Medical Records

annielynn:  they are just CYA'ing - it doesn't make it right but it is really very common... I'm sorry you were pulled into this!  Have you already made your choice?  Because if you haven't it's OK you have time - with DCIS we have time to make decisions!

I was in an unusual situation (my dad died from bc) so the doc's didn't really know what to do with me and were really very "pushy" about my having a bi-lateral mast.  I had gone in quite positive and since I was BRCA- I felt I could have the lession removed and proceed on with 'watchful waiting" which is a valid choice.  They kept calling and calling, first my primary care, then the breast surgeon and even the ps's jumped in and said "if it were my wife I would want her to have a bi-lateral".. after a few weeks of this I was scared to death and made the decision to have a bi-lateral with immediate reconstruction (nothing immediate about it - it took 6+ months!)..  After all is said and done I wish I had listened more to my inner voice and went with the "watchful waiting".  The loss of my breast was much larger than I ever expected... I am not someone who ever gave my breasts a second thought so I thought having the bi-lateral would be easy - Hell I was told by the doc's it would be easy.  It wasn't easy at all and I have only recently started to recover from the depression that came hand in hand with the bi-lateral mast. (and I am not an individual who is prone to depression - at least I hadn't been until this experience)

The surgery itself isn't really bad (the reconstruction was worse for me) but the emotional loss of the breast was shocking and it took me all of 3 years to start coming out of the depression that went along with the bi-lateral..

If you can find a different bs, one who is not with your normal group or connected in anyway to your original bs I would suggest that you get a second opinion.  If you can save your breasts I say go for it.. If you do choose a bi-lateral mast. try to get hold of a doc who does "nipple sparing" so that your mind has less to adjust to..  Some women can go through the loss of their breasts without any depression but from the women I have spoken to, though out the past 3 years, most experience depression after the surgery - some have less depression than other..  But if you have not done anything but the biopsy yet you can do things now that will help you make the best decision for you!  I don't know why this isn't an automatic thing but I would add a therapist to your list of "specialists" so that you have a better chance of hearing your own wants and needs.  So many people in your life will have advice (many with a great deal of love behind their advice) for you that it will become difficult for you to hear your own voice.   Just some thoughts,  but there is no research that I am aware of that insists that you are not a good candidate for lumpectomy because your DCIS was not found by mammos or breast MRI...  Good luck and I hope you now have a chance to take a good look at all of your options and which ever one you pick for yourself I wish you all the best - Deirdre!

Interesting, the bs at Loyola said the same thing to me and my husband "if it were my wife, she'd have this surgery." My husband wanted to discuss certain studies and percentages with him. Wanted more information about outcomes and why my DCIS lay dormant for so long (17 years). Very little info on this. I am frightened of radiation too. I almost feel like I'm not getting anymore mammograms or MRI's or anything. My mother lived her whole life (90 this April) without a single mammogram. I am very sympathetic to those who have had invasive cancer. Depression can be extremely devastating as well.

Mom3band13:  I'm so sorry to hear you went through anything similiar to my own experience but I'm afraid it's a bit more common than we are led to believe.  I hope you can soon see some light at the end of the tunnel...  And for every voice you hear on this site (and any other's) by a women who has had a reasonable experience with their bilateral there are probably at least 2 other's who have experienced something similiar to your's and my own experience!  Someone who is depressed often doesn't speak out and they are also vunerable enough that they may even think that there must be something wrong with them since their experience wasn't anything like what they are hearing... No I'm afraid you and I have had similiar experience because there are so many similiar experience out there unfortunately!

Rianne2580:  The reason I put the quotes around the "if it was my wife.." is because I have heard it repeated so many time from other women.  I am beginning to think that the doc's had some sort of seminar to help them lead women to their own selection of treatment by making it personal (my mother, wife, sister)..  I would hope though that you continue to at least get the breast MRI's as I believe they are the mammo's of the future.  I know about all the "false positives" people immediately subscribe to them, but if we all looked up the history of mammograms we would find the same trail of "false positives" and "false negatives" I'm afraid!  I heard a brief health commentary on a new test (won't be available to the public for 5 - 10 years) where a simple blood test is used to find any floating cancer cells.  The idea is of course that we will have a chance at catching cancer (in this case bc) even earlier than DCIS - but my immediate reaction to that was the medical establishment really doesn't know what to do with Stage 0 - that is so localized.. what might they try to remove from our bodies if they found 1 cell <smile>..  It takes years for a test to become a helpful standard and I believe we are seeing that happen with MRI's... I know your concern, what if they do find something on the MRI then there will certainly be a biopsy recommended and then what?  I'm very glad your mom has lived as long as she has without medical intervention (at least mammograms)... My own mom recently had a small skin cancer found and her immediate response was "I wish they had never found it - then I wouldn't have to go through anything more" you know there is some logic to that.. she is 81 years old perhaps, if that lesion was left alone, and since cancer grows much slower as we age - perhaps she would have been better off not to ever known it was there..  

So we do the best we can with the information we can get and we make sure our own voice (our true voice - the one that is not drowned out by doctor's and loved one's and sometimes just plane busy-bodies - and we make our decisions with an advocate at our side and the best information for the time.  And with cancer we should also make our decision knowing that although they lump us into Stage 0 - Stage IV, as if once identified into these catagories that there is a definative treatment of choice, that we are all individuals and every single cancer is unique in some way and so every treatment will have some slight variance (some not so slight)!!

Good luck - I'll keep you all in my thoughts and prayers!!!  Best, Deirdre