancer?  I know DCIS is not life-threatening, but I also know that if left alone, it could become invasive, so I wanted to do whatever I could to get rid of it and reduce my chances of a recurrence.

I was DX'd postmenopausal, so it was suggested that I try Tamoxifen....But..When my BS learned that I had had a heart attack, have five stents and take both Plavix and a whole aspirin daily, she told me that the risks far outweighed the benefits for me...So...No Tamox for me.  

My radoncol tells me..and my BS agrees, that my chances of a recurrence are 5%, and I'm OK with that.  I wish there were something else I could take to reduce that percentage, but there isn't so, I have decided to let that one go and not worry about it.  What other choice do I have?

 Sandy

Jo_Ann, what I understand is that if the cancer cells get out of the ducts, which means the duct cells  lose their ability to contain the cancer in situ, the cancer is then invasive.

Correct me if I am wrong but most IDC start as dcis and that is what gets the doctors all worked up, prescribing the major treatments. They don't want to under-treat and risk the dcis to become invasive.

The main form of DCIS to become invasive is usually comedocarcinoma grade 3, they have set this subtype on it's own due to it's aggresiveness and most closely resembles BC cells.

http://www.med-ed.virginia.edu/courses/path/gyn/breast6.cfm

Jo Ann, thanks for the info you posted -- I've never heard those details before. My surgeon told me that he and the partner in his practice never know what to call DCIS -- cancer or pre-cancer. But he said that it really doesn't matter what it's called -- it still needs to be treated, and treatment for DCIS and any other bc that doesn't involve the lymph nodes is basically the same. Your explanation helps me understand why radiation was not recommended for me even though I had one clear margin less than 1mm.

Jen - I am completely with you on the "lucky" label. I was dx in June, double mast in August, and just went back to work this past week. Many of my coworkers, on finding out that I don't need radiation or chemo, and that I caught it so early, tell me how "lucky" I am. And honestly, when I read some of the stories on these forums, I do indeed feel lucky that I'm not having radiation or chemo. But it's all relative -- you put it VERY well when you said none of us feels particularly lucky!

Sheila