confused by this statement

pattimay

I have been reading everything I can on DCIS.  Pathology report went out to another hospital because they were '"on the fence" whether or not I have ADH or DCIS.  My surgeon had to take over 25% of my breast and still could not get a clear margin.  At my followup appt. he told me all this and said if it comes back ADH then I will be monitored VERY carefully.  The DCIS he said since my breast are small he cannot do a reexcision so if I decide he would do a mastectomy. He never mentioned radiation.  But I read this on the forum from Jan

About 25% to 50% of women whose DCIS is treated by surgery ONLY (without radiation) eventually develop an invasive cancer. Most of those cancers (recurrences) happen within the first 5 to 10 years after a DCIS diagnosis.

Does this mean that even with mastectomy I could stil develop invasive cancer if I don't have radiation.  I thought a mastectomy would eliminate the need for radiation when it's just DCIS and not invasive yet.  Hope I'm making sense with my question.  I want to be knowledge for my appointment tomorrow since I was just called that the pathology has come in.  Thank you ladies ...again.

Beesie

Usually after a mastectomy for DCIS, radiation is not required.  But there are exceptions to this, if the surgical margins are extremely small.  If your area of DCIS is near the chest wall, this could be a concern and there is no way to know whether radiation will be needed or not until after surgery. 

As for recurrence risk, for those who have a mastectomy for DCIS, generally the recurrence rate is in the range of 1% - 2%.  The exception would be if the margins are extremely small and that's when radiation would be given.  With radiation, hopefully the recurrence risk would be brought down close to this 2% range.  If a recurrence does occur (whether one had radiation or not), as with any DCIS recurrence, there is always a risk that the recurrence won't be found until after it has become invasive.  But for someone who had a mastectomy for DCIS, this risk would likely be less than 1%.

TOB

Pattimay,

Check out http://www.dcis.info/treatment-options.html if you have not already. I've never been quoted or seen the 25-50% figure that you cite.  Most stats say something like 8-10% and that applies to women who have a lumpectomy.  The risk after mastectomy is generally quoted as 0-2%. 

You don't mention whether your DCIS is low, moderate or high grade.  The grade and size of your DCIS and whether it is in one spot or several spots within the breast play a big part in what type of treatment is recommended.  Be sure to get at least a second opinion on what course of treatment is best for you.  I do agree that some DCIS is probably overtreated, but you have to decide what you can live with when you have all the information necessary to make an informed decision.

I never wanted a mastectomy, but ended up having no choice.  I've had a unilateral mastectomy for extensive, multifocal, high grade DCIS.  My Van Nuys score was 11/12 so I had a high chance of recurrance with lumpectomy and rads.  Post mastectomy, I don't need any further treatment other than to finish my reconstruction and yearly monitoring on my healthy breast.  As far as I'm concerned, I'm cured.  I'm not wasting another minute worrying about breast cancer until and unless somebody tells me I have something new to worry about.