Feel alone. Anyone with mastectomy for DCIS?

frosty1

Congrats, Karen!  Sounds you are on the uphill road.  I just got back from an ultrasound (I had MRI last week).  They went ahead and scheduled 2 biopsies before I even had the ultrasound.  Radiologist says there is another "mass" of calcifications just above the one they already biopsied.  Another of concern is just under the nippled and she thinks they will need to do ultrasound biopsy to check that group.  Right it sounds like the mass they are looking at starts right under the nipple and extends about 5 cn to the edge of the breast.  Yikes.

frosty1

Just learned that I will need a mastectomy due to calcifcations far apart.  Both are DCIS, Stage 0.  I'm thinking about the "tummy tuck" reconstruction, but concerned about recovery time.  Any words of wisdom from those of you that had the DIEP or FLAP?

Nedeza

frosty1 ~

I was diagnosed with multifocal DCIS only in one breast & elected to do only a single MX.  I had immediate reconstruction with an exchange to implants.  I do not have the expertise as some of these ladies may have but come & check out Exchange City thread under the Breast Reconstruction forum.  There are many ladies who have gone through various procedures..DIEP, FLAP, etc.  I am sure you will be able to get some advice & answers!

Bless you!

NAE

sweatyspice

I believe DIEP stands for Deep Inferior Epigastric Perforator - the artery which is used for blood supply.

FLAP is not a procedure in itself, it just means you're using a flap of skin.  There are several types of flap procedures, and DIEP is one of them. 

I'd imagine that Exchange City is primarily a discussion about implant reconstruction, but I've never checked out the thread so I could be wrong (b/c I'm not personally interested in going the implant route). 

Implants typically require a tissue expander (TE) to be placed in your chest muscle, and the TE is then gradually filled with saline.  When the TE and your breast mound have expanded enough the TE is "exchanged" for the final implant.

The flap surgeries take tissue from somewhere on your body (the "donor site" - typically tummy, back, butt...) and that tissue (and a way to keep blood flowing into it) is transplanted to your breast. 

Flap surgeries are a longer operation and a longer recovery, but when you're done you're done, and it's your own, living tissue.

Implants are a quicker surgery and quicker recovery, then a few months of expansion.  There's more likelihood that implants will need to be replaced in the future.

Implants are sometimes not recommended if you've had radiation.

That's all I can think of for now. 

Feel free to correct me if I've described something incorrectly.

worldchampmom

I couldnt help but cry when I read your post. I had a masectomy last year after I was diagnosed with DCIS. It has changed my life. The surgery, recovery and reconstruction was a breeze compared to the emotional roller coaster! With no follow up medical care my mind is full of fear that something was missed or that I will get sick again. Every ache and pain I get I am convinced that my cancer has come back. My support system at home is ok but I feel like my worries are becoming a burden. Truly I am so very scared. Never been so longing for a friend to understand what I am going through. Will I ever heal emotionally.Can anyone help?

Nedeza

Worldchampmom ~

First of all... WELCOME...with open arms!!!  Six months ago...never in my dreams did I think I would be venturing in this path. Diagnosis, surgeries, & reconstruction all relative to this journey we have taken...eventually our scars will heal but the emotional aspect is harder to overcome.  I had a single MX & had my healthy breast augmented.  It is harder for me at times because  I have a reminder of what I had by looking at my healthy side.  The only follow up medical care I have is the Tamoxifin.  Because I only had one breast removed I probably will wonder if this could happen all over again with my good side even though I was told that there is nothing to be scared of.  There will always be a little part of me that will wonder for the rest of my life.

Since joining the BC forums I have found peace of mind!  My support system is HUGE now.  I have a wonderful husband, family, & friends but no one will truly understand what we are going through none other than the awesome ladies who have been or are still on this journey.

Do not be scared!  Most of all ..YOU are NOT alone!!!  It's OK to cry!  It's OK to feel angry!  We have all been there!

I hope you continue to join us & let us know how you are doing?!  We are here to listen!!

Gentle hugs,

NAE

dreaming

It is better to be aggressive with breast cancer,I work in a cancer center and it is better to be over treated than under treated.

,Never compare treatments, people make choices, believe you made the correct  one for you.

