More information, more decisions

Lmdi-

   I can relate to your confusion. I also was diagnosed w DCIS nearly two months ago and still not sure what my ultimate treatment will be. I was leaning towards a bilateral mastectomy for several reasons. I also have strong family history-two sisters with invasive ductal carcinoma, one w/ Stage 1 at 45 and another w/ Stage 2 at 44. I was 43 when diagnosed. We are all BRCA negative so must be some other gene but makes it difficult to assess risks. The fact that I have a three year old and 21 year old daughter who will make me a grandmother to another little girl in May weighed heavily on me. I also had slow recovery from peripartum cardiomyopathy three years ago so left sided DCIS scares me a bit more. My husband also lost his mother to breast cancer at 43. The bottom line is I met with a surgeon, medical oncologist, and radiation oncologist and based on labs and pathology, the initial recommendation was I would be a good candidate for lumpectomy, radiation, and Tamoxifen (the last of which I am not thrilled about but will try). 

I also considered whether bilateral mastectomy over treating after meeting with cancer group and honestly was a little afraid of longer surgery/ time off work. I am an RN though this is not my area of expertise so sometimes little knowledge can be more dangerous. With the support of my husband I made the decision to go ahead and try the lumpectomy. At preop visit discovered 'something" possibly in other breast and another MRI biopsy should be done before pursue breast conserving surgery. Quickly arranged biopsy-spent almost 2 hours but ultimately radiologist deferred the biopsy as not enhancing at that time. Quickly rearranged surgery for next day as sisters flew in to help with my little one. I had surgery on my birthday 3/5. Unfortunately, my surgeon was surprised with the result, 4 of 6 positive margins despite taking wider margins based on family history. DCIS now appears multifocal and more involved than MRI suggested. I opted for quadrantectomy 3/12 and expect to get pathology today or tomorrow.

Bottom line- I have come full circle and realize the recommendation now is leaning more towards mastectomy. My first thought may have been right but it is, what it is. I still feel fortunate, all non-invasive so far. Some things are out of our control and you just have to make the best choice for you at that time. Lots of questions and the answers can change so try to be flexible.Will keep you in my thoughts.

As stated by others, you ultimately have to make your decision based on what is best for you. You are not defined by a statistic, procedure, or diagnosis so it is a very personal decision. Protocols and recommendations can change. That does not necessarily take into consideration the worry, expense, time, impact on your life/family, and let's face it discomfort ( not sure about you but the breast MRI Core biopsy is not exactly a walk in the park!) involved in monitoring, diagnosing, and treating this condition. For some the impact of all of this may be more overwhelming than any surgery. I do not regret my decision to try breast conservation. I am sure others don't regret their choice to be more aggressive surgically for their own reasons. I hope you have a good support system that respects your decision either way. You have to walk in your own shoes. It sounds as though you have had many tests over a considerable number of years. That must really wear on you, of course you would be frustrated. I look at it this way, all of your doctors look at your info and results each step of the way. They take everything into account, including changes, and make a recommendation. That recommendation can also change. Give yourself the same opportunity (slack). You may change your mind one way or another. And that's ok. It is a lot to think about and you can take the time to weigh your options.  For me the time is a blessing and a curse. Can feel a little dragged out and allow one to vacillate. Not sure any of this helps but yes I do get it! Good luck and I will continue to think of you.