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All TopicsForum: Surgery - Before, During, and After → Topic: MASTECTOMY FOR DCIS

Topic: MASTECTOMY FOR DCIS

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Apr 8, 2008 09:28AM

thetrumumshow wrote:

Hi from the UK!!  In February 2006 I had WLE for LCIS. Following surgery I was told the margins were clear and needed no further treatment. I've had 6 monthly mammograms since then. Last July my mammogram was clear. In January my mammogram showed "changes" so I was called in for Core Biopsy which showed all sorts of atypical cell changes including radial scar, adenosing sclerosis.... So my Consultant decided to do another WLE to get a definitive diagnosis. This was performed on February 29th and the Pathology report has showed DCIS in the margins. It is ER positive, PgR positive and HER2 positive. My Consultant is recommending Mastectomy as she feels that my breast may well develop an Invasive Cancer in the future and that she's not sure how much of the breast is affected by the DCIS. It seems very drastic to me to remove my breast. Does anyone else have experience of similar surgery for a similar diagnosis? Has anyone else undergone any other form of treatment for this?

Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+
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Apr 8, 2008 09:57AM LorenaB wrote:

Hi there, I was diagnosed with IDC in December, small 1cm tumor.  I had a lumpectomy and SNB in January, followed by a re-excision in February (and 10 more lymph nodes removed, all clear, phew).  However, the pathology report showed "DCIS in all margins" and the surgeon does not feel confident that another re-excision would get all of it, so she is recommending a mastectomy.  I have not considered any other treatment options -- I just want to get rid of all the tissue that may have cancer cells.  So far all the other tests (bone scan, CT scan) have been normal and I want to keep it that way!

Good luck w/ your decision.

Dx 12/20/2007, IDC, 1cm, Stage II, Grade 3, 1/11 nodes, ER+/PR+, HER2-
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Apr 8, 2008 10:44AM crazydaisy wrote:

Hi Truman......I was Dx with DCIS last fall. Lumpectomy did not get it all. I am now 3 weeks post op from having had a unilateral mastectomy. Still waiting for final pathology. For me it was necessary to have the MX due to the size, grade and size of my breast and not getting it all first time round. Some ladies have had success with more rexcisions. At this point I have not considered reconstruction, maybe someday.

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain" Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Apr 8, 2008 10:51AM lvtwoqlt wrote:

Truman, I also had a history of abnormal mammos resulting in biopsies for ADH in both breasts. Last April I had an other failed mammo with another biopsy showing DCIS. This time I was tired of all the testing and biopsies so I had bilat mast done last June with expander/implant recon. I was so glad I did that. Emotionally I was ready to get off the testing rollercoaster. It is a personal decision.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/12/2005 Lumpectomy: Left Surgery 9/10/2006 Lumpectomy: Right Hormonal Therapy 10/12/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 6/1/2007 Mastectomy: Left, Right
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Apr 8, 2008 12:30PM puppyholic wrote:

Truman, I'm like Sheila. Had multiple needle and excisional biopsies with ADH in both breasts. When my last excisional was diagnosed DCIS my surgeon recommended bilat diep. Actually, she wanted to do it even before the DCIS, but I couldn't justify taking my breasts off without that cancer diagnosis. I finally had it done 9/19 and am having my stage 3 (and hopefully last breast surgery) on Thursday. I'm going to be relieved when it's all over and am happy to be rid of my breast tissue. Now I'm waiting for the results of my gene testing to see if the gyno wants to take out my ovaries. Fun huh?

Dx 8/2007, Stage 0, 0/0 nodes, ER+/PR+
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Apr 8, 2008 01:02PM hopefor30 wrote:

I was originallly diagnosed with DCIS via stereotactic biopsy -- an MRI showed rather extensive DCIS so I then had an excisional biopsy -- I did get clean margins, but they also found a 3mm tubular invasive hidden among the DCIS -- it did not show on the MRI --   I ended up with a mastectomy and I am glad to be rid of all breast tissue where further things can grow --

Besides, in my case, the WLE took out so much I was already deformed.   I had unilateral DIEP and look much better.

M.

