LUMPECTOMY/RADIATION VS. MASTECTOMY FOR DCIS

I am the same as as you are and I had 7mm of DCIS in March of this year.  I was never given the option of mastectomy.  It was always assumed that I'd do the lumpectomy even though I did have the choice of mastectomy.  4mm of DCIS sounds very small.  I don't know why the oncologist would recommend a mastectomy under these circumstances.  But in the end it is up to you.  I also had left side radiation and I am still concerned about the long term side effects to my heart and lungs so I can understand your concern about that.  Remember DCIS is considered a curable cancer and the recurrence rates are very low either way.  Good luck.

Goldengirl,

You articulated so very well all my thoughts and feelings.  I, too, have struggled with this decision.  It is the most difficult I have ever had to make.

For me, I have decided to try and conserve the breast and do radiation.  Sometimes I wonder, especially when I look at this poor little left boobie that is now (before radiation) half the size of the other one.  But, that being said, it is still my flesh and I have my nipple.  I'm kinda attached to it, ya know

Unlike you, I have a strong family history.  Fortunately, however my BRCA was negative.  I also have LCIS which is the lobular form of DCIS.  However, I understand DCIS is treated differently and more agressively than LCIS.

You don't mention any node involvement, chemo or hormornal therapy.  Where are you with that?

I had the Oncotype DX test done -- which is done on the tumor itself to help evaluate distant recurrence.  Has that been suggested to you?  I don't know if it's available for DCIS.

Where did you get your statistics regarding recurrence? And, are they for local or distant?

A hard thing for me to grasp in the beginning is the difference between local and distant recurrence.  Local is the same breast or the contraleteral breast; distant is mestastics anywhere else in the body. 

My surgeon told me that I have a 1 in a 100 chance of contralteral breast cancer and that my survival would not be benefited by a PBM.  You might want to see the thread I started on the ILC list entitled "Contraleteral Breast Cancer, Recurrence, Survival, ...

The other fact that help me make a decision is that even with a mastectomy there are no guarantees.  What is really most important is that the cancer does not mestastize.  We can live with cancer in out boobs, it's when it goes elsewhere we are in trouble.  So the whole point of all treatment is to try and stop that from happening.

I don't know if any of this helps you.  Ultimately, you are alone in this decision.  I could only deal with it with prayer.

God Bless and Keep You.  May you make the right decision for you that you will be comfortable with and have peace about.

The

Goldengirl,

What you are facing is certainly one of the most difficult decisions - if not the most difficult - that you will face through this journey.  I was lucky, I guess.  I had a breast full of high grade DCIS, along with a microinvasion.  My decision was made for me.   I had to have a mastectomy; there was no way to remove all the DCIS in my breast with a lumpectomy.

At first I had no thoughts of a bilateral.  But then, after the excisional biopsy that uncovered my BC, my surgeon put me through a new round of mammograms and ultrasounds on my other breast, just to be sure that everything was okay before I underwent surgery.  Well, they found new calcifications. Since it was calcifications that proved to be the sign of BC in my right breast, I worried that the calcifications in my left breast might be cancer too.  I was sent for a stereotactic biopsy, and decided beforehand that if it was cancer, or even if it was ADH, I would have a bilateral.  Well, it turned out that these calcifications were run-of-the-mill calcifications, benign and totally harmless.  No ADH, no abnormalities of any sort in the breast tissue.  My surgeon then sent me for an MRI; that too showed that my left breast was fine.  So, even though I've had 4 biopsies over the years on my left breast, and even though my risk of getting BC again is higher than average (about 20%), I decided to have a single mastectomy only. What it comes down to is that my natural nipple is important to me.  And I couldn't imagine removing my breast when there was no indication that there was anything wrong with it.  If I was someone who would always be freaked out about the risk of getting BC again, maybe a bilateral would have made sense.  But I'm good at living with the risk.  I've had all sorts of breast problems, lots of biopsies, etc., since I found my first fibroadenoma at age 16.  I'm used to the callback procedure; it doesn't worry me (much).  And I know that although I'm "high risk", my chances of not getting BC again are a whole lot higher than my chances of getting BC again.  If I am unlucky and do get BC again, I will still be happy that I kept my breast (and more importantly, my nipple) for as long as I could.  Whatever happens, I know that I won't regret this decision.

