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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Bilateral Mastectomy for DCIS?

Topic: Bilateral Mastectomy for DCIS?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: May 28, 2009 05:53PM

meganandrileysmom wrote:

 I was diagnosed with DCIS May 1.  It is very small (although it is high grade with focal necrosis).  It was only caught when there was concern about another area in the same breast, which led to a biopsy (benign) and an MRI 6 mos later.

I am having such conflicting emotions about everything.  Initially, before meeting with the surgeon, I was determined to have a single mastectomy.  After meeting with the surgeon, and hearing how much easier a lumpectomy is, I wanted to have the lumpectomy.  Lately, I have strongly been considering a bilateral mastectomy.  I am only 36 (the silver lining with this disease is that I am considered "young") and have 2 young children.  I do not want this disease to come back.  I have a strong family history, but do not have the BRCA1 or 2 mutation.

 With one exception, whenever I mention the possibility of the bilateral mastectomy to my husband, mother or friends, they almost always refer to it as the "radical", "dramatic" or "nuclear" option.  My husband keeps insisting that the "results for mastectomy and lumpectomy are the same."  I keep telling him that while the survival rates are the same, the recurrence rates (and rate of developing a second cancer)  are not the same. 

Currently, I am scheduled for a lumpectomy with a wire-guided biopsy of another area on June 18.  My plan is to get the pathology back on both the DCIS and other area and find out whether the margins are clean before deciding whether to have the "radical" surgery, or pursue radiation/tamoxifen.  I know that this could entail an additional surgery, but I think it might be the best for me because I really do want to have all the information before making a final decision.

Has anyone encountered this kind of resistance or response to the mention of a bilateral mastectomy?  Any effective way of dealing with it? Has anyone out there decided to take the step by step approach that I am taking?

(By the way, I met with two surgeons, both of whom gave me the range of options and both of whom said that bilateral mastectomy was a reasonable and viable choice.) 

 Thanks so much,

Shannon

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May 28, 2009 06:19PM Busybee wrote:

Yes,

I had the same response on the bilateral mastectomy.  I had DCIS microinvasive on my right breast, I like you did research and I wanted a bilateral mastectomy, but I was talked into a lumpectomy and rads, after the lumpectomy my surgeon didn't have clear margins and he found the DCIS was extentive throughtout my breast along with LCIS, so then I needed a mastectomy.  After that, I saw my oncologist and she suggested a bilateral because of my age and I have ALH in left breast, since I was small breasted and needed an implant in that breast anyway to match the reconstruction done on my right side &  I wasn't sure how I would respond to the tamoxifen.

The main point, is that you must follow your gut instincts.  My husband and I wished we would have!

God bless you, Busybee

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May 28, 2009 06:35PM meganandrileysmom wrote:

 Thank you, Busybee.

I am so sorry you have gone through all of this.  I am trying to come to grips with the idea that there is no perfect (or even good) answer.  Either we have to live with worry about the remaining breast, etc., or we have to face this massive surgery with no guarantee that we will ever look or feel like ourselves again.

You are right though, we have to listen to our gut instincts. 

Now, if I could just figure out what mine is.

Good luck with your next surgery. 

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May 28, 2009 06:40PM poolgirl wrote:

I had a bilateral Mastectomy, My cancer was .6 cm and slow growing. I did it because I was told that I would not have to have chemo or radiation if I did it. I had the GAP proceedure at the same time for reconstruction. I am very happy with the results. My brother in law did tell me to have the lumpectomy. It caused me a great deal of trouble when making the decision. I finally made up my mind that I had to look in the mirror every day and no one else. I did what I felt in my heart.I made an agressive decision because I felt I needed to be sure it would not come back in the other breast. It is very hard to decide. Follow your heart or gut. You will be the one who goes through everything if you choose wrong.

God Bless you in all of this!!

Dx 12/26/2008, DCIS, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 28, 2009 07:38PM - edited May 28, 2009 07:43PM by 3girls4me

Hi Shannon.....

 Boy do I know what you're going through!   Its not an easy path.   I had a similar diagnosis as yours (multi focal DCIS---undetected by mammogram, found "accidentally" by benign lump)  I had two more lumpectomies, without clear margins.  Ultimately,  I decided on mastectomy and choosing bilateral was a no-brainer for me.   Although yes, lots of people thought it was too "drastic".  But upon final pathology of my "good" breast...I had atypical cells that were approaching DCIS stage!   That sealed my decision for me.