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Apr 8, 2008 01:02PM thetrumumshow wrote:

Hi Newbie, I feel really sad at the thought of losing my breast though as so many people call DCIS pre-cancer.  I'm also worried about how this will affect my love life, even though my husband assures me he'll still fancy me like crazy!  I feel really lucky that after 25 years of marriage we still have a good and frequent sex life and I don't want anything to spoil that.  Does anyone esle feel the same way?

Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+
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Apr 8, 2008 01:34PM lucky32 wrote:

Hello, trumum, and welcome. This is a great site with lots of knowledgeable and supportive ladies.

Like you, I have LCIS. I'm in a research study which monitors cellular changes. The results from my last few tests have not been good, so my oncologist has referred me to a breast surgeon to talk about bilateral mastectomy. If I decide to do it, I will not be at all surprised if DCIS shows up when pathology gets the tissue. There are just too many cells behaving badly in there.

I think it is quite normal for us to feel sad about losing our breasts. This isn't a hangnail, for goodness' sake! My husband is saying the same thing yours is, and I believe him, but it is still an extremely difficult thing. Because I do not want reconstruction, I have found the site breastfree.org to be very helpful. My husband has agreed to look at some "after" pictures on the site with me, but said that it would be hard for him. I am not pushing it. We have some time and I don't want to rush him. (I've already looked at them.)

Since I don't have DCIS, I am not sure of all the treatment options for it. I believe that mastectomy is standard, but it certainly wouldn't hurt for you to get another opinion. We all need to be as comfortable as possible with our decisions. There is a DCIS board on this site, so you might want to look there as well.

I wish you the very best.

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Apr 8, 2008 09:03PM Viktoria wrote:

Hi, I also didn't want to lose my breast. I was diagnosed with DCIS and after 3 lumpectomy, they found more cancer each time and now I'm up to 5cm of cancer, stage 3.  I'm changing surgeons and tomorrow I find out about getting a bilateral Mastectomy after the last 3 surgeries I ready to be done with it and can't stand the thought of going through this again in 5-20 years on the other side. My Mom, both Grandma's and 2 aunts all had cancer in both breast, so now I'm considering genetic testing to see if I should have a hysterectomy also? 

    Of course had I known what I know now I would have had a mastectomy first and with DCIS they don't alway know how extensive it is.  My mammogram and ultrasound just showed a new area of microcalcifications.  

Good luck with which ever surgery you choose.

Has anyone gotten a Hysterectomy at the same time as their mastectomy or gotten reconstrutive surgery at the same time and how was it for you?

Dx 1/31/2008, IDC, 6cm+, Stage IIIA, Grade 3, 3/19 nodes, ER+/PR-, HER2-
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Apr 8, 2008 11:12PM , edited Apr 8, 2008 11:14PM by Tina337

I'm having a bilateral mastectomy tomorrow for DCIS in my right breast. Will have expanders done at the same time. After 6 biopsies in both breasts (needle vs. excision), I wasn't convinced that the other 5 were negative, even though the tests said so. I just didn't want to have more rounds of biopsies and live with the kind of anxiety that I felt during the last several months. The positive side to doing the bilateral (if there are no surprises), is that I won't need to have radiation or take tamoxifen.

Good luck with your decision. It is such a personal thing.

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Apr 8, 2008 11:23PM 3girls4me wrote:

A mastectomy for DCIS does seem like a MAJOR surgery for a "little" cancer.   Unfortunately, that's the quandry us DCIS girls are put into!   Little is known on what DCIS will do if left alone, that would be considered "bad medicine".   If they cannot tell how much of the breast is affected, then yes, mastectomy is usually recommended.

In my case, I had some DCIS found "accidentally" during a biopsy of a benign lump.   I had 2 excisional biopsies, both without clear margins.  At that point, surgeon offered to try a 3rd lumpectomy, but at that point, if it wasn't clear, my only choice would be mastectomy.  I opted not to try a 3rd time, and had a bilateral mastectomy last September.  Turns out the "good" breast had ADH approaching DCIS as well.  None of my DCIS showed on the mammogram.  I was 36 at diagnosis.

