DCIS - cancer or Pre-cancer?

This discussion comes up a lot although I am not sure why. Doctors and patients seem to disagree. In my case, all my doctor's refered to DCIS as cancer. I was never led to believe it was not. I was assured that it was not life threatening and "curable". DCIS stands for Ductal Carcinoma In Situ. The "carcinoma" part means that it is cancer. The "in situ" means it is in place and non-invasive but it still is cancer. The more important point for me at least is that the treatment for DCIS is the same whether it is called cancer or pre-cancer. I ended up with a mastectomy - I personally would not have chosen a mastectomy for a pre-cancerous condition! Your worries and concerns are very real. I would look for a new surgeon and radiologist. You will be following up with these doctors for many years to come and you need to be absolutely comfortable with them and their diagnosis.

I find the terminology annoying because they put you through the whole drill -worry, surgery, radiation, hormone therapy. If it isn't cancer then why go to all the bother ?

AND they include women with DCIS in the cancer survival statistics. Some cynics feel that a lot of the "improvement" in survival rates over past decades has been because they include women with DCIS, who aren't at great risk of dying if treated, in those stats.

I think take the high road and assume they're saying "pre-cancer" so you won't worry. It certainly doesn't stop them from treating and billing you for it!

I do the coding for our medical office and there's 3 types of "malignancies" listed under breast cancer: Primary, Secondary, and In Situ. Then there's the "Benign" breast conditions. So the standard national code books identify DCIS as a malignancy.

Recent reading, I think from this site, states that LCIS will become known by a different name to distinguish it from a malignancy since it's actually a benign breast condition that increases risk. LCIS isn't found in the code books and will be known as lobular neoplasia.

When I read the codes my radonc used for bc treatment they were both DCIS and bc. as the radiation was used to eliminate any cells that were outside the area removed, including anything that might have been invasive.

I chose not to take tamoxifen or an AI without trying it first. I decided the absolute risk reduction was small. Relative risk statistics may make it seem like you're getting a lot of bang for your buck, but figure your absolute risk.

DCIS...is cancer just by definition...DUCTAL CARCINOMA IN SITU ...that in English is cancer in the milk duct of the breast, but confined to that area. Not sure why this becomes such a large discussion...but..that is what it is!

Hi Cyd. There was a recent discussion on a thread titled "What if I don't have a Mastectomy" that (over two pages) explored the "pre-cancer vs. cancer" debate. There were a couple of particularly sensible replies near the end of the thread that I can comend to you...particularly the one from Beesie!

LisaAlissa

The C in DCIS stands for carcinoma, (aka "cancer"). It is "pre-invasive", not "pre-cancer". You still have to be treated since it is NOT BENIGN. That's all that matters. I hate it when doctors "belittle" this diagnosis, then suggest cutting off our breasts! WTH? Unfortunately DCIS makes all of us members. Welcome to the group where nothing seems certain.???
Patti

I had lumpectomy then a mastectomy. My second time around, DCIS was found, not detected prior to mastectomy. My surgeon said the DCIS was cancer. Just hasn't broke through the duct wall yet.

And yes, NaomiS, my surgeon did mention what both you and Rose did - DCIS is mixed in with various treatments to make survival look better.

NaomiS - my insurance agent told me that since I had a mastectomy it was like not having cancer at all. (that didn't make me mad - glad cause it meant I got insurance)

I was Stage 1 first time and for recurrence. So maybe that applies only to St. 1???? And DCIS????

I already had life insurance and got insurance to pay off house in case of my death -- and he said that would include cancer.

I think a lot of the confusion with doctors is that NCI and NIH refer to DCIS as a pre-cancer, or a "condition" but do not use the word cancer. Almost all research and teaching hospitals do refer to it as cancer...as Rose said, DCIS is now used in cancer-survivor statistics, and per my son who works at NIH, this was through the insistance of the research institutions. Better stats, more money for research...but whatever it takes, I'm in favor.

The only proven hormone treatment for DCIS is tamoxifen. There are studies going on with other AI's now - are you in one of them? I have just been told by my surgeon and now have seen two medical oncologists about hormone theraphy and all say anything other than tamoxifen is off protocol. You can check this at NIH and the American Cancer society or even this website. The first Dr. said how they had great feelings about Evista treating DCIS but after trials found out it was only good for invasive. The Armidex you are taking will help prevent invasive cancer though. The trial has another couple of years. One oncologist felt the AI's would be good for DCIS and the other felt they would end up like Evista. Maybe you are in a study and do not know it. I certainly would ask your doctor about it. He certainly should be aware of the approved treatments - most doctors would not prescibe the AI's to DCIS patients because of the threat of lawsuits.
Anyway, I would question him on this. Just print out the treatment from the NIH or this website and see what the reaction is.

Take care - be healthy,
Connie

melmedic06,

What they give post-menopausal women with DCIS is Tamoxifen. I was just post-menopausal when I was diagnosed with DCIS w/ a micro-invasion. The only drug that my oncologist discussed with me was Tamoxifen. Because I'd had a mastectomy, he recommended against it, but if I'd had a lumpectomy and had a higher risk of recurrence, that's what I'd be on.