You are right that mastectomy does bring a lesser chance of recurrence.   It is YOUR decision about what kind of future you want to have worrying about the other breast.   For me, even though I sometimes feel that a mastectomy may have been unnecessary, I will never know for sure.  And it gives me greater peace of mind knowing that I did the MOST I could to decrease my chances.  I was also 36 at diagnosis with 3 young daughters (and I have a daughter named Megan too!).  I had no family history...this hit completely out of the blue.

Although I know it is helpful to seek counsel from others who have been there, it would be my best advice for you to search within YOU and what decision you are most comfortable with.  I know its hard....everyone wants to give their 2 cents.   But its your body!

I will add that I had an AWESOME plastic surgeon and am thrilled with my results!   It some ways, they look better than before, and in some ways they are not "mine" either.  But all in all, reconstruction is WAY worth it!

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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May 28, 2009 09:34PM Deirdre1 wrote:

Yup - I also got a great deal of resistance from my daughter!  I lover her very much and she is quite a bit younger than me, but she really didn't want me to go through with it at all.. She was, in retrospect, the voice of reason!  My DCIS wasn't large though it was considered grade 3 (at least by the first pathologist - grade one by Vanderbilt) but I have a bit of a different situation in that it was my father that had bc.  Since the population of men being dx'ed with bc is something like 1% ((although there is a better understanding today that many many more men have it they (medical community) are just not looking for it in men) my doc's were pretty confused about what this meant to me risk wise and they recommended a bi-lateral.. given that I was BRCA neg. and ER/PR positive I really wish now that I had had the lumpectomy.. I was much older than you Shannon when it was found so I do understand that your risks are higher with younger age, but still please look long and hard before doing the bi-lateral.  I waffled back and forth myself and over 2 years later, I wish I had choosen lumpectomy with "watchful waiting".  It is an enoumous hit on our bodies as well as a huge psycholigcal hit.  Some women can tolerate it just fine, but many women I have spoken to after the fact (6 months+) are very sorry they went the way of bi-lateral.. That is why I always suggest a therapist for anyone in this position.  There are so many people with so much different pieces of advice it's very difficult to hear your own voice..  People who love you and want you around so of course most of us will hear them rather than our own voices.. If you decide after doing all the research to go with bi-lateral well God bless, but please do the research and really hear your own voice so that afterwards you feel well in both mind and body.. Best!

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May 28, 2009 09:48PM Meghan wrote:

Hi Shannon,

I'm 30 years old and I was diagnosed with DCIS (grade 3) on April 9th of this year and had a bilateral mastectomy on April 28th. My right breast turned out to be clear, but I'm 100+% happy with the choice I made. I don't need any further treatment, and now my focus is on reconstruction. After all the stories I've heard of women who get more than one lumpectomy and then end up having a mastectomy anyway, there was no other option for me. I HATE needles, and they're kind of a must when it comes to surgery, so the less of those I have to go through, the happier I am. :) And I had an amazing surgeon who did a fantastic job. Anyways, I wish you the best of luck in making your decision. You'll know when it's the right one for you. :)

Meghan

Meghan Dx 10/12/2011, <1cm, Stage I, 0/0 nodes, ER-/PR-, HER2+
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May 29, 2009 09:32PM mocame wrote:

I was diagnosed at age 38 with multi-focal DCIS and LCIS.  My mom was diagnosed 10 years earlier and had a unilateral mastectomy.  I decided on the bilateral but it wasn't an easy decision. 

I wanted the bilateral, many of my friends and my mom said they would do the same thing if they were in my shoes BUT my husband didn't want me to.  His thinking was that if there's nothing wrong with it, why mess with it.  I understood that but I had to decide this for myself even though it would effect my husband too.  When I made my decision, he wasn't real happy about it but agreed that it was really my decision to make.

Now, one year after I had the surgery, I don't regret it and my husband is okay with it now.  This was the best decision for ME and my husband has accepted that and is actually handling the whole reconstruction results better than me!  Smile  I'm glad I went with the bilateral and I'm glad that I'm going through the reconstruction.  I have no regrets.

Like other have mentioned, this is a decision only YOU can make. 

