Feel alone. Anyone with mastectomy for DCIS?

Just take one day at a time. It is an emotional roller coaster, but physically and mentally we are all stronger than we think that we are. It is a difficult process, but somehow we get there. I opted for bilateral also because I wanted to do everything possible to try to put this behind me. Don't rush into decisions is absolutely correct. Make sure that you make the best possible decision for you.

Hi there - thanks for the reply - I have regained my flexibility but thanks for masssage info.  I do have some scar tissue that is looking kinda lumpy and I was wondering about what to do about that.   I usually do my stretches in the shower also.  Happy Thanksgiving.

CyndiS ~

You're in the right place!  I was dx'd last July w/ DCIS in one breast.  I had my unilateral MX with immediate reconstruction in August.  I just completed my "exchange" of my temporary implant (tissue expander) to a perm. silicone implant.  I also had my healthy breast augmented with an implant.  Now...I am waiting to have a nipple reconst. with tattooing.  Being dx'd is scary...esp. with having young children...I am 48 with  12 & 9 yr. olds.  Mentally & emotionally it can be draining but as you even said "you have to do what you have to do".  My husband & I agreed we need to look forward & be positive of the outcome.  We need to remain calm & healthy mentally!  For me...it has been prayer & support from family, friends, & support groups like this.  I did not come on board here until after my MX.  I wish I had sooner because it is so scary to go about this alone.  I have a wonderful group of women here who have given me so much information, advice, support, & most of all love!  We are a SISTERHOOD here!

I decided to keep my healthy breast.  Yes..I have heard others doing a bilat. for peace of mind or to have symmetry.  My drs. assured me that it was NOT nec. in my case.  My husband felt the same.  I now had my reconstructive surgery and I am elated to say it has been a success!  I have symmetry & "they" look wonderful!  I was afraid that it would not be balanced but so far so good!  There is another thread called Exchange City on this forum.  Take a visit...join us for info., insight from women who have been there & with those who are still going through this journey like me.  Once you have posted enough on these forums, there is a forum with pics to view.  This can only be accessed with authorization once you have posted numerously. This has given me so much inspiration!

We are all here for you!!!  Ask anything & someone will be here for you!!!  God bless you!

NAE

KarenPB1951 ~

Welcome!!!!  You have joined a great "Sisterhood" here.  This whole journey you are about to partake can be frightening & overwhelming but don't be afraid...we are here for you to comfort, to give you advice when asked, to give you hope!!!!!  I joined after my MX & had wished I began sooner...you have a head start...we will walk right a long with you every steip of the way!!!

I, also, & many of us here on the forum belong to many different threads. The most helpful thread I was introduced to is called Exchange City. It is here you will find a group of wonderful, enduring women ever to be found in a support group!  Come & join us there!!!!

God bless.  I will be praying for you next Wednesday!!!

Many Hugs, NAE

Karen ~

God bless you!  I was just posting at the EC (Exchange City).  Looking forward to seeing you there!!!  You will feel so much comfort there!!!

Many hugs!

NAE

I am also a DCIS gal who chose bilat mast with reconstruction.  I am being followed by oncologist every months for tumor marker tests. (Not sure if he will kick me to the curb in 5 years or see me less often)  I saw my PS at 6 mos post tatts - I will now see him annually so he can watch for ruptures, etc.  ((HUGGS))

OK - today is the day and this is my first post. Don't mind telling you that I am going into this whole thing kicking and screaming, not that I have a life threatening disease.  I am not a member of this "club", not into the Pink thing and just want to get this over with so I can get back to work.  Yet - here I am posting and sighing, with tears flowing at the thought of all the feelings that women have and the total stranger comraderie and instant friendship that has brought everyone together on this site.  It makes me truly thankful for the humanity and goodness that lies at our deepest core and hopeful about the human race.

A friend of mine told me "Happy Mastectomy Day" last night as a measure of good luck and my husband referes to my impending procedure in 4 hours as my "Boobectomy".

Soooo, at noon, I am going under, after mammographic finding of microcalcifications that appeared as a new sprinkling of salt in my right breat, turned out to have an incidental diagnosis of DCIS upon biopsy (unrelated to the microcalcifications), had a sentinal node biopsy (neg), left boob biopsy (neg), and a right breast lumpectomy with 5 of 6 clena margins -  findings of camedo necrotic cells, with microinvasion (3 cells escaped the ducts).  The not so good margin is right under the nipple.

They are going to try to do a nipple sparing technique - we'll see - and put an expander in.  Later they will augment the left with an implant to match the right implant.  No radiation.  No systemic drugs.  No reconstruction with my own tissue for now - if I hate the implant they an always do that later.