Connie,

You've got a difficult decision to make. Tamoxifen is a great drug - it can reduce the risk of recurrence by about 40%-50% - but it also comes with a small risk (about 2%-3%) of serious side effects and a long list of possible "quality of life" side effects. For someone who has a high risk of recurrence, and particularly, distant recurrence (mets), taking Tamoxifen can be a no-brainer, an obvious decision. But for those of us who have a small risk, it's really a question of personal choice. How much recurrence risk are you willing to live with? How much risk reduction is enough to warrant the risk of side effects and the possible discomfort? The answer to these questions is different for each of us.

In my case I was 49 when I was diagnosed with extensive high grade DCIS (lots of it - at least 9cm or more). I also had a microinvasion of IDC. I had a single mastectomy and an SNB. My lymph nodes were clear. My oncologist recommended against Tamoxifen for me. His explanation was that with DCIS, even with a microinvasion, after a mastectomy my risk of recurrence is only about 1%. While hormone therapy can reduce recurrence risk by about 40%-50%, for me that would be only a 0.5% benefit, compared to a 2%-3% risk of serious side effects from these drugs.

The other factor he asked me to consider, however, is the protection that Tamoxifen provides to my remaining breast. Connie, I'm surprised that your doctor said your risk is the same as the general population because from everything I've read, and from what my oncologist told me, my understanding is that anyone who's been diagnosed once with BC, has a risk of getting it again - not a recurrence but a new primary - that is about double the average. In my case, even for this benefit, my oncologist recommended against Tamoxifen. He said that my lifetime risk of getting BC in my remaining breast is around 20% - about 1/2 a percent per year for the next 40 years. The way that Tamoxifen works, if you take the full 5 years of therapy, you get full benefit (about a 40% - 50% reduction in risk) for about 10 years. After that, studies have shown that the benefit continues, but at a declining rate. So I might get a total benefit in terms of risk reduction of about 4%-5%. That's not bad - and a lot of oncologists do recommend drug therapy to get this type of benefit - but my oncologist felt that it wasn't worth the combined risk of serious side effects (2%-3%) plus the very high likelihood of minor side effects and quality of life issues that come from taking these drugs. I wasn't sure that I agreed initially - I felt like I wanted to be doing something to protect myself - but after I researched it myself, I did agree. So I decided not to take anything.

Connie, in your case, your doctor said that by taking Tamoxifen your risk can be reduced to 2%-3%, which suggests, as you'd mentioned, that your risk if you don't take Tamoxifen is about 4%-6% (since Tamoxifen reduces risk by at most 50%). So your benefit is 2%-3% - pretty much the same as the risk of serious side effects. That's an even trade-off, and you would have to decide which risk is scarier for you - the higher risk of getting a BC recurrence, or the risk of possible serious side effects from Tamoxifen. Of course, you also should consider the secondary benefit of protection of your other breast. Being in your 60s, you probably have about a lifetime risk of 15%. So if you take Tamoxifen for 5 years, you can probably reduce this risk to about 10%-11%. Does this additional benefit sway you in favor of taking Tamoxifen? Does it compensate for the risk of side effects? Only you can decide that. And one other consideration: with your medical history, is your risk of serious side effects from Tamoxifen about equal to the average, or greater (or lower) than the average? This should be weighed into the decision as well.

The BC risk percents that I provided are my estimates only. The best thing for you to do is ask one of your doctors to confirm the specific numbers for your situation. What is your recurrence risk with and without Tamoxifen? What is your contralateral BC risk (the other breast) with and without Tamoxifen? And your gyn or PCP may be able to help you understand your risks from Tamoxifen. Then you'll have the data you need to decide.

I hope that this helped. And sorry for being so long-winded!

Connie, my oncologist told me that my lifetime risk (to age 90) of getting BC in my remaining breast is about 20%, which averages 0.5% per year for 40 years. So based on this, I guessed that your risk would be about 15%. BC risk goes up as you get older (it's highest in your late 50s/early 60s, I believe) but as you get older, the number of years you have to get BC goes down. So yes, I agree that because you are older, your lifetime risk would be lower. But being in your 60s, you may be in your prime risk years now (although depending on your age, you might be past that).

As for how much benefit either of us would get from taking Tamoxifen, I figured that it's about the same for both of us since the benefit does run down over time. If we each started taking Tamoxifen today and took it for 5 years, we'd each get some level of benefit for around 15-20 years (based on the latest studies). Initially the benefit would be a 40%-50% reduction in risk, but this drops over time to 30%, 20%.... That's how I figured that we'd each get about a 4%-5% benefit in terms of risk reduction. In fact, what's interesting is that my oncologist suggested that if I wanted to take Tamoxifen to protect my remaining breast, it would be better to wait 5 years or so before I start, so that I get the highest level of protection during the years in which my risk is the greatest. Since the protection is unlikely to last my whole life (assuming I live till 90), I wouldn't lose anything by starting later.

I agree with you - if only we knew that if we had a recurrence, or a new BC, that it would be DCIS again. That would make the decision so much easier!

Hello...I, also, have invasive DCIS. What was your choice of treatment(s). Lunpectomy vs. mast?

Holland,

Also, what do you mean "invasive DCIS"....do you have invasive as well as DCIS?