Emotional side of DCIS/mastectomy

mrenee, your post was a real encouragement to me!  You are just 2 wks out from your exchange surgery, and you said that you are beginning to heal.  My exchange surgery is next Thurs, (Valentine's Day...isn't that lovely!!!), and I have no idea what to expect.  I, too had a UMX.  I am SO anxious to get this TE out, but I'm sure not looking forward to another surgery!  I'd love to hear from some of you concerning if you had to spend a night in hosp. after your exchange surgery. I was thinking it was a pretty minor thing, and then my PS said that I'll have a drain afterwards for a week, and I began to think, "Uh oh, this may be more involved than I thought."  You're so right, once we've heard the word "cancer", life takes on a new meaning. 

mrenee,  Thanks so much for answering my questions.  You poor thing!  You ARE having a tough time!  I'm not having anything done on my right side...just want the least surgery possible. (I've even wondered at times if I made the right decision in having reconstruction.)  My PS said my exchange surgery would take 1.5 to 2 hrs.  Your's probably took longer because of the right side lift, but wonder why you're having the arm pain???  Did you have to spend the night in the hospital?  My doc made it sound like I could almost jump off the operating table and jog home...maybe so that I won't dread it so much.  Again, thanks for your help!  Blessings!

I had my bilateral a week ago today. DCIS stage 0 no further treatment needed. I did do reconstruction using my latissimus dorsi muscle and so I am fully in recovery mode.

The phantom nipple sensations started yesterday and those kind of bummed me out. Was outweighed by negative path report today and having four or the six drains out! Woohoo.

Lou Ellen, I'm so thankful that you got a neg. report from your path report! That's HUGE!!! Amazing that you are doing so well after only a week!...and only 2 more drains to go!  

Gardengirl,  each person has to make her own decision, obviously, about UMX or BMX.  I also have (had?) DCIS, stage 0 and decided to go with just the one side.  That was in Sept. '12.  From seeing your beautiful picture, I can tell that you are MUCH younger than I am, so that may enter into your decision.  I just wanted the least surgery I could have.  My thinking is that if cancer shows up on the other side, well then I'll take care of it when and if it happens .  I've read many posts of a lot of women who have had UMX and are happy with their decisions and just as many who have had BMX and are satisfied with their decisions.  Blessings on you as you adjust to having DCIS AND as you try to decide which surgery is better for you.

I am also facing bmx on March 8. Although I know this is the best choice logically, emotionally I'm still trying to come to terms. I have also had people tell me I'm making too big a deal of this as its only dcis. Thankfully I have more people who support me.

Karrie

I have read this thread with great interest.

I too was Dx with DCIS, I was told that if I was going to get Cancer, this was the one to get. "Oh Yeah! really!"

I must say here that I have never before felt such all encompassing, terrifying anxiety and desperate fear during the waiting stage between Biopsy Dx and surgery. It was brutal!

I was very fortunate that I went to a facility with the newest most up to date Digital Mammography Machine for my routine Mammo. Had I gone elsewhere, and had another analogue mammogram like the last one, I may not have been so lucky. They had my previous films when I was called back and could not be sure if the DCIS was there in that previous one. It stands to reason then, had I gone back to that original place I may have had another clear result from that machine, and then another two years down the track I may have had very different result.

For this, I will be eternally grateful.

I found my Surgeon, and he told me I needed to decide if I wanted to have the Lumpectomy and Radiotherapy, or a Mx and SNB.

For me that decision was a no brainer. I didn't want to have Radiotherapy if I could avoid it, for the obvious side effects reasons, and also because I would have to stay in another town during the treatment because I live over two hours away from the nearest facility. My Husband is a C5/6 Quadraplegic after a Hang Gliding accident 35 years ago, so I didn't want to leave him for that long with just his attendant carers to look after him.

I was also told I wouldn't have the absolute and final pathology till after the surgery, but my Surgeon "Wasn't expecting to find anything else."

