DCIS Newbie

Any diagnosis, cancer or otherwise, is a bit overwhelming at first.  Today we all turn to the internet for answers, and in my experience(IDC) I found in the end I had more questions than answers.

You certainly have come to a well informed/experienced site.

There is no guarantee that your tumor will or will not become invasive.  Without a pathology report there is no way to know how your tumor is growing.  Having the opportunity to treat it while in an early stage is a blessing.  Whatever you decide, just go into it well informed.  Ask questions - you may not always get an answer that you expect, but be open to what the professionals feel is best for you.  Each case is different, and there are many factors (age, health, family history, etc.) that affect the recommended treatment.

Best wishes!

Kathy

I had DCIS and you are in the right place. There is an another excellent website called breastcancer.org. It has a forum devoted to only DCIS there. It has a wonderful description of information about DCIS and treatments etc. I think it would be a good place for you to post questions and concerns, as well as read the very top posts with good information pinned to the top of the forum. ( https://community.breastcancer.org/forum/68).

Some people choose to do nothing for DCIS. But in just my opinion, that's like having a cancerous ticking time bomb. You don't know if or when the cancer would break through the milk ducts and invade other breast tissues. Catching the DCIS early is a good thing.

Talk to your  medical team. A lumpectomy plus radiation is standard treatment for DCIS.

Let us know how things are going. You certainly belong here.

Beach babe..teh only reason I joined/ foudn this group is I used to tell eveyone "I HAD cancer" never thought of myself as a survior. I had DCIS-so I felt mine was much less "cancer" then other types. I had ONLY radiation- so i also felt like NOT like chemo patients...but I fit in here and welcomed> I didn'dt fin this site until long after my BC...but I am glad I did-better late then never.

Denise

Hi Beachbabe.  I had dx 2009 of DCIS.  A friend with it also decided to do "watchful waiting". She is still cancer free.  I decided to have lumpectomy and radiation (multicatheter brachytherapy) because mine was "high grade" which means kind of aggressive and more likely to become invasive.  The surgeon got clear margins but there was some speck of DCIS near (within 1mm) the margin.  I took Tamoxifen as long as I could (1.5 years).  I was having mammograms of the affected breast every 6 months and last spring, 6 years after the first diagnosis, I was found once again to have DCIS.  It was in the area closest to where the speck was near the margin.  So I guess some survived the radiation.  This time the "grade" was intermediate, not high grade.  Anyway, I've had my second lumpectomy (although M D Anderson only offered me a mastectomy) at Cancer Ttreatment Centers of America. In fact, 3 months after that biopsy, they could not find the DCIS lesion in the pre-op mammogram, nor in the pathology done on the excised tissue!  Maybe my immune system took care of it.  That is a question I will address with my oncologist in April at my 9 month post surgery appointment. I asked for and received the Oncotype DX test for DCIS and it showed that radiation would not have been of benefit so I did not under go that this time.  I am now taking anastrozole, an aromatase inhibitor, with only one side effect... for the next 5 years to reduce the chance of another recurrence.

What I have learned from all this is that, if DCIS was found yet again, I would have a biopsy done, have it tested, study the pathology, and if it was not aggressive I would take a watch and see approach.  There are no good studies yet on which kinds of DCIS become invasive and which lay indolent for the rest of a woman's life (yes, that happens), so the doctors like to do at least surgery and radiation.  But let me tell you, those treatments are not without lifelong effects.  What if you never needed either treatment?  We think about the what if's in the worst scenarios; can you think about the what if in a good scenario?  So far, I'm a living example of undergoing 2 surgeries last year that I probably didn't need.  There may be more in my future just for the sake of balancing my two different sized breasts as a result of 2 surgeries on one.  I have a broken rib from the weakening effects of radiation.  And I have paid thousands and thousands of dollars for treatments I may not have needed.

~~Connie~~

BeachBabe said:

I was thinking about what I

I was thinking about what I posted. Please don't think I am looking for sympathy, because that is the furthest thing from my mind. I just feel like I am in limbo I guess. My thoughts are all over the chart. Forgive me

I, too, have DCIS and find, for me, it isn't so bad. They found it early, three mamos, a biopsy, and a lumpectomy. They got all but a few spots a millimeter in diameter each. They are treating me with radiation now. The treatments aren't bad. You lie on a table with your shirt off and arms above the head. Then they shoot you with an invisible beam for 2-3 seconds per spot and then your done. I see the doctor once a week and get x-rays once a week. The only side effects are sore breasts and cracked skin from the beams. The beams are burning your skin. I usually feel these effects after the treatment. This best treatment, I found, is aloe vera for the mild areas and aquaphor for the more painful areas. But you should consult your doctor before using any kind of cream. My doctor also suggested asprin or Tylenol for the pain but that doesn't seem to help. But remember everybody is different so just because it doesn't work for me doesn't mean it won't work for you. Again ask your doctor about this before taking any pills. Another thing that helps is putting a rolled up cotton shirt under my breast and not wearing a bra. I hope you find all this helpful.