Its a eatting chocolate second guessing self sort of day. . .
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So I thought I was done with the decision making and the angst over making the right choices. I interviewed what seemed like a zillion people, learned more about breast reconstruction than I ever wanted to know, went through lumpectomy1, was joyful to learn about mostly good margins, went to lumpectomy2, resigned myself to radiation, recovered [mostly] from lumpectomy 2, and thought I was done.
And yet.
Today I am having one of those self-doubt sort of days which all boils down to:
Did I make the right decision?
The surgeon says that she and the pathologist determined that the little bits of calcification found in my breast tissue from Lump1 were not DCIS but were some other type of benign polyp. And all we discussed from Lump2 was the DCIS and my uncoming trip to the radiation oncologist.
But how do I really know its benign? How do I really know that its not, for lack of a better term, preDCIS? If it is preDCIS, I suppose the radiation will take care of it but what if it doesn't? I wasn't too perturbed about a reoccurance of DCIS but I am freaked out about the rise of an invasive cancer. I foolishly went off to read results of DCIS studies on the cancer.gov website and now I feel like they are contradicting what I understood the radiation oncologist to say about reoccurance rates, let alone occurance of invasive cancer, if I had radiation versus if I didn't have radiation. It doesn't seem that the rates for having occurance of invasive cancer are that high. Have I made the right decision in deciding to have radiation? I'm still being told I may have to do a special breathing thing to avoid risk of heart damage because of where the rads are likely to need to be directed. Should I see another radiologist? Should I have just gone with a mastectomy so I could have skipped radiation?
Is this state of perma self doubt EVER going away? Or should I start loading up on chocolate futures?
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Wait.................stop and breathe. Ok, now, that's better. Chocolate is a wonderful tool when we are in crisis, especially if it is DARK chocolate! (However, I cheat and eat every kind of chocolate there is...don't tell, ok?) First thing is you have to learn to trust your doctors, and STOP (please hear me on this one) going to Dr. Google and looking up information. You can scare yourself half to death! Most of the time the information is old, outdated, or just plain WRONG. This board a good place to get good information, and, if you're interested, you can pm me, and I'll give you the name of another.
I thought that even with dcis and lumpectomies, the standard treatment is radiation following. If that's the case, then yes, you've done the right thing. Try not to second guess what you've done. You'll go bonkers if you do that too. This disease is a mind game. I think in time, you will find peace in what you've done. .
Come here often, post your fears, ask your questions, and someone will find you and help you as you move on through this. All I know about dcis is that no one really knows if it is going to stay in the duct, or if it's going to become invasive, or when it will do this IF it does.
Someone with more to offer will be along shortly. Until then, try and relax.
Jennifer -
As I understood it from my BS, as long as you had unifocal DCIS, a lumpectomy and rads are just fine. That's where I would have been after my 2nd surgery - however, my margins were still not clear, and my DCIS fell into the 30% that is multi-focal. So the lumpectomy and rads no longer were an option for me. The mastectomy was my only choice.
How I wish my DCIS had been unifocal.....I wish I could have been able to stay with the lumpectomy and rads. (although I'm sure I would have always been worrying and wondering..)
blessings...robin
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Never look back; each of us makes the best decisions we can with the information available at the time. No matter what you do, at some point somebody or some study is going to say that you should have done something different (and then the next one will say you did exactly the right thing). Just know that you did the best you could, put in aside, go forward, enjoy life, and eat chocolates either way!!!! Ruth
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the special breathing thing!! I don't want to go back and read all of the studies from the NIH symposium on DCIS, http://consensus.nih.gov/2009/dcis.htm but I think that is where I read about it. It makes so much sense - the radiation equipment is so carefully calibrated - yet we breath in and out while we are getting zapped. I was radiated on the left side and it would have been so easy to hold my breath - I should have thought of it myself -duh!!. It is great that you are being advised about that - further minimizing your chance of heart damage.
Good luck and you still might be able to find some Valentine's Day chocolate marked down!!
Julie E
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Chocolate futures.
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You could also come spend some time with me in the lovely land of Denial....that's where I am today. If you bring good chocolate I will let you in (but no kids)!
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