No one knows if DCIS will turn into invasive cancers.  I've read statistics of 30-50% will eventually.   Those are pretty high odds in my book.   Losing your breasts is hard to deal with.  But I am very comfortable with my decision and would rather mourn my breasts than worry about them taking my life.   It's a very personal decision, and my best advice is that you do all the research you can, but ultimately go with your gut instinct.

DX 6/12/07 Stage 0, Grade 1 & 2, 0/0 nodes, Bilat Mast w/recon 9/12/07, Exch Surg 3/21/08, Nipple Recon 7/29/08, Tattoos 10/1/10--finally DONE!
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Apr 9, 2008 12:11AM , edited Apr 9, 2008 10:51AM by kes

Hi Trumum,

I also had DCIS in the right breast and it was multifocal, could not get clear margins on an excisional biopsy of the right side. This was the "good" side. It was found on my yearly mammogram which was to watch the left side due to atypia. After talking at great length with my Surgeon, his recommendation was a total mastectomy to the right side and to consider doing the left also and to try and not save any nipples, which I asked about. At first I was only going to do the right side and there was NO WAY that I was going to do the left side. After talking to some mastectomy survivors, then I was going to do both sides and try to save one nipple. After talking to the Plastic Surgeon, who said that the one remaining nipple would probably not have much sensation to it, and after talking to my Breast Surgeon again and asking him what his bottom line recommendation to me would be, which was bilat mast and both nipples should be removed, was I able to come to the same decision as the Surgeon. It was a stressful time and a VERY hard decision to make. I was even holding on to some faint hope right up to the day before surgery that maybe I could keep one breast or just one nipple, but I knew what I needed to do for myself to stay healthy. I had a mother in law (loved her dearly) who had a 30 year history with this dreaded disease and I saw the last 20 years of her fighting this THING and I made my mind up then that if this ever happened to me that I would go for a bilat mast and have implant reconstruction. That is what I did. I didn't want to but I knew that I had to. Definetly the toughest decision I have ever had to make in my life. You will do what is right for you and your family. Best of luck.

P.S. My tissue expanders are in place and I have my exchange surgery on Apr.25/08 Also my final pathology report on the left side came back showing an area of Atypical Lobular Hyperplasia. I was sooooo glad that I did both sides.Also now I know that I did not want to go through this surgery again, and from the path report it looks like I would of had to of, down the road.

Kerry

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Apr 9, 2008 12:36AM lewisfamily503 wrote:

Just chiming in! I have been dealing with these issues since 2001 and this past year (Oct. 2007, I was given the news of DCIS. After extensive research and also, after talking to many women whom I know locally who have dealt with DCIS, I opted for a bilateral mastectomy. It feels like a no brainer for me, but i respect and understand each woman's decision based on their history and comfort level. I do NOT miss my breasts in the least! I am in the middle of my reconstruction, having had the mastectomy back in December and the exchange surgery is scheduled for June. I am SO at peace with the removal of my breasts and I LOVE my new "foobs" (even though I am awaiting my final implants!!! As I have said in previous posts, I was a VERY large breasted gal (DD) so I am very happy to be a B cup at this point and I don't bounce! I can wear tops with spaghetti straps and things that NEVER in my wildest dreams could I have ever worn!

My final pathology came back with clean margins on the dcis side! My other side had atypical cells so even though it wasn't dcis I am confident that it was at risk for future problems, so it was ALL good!! Plus, since I opted for the mastectomy, I didn't have to have radiation which was a whole 'nother can of worms!! Whatever you decide, I wish you the best of luck!
Anne

Anne Dx 10/19/2007, Grade 2, 0/2 nodes, ER+/PR+
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Apr 9, 2008 11:05AM kes wrote:

Hi Ladies,

Trumum and Anne,

I do miss my breasts and expecially my nipples. I was a full B and very comfortable with this. With the expanders I am now a full C and waiting for the exchange surgery which is Apr 25/08. PS said that she could return me to a full B or a small C which I will be very happy with. I do not want to be large. The waiting is the hardest part because you just want some form of breasts back, and to be able to buy nice bras again. Sometimes I just look in the mirror and I think "What the h*ll happened to you". I am definetly going through the mourning period now. But I know that my breasts were not worth the cost of my life. But it is a hard pill to swallow. The loss of nipple sensation is what gets to me.

