"And the winner is.."(or choices i made at REX)

allvirgo71

I went back to the REX Cancer Center in Raleigh last Friday-theyd requested my path slides, had me do an MRI for both breasts (DCIS in the left originally) Everything came back good-they agree with original pathology report, no further cancer in the left and nothing in the right breast. Due to margins being dirty, they recommend re-excision, tamoxifen and 7 weeks of radiation.

I spoke to the radiation oncologist, and since Im so "young" (im 38) they dont recommend the accelerated types of radiation such as the mammosite, etc.

My huz and I have talked about our options a lot while waiting for all these things to progress to a point where we could actually make a decision. Given my age, the lifetime chance of a more aggressive reoccurence and my total unwillingness to take tamoxifen, I have chosent to do a mastectomy. My onocologist made a tactful comment that given the original surgeons excision, I would probably want reconstruction done-not even considering what a reexcision would leave behind. To be completely logical, although I know a bilateral mastectomy is much more intense than re-exicision and reconstruction- I feel that overall, its the best choice for me personally.  

I guess I thought that finally being able to make a definitive decision would make me  feel 'alright'. I agonized over why I wanted to choose what some would say is the more 'radical' of the choices. My insurance covers surgery and reconstruction and Im lucky not to have to argue with them over this. I commented to my huz on the way home from REX, "i thought id feel better once I could make an actual decision. I dont regret the choice I made, but it doesnt make what I did choose easier to swallow-its just less difficult to swallow than it could be"

I know. I know. Im lucky. Its only DCIS. 

I guess Im kinda angsty lol What about ya'll? Any mastectomies for DCIS out there? What type of reconstruction did you choose? After effects? Your personal feelings about the end results? Words of wisdom? 

JAT

I don't know if I can offer any words of wisdom, but I'll share my experience.  I had the same diagnosis as you last year, at age 43 (still young in my book, and with no family history or gene mutation). I have a toddler, so I wanted to be aggressive and chose a bilateral with reconstruction over a unilateral with 5 years of tamoxifen.  The plastic surgeon did a nipple sparing mastectomy on the healthy breast and grafted a new nipple from that one onto my other breast  at the time of my implant xchange (the tattoo for the areola was the last part-- an in-office procedure).  The most painful part of the reconstruction was the tissue expanders that are put in at the time of the mastectomy (you have to wait about 4 months from the first surgery for the implant exchange). The expanders sometimes felt like torture devises, but other women experience very little discomfort-- it varies. Physical therapy after the surgery was a lifesaver for me-- if you get a SNB, you will need to regain the use of your arm, for lifting and stretching, and a trained therapist massages the area as well-- it makes a huge difference.  Not everyone chooses immediate reconstruction, but for me it was emotionally important to wake up with "something there"-- mounds in place of my old breasts.  Make sure you have a plastic surgeon who is experienced and you see pictures of his work on breast cancer patients. My surgeon had patients who were available to talk  over the phone about their reconstruction and that helped me too. One of my regrets is that I went too big-- I was very small breasted and went from an A to almost a C cup, and now I have some lower back pain because I can't get used to walking around with my new boobs! I also chose saline over silicone, so they don't feel as "natural"-- most women choose silicone.  Fully clothed no one would ever know, but undressed in private I still get upset looking at the scars-- but after 1 1/2 years they are fading. 

I know what a difficult decision this is to make-- "it's only DCIS" is small comfort when it means multiple surgeries, recovery, a different body, and the anxiety which stays with us for years.  If you want to talk, feel free to PM me.-- Regards, Julie

musiclovermom

I chose a bilateral mastectomy with reconstruction after having a sterotactic biopsy, then an excision of a duct, then a lumpectomy, only to have the news that I had extensive amounts of pre cancer all through my right breast along with invasive cells.

October 15, 2009 I had my surgery and have tissue expanders in now. I have had 2 fills and found out that pathology found DCIS in the left breast.

