We are 144,790 members in 73 forums discussing 114,635 topics.

Help with Abbreviations

All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Single or Double Mastectomy?

Topic: Single or Double Mastectomy?

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

Posted on: Nov 18, 2007 05:33PM, edited Nov 18, 2007 05:33PM by Jeannette

Jeannette wrote:

I was diagnosed with DCIS in July 2007.  Had lumpectomy on Aug. 1, 2007.  Met with radiologist in September 2007 to discuss treatment.  Had 8 radiation treatments and was not feeling well.  Discovered I was pregnant.  Went to my Ob/Gyn and found out I was 7 weeks 2 days pregnant with twin.  They were healthy and was going to all the Dr's, and was assured they would be fine.  I lost then at 10 weeks :(. 

Instead of starting back with radiation, am thinking about mastectomy, only because my right breast incision area collapsed and needs reconstruction.  I am told that the way it looks, that it's better to start from scratch.

My thought is to have the gene test done first to see if I carry the gene and if I do to have a double mastectomy.  Or, should I go ahead either way and have the double (that way both breasts will look alike).  Any thoughts??

Log in to post a reply

Posts 1 - 15 (15 total)

Log in to post a reply

Nov 18, 2007 05:54PM sam408 wrote:

Jeanette,

Sorry to hear about the loss of your babies. Hope you are doing OK.

I too am considering "fixing" my lumpectomy breast. I had surgery in February 2007 and finished rads in May. My breast is very contracted and looks pretty bad. My surgeon also suggests starting from "scratch." I've got an appt with a plastic surgeon in January to explore my options. I definitely feel that if I proceed with surgery, I will go for a bilateral w/reconstruction to get a matched set. I am also thinking it would be beneficial to save my left arm from node removal so that it can be used for shots, IVs and blood pressure readings.

I'm sure others will chime in soon and I'll be watching this post to see what they have to say.

Sheila

Sheila . . .Never regret something that made you smile.

Dx 2/16/2007, DCIS, <1cm, Stage 0, Grade 3, 0/4 nodes, ER+/PR+, HER2+
Log in to post a reply

Nov 19, 2007 03:08AM jade wrote:

Hi

 I am sorry to hear about your lose and what you have to go through.   I am a month out from bilat mast.  I also searched my brain and the web:<} before I made the choice to have a bilat mast.  I wrote a list of pros and cons.

pros

1.  99.99% cancer free....

2.  no more biops

3.  didnt want rads

4.  didnt want tax for 5 years

5.  my dr. said that b/c I am 36 that my chances for it to come back was greater b/c it was estrogyn+  and everytime I got microcalcification back I would need a biop.  EVEN though 80% of that is not cancerous.

6.  All the ps I went to said that Its harder to get a good look after rads and lump.

7.  sanity

cons

I would still have my breast, but I wouldnt know what they would look like after my lump.

I could not get recon with my mast, b/c of blood loss and vitals.  I am shceduled for recon Dec.10th.  The surg saved ALOT of skin...I cant wait to have this part behind me too.

I hope I helped alittle.

Jodi

Dx 9/4/2007, DCIS, 2cm, Stage 0, Grade 2, 0/1 nodes, ER+/PR+, HER2+
Log in to post a reply

Nov 19, 2007 07:56AM, edited Nov 19, 2007 07:58AM by Beesie

The single mastectomy vs. bilateral mastectomy decision is a difficult one for many women.  I decided to have a single mastectomy, but then if I'd had the choice, I would have had a lumpectomy instead of a mastectomy.  My BC was too widespread, so a mastectomy was my only option.  But despite having had 4 previous biopsies on my "good" breast (2 were fibroadenomas, 1 was a fatty deposit, 1 was benign calcifications), having a clear MRI before my surgery made it easy for me to decide to go with a single mastectomy.  I know that I have about a 20% chance of getting BC again, but that means I have an 80% chance of not getting BC.  And even if I do, I'd like to keep my remaining breast for as long as I can.  Still, having been on this board for almost 2 years, I've come to the conclusion that I'm probably in the minority.  Many women get very stressed at the thought of having a recurrence or getting breast cancer again.  If the stress overtakes your life for more than just the few days when you're having your 6 month or annual checks, then you need to do something about it - there's no point living in constant fear.  So if you know that you can't manage or control the fear, then perhaps having a bilateral does make sense.  And of course, for other women, those who have the BRCA gene or other high risk conditions, or those who can't or don't want to have radiation and/or hormone therapy, their reason to have a bilateral is medical. 