Anne,   Your story and mine are very similar. I will let you know how my exchange surgery goes. I am usually on "continues tissue expander pain" or "anyone having surgery in April" threads.

Take Care,

P.S. When the surgery is over and things settle I am going out and buying all of the fancy bras that I can find and in every colour too.Look Out, there will be no stopping me!!!!!!!!!!LOL!!!!!!!!!!

KerryMoney mouth

Kerry

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Apr 9, 2008 11:39AM thetrumumshow wrote:

Hi Kerry, I just face losing my right breast but wouldn't you know it?  That's the nipple I have most sensation in and it's the loss of that that's upsetting me the most.  I also worry about how all of this will affect our sex life.  I consider myself lucky in that after 25 years of marriage my husband still feels the same way about me and we have a very fulfilling sex life.  I don't want that to be spoiled by all of this.  Does that make sense?

Trudie.

Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+
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Apr 9, 2008 12:23PM , edited Apr 9, 2008 12:24PM by danix5

Trudie,

Yes it makes total sense!!!  I felt exactly as you do, I am almost three months out from bilateral and I am happy to report we had sex 2 1/2 weeks out three days in a row and have been going strong since.

Recently DH was brave enough to kiss my Breast foobs, like in the clevage area and top and it was very arousing to me and I could feel it!  I do wear cami tops for me, he says he does not care.  I do!!

I just want to point out that little caressing of the new foobs was done with the turtle shell expanders in!!!!  Sooooooo if you can have fun sex with those pups in you can have fun sex with anything on, in or off your chest!  LOL!!  They are not at all sexy!!!

Good luck to you!  Check out a thread called I want my Mojo back.  Someone may have already suggested this sorry if I am repeating.

You could not possibly have any worries that someone here has not already worried about before you!  Really, and they may just have the perfect answer for you too!!!!

Foobs can be really sexy, it is mostly a mental thing for us girls!  So mentally fire yourself up to be the hottest babe in bed and you will have fun!!!

Dani

Dani DCIS, two areas rgt breast, grade 3 high comedo with necrosis Dx 10/23/2007, DCIS, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+
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Apr 9, 2008 02:16PM thetrumumshow wrote:

Hi Dani,  At last someone who's not afraid or embarassed to talk about sex!!  I find that on the UK site it's a bit taboo.  Have you been started on any hormonal therapy like Tamoxifen?  Cos I'm worried I will be and that can play havoc with lovemaking too.  I've never heard the term "Foobs" before, LOL Smile.  Who thought it up?  What surgery did you have?  I'm thinking about DIEP flap but have still to have the 2nd opinion I've been promised.  Another silly thing, I can't get my photo to upload!!  What am I doing wrong?

Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+
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Apr 9, 2008 03:42PM meemee wrote:

Hi Ladies,

So many stories are similar to each other. On march 6th I had my left breast removed due to extensive DCIS (apparently it had been growing in me for about 5 years). I was never given the option of having both breast removed and I wish I would have now.

I guess every woman feels differently but for me having 1 (43 year old breast) and nothing on the other side until reconstruction has been very difficult. I would rather be "flat" until I could get 2 new ones again !!

Thinking about it now and with a great possibility that in the future I will have to deal with all of this on the right side. I should have thought more about the future and never ever having to worry about DCIS for the rest of my life !

I wonder if I am the only one that thinks this way because I am so happy the "poison" is gone but so sad my breast is also gone.

Carole (Canada)

p.s. I also see many different opinions by surgeons/radiologists etc... from different countries,states and provinces.

Meemee / Carole Dx 12/2007, DCIS, 6cm+, Stage 0, Grade 3, 0/5 nodes, ER-, HER2+
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Apr 9, 2008 05:18PM danix5 wrote:

Okay Trudie,

Lets see question-

1. Hormone therapy!  No, I am not on any.  I will be having the distinct pleasure of having everything taken out of me and becoming as I have heard on a site relating to gyn issues the "Desert Oasis"! All dried up!  Layman's terms it means I am having a total hysterectomy with ovaries and everything out of there!!!!!  So surgical menopause will be my future.  Surgery is May 20th for that issue.  BTW, yes messing with your hormones can mess up our sex drive.  So many lovely ladies have stated to me that they are fine with both the " desert" and tamox or AI treatments! 