CyndiS

Well, my surgery went well on the 16th, but learned the DCIS is extensive and will need to get a mastectomy on the left side on Jan. 27th. Now going to genetics to see if I have the gene and will do both if so. I doubt it because no one in my family has ever had it. But then again, I have been surprised by a lot of things lately. Recovery from the lumpectomy is going fine, but having some issues with the SNB. All in all, I still feel fortunate. No invasive cells found! Phew! That's most important. Thanks for the good wishes!

QUESTION - I have this weird tendon in my armpit (side that had the SNB) that is tight, sore and sticking out - the doctor says to stretch it and I may need some rehab for it. What's up with that? Why is my tendon affected? It's really painful - did anyone else experience this? Any suggestions on how to stretch it? Will it go away? I am going to try to reach my doctor again this coming week, but just wondered if anyone else had this experience.

Nedeza

CyndiS ~

You may want to look up something referred to as Mondor's Cord.  It may or may not be this... here are couple of websites:

www.breast-plastic-surgery.org/mondors-cord.html       or  www.justbreastimplants.com/risks/mondors_cord.html

I had them on my MX side under the breast...eventually resolved itself.  Now I have them again but under my augmented healthy breast.  This one extends down my torso from the fold under my breast.  It can be tender & sore.  Feels like I am "tied" down or something.  Weird feeling.

I was told to take Ibuprofen & use warm wet compresses to soothe it.  Hope this answers your concern...but do continue to consult with your doctor.

NAE

CyndiS

Nedeza - thanks! I will look into it. I suspect it is not that because it is directly in the middle of my armpit and I can feel where the tendon (if that's what it is) connects to the arm bone. But hey - it's another gem to look forward to! I hope yours resolves itself quickly!!!

Always appreciate your insight - thanks

-Cyndi

Nedeza

Cyndi ~

You're probably right...I do know somewhere in all the postings...whether here or on another thread...someone posted info (website) showing pictures directly relating to symptoms under the arm pit...hmm.  Now that I think about this...I believe it had something to do w/ the lymphatics.

Good luck to you & hope you can get on the pic forum...it is a great resouce!

NAE

robinlbe

I'm having my bilateral mastectomy TOMORROW......no reconstruction.  I've decided to take it one step at a time.  I didn't have enough tummy to do both sides with the TRAM procedure, and I just don't feel comfortable using alloderm and implants just yet.  I'm going to wait and see how I feel about the way I look.....I must admit, I am worried and scared.  I had my husband take pictures of me tonight, even though my left side is mutilated somewhat from the lumpectomy on 11/18 (which was more a half-breast-ectomy).  Sure wish I had him take pictures BEFORE the very first biopsy, which was 11/4.  I'm grateful the cancer will be gone, but I don't feel as if I even have cancer...it's only on a piece of paper, you know??  There were only calcifications on the first mammogram, so no lumps, bumps, or anything.  It's not invasive (for which I give thanks!!), and I'll need no other follow-up treatment (another blessing)....but this mastectomy feels awfully drastic.  I'm not as young as some, but not as old as others....I'm a very young 50, who can still outrun any middle-schooler, who looks younger, and has a 12 y.o. (and is no where near menopausal stage!).

Anyway, just wanted to share that tomorrow is my bilateral.....

CyndiS

robinlbe - I will keep you in my prayers. I know what you mean about not feeling sick. My bs said that if you feel sick from breast cancer you are very far along and it is not where you want to find it. Still, it does seem drastic. BUT - it's the right thing to do. Be strong, ask for help, hold hands, and feel all of our support. Everyone here is holding you in a sacred space of hope and healing. Let us know how you make out when you're feeling up to it!

neversurrender

Good luck tomorrow robinlbe!  You will be in my thoughts.

frosty1

robinlbe -- you are in my thoughts.  I just met with my bs this afternoon and am scheduled for a mastectomy on Monday.  Yikes.  I too am holding off on reconstruction because while right now they see only DCIS, they are concerned about a spot right under my nipple.  And I am out on the job market right now scheduling interviews.  My PS said it would be better if I waited -- take care of the cancer first.  And if I wait a year, that's fine.  I'll be waiting to hear how you are doing after tomorrow!

Nedeza

robinlb ~

Sending you thoughts & prayers!  I totally understand about having to take such drastic measures when we don't feel "sick" because of the stage we are in. I told my dr. that I did not feel a thing...no lump...nothing.  Thank goodness for the mammogram that picked up my DCIS when it did.   I had a unilat. because my lumpectomy results came back with atypical cells in different quadrants of my breast.  I went ahead with the reconstruction.  This step (MX) is scary but to know that you will be cancer-free & will be there for your 12 yr. old is what matters the most!  I, too, am a young 49 year old with a 9 year old & a 12 year old.