I do want to comment on the symmetry issue.  While there may be many good reasons to have a bilateral, personally I don't think that symmetry should be the driving factor.  It is one consideration, yes, but what you need to know before making this decision is that even with a bilateral, symmetry is far from guaranteed.  If you read the Reconstruction forum, you'll see that it's not unusual to have problems or complications with reconstruction.  In fact, it's probably more unusual for someone to get though reconstruction with perfect results and no problems along the way.  Many women require reworks; breasts don't settle evenly or in the desired location, etc.....  Most women do end up happy with their reconstruction, but it takes time and often expectations have to be adjusted along the way.  Given all the problems with reconstruction, it's not uncommon for someone who has a bilateral to get different results on one side vs. the other.  From the pictures I've seen, I don't find that there's much of a difference in symmetry between women who've had a single mastectomy and those who've had bilaterals.  In both cases, some women have great symmetry and some women don't have very good symmetry.  So please keep this in mind as you make your decision.

Good Luck!

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

Log in to post a reply

Nov 19, 2007 11:57AM jade wrote:

Hi Beesie

You are right about symmetry, no one knows how recon will come out.  I do know that the % of difficulty, and people not happy with the out come, are more so when one does lumpectomys w/rads or has a lateral bilat (at least that is what all the ps and my surg told me).  It also depends on how much skin is saved...there are alot of factors.

I had my bilat b/c I didnt want to have ANY MORE biops:<}  For me, it was the BEST choice.  When I got my path report back, they found more calsifications in my "healthy breast"....a stage below cancer.

It is a personal decision...one I made with my eyes WIDE OPEN!!!!

That is just my story:<}

J

Dx 9/4/2007, DCIS, 2cm, Stage 0, Grade 2, 0/1 nodes, ER+/PR+, HER2+
Log in to post a reply

Nov 19, 2007 03:10PM, edited Nov 19, 2007 03:11PM by Beesie

Jade,

You're right - no one knows how reconstruction will turn out.  That was my only point.... there is no way to know if you will get symmetry or not, whether you have a single mastectomy or a bilateral.  You can have the best plastic surgeon in the world, but if your body decides not to cooperate by doing everything the way that you and your doctor wants it to, there is not much that you can do about it.  A lot of women go back for revisions and do end up with good symmetry, but it's not a simple or easy process, whether you have a single or a bilateral.

About the calcifications.... did your calcifications test to be ADH?  If not, most calcifications are harmless and are not one stage below breast cancer.  Calcifications are very common - about 60% of women get them - and most of the time, they are completely benign.   And if someone has calcifications that have been tested to be benign, they will stay benign.  Benign calcifications do not turn into cancer. 

Where calcifications are a problem are in those cases, approx. 10% to 20% (at most) of the time, where the calcifications do represent a precancerous or cancerous condition.   For example, if someone has calcifications that are found to be ADH (atypical ductal hyperplasia), then yes, those calcifications do represent a stage before DCIS.  About 20% of ADH cases evolve to become breast cancer (but that means that 80% don't).  Or calcifications may be found to be DCIS or even IDC.  Those are obviously calcifications which need to be removed.  While precancerous or cancerous calcifications are very common among those of us here on the DCIS discussion forum, we have to remember that among the population at large, harmful calcifications are the exception.

In my case, two years ago I was found to microcalcifications in both breasts.  In my right breast, the biopsy showed ADH, DCIS and a microinvasion of IDC.  In my left breast, the biopsy came back totally benign.  I had a single mastectomy of my right breast, since the DCIS was too widespread to have a lumpectomy.  My left breast is considered perfectly normal and healthy.  I've had 3 or 4 mammograms since that time; the original benign calcifications obviously are still there but I've had no problems with this breast.