I believe that it is a very individual thing and unfortunately for you and I we have to wait and see! 

I am not afraid to talk about sex issues, hell I am human and like sex a lot!  That is how I ended up with 5 kids in 7yrs!!!!  Hormones and I have never been friends birth control pills made me soooo sick!  Pregancy made me sooooooooo sick, had  disorder called hyperemesis (sp), hormone related severe illness during pregnancy.  Deliver those pups and hormones settle and I stop vomiting!!!  PS -  This is my secret to staying skinny after 5 kids! Throw up the whole time 20-50, no lie, times a day and you really do not gain weight. Imagine that!! HAHA!  Really, I was quite ill and hospitalized several times.  So I am glad to see the hormones leave...okay I think I am glad to see them leave.  Also a little scared!!

2.I did not make up "foobs" read it here somewhere!  I love it!!

That and a t-shirt that says" NO, they are not real my old ones tried to kill me!!!", and "I am out of estrogen and I have a gun!"  Gotta love these girls!

3.  Okay- my surgery was bilateral mastectomy with immediate implant reconstruction.  Another words I got the lovely "turtle shell expanders".  I will be having implant exchange on April 17.  Next week yeah!!!!!!!!!!!!!!!!!!! 

 I did not have any real problems with the surgery.  I have a friend who just did diep.  I will let her know your name and see if she can pm you with her opinion about that surgery.

4. Uploading photo! Well, I remember I had a hard time too! 

 I had to use my photo program and cut out most of the photo and make a new one with just the head and some boobie,you see on my avatar.  The file with original picture was too large!  Hope that helps, and you understand my very pathetic explanation!!! LOL!

Now for my questions -how can anyone from the UK be shy about talking about SEX???? 

 I am a big British TV fan! My god woman, you all have Grahmn Norton (spelled that wrong), you have Coupling, Absolutely Fabulous, darn can't think of the other crack me up racy shows that come our way from your way! We never have those type  of shows produced here.  We try to copy you all, but it is not anywhere close!  Some of yours can make you almost pee your pants, or hmm....maybe that is the 5 kid thing again?!!!!!

So let me tell you after delivering 5 kids, pregnancies from hell, yes I was stupid and young!  Having my boobs flatten and felt up since I was 19years old.(The felt up I am referring to is the doctors not my husband) every six months for the last 11 years I have seen my surgeon and he gives the girls a squeeze and we Yap!  

Anyway, I am soooo not worried about talking about sex.  Hell, someone enters the room and I am like so you want to feel my "foobs"!  Okay I am not that bad but I do explain the process to those who ask.  Knowledge is power!  I have explained the whole BC recon story now to my heart dr's x2, my mechanic, (yes, he is a man and I am serious he asked I told), friends of my teenage kids (now that is a really good way to embarrass your teenagers), my friends husbands, (who btw think they are funny asking "got your nipples yet?"  I just tell them they will never know!!!  We are actually all very close ( no I don't mean that close) friends and I love to laugh about my current situation otherwise I would cry!

So anyway ask all you want about sex or this journey I will help you if I can! 

Let laughing help you through and then hit the damn wall, scream, throw pillows what ever you need to do!

It is all doable it is just our "New Normal"

Best to you in the Rocking UK!!  ( Apparently not as rocking as I thought, though!)

Dani

Dani DCIS, two areas rgt breast, grade 3 high comedo with necrosis Dx 10/23/2007, DCIS, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+
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Apr 9, 2008 05:19PM danix5 wrote:

Wow! I wrote a lot!

Sorry!

Dani

Dani DCIS, two areas rgt breast, grade 3 high comedo with necrosis Dx 10/23/2007, DCIS, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+
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Apr 10, 2008 12:22AM kes wrote:

Hi Ladies,

Trumum,

Yes, the nipple thing was a big deal too me, not my DH, I lost the sensation. I am going to have the recon nipple done and the tatooing. He thinks that I look GREAT now with the expanders in and thinks that things will look Fabulous or Foobulous when I am done with the recon. Has not made a difference for us at all.