I took that to mean, after I read Beesie's DCIS information (thanks so much again Beesie!) and did some other research, that I was one of the lucky ones who actually caught this thing really, really early, before it had the chance to become something far more sinister.  Ok, the tradeoff was I was going to lose a body part for that end. Could I handle that? Was I going to have a reconstruction?

Hell yeah! I can do that, and no, I don't think I need to have a reconstruction. It is hard to explain, but I really felt empowered.

I spent a horrible night, on my own, in a Motel near the Hospital because I had to be at the Hospital early the next morning for my SNB and then my surgery. I decided that I would have to detach from my right breast, so I actually spoke to it, saying "You've let me down, you have to go!" As silly as it probably sounds, that worked for me.

I had my surgery the next day, just days before Christmas and was home the following day. I felt fantastic.

I had a few issues with a small infection, Seroma, and Mondors Cording, but nothing major. During one of the visits to have a Seroma drained I received the Pathology results that I had been quietly fearing for the past two weeks. The Surgeon went through the two pages of information in detail, Pure DCIS, 11mm mix of intermedite and high was the Dx. His final words were that he could tell me that because of my decision to have the Mx, I was effectively cured, no further treatment required. Ongoing, six monthly testing of the other side, of course. 

The feeling of elation was just unbelievable. That moment was when I realised that I was having a "Breakthrough, not a Breakdown!"

I am about seven weeks post surgery now. I was fitted aweek ago for a prosthesis, bras, and a fantastic camisole top with a bra fitted inside. I feel confident when I am out, and have no problem going bra-less when I am home. My scar has healed really well, I massage it daily  with Aromatherapy Oils, and I expose it to the sun for 15 minutes a day for the bacteria busting UV. I am getting the feeling back in those weird numb, pins and needles feeling areas, and the lump under my arm is gettting smaller.

Do I feel disfigured? No I really don't. Different, yes, but this is the new normal for me. I know I am older than a lot of you, 60 next birthday, so maybe I would have had a different experience at a younger age, I really don't know. For me, right now, life as a "uniboober" is just fine.

I do feel for those who are having a really bad time with this, I know everyone's journey is different.

When I hear the comments about DCIS not being Cancer, and I hear them, I don't feel offended or uncomfortable. I am just so grateful that I caught it while it was "just" DCIS.

Great thread.  

I too have felt a little outside of the BC group.  The women I know in my community all had invasive, all needed mx and chemo and rads (except one).  They never looked at me differently then themselves or commented that I was lucky, they just embraced me as a sister.  Two of them passed away in January, both younger than myself by 15yrs - and its been overwhelming the feelings of emotions I have felt.  Survivors guilt, gratitude, depression and anxiety over my own dx.  

Thinking I didnt get the bad cancer - had kept me from reaching out to these women sometimes - thats not what I need.  Its cancer, no matter what you call it.  Tho everyones journey is different, even among women dx with dcis, we all had to face our mortality in that moment when we heard the words cancer for the first time.  None of us will ever be the same as we were pre-dx.  My friend who passed, in the midst of her final year dealing with pain, chemo, mets...she'd always hug me and ask me how I was doing.....always.  And knowing what she was going thru, I could never share it because it was really nothing compared to what she was going thru.  

Do I consider myself a survivor?  After this year and what ive been thru, and watching my friend die, and going to 3 funerals in 6 months........damn right Im a survivor!

I went pretty public with my friends, posted on facebook about my dx - why?  Because I wanted my g-friends to get their mammos!  I was 54 and never had a mammo and didnt plan on getting one.  I didnt want the rad exposure - that still makes me laugh now that I am post rad treatment.  It wasnt until several of my friends were dx with bc, one with cervical (all under 40) that I thought Id better get my ass in there.  My first mammo - they found what I could not feel on self breast exam, nor could my doc find on my annual exam the week before.  So yea, I was telling everyone, even strangers - to go get checked.  I have a major mistrust issue with western medicine too, but had to surrender to treatment.  Its been.......an education to say the least.