As for symmetry with reconstruction, yes, this can be a factor but even with a bilateral, symmetry is far from guaranteed, so I don't think that this should be a reason to have a bilateral.  If you read the Reconstruction forum, you'll see that it's not unusual to have problems or complications with reconstruction.  It's more unusual for someone to get though reconstruction with perfect results and no problems along the way.  Many women require reworks; breasts don't settle evenly or in the desired location, etc.....  Most women do end up happy with their reconstruction, but it takes time and often expectations have to be adjusted along the way.  Given all the problems with reconstruction, it's not uncommon for someone who has a bilateral to get different results on one side vs. the other.  From the pictures I've seen, I don't find that there's much of a difference in symmetry between women who've had a single mastectomy and those who've had bilaterals.  In both cases, some women have great symmetry and some women don't have very good symmetry.

Ultimately, this is a very personal decision.  Listen to what we all have to say, but then do whatever is right for you. 

BTW, a couple of comments on the data that you quoted.  From my understanding, the recurrence rate after a lumpectomy does not continue to go up every year.  The greatest risk of recurrence is in the first 5 years.  Almost all recurrences occur within the first 8-10 years.  After that, recurrence risk significantly drops.  So if you make it though the first 5 years without a recurrence, you will still have some risk over the next 5 years, but it will be lower.  In the 5 years after that, your recurrence risk will be much much lower.   For example, if someone has a total recurrence risk of 10%, it might be something like 6% for the first 5 years, 3% for the next 5 years, and 1% for the rest of their life.  Once you get through the first 5 years, that first 6% of risk is gone.  

Additionally, with less than 0.5cm of lower grade DCIS, your recurrence risk is quite low to start with.  DCIS recurrence rates after a lumpectomy (prior to radiation) can range from 4% to 35% (or more).  With a small amount of lower grade DCIS, you fall closer to the 4% number.  Here's what the DCIS Info site says:  "In one study, when the DCIS was small and the margin around it was at least a little less than half an inch in size, the chance that either DCIS or invasive breast cancer would recur in that breast was 3% for women treated with lumpectomy and 4% for women treated with both lumpectomy and radiation therapy for a period of up to eight years. This shows that if the margins are sufficient there is actually very little difference; DCIS is unlikely to reoccur, even without radiation therapy."   http://www.dcis.info/understanding_risk.html

Here's info from another site:  "The 10-year risk of getting invasive breast cancer following the most successful DCIS surgery is nearly as low as the average 10-year risk for women who have no DCIS."  In this article, "successful DCIS surgery" refers to a lumpectomy with good margins.  http://www.breastcancer.realage.com/content.aspx/topic/11

If recurrence risk is a big factor in your decision, please ask your oncologist about what your risk really is.  I'd hate to see you make this decision without having the right data. 

i was dx nov2006. it was very scary time for me. i was 48,premenopausal,with all 4 of my grandparents died of cancer (one grandma had breast cancer but died of lung cancer),my father has had cancer. my surgeon had confused me. he told me that it was dcis which ,in his opinion,was really not cancer. i had a lumpectomy on dec. 7,2006--was in hospital at 7am and came home before 3pm same day. surgeon suggested to do radiation treatment too. i went to talk to radalogist. because i am a large breasted he said there would be more pain and i would probably get exhausted. i am raising my 3 year old grandson and already do not have the energy i need. so i have not gone for any radiology yet (it has been almost a year). i have just recently had a mamogram which turned out great. what i do not understand is-- my radiologist and surgeon told me that dcis isn;t really cancer and  therefore no worries, yet after i did not take my treatment i got a letter from both of them  they said that my dcis were high grade/aggressive and treatment is highly recommended. if anyone can clear up my confusion-- why is dcis not cancer but then why the treatment a must if it is not cancer in the first place. i am seriously thinking of a double mast. -- jan 2008 my grandson goes to live with his mother permanently. i also feel like i have not regained my energy from surgery 11 months ago-- does anyone else feel ;washed out/more tired?