Please keep us posted!!!  You have joined an elite group of ladies who are here for you!  I know you said you are having your surgery tomorrow...is your surgeon placing a pain pump???  It is called an "On-Que" Pain pump.  It distributes small increments of medication, usually local anesthetic, through a tube attached to your incision site.  It delivers the meds 24/7 & lasts up to 5 days.  It is a lifesaver & helps dealing with any initial pain.  It is not a common practice for all the doctors to use this so you may want to ask your surgeon about it...that's if you happen to get this post before you go in tomorrow.

God bless!

NAE

melissa-5-19

I was dx'ed with DCIS- had a BMX and NO recon for me! I am fine, my surgery was 10/19/09 and I will buy whatever size boobs I want at the time. Everyone says I look so good and I am only wearing foam forms as I had a little LE problem that needed addressing before I ordered prosthetics. I am the one who has to live with my decision and I really don't care what anyone else thinks- I am sure my onc feels that it was over kill BUT they weren't his "sick" breast. No chem , No rads.

robinlbe

Robin here - two days, post bilateral mastectomy.  Surgery was 1/6 and I got home the very next day.  My doctor called me with the results of my path report before I left the hospital, and all is GOOD!  I don't know exactly how many lymph nodes he took, but all were negative.  The rest of my left breast was full of DCIS, but the right side was clear.   And now, it's worry-free, too.  Between percocet (sp?) and ibuprofen, the pain is manageable.  Neighbors and church family have been bringing in meals;  my husband is doing my four drains most of the time; I slept GREAT last night (yippee, because the night before my surgery and the night after my surgery, I didn't get much sleep).  The one thing I was NOT prepared for was how concave I appear to be.  I expected the incision and the flatness, but my BS assured me I would not be concave because I didn't have extra weight on my trunk area.  However, the upper part of my chest looks very concave.  I'm hoping it's just because of the drain tubes - if not, I look like an emaciated prisoner of war.  I sobbed for 30 minutes the first time I saw "me"....today, I was better and had my husband take pictures of me.  Drains and all.  I figure it might help someone someday.

I'm journaling/blogging all my journey.  I know we each have our own story, and you may not want to read anyone else's, but if you're interested in mine, just send me a personal message, and I'll send you my caring bridge address and you can read it all there...

blessings to all...and to frosty1, you'll be in my thoughts and prayers as you go down this road on Monday....if you want to compare notes, feel free to send me a note....I'll be just five days before you...

Thanks for all the thoughts and prayers, ladies....I'm sorry you all have had to go down this road, but I'm glad you're here for me...

Nedeza

Robin ~

Glad to hear all went well.  It is overwhelming to see one's self for the first time.  Sounds like you have one of those DH's...aren't they wonderful.  Keep us posted!

Hugs,

NAE

deb5

Your experience is similar to mine I had left masectomy and implant and lift on right side. I was 50 when I found out I had it a year ago. It was early and I didn't need other treatments. I wonder if you had pulling across your breast especially when laying down and when get up first in morning? Does your shoulder and arm hurt mine does all the time. I don't have lymphdemia in it but it hurts most all time. I am thinking I should not have had the reconstruction. It has been a year since first surgery and permanent implant in April. I think it should be getting better.

CyndiS

frosty1 - I was laid off at the end of May and had been looking all year. Was dx 10/29, and of course, the interviews suddenly started pouring in in November! I was concerned about starting a new job while going through all this, but really needed to work on a number of levels so I can understand you are anxious to get back to it. I had a lumpectomy on 12/16 and th very next day I was offered a job. I faintly remember the phone call through the anesthesia haze -- it was with a company I worked for a couple years ago and it has been such a blessing. Unfortunately there was a lot of DCIS in the margins and I am going for a umx on 1/27 - they are being awesome. I will be thinking of you Monday - and will watch for an update when you're feeling up to it. Good luck!

Robin - I can't imagine how you feel (yet), but congratulations on the good news! So glad to hear all was good - and nice that you got the results back so quickly. Rest and heal well!

frosty1

How wonderful that you have made it through the surgery hurdle.  And thanks for all your words of support and encouragement as I enjoy my last weekend before surgery.  I have mixed feelings -- anxious to get it over with, but mourning weird little things, like my bra

Nedeza

My heart goes out to all those pending surgeries.  Just think...you will be cancer-free!!!  This is a life changing experience but all of you will pull through it!