I made the right choice for me - 3 women in my life have died from breast cancer and all three of them had only one breast removed. See a pattern there?

I kind of feel like I am cheating because I was so sure that the lumpectomy would be the end of it and I would have radiation and do tamoxifen for 5 years. But - since I made the decision to go with the mastectomies I have eliminated the radiation from my treatment plan.

I have been on tamoxifen for 3 weeks and have not noticed any side effects, but I take it at night before bed. I am still having my period or did last week.

I have not made all the decisions about implants and nipples but will when the time comes. I am focusing on size now. My plastic surgeon wants me to take time and try clothing on to see where I am comfortable.

I thought I would skip the nipples but now I am obsessed with them. Asheville Permanent Make Up has a great web page with before and after picts of their tattoos.

My plastic surgeon has a person in his practice who will do the tattooing but I am researching everything.

I hope this helps.

Kimberly

CAROLMARIE427

Jumping on the bandwagon here. Had unilateral mastectomy in Sept 2008 because saw my mom die from breast cancer 22 years ago. Although I was told a lumpectomy and radiation would do the job, I couldn't deal with any thought of careful monitoring for reoccurence. In July 2009, decided to have the other healthy breast removed because couldn't wrap my head around testing my breasts anymore. In my heart I know that I did everything possible to help eliminate my chance of reoccurence. It is a tough decison, but somehow once the choice is made it will start to sink in. Go with your gut instinct. You will know what is right for you. God bless...

Rhondakay

I am 47 years old and was dx 11/17/08 with dcis, grade 3 comedo w/necrosis in my right breast.  I chose bimx w/tissue expanders as my treatment option.  I went over all avenues carefully with my doc, who was extremely supportive and spoke with me extensively, her whole team did as a matter of fact.   I couldn't bear the thought of going through rads, and mammo's every six months with a lumpectomy.  I had to go with the treatment that would put me at the least risk of recurrence,  to preserve what little comfort  I had left.  I was all but incapacitated with fear.  Once I had made my decision, that fear did not leave me, I became so very angry as well.  I am not a thin person, solid is a good decription, and I was at a point in my life where I was very good with my physical self, sagging breasts,(that nourished both my babies 25 and 23 years ago) flabby belly(baby fat that I never lost! lol).  So I AM HAPPY with my decision for bilateral mx.  Although it was very hard getting used to how I look now, it is a continuing process that will take time, alot of it.  Some day I hope to like my body again, to not feel betrayed by it.  My reconstruction is complete now, and that has helped me turn the corner in coming to grips with who I am now. I liked who I used to be, and I miss her.

I read an article I found on the internet, by a doctor, I truly am sorry I cannot quote the source better than that, it was during a time when I was mentally and emotionally unstable right after my first surgery ("the big one on 12/23/08") It helped me a great deal, what I got from it was basically this, what some consider to be an aggressive course of treatment for dcis, is truly the most conservative treatment of all to preserve the whole. (mental, emotional, and physical well being of women facing bc). 

bilateral mastectomies preserved my life, reconstruction preserved my sanity.

I wish us all the best life has to offer in the months and years to come as we continue to love and educate ourselves.

allvirgo71

thanks rhondakay - "bilateral mastectomy preserved my life, reconstruction preserved my sanity" Ill keep that close to me.

to everyone else thanks for sharing your story- ive been kinda quiet on the boards lately- i work in retail and its the busiest season..and its kinda nice to not have time to think about the impending surgery. I have taken someones advice and started to road with Duke Chapel Hill, where it seems is indeed the only place to have immediate reconstruction done..

I decided to get my teeth taken care of so b4 the big surgery so TOMORROW is dentist big day one : 2 cavities filled, 2 extractions and a deep cleaning...everything thats on the left side of my mouth..I havent been kind to my mouth needless to say. and by this time tomorrow Ill be a drooling idiot LoL One more appointment to do the right side of my mouth and I should be good and gleaming by Mx time in mid January. 

Thanks again for sharing ladies!!