Dx 2/12/2008, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+/PR-
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May 31, 2009 09:31AM sbmolee wrote:

I started out on the lumpectomy path - that did not have clear margins.  A mastectomy was suggested and the discussion of being lopsided since I was so small breasted came up.  Fortunately an MRI before the mastectomy found a lump in the other breast that the mamo missed!  It was at this time, even before the results of the newly found lump in the other breast, that I realized I did not want to have to go through this again in a few years.  It is such an emotional diagnosis to hear cancer.  I decided on a bilateral mastectomy.  The path report from all the tissue examined after the mastectomy shows the DCIS was spread in a larger than they thought.  I am so glad I too the plunge and got the bilateral mastectomy as I have such a small change of recurrance.  I am also so please that with my choice, I was able to avoid radiation, tamoxifin.  While not pain free, the reconstruction process was not difficult. 

Knowing what I know now and have experienced - I would make the same choice.  Very happy with the results and gldd I did not have to endure radiation and drugs.  Best wishes on your decision.

Live life to the fullest - it is not a spectator sport. Dx 3/27/2008, DCIS, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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May 31, 2009 10:02AM iwannabefree wrote:

 Hi. I had a uni mastectomy about 6 months ago. I did it step by step. First a lumpectomy with dirty margins, then they went back in for more while I was still in the OR. I still ended up with 4 dirty margins and I had about 1/3 of my breast tissue gone. That seemed like an awful lot of DCIS to me, even though it was all non-invasive. So I did a unilateral mastectomy. All because of a tiny spot of calcifications on my mamogram. I felt okay with my decision. I hated how no one tells you the best route to go. It leaves the choice, and the guilt/regret from the choice soley on our shoulders in the aftermath.

The biggest regret came 2 months later.I went to see this woman oncologist. She is world reknown as the Dr. who guided that other Dr. to do her own lumpectomy when she was stranded in Antarctica, you might have read that story. Anyways, she says to me, " the thing is, you only had a 30 percent chance of that DCIS ever becoming invasive. Many, many women have DCIS and never know it. It shows up in autopsies all the time, but never as the cause of death." Ifelt like she was trying to say to me, without coming out and saying it, " You really didn't need a mastectomy."  And that makes me sad. Don't underestimate the feeling of loss you will have to deal with later.

Dx 8/22/2008, DCIS, 6cm+, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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May 31, 2009 11:00AM Beesie wrote:

iwannabefree,  it's a shame that the oncologist said that to you.  And while I believe that she is technically correct, I don't think that she's right about your particular situation.  I'm done a ton of reading up on the issue of DCIS conversion to invasiveness.  From all that I've found, I would agree that on average, about 30% of DCIS cases may eventually become invasive.  But that's an average.  Someone who has a small amount (<1cm) of lower grade DCIS has a risk that is likely much lower than 30%.  But for someone who has 6cm+ of grade 3 DCIS that is ER-/PR-, the risk that this DCIS will eventually turn invasive is probably 70% or more.  This doesn't mean that a lumpectomy wouldn't be sufficient, if the margins are very large and all the DCIS is removed.  But with 6cm of DCIS, that's hard to ever know.  And here's something else to keep in mind:  The oncologist is right that DCIS shows up in autopsies all the time, but what no one knows is how long that DCIS was present.  When did it first develop?  DCIS tends to be slow growing so if the DCIS found in an autopsy was only there for 1 year or 3 years or even 8 years, it might not have yet had the time to convert to invasiveness.  But that doesn't mean that it never would have.  So if you are 85 and you are diagnosed with DCIS, it might be very safe to not remove it.  But if you expect to be around for decades more and you are diagnosed with high grade DCIS, the autopsy studies are a useless indicator.

By the way, I had 6cm+ of grade 3 DCIS - and mine had already started to become invasive -  I have a microinvasion in with my DCIS.  What's really interesting (and very concerning to me) is that because a microinvasion changes the diagnosis to IDC Stage I, all of us who have DCIS with microinvasions are not included in the DCIS stats about the % of DCIS that eventually becomes invasive.  So that immediately increases the % of DCIS that becomes invasive by about 13%.

So, please don't feel that you did the wrong thing in having a mastectomy instead of a lumpectomy.  You tried the lumpectomy first and had dirty margins; with that amount of DCIS, most surgeons would then recommend a mastectomy rather than a re-excision.  My situation was exactly the same and that's how I ended up with a mastectomy too.  For some of us, a lumpectomy isn't an option (or a reasonable option).