 Thaaaats all for now Folks - wish me luck and thanks for providing me with such a positive perspective.  You women are tremendous!!!

Sooo,

I had a mastectomy of my right breast 3 weeks ago. Microcalcifications were spread throughout my breast so a lumpectomy was not an option. I could not coordinate reconstruction and surgery, so I had no expanders or reconstruction done during surgery. I had very little pain and was up walking the dog and doing laundry by day 3. The physical therapy exercises (stretching of arms) was more painful at the site of the node biopsy then at the mastectomy site, but I have now pretty much regained full range of motion. The things that helped me most during that "whirlwind" from cancer diagnosis to surgery and now followup with an oncologist, has been the prayers and love of friends and family, and keeping a positive outlook. Healing happens on many levels. Thank you ALL for your support, words of encouragement, knowledge and humor!

Get another onc Nedeza - they don't all think that way.  You need someone who doesn't pooh pooh your dx

OK so now what?

Am 5 days post-op, with black skin areas at the bottom of where the boob was removed that could be ischemia, i.e., dying skin, or not.  On day 2, they removed 50 cc's of saline from the 100 cc's they put into the expander in the OR, to optimize the chance of the skin surviving.  Drains are still in and I look deformed, with big indentations under my arm pit and side muscle, and swishing where my boob was and shooting pains in my arm pit.  Good news - nipple was spared.  Good/bad news - there was more DCIS in the breast tissue removed.  Good news - nodes still neg.  Pain is still there and sleeping is rough, despite 2.5 mg of oxycodone.

Look like a concave black and  blue rag doll with no feeling at this point.  Just hope my body does not reject the expander and really want these damn drains out!  Wish I could fast forward to 6 months from now and have it all be over!

Will I ever look normal?  Will I ever be able to "feel"  the skin on my boob? 

Well, my surgery is tomorrow morning and I am trying to not let the panic attack in. It's knockin' at the door. I figured if there is anyone who can understand the anxiety I'm feeling, they are bound to be on this website. My BS is confident he can remove the DCIS via a quandrant lumpectomy, and is also doing a sentinal node biopsy. I feel so "fortunate" based on some of the diagnosies some of you are facing. I was very close to needing a masectomy right off, and am sort of prepared if it comes to that -- if my margins aren't clean, that's next. I'm wondering if that would have been a better option (no radiation, reconstruction and PS to get everything symetrical). But it just seems like doing it in stages will give me time to adjust and at least I tried, although tonight I am not so sure I like not knowing. And I don't know if I will wake up with my nipple or not. I have atypia cells that run from the outer edge to behind the nipple and he is going to remove it all. I am scared. I know in the end everything will be okay but tonight I cannot help but feel all the emotions. You women all seem so brave and although I have had my brave moments, tonight I just feel frightened. I just wanted to admit that to someone who would understand. I don't want to let my husband or Mom know. I think it would just make the fear more palpable. So thanks for listening ladies. You're all awesome and I know you are supporting me in thoughts and prayers -- because although I don't post much, I have been reading your posts and keep all of you in my thoughts and prayers.

 Deep breathe...

CyndiS

I posted the same way you did just about 10 days ago.  The worst part of the whole thing was the anticipation.  The relief you will have when the surgery is over will carry you for a while.  I had Rt. Mast. with Recon. and a left reduction.  I have Dr. appointment today to remove the last drain.

You are in my thoughts today.  I wish you peace as soon as possible.

Just read your post.  Was diagnosed today with DCIS in my left breast.  I haven't met with a surgeon yet, but I want both breasts removed.  I lost my mom to BC and I don't want to have to deal with this again. 

Just diagnosed last week, met with the breast team yesterday.  Because I"m pre-men, they have me meeting with genetic counselor.  My dad's youngest sister had breast cancer, but no one else in the family.  I got laid off in November, so want this done NOW so I can focus on finding a new job.  I wasn't sure which way to go, but feel a lot more comfortable with a mastectomy now than I did before.  But worried about recovery and starting a new job.  Thanks to all of you that have posted and gone before ... it definitely helps to  know I am not alone.

I want to ask a question about the reconstruction.  Its been a little over 2 months since my bi lateral mast and immediate one step reconstruction.  The breast that had no cancer is giving me a little bit of trouble.  First I have a slow healing area which is healing SLOWLY.  That side looks and feels tighter and harder than my other side which is fine.  My PS said that its not capuslar contracture, but is going to put me on some meds that will do what??  I don't know because he spends about 120 seconds with me each time I see him. I see him on Monday and am really going to pin him down with some questions etc.  The right side doesn't hurt and does not appear to be infected but it is definitely harder and I am wondering if anybody else is going thru this  or has gone thru this etc.  What meds could he be talking about...something to break up scar tissue??