Trying to Decide on which Treatment

Hi Sbaker776:  I'm really sorry you have to be here at all considering this means you have bc (at it's most basic, non-invasive form but still bc)!  But I totally understand your question because I've been exactly where you are... And here is my BEST advice... get a second opinion on the tissue samples to be sure you are dealing with DCIS grade 1 AND  please add a therapist to you list of specialists... here's why... so many people have so many suggestions and even the closest people in your life, who are making suggestions because they love you, and this might feel overwhelming BECAUSE you need to hear your own voice right now... get as much information as you can and then search to the bottom of your soul --  then and only then make a decision... A therapist's job is to help you hear your own voice and honestly I don't know why, when all of the specialists are suggested (bs, ps, oncologist, genetisist etc ect) a therapist is not the primary on that list..  You have time with this dx and please take the time to get to your best solution - the best solution for YOU..

I guess I can add, without mudding the waters, that I didn't do what I have recommended to you above, and I tried to sift through all the specialists recommendations and I listened to everyone's suggestions... I heard a lot of "if you were my wife" from the doctor's who are suppose to be impartial...  And finally out of sheer desperation and fear I choose to have a bilateral mastectomy... i've regretted it since and truly feel that I have over treated.. My first response was to do a "watch and wait" which would mean an MRI every 6 months to a year .. This is of course my own experience an many women here will tell you that same decision was the best for her.. That's the trick - each cancer stage and grade is different and each individual is a unique persons with their own fears, hopes, dreams and so it requires an excellent review of your own soul to truly understand how to proceed...  Take good care! Best, Deirdre

Thanks Mom3... We do have to deal with the outcome and when we think our experience was shaped by someone other than ourselves (and we don't always recognize that until after the fact) it really takes a great deal to get out from under the MASSIVE decision that we feel we are, in many cases, forced to make!!!  I would just add to you Mom3 that you can STILL go to therapy now and although it certainly won't help get back your breasts it may help you adjust to that incredible loss...  Best, Deirdre

sbaker, you don't give your age, which makes a difference. If you're under 35, it could be a good idea to have a BMX because BC at a young age is significant. But if you're over 50 it's a different deal. 

My diagnosis, at age 58, was similar to yours. I never considered an MX or BMX, but after my lumpectomy I found out that one never really gets feeling back in the skin of the chest after MX. If I'd been considering MX, that would have made me decide against it.

With my lumpectomy I lost no feeling at all. The only difference pre- and post-lumpectomy is that I have a pink parenthesis-shaped scar on one breast that I assume will eventually fade to near invisibility.  

Cycle-Path,

 I don't want to misinterpret your statement...can you explain what you mean by a diagnosis of BC under 35 is significant?  Thanks! 

I was diagnosed with DCIS Stage O in December 2009.  I had a double nipple/skin sparing mastectomy.  I was not given an option to have a lumpectomy because my original breasts were so small (Size A+ on a good day) AND the doctors were not sure in how many places the DCIS was going to be found.  That being said - I am soooooo glad I had a double mastectomy.  I did not have to have any radiation or take any cancer drugs BECAUSE I had chosen to have both breasts removed.  YES, ABSOLUTELY, it was a truly horrific process while I was going through it but now that I am one and half years post surgery, I am absolutely thrilled to NEVER, NEVER, NEVER have to deal with a Breast Cancer diagnosis again.  My breasts look great because I was able to save my skin and nipples.  You can't even tell that I had the surgery.  They just look like great, fake boobs.  As an extra note, my plastic surgeon recommended liposuction also to add fat to my breast skin.  That added something extra so that you can't tell I have had the surgery.  I know it is hard to choose, but know there are many of us out there that are thrilled that we got it over with once and for ALL!

No to be a downer but even with a mast there is a small chance for recurrence. Nothing is 100%.  You could still need rads.  Things happen. 

The ladies who were able to have the nipple sparing look amazing!  If I could have done that route I would have.  Not an option for me though.  My DCIS literally went nipple to chest wall.  I had small breasts to begin with, not even an A, and a lumpectomy WAS an option when we thought it was just a 1cm palpable lump.  SMall breast size does not rule out a lumpectomy.

