DCIS and Mastectomy?

proudtospin

yes, I read that article, good one and certainly not unique but like many here

tlew

Greenmonkey, I'm so sorry you had to go thru all that.

When I as first diagnosed I felt I had to deal with the stress that came with having BC, getting all my tests done and shopping around for a good BS and PS that worked together. Finding a good PS and BS that worked together in a good hospital wasn't easy. Its almost like shopping for your right shoe and then finding a matching left shoe. And at the time, my focus was mainly on getting the cancer out. I didn't even think about the reconstruction and how messed up that can get if you chose the wrong doctors.

From my experience while I was shopping around: I found a great BS that worked with a not so reputable PS and in a sucky hosipital. I was torn that I couldn't use that BS because I knew nothing of the PS that she worked with. So I had to go do my own research on the internet and read review and bios of BS and PS and deep inside I felt the cancer time clock was ticking. I felt really rushed into a decision. At the end, I just pushed myself and made the decision based on what hospital I wanted to get it done and then searched for the doctors I wanted to be involved. I can't believe I only met with my PS once and went into surgery with her. In my case, I lucked out and got decent results, but it could have been really bad if I chose the wrong doctors. From reading alot on these forums, I realize a lot can go wrong.

Now that I am all done with the TE and Implant reconstruction, I look back and I really think I threw myself into the surgery room. For all you newbies, make sure you do your research, get referrals and make sure you get a PS with hell of alot of experience with "Reconstruction". If you can't find 2 great BS and PS that works together, delay your reconstruction.

GreenMonkey

so many of us jump into reconstruction. I agree 100% tlew  so glad everything worked out for you. 

mj12

Kate -- I LOVE your post re: yes their fake, the real ones tried to kill me.  I laughed out loud!  I needed that humor!!!

CindyLooWho

I loved that quote too!



Got my BMX date today...10/23. I'm scared and happy and scared...but waiting was worse at least now it's starting.

Momluke

I'm glad you finally got your date! I totally understand that feeling. It is the epitome of bittersweet. I called my date (9/7/12) the date of eviction for my cancer because it was not welcomed in my body! People would ask when was my surgery and I would say "the eviction will be held on Sept 7th".



Hoping that all goes well! Keep us updated!

CindyLooWho

The eviction...love that!

Moonflwr912

Cindy, glad you got a date. Momluke, love the eviction quote.

dessert1st

I am new to all this and thank you green monkey for your Blog! I just recieved my surgery date and a little nervous about it being so far off. In reading through a number of posts, it appears that is not unusual. Is there a board or I am sure you all might have tips on what to expect after a MX. What to wear while recoup, how do you function with one full size and one expanding (TE Process ), and all those other unknown little things that no one tells you.

I have been reading various posts and this site has helped a lot. I still don't think i have fully faced or accepted this is happening to me yet as I am putting on that strong face for others. When it hits, it will probably be a Doozy!

Hoya03mom

dessert1st...love the name!  Sorry you have to go thru this, but this board can be a great help.  Check and see if someone has started a thread for your month of surgery.  It helps to be able to "chat" with women going through this at the same time as you are.  Also check out

http://community.breastcancer.org/forum/91/topic/699896?page=20#idx_588

this thread has a link of things to buy, etc that are helpful.

I found that trying to do more exercise, eatting right, getting plenty of water in the weeks prior to surgery will help maximize your recovery.  And can't say it enough...colace and sennokot and prune juice...and LOTS OF WATER will help avoid some of the worst side effects of the anestesia and pain meds!!

I had bilateral with muscle sparing TRAM about 9 weeks ago and beside developing a little lymphedema (I had nodes taken out on both sides) things have been pretty good.  TE is a bit different with its own set of things to deal with, but if you put TE in search box, you will come up with some threads on that.  Just remember that everyone is different...and more people that have problems tend to post.  I have known people that had great outcomes and some not so great.  A lot depends on your initial health, if you have had chemo or radiation etc.

Best of luck and know that there is a lot of support so keep posting.

CindyLooWho

Dessert1st...this is new to me too. Six month mamm on 8/24, biop on 9/4, BC dx on 9/5!



WTF...



I am the healthy tough one, project manager control freak. Put up a good front for awhile and then last week got my path reports and HER2+ status and started crying and couldn't stop. My poor husband came home and I was hysterical. So it will hit you.



Saw my BS. Last week and told him lets get this party started. Then whammy surg date 10/23. It's pretty real now.



Hang in there it's all we can do.

dessert1st

Thanks Hoya and Cindyloo, all good suggestions that i can check out. Cindyloo, there is chance my surgery will be moved up to the 24. so we may recoup together :-)

Kd6blk

One thing about this experience is that it affects each of us differently. I have had sad moments but never fell apart. So while some deal with it more emotionally, not all of us do. Each of us is so unique, just like our cancers. Best wishes to all the new ones on this thread. The worst part of this ordeal for me was the drains...I managed them ok with help from my husband but they got me down more than any other part. I am having nipple replacement and am pre-stage 2. I am sometimes thinking that looks a bit strange but otherwise the new boobs from DIEP Flap look great. Mostly, I am still stunned I ever had cancer. 

CindyLooWho

Hey Dessert1st I sent you a private message.



I'm kinda freaked about the drain thing. My cousin who is 3 years post surgery in November referred to it as "a shit show".



I just ordered 2 camisoles that open in the front and have pockets inside for the drains. A friend suggested them and said they were a huge help to her.



It just gets more real every day....

