Recurrence Rate Disagreements

Very tough decision.  I have multicentric (separated by 4.5 cm) DCIS, have small breasts (34 barely , and am having a lumpectomy.

Just going by what you wrote and if it were me (and I know it's not Sweatyspice so take this with a grain of salt), I would go with the lumpectomy.  Three of the four are quoting acceptable recurrence rates (acceptable again, to me). 

I know that if I have a recurrence the eventual mastectomy results may not be ideal-looking because of having already had a lumpectomy.  But I am willing to take that risk.  Keeping the breast and its sensation is very important to me though.  Everybody is different in what they consider paramount. 

 ETA:  My breast surgeon, who has been doing this for three decades, was the one that told me I was a candidate for lumpectomy.  He wasn't sure until he got the mammo scans.

I had a lumpectomy followed by a mastectomy. All cancer was DCIS. However, it was grade 3, comedo necrosis and at the time, it was thought to most likely be invasive (which it was not). First surgery had one smaller margin 1.5 mm, and pathology showed 8 small tumours over two quadrants of my breast. I personally wanted a mastectomy from day 1 but my surgeon said she thought she could get it all with a lumpectomy and that we can always go with a mastectomy if needed but we can't undo one should a mastectomy be unneccessary.

I would have never been satisfied that there was no cancer unless I had a mastectomy. It turned out, all cancer was removed in the original lumpectomy.

I was also very worried about having radiation over my left breast.

I was told that life span would be identical regardless of lumpectomy or mastectomy as long as they got it all. However, the recurrence rates were all over the map. It was like let's throw a dart and come up with an answer. I was told that in my case, being grade 3 was the most important part of the pathology when it comes to recurrence.

As for poorer outcome of reconstruction, I can't say for sure. I'm not there yet. However, I know my surgeon said that for the mastectomy she needs to start cutting exactly where she cut for the lumpectomy. Perhaps it was to do with having better reconstruction or perhaps it is something to do with pathology. Not sure.

One thing I do know is that my new surgeon said that if I am even thinking about having my other breast removed, she will not do any p/s on it to make it look like the reconstructed breast. She said she wants absolutely no scars on the other breast and that she will do one step reconstruction with Alloderm so I would wake up with the implant. Unfortunately, the first breast is not able to have one step because I had a tissue expander.

I am a worrier and don't want to worry about breast cancer which is why I want another mastectomy. I also think my age (57) has a lot to do with it.

The right answer (the right answer for YOU) will come to you. You'll know it's the right answer even if you still have doubts.

It's not surprising that you are getting different answers to your question about your recurrence rate risk - the fact is that it's impossible to know what your recurrence risk is until after you have surgery.  There are several factors that influence DCIS recurrence rates after a lumpectomy and some of those factors simply can't be known until surgery is complete.  The specific factors that influence recurrence rate are:

- Amount of DCIS: Although doctors estimate the size of the DCIS tumor(s) prior to surgery, the actual size might be different - there could be more DCIS than expected, or less

- Grade of DCIS and whether or not there is comedonecrosis

- Size of margins: Margins are considered "clean" at about 2mm or 3mm but recurrence rates are much higher for those who have 2-3mm margins vs. those who have 10mm margins; the size of the margins can't be known until after surgery

- Age of the patient: Younger women tend to have more aggressive cancers and a greater likelihood of recurrence.

- Other treatments: Radiation generally cuts recurrence risk by about 50%; Tamoxifen generally cuts recurrence risk by about another 45%.

Here are a couple of articles that talk about DCIS pathology and recurrence risk after a lumpectomy:  http://www.breastdiseases.com/dcispath.htm       http://theoncologist.alphamedpress.org/cgi/content/full/3/2/94/T2

And this article talks about how age is a factor:  http://www.breastcancer.org/treatment/surgery/new_research/20091012.jsp

As for recurrence rates after a mastectomy for DCIS, although rare studies have put the recurrence rate as high as 7% or 10%, the vast majority of studies (personally I've probably read the results of 25 or more) put the recurrence rate in the range of 1% - 2%, regardless of pathology.  There was however a recent study that showed that close margins after a mastectomy (from less than 2mm to negative margins) could increase the recurrence risk.