 I went back and forth a lot on my decision. My immediate, gut-reaction was 'get 'em off me!" but I made myself sit, think, research, journal, make pro and con lists and I saw a medical oncologist, a radiation oncologist, my breast surgeon, and a plastic surgeon. I talked to other people with similar diagnosis and medical professionals that are not even in oncology. I listened to everything each specialty had to say, took notes and really took time to look deep into my own mind.

Every single doctor told me that whatever decision I make, it will ultimately be the right one for me. No one pressured me to choose their solution over another, although it was hinted by the medical team that a bmx for something the size of a sesame seed might be a little overkill. 

I prefer overkill. Being that I am 'only' 42...to me, that is too long a time to give the cancer a chance to return.I don't do well with the watch and wait...if I'd gone with rads and tamox and close followup I know I would be a basket case. My husband has been living with leukemia for ten years and I honestly don't know how he stands it; just waiting and getting tested now and then with the knowledge that someday it's going to rear its ugly head. I can't do that personally.

I had my surgery 8 days ago and yes, it was hard to do physically but emotionally and mentally once they were gone I feel I can finally relax. My patho report after the mastectomy showed 'florid hyperplasia' which in and of itself just means cells that are changing and not cancer but my surgeon said we absolutely did the right thing, as it was likely not a chance of 'if' it would come back, but 'when'.

A couple days before my surgery, a family member suggested to me that I get therapy to 'figure out why' I seem so 'anxious' to remove my breasts. When I told him it was because I had CANCER he said that my resistance to therapy shows that I am not doing this for the right reasons. I told him see ya on the other side and chose to keep him out of further discussions. I have no arguement with therapy at all, I've had it several times over the years for various reasons, but I use this to illustrate my point that we all have to come to decisions our own way, on our own terms. Definitely talk to someone if you need to; it just wasn't somethign I personally needed to do.

People kept telling me that I would know when the decision was made, that I would feel it somehow emotionally. I didn't beleive them. I would change my mind hour to hour sometimes and it was always something I was debating with myself no matter if I was at work, home, or whereever. But one day it really did happen...one morning getting ready for work, I realized I was singing along with the radio which is something I hadn't done since I got my diagnosis. I got to work and a couple coworkers told me I looked different, better somehow. It was then I realized that the decision had settled and that I knew I was on the right path. Sounds all new-agey and whatnot but it really happened (and I'm pretty new-agey anyway lol)

 I had to give up sensation, nipples, and body parts that nourished my children. But honestly, for ME, it was exactly the right thing to do.I think it was harder for my husband to accept my decision that it was for me to do it, but ultimately, he is 100% on board with me.

Give yourself time to think, meditate, journal..whatever it takes to get in contact with the authentic YOU because well meaning friends and relatives--and even us on this board!--can only give you our experiences and thoughts through our own eyes..you need to filter through your own worldview and come to terms with what will be the best thing for you. I know you will get there.

The decision-making part of this journey is among the hardest things, and the only right decision is what you know in your heart is the right one for you based on the information available. I had a lumpectomy and rads and turned down tamoxifen. I'm in my 40s and knew I wanted to keep the breast.

Reaching a state of inner peace is so important, and I am happy that there has not been a single day that I've regretted the decisions I've made (although every day I do think about bc every day). 

3monstmama, you nailed it.  "when you met breast surgeon #2, I felt completely comfortable and able to make the decision."  We are trusting these doctors with OUR lives!!  My breast surgeon told me "this is a sacred journey." She gets it!  I had my NSBM on June 27 and we have not felt good about the ps in our post operative visits.  I didn't follow my own advice Always trust what your heart knows. I went along with this ps becuase he had been recommed to me, but never felt a deep connection or trust. 

Today we consulted with a new ps and he said to me "it is my job to worry, not yours."  He is detail oriented, a perfectionist, and has pride in a job well done.  He is purposing to switch out the expanders because the ones my ps used are the wrong size and shape.  As much as I don't want another surgery, I heard between the lines that he believes this is a sacred journey too.  I know he will accomplish what he's told me he can do.My decision is made.  Ahhhhhhh.......