Jade, I completely understand that a bilateral mastectomy was the right decision for you, as it is for many women.  But for anyone else reading, I wanted to ensure that no one worry about benign calcifications being a possible precursor to breast cancer.    

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

Log in to post a reply

Nov 19, 2007 04:06PM PhyllisCC wrote:

Beesie,

I seem to log on at the right time.  I am having a masectomy of the rt breast next week and a biopsy of the left breast at the same time(due to continuing nipple discharge)  My first response was.... just take them both and get it over with.  But reading your post, I can understand why it's just a biopsy, not a double mas.... Hopefully I will have just calcifications in the the left.  Thanks for suggesting I check out the DCIS discussions. 

Log in to post a reply

Nov 19, 2007 06:08PM, edited Nov 19, 2007 06:15PM by Jeannette

This is a lot to think about.

Log in to post a reply

Nov 19, 2007 06:08PM, edited Nov 19, 2007 06:14PM by Jeannette

Hello it's me Jeannette!!

I am leaning towards a double mastectomy, just to have peace of mine for a while.  I am 35 yrs old and have 2 small children (6 & 2).  When I got pregnant with the twins, it was a miracle, since my 2 girls were fertility medication.  I was extremely sad when I lost the twins.  I suppose I just want to move along with my life now and doing the double and not having to worry about an occurance in the left breast (DCIS was in right, stage 0).

I am going December 20, talk with a genetics Doctor.  I am unsure at this point if I will  have the genetic screening or not.  That  is a decision I will make after talking with him.  But I do know if I have it done, I will still be leaning towards a double.

Jeannette

Log in to post a reply

Nov 19, 2007 07:10PM sam408 wrote:

This is a lot to think about and it can drive you crazy all by itself. Good luck with your decision Jeannette. Now that the scare of my biopsy last week has diminished, I'm starting to think maybe I should just leave well enough alone. I'm not happy with the way it looks, but am also a little scared of more surgery.

I'll keep my appt with the PS in January and keep doing my research so I go into it as prepared as I can be. My next mammo is 2 weeks before I see the PS, so the results of that will definitely be a factor in my decision making.

Sheila

Sheila . . .Never regret something that made you smile.

Dx 2/16/2007, DCIS, <1cm, Stage 0, Grade 3, 0/4 nodes, ER+/PR+, HER2+
Log in to post a reply

Nov 21, 2007 07:13AM lvtwoqlt wrote:

I will chime in here also. I had bilateral mast June 1 because of 2 dx of ADH once in each breast over an 18 month period then 8 months after second dx of ADH, dx of DCIS. I wanted off the rollercoaster of mammo, biopsies, lumpectomies. Prior to my bilat mast, I had non-matching boobs (a-cup and c-cup) because of the biopsies/lumpectomies and I also wanted a somewhat matching set of boobs.

I had my exchange surgery from expanders to perm saline implants Nov 2 and they are not identical but real close to the same size, because of different amount of tissue removed from each side. I am happy with my decision but it is a very personal one. I also made the list as Jade did with pro and con and came up with many of the same items on her list.

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

Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodesSurgery 02/12/2005 Lumpectomy (Left)Surgery 09/10/2006 Lumpectomy (Right)Hormonal Therapy 10/12/2006 TamoxifenSurgery 06/01/2007 Mastectomy (Both)
Log in to post a reply

Nov 24, 2007 08:41AM, edited Nov 24, 2007 08:43AM by ijl

I haven't been on this board for a while. And I logged on to see this discussion on single vs bilateral mastectomy that is so dear to my heart:) I had my unilateral 8/31 with DIEP reconstruction. It all went very well. In fact I just posponded my stage II reconstruction from January to the end of February as we booked a Carribean vacation. So a few days ago I decided to see how I would look in a swimming suit before any final touches of stage II. I was really nervous putting on my swimiing suit but lo and behold , I look really good. I mean my breasts look good :) and even and of course not having tummy fat does not hurt either :) 

But as Beesie said there is always a donwside. In my case I had a follow-up MRI on my other breast. 6 months ago MRI showed 2 mm of something while mammo was clean. The radioloogist was not too concerned but wanted me to follow up in 6 months to see what it was. So I will spend next week waiting for the results. It does not take my life over but it does make heart beat rapidly when my phone rings.