GreenMonkey

CindyLooWho, 

I STRONGLY urge you to get as much information from your PS as possible regarding the type of TE's he will be using. Also, will he be opening up the pocket below the natural fold? (where the breast meets the chest). And, reach out to whippetmom on this thread. The size of the TE's are very important. She is an expert when it comes to type, shape, size, etc. Will they be round? smooth? what profile? what size? The surgeon needs to take into consideration your proportions. The more you know going in the better.

Here is the link to Whippetmom's post on BRC.org:

Breast Implant Sizing 101 

Also, this may sound silly, but ask your PS if he and he alone will be doing the surgery. Mine didn't. He used two residents but "he was there for the important parts" and my reconstruction has been a nightmare.

Geez, I hope I got that right that you're having TE's.

Also, hospital advice: bring earphones so you can listen to an audiobook or music - whatever it takes to drown out the hospital noise. Also, an eye mask. If you can spring for a private room do it. If you can't the earphones are imperative. 

If you want to read my blog posts that chronacles everything from diagnosis to my BMX for DCIS to where I am now, I'll include a link. Pictures are involved but keep in mind the bad stuff that happened is because I blindly trusted my PS and he did not do the surgery himself.

My blog is greenmonkeytales.com and the cancer blogs are under a heading titled CATSTIR.

Best to YOU, Shannon 

GreenMonkey

why can't I figure out how to link things? 

http://greenmonkeytales.blogspot.com/p/catstir.html 

this should work 

CindyLooWho

Hi GreenMonkey I have been reading your blog, it's been great. I have my appt with PS on Wednesday, for measuring, photos etc. She is in private practice and it's not a teaching hospital, she is the only one that will be touching me. I'm told she is a perfectionist and passionate about her work. I loved her immediately.



I'm going to read whippets stuff and write down questions.



Thanks again...wake

me up when it's over.

keetmom

We just scheduled my surgery, Im doing bilateral due to a family history and a genetic disorder I have that neither rads or hormone therapy would be a good idea...Its scheduled for Nov 9...waiting for an appointment with the plastic surgeon....confident in my choice as I have SO much going on in life with a chronically ill child BUT just want it over and to get on my way to recovery.

GreenMonkey

CindyLW, soooo glad you found a PS you love. That is KEY! My gut TOLD me not to use him and I let my BS talk me into it. Best of luck to you  

CindyLooWho

GreenMonkey which hospital did you use? Are you in the HH part of the state? I live east of the river so going thru Middlesex, they have been amazing?

GreenMonkey

I'm in southern fairfield County. I went to Memorial Sloan kettering in the city for all the F*ckups and my new PS is in Greenwich. I love her. She's fixing all MSK's mistakes. 

CindyLooWho

Wow...who would ever have thought that. I'm glad you are in better hands. Fingers crossed you get everything you want.

coffee4me

Yes, I was told I have DCIS in my right breast, left was clear. I opted to have bilateral mastectomy with reconstruction, rather than lumpectomy and radiation. I thought if I have the surgery, I will never have to worry about breast cancer again. I had my surgery about 2 weeks ago Sept.28th. Still in recovery stage. I received a call today from my surgeons nurse, stating that she received my pathology report  from my surgery. The nurse proceeded to inform me that my left breast also had cancer too, I was shocked!! She validated to me that I had certainly made a wise choice to have the bilateral mastectomy! She told me a angel must have been on my shoulders. Hearing that news confirmed to me that I had made the right choice. I never have to second guess my decision!!

KellieDenise66

Coffee4me, how are you feeling? So scary how sneaky this darn disease is. Glad you went forth with your gut, and did the BMX. What a relief.



I had mine 9-24, for DCIS. My path came back with no residual DCIS in cancerous breast, and nothing in the other. I can honestly say even with this good news I have

NO REGRETS. I feel like I dodged a bullet. The decision was torturous, but I promised myself no second guesses, no beating myself up, no matter what!



Big healing wishes coming your way!

CindyLooWho

You both are making me happy. I am doing BMX too and I know it is the right decision even if the left is clear.

Momluke

I had a UMX and there are times that I regret not having a BMX. The fear of "what-if" can be paralyzing at times!

tlew

As of now, I'm also glad I did BMX. It saved me from additional treatments that I rather not have. The only let down is I won't be able to breast feed, but then again I may not be able to get pregnant again since I'm already in my late 30s. Oh well...

Beesie

Momluke, you need to give it time.  I had a UMX too and for the first year or so, I had a lot of fear. Then there were the 6 month mammos and MRIs!  Yikes those were scary! But with every month that passed, and with every mammo and MRI, the fear eased. Then one day I was sitting there in the hospital gown, waiting to go in for my mammo, and I realized that I wasn't the slightest bit worried. 

You are less than 3 months from your diagnosis and less than 2 months from your surgery. It's still so fresh. Of course you have fear.  But the fact is that I've seen lots of women who've had BMXs who didn't get rid of that fear for a year or more, despite having had the BMX. It's the fact that you were diagnosed that causes the fear; it's not the type of surgery you had that causes it. The fear is normal and it will ease with time.  You just need to give it time.  I'm 7 years out and I'm very happy that I decided to have the UMX and keep one natural breast. 

Momluke

Thank you for the encouragement Bessie! You are right...it is still very new to me.

GreenMonkey

Coffee4me, same exact thing with ME!!!!  my first mammo showed DCIS in right, and left was fine. then I went for a second opinion and was told my left side needed another mammo, then a biopsy, then it turned out I had pre DCIS (ADH) in my left and DCIS in my right so I went with the BMX. My final pathology report showed LCIS, pre DCIS, pre LCIS and DCIS in my left and right!!!  THIS IS WHY I ALWAYS ADVISE TO TRUST YOUR GUT!!!   Heal well it helps to know you made the right decision. I will never regret mine.