DCIS - What to do

Wow, what a lot to take in so quickly.  There are some nurses on this forum that certainly can help you better than me.  I'm 42, my tumor was so large I didn't have many options other than lumpectomy or mastectomy.  Just remember that although it's not new to your doctor it is new to you, and you have every right no matter what hospital to ask all the questions you can.  Write them down and go down the list. 

My doctor doesn't use PET scans much, but I did have an MRI so they could look at my lymph nodes.  Good luck, I'll post on other threads that you need help here.

I am not an expert but will tell you my experience. I was dx'd in early July with 4mm Grade 3 DCIS. I had a vacation planned for late August and my surgeon and gyne both felt it would not be a problem to wait until September to have the surgery. My MO seemed to put the emphasis on the comedo necrosis which was present in mine. Although Grade 3 is a more aggressive type, it's still generally not fast growing. My final bx did not contain any DCIS so it was all removed with the sterotactic biopsy. I was also told it was not necessary to remove any lymph nodes for testing. My surgeon felt that perhaps rads would not be necessary because of this but my MO strongly felt it would be necessary because of the comedo necrosis in the DCIS despite the small size. He also felt that my family hx and age were important factors. Because it also was ER+/PR+, Tamoxifen was also recommended. An MRI nor PET scan was ever recommended.  When you say "I don't know which surgery to have", I am assuming you mean lumpectomy vs masectomy. I personally would try to avoid masectomy at all costs for DCIS, that's why I'm being more agressive with my other tx alternatives. It depends on alot of factors. My sister had a BMX at 37yrs old for DCIS but her situation was different. She had multifocal DCIS and was very small breasted. You should gather as much information as possible for your particular situation and make an informed decision after consulting with your health care team.  I was on this site asking the same question as you and everyone assured me they also felt I had time and everyone was right. In my case, it did not change the outcome by waiting.

Take several deep breaths, and slow down.

Yes it's more aggressive, but it's not so aggressive that you need to rush into surgery without understanding what's going on, what your choices are and why, and making an informed choice.

First, get a second opinion.  I don't give a damn that your current Dr is at a good cancer hospital, they sound like a complete jerk.  I can't begin to understand how your surgeon could schedule OR time for you without even knowing what procedure they're going to do.

In my opinion you should also have an MRI before surgery, even if you need to change surgeons to do so.  You don't need a PET scan, it's not indicated for DCIS.

No, a biopsy can't tell for sure that it is confined the ducts and that there is no invasion.  Biopsy only samples a small bit of the area, it is a preliminary finding.  You won't have a final answer until the "definitive" surgery when they can look at all the tissue that's been removed, and get the "final" pathology report. 

Most likely your diagnosis won't change, but unfortunately there are an unlucky 10-15% of women who are originally diagnosed with DCIS on biopsy but who turn out to have some invasive cancer.

Tamoxifen prevents estrogen from binding with the receptors in breast tissue, it's only used with estrogen sensitive cancers as an attempt to cut off the cancer's food supply.  Your path report should mention if your DCIS is sensitive to estrogen and progesterone (ER / PR).  Was that tested?  If you're not estrogen sensitive, Tamoxifen wouldn't be recommended anyway. 

I was given a PET scan for DCIS AND my insurance paid for it... now I'm not suggesting we all run out and have one but it certainly felt a bit easier to make the decision with the knowledge that no other cancer was lurking - at least not one they could identify <grin>..  I had seen an out of town doc who wanted to make sure that since I did have a strong family history of other cancer's  there wasn't something more out there and so that would/could make my decision different.  It was negative..  Here's how I went about geting a PET scan... when my consult suggested that it would help me deside on my treatment I paid for it out of pocket and then had the insurance company review the paid bill after the fact.  I know I hear voices out there saying "we can't afford to do that" and I know in this economy that is difficult.  I said difficult because if you have purchased  extensive teeth work, a new or used car, a computer, a house etc. etc. well you have made that a priority... I think, sometimes, it can be a matter of priority.  Don't allow your insurance company to call the shots - that's not how it is suppose to be allow your doc's to make suggestions to you freely and you and he/she decide if that is right for you.  You are an important priority and your health care should be factored in accordingly.... That's my 2 cents.... Take care,  Deirdre 

I was also early 40s when diagnosed with dcis and mine was slightly more. Due to my age and dense breasts, as well as cautiousness of bs, I underwent an mri and genetic testing (BRCA) before he would suggest whether I should have a lumpectomy+rads or mastectomy. The MRI did result in a false positive -- something showed up in the other breast so I underwent a biopsy and thankfully it was nothing to worry about (happens a lot, but worth the peace of mind I think).

