Feel alone. Anyone with mastectomy for DCIS?

I am 39 years old. I have three kids age 12, 10, and 7 . I have a dx of dcis about 14cm in left breast and 1 in right. tomorrow I will go for bilateral mastectomy. I am feeling scared and sad and hopeful at the same time and I cannot decide which to settle on..  I feel alone as I don't know anyone who has gone through this. I have lots of people praying and visiting and calling but still feel like loosing the "girls" is loosing a huge part of me.and that I am the only one who sees that side of things. Everyone says at least it will be gone and you can live a long happy life.. This I know is true. but the other truth is this is life changing!! I am having reconstruction but I still don't know how I am going to feel with these strange boobs in 6 months? I appreciate the information and the sharing that I have read on this site. God bless all of you who have already made it to the other side of healthy!! I can't wait to be there..

darmj - I am 2 weeks out of my bilateral mastectomy (no reconstruction)....I, too, had DCIS, and I also have three kids, although mine are 18, 17, and 12. 

I struggled with the "new body" issue before surgery, too.....even more than the cancer issue.  It would bug me when people would say, "I'd just cut them off and get rid of the cancer'...yeah, that's what I said too, when it wasn't me....and when it wasn't days before my surgery - when reality wasn't real. Now, that I'm two weeks, I'm not going to say it's any easier.....and some ladies tell me that even after two years they still miss their old bodies....

but at least it's done, and I can start healing physically and emotionally now.   Cry all you want now AND later...

if you haven't already, be sure and hook up with us on the January Mastectomy forum, too....it's all of us who have had or will have our mastectomies this January.

Blessings...Robin

Hi AmyD - I am exactly in your boat, and just started another post with similar concerns.  Has anything happened since?  I have not read all of your replies to this thread yet.  I feel guilty, too.  And a little 'out there'.  I am having DIEP in April (bmx 1/7), and even had one person tell me that I am so lucky and she wishes she could get a mx/tummy tuck so she could have a better figure! 

I'm scheduled for a mx in Feb. debating whether of not to get a bi-lat mx or just a uni-lat...one of the toughest decision I have to make, but need to make it soon.

nothing wrong with the healthy breast. It's unremarkable actually. I'm keeping my healthy breast and will go with reduction for symmetry.

Well I am 3 days after my bilat mx.. I must say I am still very emotional. This is the hardest thing I have ever had to deal with. Although relieved to have the cancer gone , It took a part of me with  it.  The pain still here. I am trying hard to keep a pos outlook on things. I have a great family for support and tons of food brought by my church family and friends. there are lots of well wishes but at the end of the day I still have lots of work to do on my own. Ugh!! wishing it was over.....

I'm scheduled for a uni-MX for Monday (Feb. 8). I'm hoping for a speedy recovery.

toni~

Thoughts & prayers for you on Monday!  Are they putting a pain pump??  If you are not familiar...it is called "On-Que" pain pump.  It is a device w/ a tube  that is attached to your incision site which then delivers pain meds in small increments around the clock.  It lasts for 4-5 days but it was HEAVEN in controlling the initial pain.  Ask you surgeon if he does this?  Not all doctors use this.  It is worth asking for though!!

Take care,

NAE

I will ask about the "on-que" pump. I hate pain.

colace and senekot work wonders for the constipation (that comes from the pain meds)---and drinking plenty of fluids helps too.

Anne

Good luck to you Toni on Monday.  I did have the on-que pump and it was amazing.  I kept thinking why does my belly not hurt at all and then realized after about a day that I had this thing hooked up to me.  I am 8 weeks out, back at work and functioning pretty normal. I cannot wait for stage II.   Something else that I found worked great for those nasty side effects of pain meds is a juice called Plum Smart.  It actually tastes pretty good too. 

In my opinion, the question is can you live with a 20% chance of re-occurance in order to keep your breast?

I had a similar choice / recurrance rate.  I was not emotionally ready to lose the breast, so I took the gamble.  The way I'm choosing to look at it, I've got bonus time with my breasts even if I have to lose them in the future. Of course, I might feel differently if/when I get bad news in the future.

Other women wouldn't be able to live with the anxiety and fear of recurrance.  It's a very personal choice between 2 awful options.

Petrified and having a hard time with the decision is normal.

Tamara-- Because of your young age, I assume your doctors have recommended genetic testing. If you do test postive for the BRCA mutation, that might sway you towards a mastectomy.  Definitely get a second opinion as you make your final decision. Like Sweaytspice said, only you can determie how much risk you can live with. I'm a  constant worrier so I did the bilateral (I was so small breasted that a lumpectomy would have left me with so little, that a mastectomy with immediate reconstruction was my choice after meeting with 2 breast surgeons and a plastic surgeon). Good luck with your decision.-- Julie

Tamara-H, I decided to have a MX and I haven't regretted that decision. That was almost 3 months ago and I'm glad I did. I "only" had DCIS in the left breast. I had had  a lumpectomy first with clear margins. The reason I decided to go the mx route is because I personally didn't want radiation -especially on the left side- and I didn't want to worry about recurrence. But it was a HARD decision. I agree with everyone else's comments--it's a personal decision and varies for everyone. I think you're going through the hardest time right now with the decision-making process. But continue to ask opinions and read whatever you can. I did all that and prayed and prayed. I'll pray for you that you'll know the right thing to do for you and that you'll have a peace. God bless.

I am 44 and was diagnosed in Sept with multiple areas of DCIS in my left breast.  I could have chosen to have a disfiguring lumpectomy followed by radiation and then reconstruction.  After alot of thoughts and prayers, my husband and I decided together to have a mx of my left breast and to leave my healthy breast in tact.  My genetics test results coming back negative and a clean MRI of the right breast played a huge part in this decision. 

I had a mx and DIEP stage I on Dec. 11 and do not regret this for a minute.  I have a fantastic group of doctors who counseled me through the decision.  God bless them all!  Like many other members have said, it is completely personal.  Some women don't want to lose the breast for anything and others say take them both.  I wasn't ready to give up both. 

Bookart -- I have also had the rope feeling. It does get better. Hang in there.  Physical therapy has done wonders for me.  I also completely understand the "survivor guilt" .  I know that I AM a survivor, but for so many out there to be struggling with so much worse, I feel sometimes like I don't deserve to say I am a survivor. My husband and friends remind me all the time that I still have scars, both physical and mental and, through it all, I am a survivor.  Does that make sense?