Maureen,

I don't have the studies I have viewed available to me right at this moment; however, according to my research prior to making my decision the result is basically the same if you pick Mastectomy or lump/rads.  Your reoccurance rate is about the same.  I was also assured by my rad onc that the risk is extremely low for damage to the lungs or heart.  I was not really afraid of that because they are so precise with measurments and remeasuring and making sure the beams are hitting exactly the same spot every day.  I did have some fear about the rads scattering remaining cancer cells to my other side as I've heard of this. 

Even though I ended up with a large area of DCIS (enough to have a mast) I went with a lumpectomy (had 2).  If I had known before the 2nd procedure that I had as much as I did, I would have opted for a mast right than and my surgeon would have as well.  In retrospect, I wish I had a mastectomy.  I am 1 year out of rads and facing reconstruction because they took out so much there is a noticable difference in my breast size.  I had implants prior to dx and I now have capsular contraction.  I'm concerned about how my tissue will respond to surgery.  It's a big decison, but you have to be ready to deal with limiting your options after rads.  I am only 38 and I had a high grade DCIS with comedo necrosis so I am at a higher risk for reoccurance....I think I made the wrong decision.  For you, it's a much smaller area and it's not high grade.  I feel for you because your decision is not as clear.  I am surprised that  your docs are saying have a mast.  Most women on here seem to have to fight for it if they have your path report.  There is no right answer in your situation.  It has to be what feels right to you and I know that's the hardest part of all of this.  I understand the insurance issue as well.  I am waiting on my recent MRI results because they are watching a suspicious area on my other breast to see if I need a biopsy.  I have also met my deductable for the year and I'm hoping to get everything out of the way before Dec 31 if needed....but don't let that rule your decision.  In the long run, you have to live with your what you decide.  Good luck to you!

Maureen,

The reason that I provided you with the links to the two articles included in my last post was because these seemed to most closely address your specific situation. I have read dozens and dozens of articles and studies about DCIS - everything I can get my hands on - in the two years since I was diagnosed. I was not in any way suggesting that the information I provided applies to all DCIS patients however based on what you said about your pathology, the information did seem somewhat appropriate for you. I apologize if the data sources were not the most current or ones you consider most reliable. These were just the easiest to understand articles explaining these points; I've found the same data in much more complex articles, but, having confused too many women in the past by referencing detailed, complicated studies, these days I generally opt for the most simple.

The reason that I tried to narrow the data down was because DCIS, like all cancer, has lots of variation. To look at all of the data that has been accumulated can easily lead any one individual to the wrong conclusion as it relates to their own specific situation. I've seen numerous studies that show that the recurrence rate after a lumpectomy for DCIS, prior to radiation, can range from 4% to 35% (or even higher). The difference is the amount and type of DCIS, and the size of the margins. Large amounts of high grade DCIS have the highest recurrence risk; small amounts of low grade DCIS have the lowest recurrence risk. Those with narrow margins are at greater risk of recurrence; those with wide margins are at lower risk. Although your pathology may change after your next surgery, at this point, what you know is that you have a very small amount of lower grade DCIS. I understand that one of your margins is only 1mm, but you've indicated that you will be going back for more surgery, so I've assumed that when your surgery is done, you will have satisfactory margins. Given this, your recurrence risk is likely to fall within the lower range of the DCIS recurrence risk numbers.