Frosty~

I think it is normal to feel anxious about the surgery...or to mourn over loosing our breast(s).  This is not an easy journey by all means.  One thing though...we have each other!  No one should have to go through this alone!  This is what is so wonderful about this BC.org.  Sending you cyber hugs!

CyndiS ~

Thoughts & prayers go out to you too!  I go in this week for my 7 wk. post exchange appt.  I can't believe it has been this long!  WOW!  Talking about being anxious...I am a little nervous about this appt.  I'm just adjusting to everything although I do have issues but not looking forward to another surgery (lift) any time soon.  I'm just getting used to "me" right now.

Hugs,

NAE

kibby

I was diagnosed with DCIS on 12/29 and had a mastectomy on 1/6.  No nodes removed and the pain level never went over a 1. The worst part was having to stay overnight in the hopsital and not sleeping a wink the entire night! I go tomorrow to have my drain tube removed and find out if there were any surprises in the breast pathology done after surgery. My mother also had early stage bc at my age, 59. She had a mastectomy and had it again in the other breast 20 years later and had that one removed also. She is now 85. Neither my OB/GYN nor BCS has mentioned having BRAC gene testing. I'm wondering if I should and start having other body parts removed? When I take the BRAC quiz on the website I don't fit into the profile. Any opinions would be welcomed and good luck to all who are facing a challenge.

CyndiS

Kibby - I just had genetic counseling to decide if I wanted to get the test. I have zero family history that causes a red flag, but because I am 44 and dx w/ dcis (plus a skin cancer dx recently) - that is two red flags. There is some link to the two. I understood that family history is not the only thing that can red flag you. For me, I didn't understand why I wouldn't - they said it is almost always an emotional reason to not do it (don't want to know, can't live with the knowledge). But after getting two cancer dx in two months, and now facing a umx, I want to reduce my chances of this happening again. If I am positive, I will get a bilateral mx plus the ovary/tube removal. I am not having any more children anyway, and am looking forward to being a healthy, vibrant, active survivor. I wish you the best of luck on your results! No matter what happens, you WILL be okay!

lmkalman

Just got home from MRI guided biopsy.  Took three hours and they took 8 tissue samples.  Heard the doctor say through my ear plugs something about getting more medial tissue.  What does that mean?  Should I be worried that it took so long and they took so many samples?

Worried now more than I was!!

Nedeza

Kibby & Imkalman~

WELCOME ladies!  Kibby, I did not fit the profile either although...my mom had the DCIS at age 70.  I was told by my genetics counselor if my mom had it much, much younger then it would red flag me.  There is no other history but as we all know we don't have to have a history to be diagnosed with BC.  I have an appt. with my onc. for a follow up next week & I think I will ask whether I should have the blood test any way??  I had a single MX with reconstruction & an aug. on my healthy breast.  Tamoxifin is my only follow up treatment. Although I am satisfied with my diagnosis I think I will still wonder now & then if a single MX is all I needed.

Imk44 ~

I believe medial tissue refers to location...not a condition of the tissue.  I am a dental hygienist but I still had to take anatomy & physiology.  Best thing to do is just ask your physician.  It shouldn't hurt ask.

Bless everyone!  We're all in it together...& together  we will prevail!!!

NAE

worldchampmom

NEDEEZA    You are a special girl. I can tell that you have been thru your share of hell and still you offer great support to others. Thanks for the kind words. I appreciate the thoughtfulness you shared with me. Wish we lived closer! Hugs back at ya

Nedeza

Worldchampmom~

Thank you for your thoughtful words!  I remember you....how are you doing?  I know this has been a difficult journey for you...for all of us!  It is wonderful that we have THIS to get the support we need.  Not everyone is going to understand especially when it comes to the emotional aspect of the aftermath.  Unless they've been there it is not the same...oh...vastectomies don't count!  LOL!

The last time & only time I visited Oregon was nearly 30 years ago.  How beautiful!!  Went to Mount Hood & Portland.

Hugs back to you!

NAE

worldchampmom

NEDEZA  Hey so nice to be remembered. When I said I wished we lived closer I meant in the warmth of southern Calif! Its so cold here in Oregon. Lots of snow and winters are so long. I really get cold chills now since my masectomy. Enjoy your posts they keep me smiling. Stay warm girlfriend and thanks.