Having said all that, to Shannon's question, for those who do have a viable choice between lumpectomy and mastectomy, I definitely do want to support the point that it's important to not underestimate the feeling of loss from a mastectomy.  Certainly some women don't experience this at all.  Other women experience it immediately after surgery.  But from what I've seen here, I think most don't experience it until some months - or even years - after surgery is done and treatment is completed.  Once you are no longer living with breast cancer (and the fear associated with that) every day, you realize that breast cancer has made a permanent change to your body, and for most of us, this is not a change that we would ever have wanted or chosen for ourselves. This isn't to say that a mastectomy or bilateral isn't the right decision for some women, but in making the decision, you really need to consider the long term implications, in terms of how it will permanently change your physique and your life.  So I think your approach, taking this in steps, makes perfect sense.  See what happens with the lumpectomy, and see how you feel about it then.  Good luck to you! 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 31, 2009 12:24PM mom2two wrote:

I had dcis in one tiny area in my left breast. I agonized over the mastectomy vs lumpectomy/radiation decision.  Here are some of my conclusions.

1) While survival rates are said to be the same, the recurrence rates are significantly lower with mastectomy.

2) There are no 100% detection methods to date to know everything in those breasts (ie mri's, mammograms, ultrasounds all have their limits). Only the final pathology report can show what is there. 

3) Every recurrence of dcis can potentially be invasive. Then the whole process starts from square one.

4) Mastectomy has its side effects but then so does lumpectomy/radiation. Anyone thinking its the easier route needs to go look at the lump/radiation side effect posts as well as the tamoxiphen side effect posts.  

5) In the end there are no Wonderful, painless, feel good treatments for breast cancer. 

6) Thats why even the doctors leave it up to each woman. They don't know which is best for you only you can know or partly know that.

7) For me if I had gone with the lumpectomy my doctors said I would have to follow it up with the radiation and for me that was the deal breaker.  I chose the bilateral mastectomy. It gave me the best chance for not having a recurrence and it meant no radiation.

So am I happy that I lost my breasts?....no, but I have accepted it and for me knowing that I didn't have to do the radiation or take the tamoxiphen for 5 years more than made up for any of the inconviences of being boobless.  

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May 31, 2009 05:49PM kathydcis wrote:

Shannon,

I cannot offer anything that others have not already said.  I can only add my experience of being dx with DCIS Nov 06, and having a bilateral mastectomy and being completely happy with my decision.   My daughters and husband are all extremely happy . . and relieved . . .that I made the decision as my form of treatment.  Like Lydia I had the GAP procedure at the same time for reconstruction.   The main reason for my decision of a bilateral?   To be worry free.  I know that I have done everything possible to keep BC from rearing it's ugly head again.  Every situation, every person is different.  As others have said, it is your body, your decision.   And we all are offering you our support and best wishes.  

Dx 11/27/2006, DCIS, Stage 0
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May 31, 2009 10:05PM iwannabefree wrote:

Thank you Beesie for helping me with your words of wisdom.  I am thinking if I have to regret something in the choice I made, I would rather regret having too much removed than not having enough removed.

Dx 8/22/2008, DCIS, 6cm+, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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May 31, 2009 10:39PM Faythnme wrote:

Hello, I posted a topic "Thought it was over" so it rather explains where I am at this point in my diagnosis and treatment, so I won't elaborate.  Even though I have a diagnosis for only the left breast I believe it may also be in the right breast but not seen by MRI.  So come Thursday the 4th I will know more and what direction I will go.  Most likely a GAP bilateral mastectomy.  Less to worry about I suppose.  Then it will only be determine what size.  Right now the left is probably a D+ and the right is DDD, so to do reconstructive on one and go to a DDD is not even an option.  Megan I know you will make the right decision for you.

CC Dx 3/24/2009, DCIS, 6cm+, Stage 0, Grade 3, 0/4 nodes, ER-
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Jun 1, 2009 04:30PM meganandrileysmom wrote:

I can't thank you all enough for sharing your stories and words of wisdom!  I guess no one really knows all of the emotions and the turmoil the "diagnosis" causes, until she has been diagnosed.  It is really very helpful to hear from all of you brave women out there!

Thanks again and best wishes to all of you!

Shannon

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Jun 2, 2009 03:37AM duneswoman wrote:

When I was diagnosed for DCIS, my surgeon, oncologist and I talked about what my options were based on a series of tests, including a breast MRI. Ultimately we decided to base the lumpectomy/mastectomy decision on what the margins/nodes looked like during surgery (pathology was done while I was in OR). If too much tissue was compromised, they would wake me up and plan mastectomy/reconstruction at the same time in a subsequent surgery. I'm glad that wasn't necessary. I only needed the lumpectomy. But that was my decision, and I really understand the peace of mind a mastectomy could provide.  

Duneswoman Dx 3/23/2009, DCIS, 3cm, Stage 0, Grade 3, 0/2 nodes, ER+

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