I completely understand that any woman who has been diagnosed with BC is at increased risk for recurrence of the original cancer, or a new occurrence of BC in either breast. In fact, I often post explaining this to those who are newly diagnosed - many women don't understand that in addition to their recurrence risk, they also are at higher risk of getting a new BC, in either breast. Looking first at the new BC risk (vs. recurrence), I understand that someone who is diagnosed at the age of 40 and is assumed to have 50 years to live (lifetime risk is often calculated to age 90) may have a BC risk of 25%, whereas someone who is diagnosed at age 60 and is assumed to have 30 years to live may have a BC risk of only 15%. So, yes, in a sense, the longer one lives, the greater the risk of getting a new BC. I also understand that our risk to get BC is highest when we are older. But the point that I was trying to make - and unfortunately was unsuccessful at making - is that risk does not continue to add up every year. Hopefully this explanation is better than mine:

"You may have heard that the average woman's risk of invasive breast cancer is about 1 in 8 or 12%. This is the risk up to age 80. Of this 12% risk, 2% occurs by age 50. From 50 to 70 the average woman's risk of breast cancer is 6% and from 70 to 80 it is 4%. The 2% plus 6% plus 4% add up to 12%. As a woman goes through each age without a diagnosis of breast cancer, she leaves behind the risk associated with it. To put risk in another context, you are not at risk of being in an accident on a road you traveled yesterday. You can only be at risk for today's roads and the roads you'll travel in the years ahead.

The risk of invasive breast cancer increases with age, so the risk in a given year to a woman in her 70s is higher than the risk in one year to a woman in her 40s. However, as a woman gets older, her risk to age 80 decreases because there are fewer years left before she will reach age 80." http://www.dcis.info/understanding_risk.html

This concept of "leaving behind risk" is very important when discussing recurrence risk. Certainly one's total recurrence risk is greater if you look over the next 20 years vs. just the next 5 years. But this is not inconsistent with saying that your risk goes down for every year that you don't have a recurrence. It's also not inconsistent with saying that your annual recurrence risk is lower 10 years after you've had cancer than 3 years after you've had cancer. These are simply the facts. Here is a chart that shows that the highest recurrence risk is in the years immediately after you've been diagnosed and treated:

So, using the data that your doctor gave you, while your recurrence risk may be 15% over the next 20 years, your recurrence risk at 20 years is likely just a fraction of a 1%.  I say this because according to your doctor's numbers, your risk between years 10 and 20 is only 3% (the increase from 12% at year 10 to 15% at year 20).

Lastly, with regard to your HER-2+ status, often HER-2 status isn't provided for DCIS women because more than double the % of DCIS women are HER-2+ vs. women who have IDC. There isn't a good understanding as yet as to why this is, but as a result, HER-2 results are not considered reliable and/or meaningful for DCIS women. Additionally, Herceptin, which is given to women who have invasive cancers that are HER-2+, isn't approved for DCIS women (last I heard, anyway). I've read quite a few articles on HER2 expression in DCIS women. One in particular is very interesting. It's far from conclusive, but one of the findings is "that HER-2/neu gene amplification was inversely associatedwith the risk of invasive progression in DCIS patients". The authors go on to speculate that HER-2 amplicafication in DCIS might actually reduce the likelihood of the development of invasive cancer. Http://cebp.aacrjournals.org/cgi/content/full/11/6/587

More studies on this are happening. Here's an excerpt talking to a study that's probably underway now (given the date of this excerpt) testing Herceptin on DCIS women: http://www.ingentaconnect.com/content/bsc/tbj/2007/00000013/00000001/art00012;jsessionid=1bq3z5hykb04g.alice?format=print

I hope this helps clarify some of my earlier comments.

Ditto for me, Beesie!

Me, too Beesie!

After 2nd opinion with rad onc, I made the decision to go ahead with rads.  One of the things that got me thinking was the idea to not think about what my options would be if I had a recurrence, rather to do what I could right now to avoid a recurrence.

If you don't go for rads, have the Drs look for a clinical study you can participate in. 

take care.

i had dcis in 2006, had lumpectomy and radiation, getting ready for another mamo in Jan.  I had the same question as some other people.  The doctors said the DCIS was not cancer, but insisted on surgery and radiation.  I did it because I do have a family history, but my BRCA test was negative.  Is DCIS really the worry that the medical people want everyone to believe?

