DCIS

Options
Helen_1991
Helen_1991 Member Posts: 4

Dear forum members,

Previously in the "just diagnosed" topic, I acknowledged that I had atypical ductal hyperplasia and received a good number of feedback from some of y'all. I recently had an excisional biopsy and the pathologist's report stated that I have DCIS. The thing here is that the size of my DCIS is very small (2 mm, intraductal, grade II, architect: cribriform and pagetoid spread on duct). In addition, my breast surgeon stated that I have clear margins around the DCIS area within the parameters of my tissue sample, so that's good. However, I received a call from the office staff to see my doctor in a few weeks to discuss about radiation treatment - which does not make sense to me. To reiterate my situation, the mammogram of my left breast in late January shows that I have only one slightly discernible micro calcification cluster; a core needle biopsy in March show that I have intraductal ADH; further tissue sampling via open biopsy this past May show that I have very small DCIS. A marble size removal of that one area containing the Atypia/ DCIS show clear margins. If my doctor and the pathologist says that everything is fine in that area, so why do I need to consider radiation?  

Do y'all think I should do radiation? I would like to know the side effects as well as when it is necessary to do a partial or full radiation. 

I know that there are many paths to treat DCIS; for those who have been diagnosed with DCIS, how did y'all decide with your situation? Wait? Tamoxifen?etc...

Thank you again,

Helen

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2014

    Helen, 

    No one here can tell you whether you should do rads or not. 

    Some women with your type of diagnosis have chosen to pass on rads, some have gone ahead with rads, some have even opted for a bilateral mastectomy.  Similarly, some have chosen to take Tamoxifen and others have decided not to.  The point is that everyone views their diagnosis through their own unique perspective based on their health history, their family health history, fears they may have (of cancer or of a particular treatments), how they view and deal with risk in their lives, etc., etc..

    So only you can decide what the right decision is for you.  Here are some discussion threads on the question of Rads and DCIS that you might find helpful:

    Topic: DCIS lumpectomy without radiation?

    Topic: radiation therapy - yes or no

    Topic: Lumpectomy only

    And here is a more general post about DCIS that might also be helpful as you make your decision: 

    A layperson's guide to DCIS

  • april485
    april485 Member Posts: 3,257
    edited June 2014

    Hi Helen,

    I agree with Beesie. I had a very small DCIS as well (5mm) with very wide margins after a re-excision due to a close margin, and chose to have rads and I am also taking an AI due to >95%ER+ status. I could have opted out of either one of these and possibly been fine, but the standard of care for DCIS is to have radiation. So, since there is very little proof that not following the standard of care works out really well, I went with having rads despite the fact that my lesion was so tiny. Anything I can do to lessen chance of recurrence is what works for me personally. I know that once you use rads, can't use them again but I am willing to do that cause I know if I recur, I will absolutely have a mastectomy so that is why I decided to use the one shot deal too. Best to you whatever you decide as it is a very personal decision!

  • ej01
    ej01 Member Posts: 155
    edited June 2014

    I had small grade 3 DCIS and I really struggled with the decision for Rads.   I decided that I was not going to do both rads and tamoxofin...   I was leaning toward doing neither when I met with the radiology oncologist.   In my case it was feasible to do partial breast radiation  (thus reducing the side effects and treatment time) and still effectively treating the area that is at highest risk.   It was the right decision for me.    I think that if you are younger (less than 45) the partial breast radiation may not be an option.

    I recommend speaking with a radiation oncologist prior to making your decision.

  • Helen_1991
    Helen_1991 Member Posts: 4
    edited June 2014

    Thank you Beesie, april485, and ej01 ~

    @ ej01, 

    Do you mind to describe the process that you had to go through for partial radiation and any side effects that you had experienced? 

    I did read the info provided on this site but I'm not clear about some things such as how long this treatment will be needed to be performed (a one time thing, or how many times a week/months, etc.) as well as what forms of post check ups are recommended (mammo, MRI, etc.) 

    ~ Helen

  • ej01
    ej01 Member Posts: 155
    edited June 2014

    Helen,  There are different types of partial breast radiation...I believe most of them are 2x per day for 5 days.  that's what mine was. My RO initially recommended mammosite (which requires a device to be temporarily implanted to delivery the radiation during treatments).  But because of the location, I was not a candidate for that.   I had external beam partial breast radiation.  Before my first treatment they mapped me out with markers on my breast, and  Cat scan machine (at least I think that's what it was).   I did not need permanant tatoos.  When I would go in for my treatments I would lay flat under the radiation machine.  I had about 5 or 6 different angles.  They would give me a zap (did not feel it) for about 10-30 seconds...don't remember exactly how long...then the radiation tech would come in between each zap and turn the table and change the angle of the machine.    I was in an out of the RADs room in less than 10 minutes.  I had no side effects...maybe a little tired toward the end, but its hard to tell if that was from radiation or just have a tired day.   Post radiation checkups were every 6 months for a year and a half by the RO, and 5 years by the BS.   I have mamos every 6 months, and will start MRI every 2 years because of dense breasts.   Please let me know if you have additional questions. 

  • ej01
    ej01 Member Posts: 155
    edited June 2014

    Helen, one more thing to be aware of.   The studies to date indicate that the effectiveness of partial breast radiation is similar to that of full breast radiation.  However, these techniques are relatively new and studies are still being conducted so there is no definitive data about long term effectiveness vs. whole breast rads.  I think that's why they generally will not do it on women under 45 and why the whole breast radiation is still considered that 'standard of care'.    So you are taking a little risk....but they way I figure it, its certainly better at reducing BC risk than no radiation...which was the only other option I was considering. (I had ruled on whole breast radiation)

  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2014

    Go to the top of the page, and click on breastcancer.org.  There is a lot of info on this issue, MammoSite radiation therapy.

    HomeTreatment & Side EffectsRadiation TherapyTypes of Radiation → Internal Radiation

  • april485
    april485 Member Posts: 3,257
    edited June 2014

    I also had the partial breast rads with external beam. 2x a day for 5 days. I had a CT scan each day to make sure they were getting just the spot and were as accurate as possible. It was a clinical trial at Yale and you had to be over 50 with larger margins (over 3mm each) and no other issues. I am seen for 5 years by the RO and it is once a year now but I did have a 3 month, 6 and 9 month appointment the first year. I was very tired after it was over, but burning was almost non-existent (a little red toward the last day) and it was nice to be done so quickly.

  • Alpineartist
    Alpineartist Member Posts: 53
    edited June 2014

    Helen, so sorry that you find yourself here. But glad at the same time, because there is support and help for you here. My surgery was one year ago this Thursday. I had similar results to yours. Thus far, I have not done radiation or hormone therapy and my team and I are very comfortable with this decision. Here are a few more resources for you. DCIS Redefined is an excellent resource, created by two patients who were influential in my ultimate decision.  My own story can be found here. In each of these resources you will find mention of the second opinion services of Dr Michael Lagios, St Mary's San Francisco, an internationally recognized expert in decisions exactly like yours. His second opinion was that with no necrosis, I was not grade 1 and 2 as the first opinion stated, but only 1. The same may be true for you. He rated my risk too low to benefit much from further therapy. I also used the Oncotype DX DCIS assay, which confirmed this. I hope that these resources will help you, and I wish you all the best. Feel free to message me.

    Kay

Categories