Please do not demand a PET scan (it's not the right one for your situation) but I would recommend the MRI.

You have time with dcis. My surgery was 2 months after diagnosis, because of waiting for test results and scheduling drs. The wait is mentally draining but it is important to get the information before jumping into surgery.

As others have said, only the final pathology report will allow you to know whether you had pure dcis. Most likely even if a trace of idc shows up (like mine), it won't change your treatment plan. I moved right on to rads and then chose to not take tamoxifen. Still happy with all of my decisions but they are specific for my statistics and risk aversion level. 

Idon'tKnow...: My opinion is that if you have a doc that wants to pursue a PET scan AND you are willing to fight the insurance company for payment (either way if I knew there was a test out there that could help me understand if I had other potential cancers at early stages - I would pay out of pocket) - it's a very good test for any cancers.. It's an expensive test and that is why it isn't recommended too often for this purpose but that doesn't make it the wrong test.. It's just not in the profile yet for early breast cancer.  Because it is challenged by insurance companies many doc's won't put it on the list.. but ask anyway and insist if it will give you comfort...  It's about making your health care a priority.. I paid for mine out of pocket and then challenged the insurance company to reimburse.. they did pay so what does that tell you?  It tells me that there wasn't a good reason to negate the expense.. Of course insurance companies don't want us asking for tests but if a doc even slightly suggests a PET scan - I'd say take that seriously!

The breast MRI does have false positives LIKE ALL OTHER TESTS.  I had years of mammos that were clean - and one done at exactly the same time as the breast MRI - it was negative.. So there are false negatives too and that's why we need to have our tests reviewed more than by one practioner IMO.   ONly a few years ago there were challenges to breast MRI's too... It's a matter of picking your battles IMO...  But then I would agree that a breast MRI is a good tool for finding early stage bc.. So if you don't have a choice (and many of us in this economy don't) at least push for the breast MRI.. Then for safety sake whether it comes back clean or with areas of concern have a second radiologist outside of the first group read it..  because when it comes down to it that a radiologist is interpretting the scan..

And on another note, we should all be having our biopsy tissue reviewed by a second set of eyes as well.  It's an easy process - just tell you doc that you want the tissue slides to be reviewed whatever group you feel is a good judge for DCIS, I picked Vanderbilt but there are many many other's to pick from...

Good Luck and please let us know how things go!!!

Hang in there and keep pushing their limits.. you want to make any decision with as much personal power and knowledge as you can - so that you are better equipped to handle whatever treatment path you choose!!  Good luck and keep us in the loop!!   Take good care!  Deirdre

First I'm sorry.  You are dealing with an awful lot.

Second, if its DCIS, yes you can wait and take time to make decisions.  I was initially diagnoised in November and didn't have surgery until February.  I'm still here and I did not risk my life in waiting.   Second options are the very best thing to get---they help you to understand and figure out what to do.  That said, I respectfully disagree with cycle-path---you really don't want just "any reasonably competent breast surgeon, etc"--this is your life, you wan the best and you deserve it. Not to scare you but most regretably more than one woman with "garden-variety BC" has had the pathology post-surgery reveal something different.

Third, IMHO it is incrediably important that you have confidence in your team.  If the surgeon isn't a good fit, DITCH HIM!!!!  You don't need a reason.  I switched within my surgeon's practice because when I spoke to her I felt confident and comfortable and like everything would be okay.

Don't let yourself be pushed into surgery.  You don't want to wait years--for grade 3 DCIS my oncologist told me it was not a question of "if" it would become invasive but "when"--but the bright side of this is that you have discovered your BC early and can take time to sort things out.

good luck!