Right on Beesie.  I get tired of hearing DCIS called "pre-cancer".  Apparently even some in the medical community are still behind on this, but the trend now is that DCIS is cancer--cells growing out of control.  As Beesie said, it can become invasive and it should be treated aggressively.

The treatment is either lumpectomy and radiation if you get clear margins.  If not, then it's mastectomy.  And the grade of DCIS and the size are so important.    To me risking recurrence was just not an option.  My DCIS was high grade, aggressive, and they said had been there for a long time.  I had a mammogram every year--just couldn't believe this could get so far without being caught.  I was very, very lucky that it hadn't become invasive.  Knowing I had calcifications in my right breast as well, I opted for a bilat.  From a peace of mind standpoint, I know I had the right decision.  Was I happy to lose my breasts.  Not at all, but I am so glad I don't have to look back. 

There are options, but man, you can't believe that you have to make these decisions.

Good luck and best wishes!

I love what you wrote ... This is my story....This breast cancer stuff sucks. At 42 diagnosed with LCIS, age 44 Atypical Ductal Hyperplasia and age 53 DCIS high grade necrosis. The findings among calcifications, very small and margins were clean during lumpectomy. My mom's mother died of breast cancer at 42 years old. My mom had I believe had DCIS at 73 years old with 35 sessions of radiation. Yikes! They said I would need 16. My BRACA was negative. But we all know this is not a profound result when negative. It could be that they just didn't find that particular gene yet. I originally started at NYU - wonderful doctors and was going for a bilateral mastectomy with DIEP Flap construction. Then I got some pressure about getting a second opinion and then went to Memorial Sloan Kettering who said I didn't need a bilateral mastectomy. I had gone for the assimilation for radiation. I have not had radiation yet. Diagnosis was on 10/28 and lumpectomy on 12/17. But really wondering if I made the right choice. I went from age 44 to getting Atypical Ductal Hyperplasia to DCIS high grade in 9 years. I feel like I am on a faster cycle in maybe developing invasive cancer. Losing my breast does seems devastating as well. I am a 40 DDD (in good shape) and I was told the best the plastic surgeon can give me is a C with my own skin and that sounded hesitated. On the other hand, I would be a real lousy patient if I got cancer. Both choices seem to stink. LOL. I wish there was some test that could determine your next possible reoccurrence. But I am asking for miracles. Signed... "Sitting on the fence!"

A friend showed me an article in the October 12, 2015, issue of Time magazine "Why Doctors are Rethinking Breast-Cancer Treatment" which is actually more about overtreatment especially for DCIS. I suggest reading it.

I was surprised to read this thread, that mastectomy would even be recommended for DCIS, whereas I (who does not belong in this forum) have invasive ductal carcinoma, and never was it suggested that I get an mastectomy, and I am also premenopausal. I'll attribute that mastectomy recommendation due to the fact that it was back in 2008.

My radiation oncologist has assured me that he plans the radiation (on my left breast), using CT scan in the planning process, so that none will touch the heart. So, I'm going with the radiation recommendation.

Katja23, I'm glad that you've found a treatment route that gives you confidence. I wish you every good thing in your progress with this disease, including, hopefully, that you will never see it again, and that your side affects will be minimal and short-term. We're all unwilling members of this group, and we're all doing the best we can to get through to the other side of it and on to healthy lives.

As for me, no doctor I talked to denied that my lung would get a dose of radiation if I went that route. One radiologist lied to me and tried to bully me into making the treatment decisions that he preferred. But he didn't deny that the lung was going to take a hit. What he told me is that the damage would be "minimal." He obfuscated about the potential side affects, and complications and he lied about his own record. Why he did this, I'm not sure, since he's considered a top gun (pun intended) at a national NIH center, which makes him a top gun in this field.