To your question about what happens to your risk level after 5 years, it's important to understand that most recurrence happens within the first 5 years.  So while there continues to be a risk afterwards, even as far out as 20 years, the risk in out-years is considerably smaller.  The following article doesn't talk specifically about DCIS, but the chart is useful in showing how recurrence risk works:  http://www.gaeainitiative.eu/word_page/BC_Recurrence.htm

So let's say that your 5 year risk is 12%, after radiation and assuming you take Tamoxifen.  Note that this would be equivalent to approximately a 37% risk post-surgery, without these two treatments.  That's probably not unreasonable for someone with your pathology, assuming moderate but not large margins.  If your 5 year risk is 12%, your 10 year risk might be something like 17%, your 20 year risk might be around 19% and your lifetime risk might be 20%.  It's important to realize that while your total recurrence risk goes up as you get older, your absolute risk goes down.  This is because as you get through the years without having a recurrence, you leave the risk of those years behind (for example, you aren't at risk of having an accident today because you drove your car yesterday).  So to the example above, while your risk in post-surgery years 0 - 5 is 12%, your risk in years 6 - 10 is only 5% and your risk in years 10 - 20 is only 2%.  My numbers are all just examples, of course.  Back to what I said at the start, there is no way to know your actual risk level until after your surgery is done.  And that probably doesn't help you with your decision!

Sweaty Spice .... to answer your question. The first dx of dcis was high grade with comedo necrosis. Because of the size my surgeon took out my sentinel nodes, which were negative. After some research, and a meeting with a oncologist radiaologist I decided against rads. My surgeon suggested I see a oncologist. I said I already decided not to take tamoxifen due to its possible risk. She said sense it was just dcis that if it was closely watched it would be caught early and taken out. I was happy with what she said, and glad she supported my decision. I was one of the unlucky ones....one year later, I again was dx with high grade dcis. My first surgeon was wonderful, but on the recommendation of my naturalpath doctor, I saw a different bc surgeon. My final pathology report was 100% high grade dcis with necrosis...multifocal with .03m margin. Because she knew I was concerned about cost, she didn't push radiation or tamoxifen. She said if it happened again, I need to get more serious about it and do a mx...I agree. After finding out this past Spring that I'm hypothyroid, I've learned since my cholesterol is very high that I'm high risk for a stroke or heart attack. If I had taken tamoxifen, it could had killed me. Radiation...hmmmm...still not sure about it...would only consider it if the dcis was invasive.

I know that to many my decision is not a good one. Possible. With all the information out there concerning recurrence it is confusing for someone who is newly dx. Someone like myself laches on to information they want to hear. The only thing I might have done differently, the second time around, is to have a mx with reconstruction. But...I recently had a mri (don't know results as of yet) it would be caught early, before it gets invasive, and then do the mx with reconstruction.

About my friends, friend who now has stage 4 bc. As...I understood it ... her cancer is ductal carcinoma that became invasive. It was invasive when they found it...and at that time I believe a few nodes were involved. They did not do surgery right away. She was given chemo to reduce the size of the tumor...but the tumor grew and by the time the chemo was done it had spread to bones, and a few months later to her brain. I did not get this information first hand...although I did speak with her friend when she was first dx. I think it was hard for her that I did not chose treatment and seem to be fine about it...and she did, and is not doing well...although she did not consider she had an advance cancer which should not be compared to dcis dx.

No matter what her original dx was...I'm shocked that in a 6 month time the cancer has moved so quickly.  

barry, I'm afraid my understanding is different than yours. 

As I understand it, a percentage of DCIS cancer cells over time undergo a molecular change that enables these cells to break through the milk ducts and become invasive cancer.  For those who have high grade DCIS or DCIS with comedonecrosis, this risk is greater and more imminent.  If DCIS cancer cells remain in the breast after surgery and are not killed off by radiation or Tamoxifen, it's likely that these cells will continue to grow and multiply (as cancer cells do) and at some point the patient will be diagnosed with a recurrence.  Depending on when the recurrence is discovered, the cancer cells may still be DCIS, or the cancer cells may have undergone the molecular transition and become IDC. 

I have never read anything that suggests that if DCIS cancer cells are not treated with radiation and/or Tamoxifen, that the recurrence is more likely to be DCIS and not invasive.  The counterpoint to that statement would be to suggest that radiation and Tamoxifen are more likely to lead to an invasive recurrence after an initial diagnosis of DCIS and I've certainly never heard anything like that.  If there are any studies that suggest this, I would be very interested to read them.  I would think that something like this would significantly change the treatment recommendations for DCIS.