MeeMee,

I am also in Canada, Ontario to be exact, close to London.

Take Care,

Kerry

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Apr 11, 2008 09:25AM thetrumumshow wrote:

Hi Dani, Yea, you wrote a lot.  I so love your comment it is all doable, it is just our "New Normal".  Last night was a bad night, didn't sleep well, couldn't settle.  Sometimes I think I'm not brave enough to cope with this. Frown  I was told the news on March 11th, only 9 weeks after my Mum died and it all seems too much to cope with at once.  I want to wake up and it all to be different.
Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+
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Apr 11, 2008 04:28PM , edited Apr 11, 2008 04:30PM by kes

Hi Ladies,

Trumum,

So sorry to hear about your mother. This is a very emotional time just with having to have a possible mastectomy. The news is very shocking for sure. I remember driving home one day after work and a lot of stuff was going on for me and then I had to cope with my diagnosis and I just remember the OVERWHELMING feeling of not wanting to go home at all and just wanting to go and be someone else and take over their life. It was just the weirdest feeling that I ever had. Talk with your family and tell them how your feel. This is a very difficult time in your life and having to deal with the grief of your MUM, and now this diagnosis. I remember feeling the same way also, I just wanted to wake up and have it all go away, it was like a bad dream. It is tough. Hang in there.

Take Care,

Kerry

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Apr 11, 2008 08:34PM danix5 wrote:

Trudie,

I wrote you earlier and my damn computer deleted it all, and it was wonderful!  LOL!

My thoughts to you are that it really sucks losing your Mom so close to your dx, I wish she could be here for you!

I lost my best friend of 14 yrs to colon cancer on Jan 11,07, then I am dx with DCIS Oct 11, 07 9 mths to the day!  It all sucks!  I feel the I have had enough too!

But you can do this and I will help and so will the other girls at this site.  I am soooo sorry you are having to deal with this, but I am glad I have made a friend in the UK!  Smile sweetie we are so much better off then some and we are worse off then the Bit*&es in the stores that don't have it and go on with their normal lives!!! 

I am just kidding when I say that!  I would never wish any type of cancer on anyone!  But I do go to the store and think I wish I was like her in LA LA land not facing all this crap!  What we would be doing now, if we did not have Cancer Crap to deal with oh that would be great!  But we do and we can do it!

Again I am so sorry and my other post was so much better, now I have had 3 beers and I am just ranting!! LOL!!!

IT will get better!  I promise!  DCIS is Doable!

Daniella

Dani DCIS, two areas rgt breast, grade 3 high comedo with necrosis Dx 10/23/2007, DCIS, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+
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Apr 11, 2008 08:57PM , edited Jun 14, 2008 08:16AM by darah58

This Post was deleted by darah58.
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Apr 11, 2008 09:48PM stavmom wrote:

Hello, have to add my tale of DCIS woe... I was originally dx'd with a benign cyst that ended up having an unclean margin of high-grade comedo DCIS when they finally took it out.  After 2 mammos (one mag-view) & MRI at a cancer center, they told me it involved 1/3 of my breast, which automatically made it a gonner.  Because of my low back problems, I chose DIEP reconstruction and hoped that would be the end of my BC story.  

Not so though, because it turned out after mastectomy & SNL biopsy that DCIS was in 3/4 of breast and had turned into 2 invasive areas, 1 that traveled to a node.  NONE OF THIS WAS LARGE ENOUGH TO FEEL, nor was any of it visible on their high-tech imaging.  They couldn't even tell it was there during the surgical pathology. 

Unfortunately, the DCIS was too close to my skin so that even after my mastectomy and chemo, I will need 6 wks of radiation.  I won't get my nipple for another year, probably, and nobody knows how my shape will change from radiation. 

I can answer any questions about the DIEP surgery so far, though it's only been 2 months.  Although my girls aren't twins anymore, I do feel very blessed I got at least semi-reconstructed.     