Among other things that my docs didn't do in their zeal to persuade me to have radiation was read my medical history. (I mean that literally. They didn't read my chart.) They also didn't examine me to see what shape my lungs were in. That didn't happen until I switched to other docs who were a bit more patient-focused and a lot less peer-focused.

Once docs took a serious look at my lungs, nobody mentioned radiation again. It appears that I already, walking into this, have a 30% lower lung capacity (both lungs) than I should have. It seems that radiation would take another 15% (or more) of my right lung. That's the "small slice" one of my docs who was trying so hard to persuade me to have radiation said I would lose.

Now that somebody has actually examined me and considered me as a whole patient with a medical history and an entire body, they are not only not talking about radiation, but they are concerned about how well I will tolerate the long time under anesthetic for the mastectomy. Reconstruction is off the table because it would be too dangerous for me to undergo.

I know -- KNOW -- that my asthma will not tolerate radiation. I knew it as soon as I read the literature and saw the damage the radiation would do. I've done the fish-on-the-river-bank-gasping-for-air deal already. I do not want to end up on oxygen or gasping and coughing for the rest of my life when surgery will get me out of radiation altogether. I dread losing my breasts. I really dread it. But if it's a choice -- and I believe it is -- I chose being able to breathe.

I'm not telling you all this to defend myself. It is, as I said earlier, MY life, and MY body, and all the consequences are mine. I will be losing MY breasts. If I chose radiation, I would be endangering MY lung. I'm the one who will be flat-chested. I'm the one would be on oxygen or wheezing and coughing if I went the other route.

Cancer is not an easy 1-2-3 cooking recipe deal. The stats docs give us are not the certainties they pretend. The numbers actually swing from one study, one set of variables, to the next. None of these stats take the individual variables of any individual woman into consideration, which means that none of them are about me, my situation, my life.

I chose -- there's that word again -- to read extensively about this disease and its treatments. I also read a good bit of the palaver about "over-treatment" and such. I think at least a bit of that is related to costs rather than patient welfare. In other words, it's political. I also think that preserving the breast has become such a high priority with docs that they are sometimes willing to inflict real and unnecessary harm on their patients to do it. They excuse this by focusing exclusively on the cancer and ignoring collateral damage to the patient's body from the cancer treatments.

No one can ever tell any of us that we are cured. Cancer isn't like that. It's not like appendicitis, where the doc can cut it out and say for certain, "It's cured and it won't be back." We will live with the possibility that the beast still lives in us all the rest of our days. But mastectomy gives the best odds of no recurrence.

In my case, radiation plus hormone therapy would push me down to about a 7% chance of recurrence, while bilateral mastectomy would give me odds of less than 1% up to 2%, depending on the study. I have read other studies with different odds, sometimes hugely different, but the overall trend is the same. What I did is try to use parallel studies. What the docs who talked to me were doing was mixing them to get the numbers that were most favorable to their arguments. I knew this because I'd read the studies they were referencing.

Of course, if I get a recurrence, then my true "odds" were 100%. It's always a roll of the dice.

The radiologist I mentioned earlier didn't deny this. Instead, he assured me that "If it comes back, we can treat it." What he left out of this -- aside from the fact that "treating" it didn't sound as cushy to me as it obviously did to him -- is that I'm already 68. If it comes back, I'll be older and weaker. I won't be able to stand up under as much of his magic in the future as I can now. That's just a fact of aging.

This is long, and I apologize for that. I'm taking the time to explain my situation in such detail because I want to do my part to derail this save-the-breast-no-matter-the-cost-to-the-woman train that's running in medical thinking right now. The woman, and not the breast, should be the primary concern. That includes issues of quality of life.

The docs I ultimately fired refused to treat me as a whole person with a medical history and an entire body that would react to their ministrations. They were set in concrete on treating the cancer as if it was in a petri dish rather than in my body. That's bad medicine. The fact that it happened at an NIH center makes it appallingly bad medicine.

Women should make their own informed choices about what treatments they take. It's their right as human beings.