Just came across this quote - thought it was appropriate:

Hi, Michelle,

You go, girl! I understand your feelings. It really is a slap in the face for an oncologist to tell you that you had "pre-cancer," especially after you've had a mastectomy or radiation. If we'd been told that before treatment, I doubt many of us would consent to the treatments they prescribe. And you're right: crying is good therapy. Sending hugs your way!

Shellshine, what crappy treatment by that doctor and nurse---I'd dump them too! So sorry that you find yourself having to deal with all of this. As far as the crying, I still find that most of the time I'm just fine and moving on with the normal routine of life.  But sometimes, and always when I least expect it, it hits me.  That damn cancer box on the health forms always gets me. This is something that will affect us forever in one way or another, even in ways we don't know yet. 

I'll be hoping for good news for you on this journey.

Shellshine, I am just so thrilled to see this post from you. That's more like you! Sounds like you had a great night.

After reading about your bad experience I wanted to say, "kick those two to the kerb where they belong!" but you did it anyway!LOL

I like to think, and say that I had a "Breakthrough, not a breakdown!" That's exactly what you've done here too.

Great to see you back to your wonderful positive self!

Onward and Upward!

I had surgery for DCIS this week and am sitting here waiting for bs to call with path report. Just spend an hour with new shrink.  Just cried for an hour. 28 yo son picked me up from hospital,  spent wonderful hour with me in recovery room, haven't heard from him since.  ONLY people with real compassion are women who have been through it.

My mother survived a radical mastectomy in 1947 without any emotional support group, NEVER once in my life said anything about it, nor did I ever ask her anything. Very different era for women and all of society's attitude about "the big C" ( People NEVER said the word out loud).

Now there is hope, open conversation, and women with bc who are like Amazons, in every sense of the word.

Whoop!!! Clear margins from path report!

Emotional abuse of people with cancer and their loved ones was very prevalent up until very recently and STILL exists.

It's because doctors thought they knew what was best an (couldn't take the emotional side of medicine, i.e. bedside manner) and hated admitting they didn't have a protocol or cure. 

I had DCIS and I am happy to share the logic behind my bmx.  I had a strong family history.  My mom had DCIS at 41 and choose lumpectomy and radiation.  Then at 57 she was dx with Stage II that had spread to two lymph nodes in her other breast.  If she'd had a bmx, this likely wouldn't have happened.  She had the spots on her mammogram for 5 years before she finally pointed them out and asked dr what they were.  Her dr. told her she'd would biopsy them if it made feel better considering her history - how freakin generous.  Turns out those spots that were there for 5 years was in fact cancer that had 5 years to spread.  Luckily it was grade 1.  BTW, my breasts looked better one week after the bmx with tissue expanders than her breasts after her lumpectomies which were in my opinion- partial mx.

The second reason is that one of my best friends was dx with DCIS at 41 and because she had BRCA she went with bmx.  Thank goodness she did.  They found 5 small invasive tumors in her healthy breast.  These tumors didn't show up on MRI, Mammo or US.  It saved her life.  Also, her new boobs are awesome.

The final reason is that I knew I would likely have better comestic results if I did it before any radiation.  Also, my friend mentioned above had a nipple sparing mx and I knew based on the location of my DCIS, I had a good chance of being able to keep my nipples.  The risk I took with the NSM does worry me from time to time, but psychologically it has made such a difference.  My drs don't do many NSM, they had one cancer spread to the incision site.  But I work with a woman whose cancer returned on her insicion site and she didn'thave nipples or have reconstruction.  I am keeping my fingers crossed. I only met with my oncologist after my bmx and he was very cool with the NSM.  He is not concerned at all.  That made me feel a good about my decision.   He also was supportive of my bmx for DCIS.