DX: 12/11/07; DCIS 4cm, mast & DIEP recon; then found LCIS & IDC .8 cm in path, Node 1/9 ER+ PR- HER2-; TC & rads, Oncotype 20, total hyster 2009. Back on tamox after trying the 3 A/I's. May 2012 - retroactively dx Stage IV bone mets since '06.
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Apr 11, 2008 09:52PM awb wrote:

danix---I had a total hysterectomy 3 years ago (everything gone--uterus. ovaries, tubes and cervix) AND i still take tamoxifen.  While I do have SEs from the immediate surgical menopause like hot flashes, achiness and some insomnia, my sex life has not been affected. so I guess it is very individual.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista
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Apr 11, 2008 10:32PM Hannahbanana wrote:

Meemee I too had a mastectomy on March 6th but on my right breast.  Between the two of us we have a setWink  I was dx on Feb 6th surgery 4 weeks later.  It happened so fast that I never really thought about doing both and now wonder too if I should have done both.  My DCIS was at a high stage that the oncologist said it would have been invasive within a year. 

I go to the ps next week to see my options to start reconstruction and some kind of help for my 44 year old remaining breast. 

Dani you sound like me as far as attitude.  Dh and I have done nothing but laugh about this whole process.  If we didn't I would be crying all the time so when we can we laugh.  DH gets a kick out of me when at the end of the day when I finally hit the couch I pull out my insert and he goes POP goes the boobie!  I also talk to anyone who wants to listen or ask questions about the process what they did and will do.  I think knowledge is power and have found women feeling bad because they have been putting off their mammograms. But it is funny how guys have questions but sometimes feel funny talking about your breast.  Haven't had the nipple questions yet but haven't started the recon yet.

Dx 2/7/2008, Paget's, Stage 0, Grade 3, 0/7 nodes, ER-/PR-
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Apr 12, 2008 11:27AM kes wrote:

Hi Ladies,

Dani,

You make me laugh, I just love your attitude!!!!! I cannot type worth crap after a few glasses of wine,also.

Staymom,

On my final path report there were areas of DCIS on the right side that could not be felt and also could not be seen on the mammogram. I had mammogram, then mammogram with magnification views, then an ultrasound, then a needle biopsy (which came back clear, but an excisional biopsy was recommended) and then an excisional biopsy, which picked up the multifocal DCIS. This happened in summer/fall of 2007. DCIS can be very tricky. So my advice would be that if the Doctors are chasing you around (and I don't mean around his office) to do more testing, then it is a good idea to follow up on this.

Take Care,

Kerry

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Apr 14, 2008 06:47AM Tina337 wrote:

Hi, everyone. I just wanted to check back in on this conversation. I got home on Fri. from my bilateral mast/expanders surgery, and I'm feeling pretty good. I'll feel a lot more human once these drains come out, and that will hopefully be this week.

I chose the bilateral mast even though there was only one confirmed area of DCIS in my right breast. I was paranoid after 6 biopsies (areas in both breasts) that something had gone undetected. With a needle biopsy, only samples of the areas were taken -- my concern was about those other cells that weren't tested but were part of what lit up on the MRI. So, I went the conservative route, even though the surgeons considered the lumpectomy to be adequate treatment, as long as I did radiation and tamox.

Thurs. night my surgeon gave me the pathology results. He said I had made a wise decision. Turns out that in addition to the known area of DCIS in my right breast, there was a second area of DCIS and a small area of microinvasion. Then, to top it off, they found two areas of DCIS in my left breast as well. I am so glad I trusted my gut instinct. I did not want to be revisiting the biopsies, surgery thing again, and it appears I certainly would have.

Now I have the turtle shells, and that's something that's going to take a little getting used to! I think what freaks me out the most at this point are the drains and the numbness. I've been told to expect some more swelling and bruising, but that it would then subside. I hope the numbness thing goes away at some point.

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Apr 14, 2008 11:24PM kes wrote:

Hi Ladies,

Tina,  You sure made the right decision!!!What a relief you must now feel. I had my bilat mast on Jan25/08 with tissue expanders and I had absolutly no bruising what so ever. The numbness does get better over time. DCIS is sooo tricky. It's like gambling, do I or don't I? What a tough decision.

Kerry

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