But then our bodies have so many parts that can "go wrong".  

Anyhow it is a personal decision and in some cases (like mine)  our gut usually gives us an answer immediately and then we spend some time trying to justify it rationally :)

  

Log in to post a reply

Nov 24, 2007 09:22AM, edited Nov 24, 2007 09:56AM by nwsailor

Hi everyone,

I read all your posts with lots of interest, as I too have sadly just joined "the club" dx with DCIS, 1 cm, stage 0, grade 3 ER+/PR+ o nodes by MRI, have had lumpectomy with clear margins 11/7/07 but not SNB.  This was followed previously with close survelience for 2 yrs following FNB.

So, I was presented with ALL the same info as you all; DCIS is not invasive, >3% of women actually die from DCIS.  Treatment options are: lumpectomy + radiation + tamoxifen for 5 yrs, or single/double mastectomy.  I too am leaning toward bilat mastectomy. 

I am 52, a nurse practitioner, so am a bit more savy in terms of medical options than some, and when I asked my oncologist if my chances of recurrance with stage 0 grade 3 were higher than the oft quoted 20%, he said yes, because my DCIS had microcalcs with areas of necrosis.  It was not referred to in path report as "comedo" but necrosis nontheless. However, no numbers for how much higher.  

He went on to say he feels like women in our shoes have the hardest/most stressful time because we have so many choices, and I agree.

In my particular case, my husband and I are planning to literally sail around the world next year, and I too want this behind me and need closure. I am extremely small breasted the idea of losing my breasts while daunting does not affect me as I think it might some others.  I am focusing on the possibility of knowing I am cancer free (99%) and having some cleavage for the first time in my life!

Jade, I really liked your idea of pros and cons, it's what I did too.  Jeanette, I think you have to rely on the good advice you get from your providers, (I would be careful of relying too much on advice from us, we are not oncology specialists and every case is different), and the support you get from all of us.  We are all here for you, in fact are in the same boat:)  I too am so sorry for your loss and will help in whatever way I possibly can.  I do know lots of docs/NPs who do work in onc and have access to lots of medical opinions.

Wish me luck, I have seen my med onc, cancelled my rad onc appt and will see the first of 2 PS next week to discuss reconstruction!

The final analysis is we all have to do what is right for us, and be here to support each other with the outcomes.  I do agree with Beesie that knowledge is power, and informed decisions are always the best.

Take care, NW Sailor

Dx 11/7/2007, DCIS, 1cm, Stage 0, Grade 3, ER+/PR+
Log in to post a reply

Nov 24, 2007 11:44AM, edited Nov 24, 2007 11:47AM by Beesie

inna,

Great to hear from you!  It sounds like you are doing well.  And looking good in the bathing suit...Cool!!  Cool

NW Sailor,

What your doctor told you about recurrence risk after a lumpectomy for DCIS is consistent with everything I've read and head.  I've never actually heard the 20% figure.  What I've heard is that DCIS recurrence rates vary a lot, depending on 1) the amount of the DCIS; 2) the grade of the DCIS; 3) the margins achieved; and 4) your age.   Someone who has a small amount of low grade (Grade 1) DCIS with good margins has a recurrence risk of only about 5%.  On the other hand, someone who has a large amount of high grade (Grade 3) DCIS has a recurrence risk more in the range of 35%, even with good margins.  This risk willl be even higher if they are younger or if wide margins weren't achieved.  This is why radiation is so important for anyone who has high grade DCIS.  Radiation can cut recurrence risk by 50% - 66%.  Then, if Tamoxifen is taken, the risk can be cut by another 40%.  So the 35% risk for someone who has a large amount of high grade DCIS can be cut to 7% - 10% with radiation and Tamoxifen.   Here's a good explanation of DCIS risk profiles from the BC.org site:  http://www.breastcancer.org/symptoms/dcis/tumor_groups.jsp

In your case, you had a small amount of high grade DCIS.  You mention that you had clean margins, but I don't know how wide your margins were.  While only your oncologist can give you your recurrence risk, given the small size of your DCIS, I doubt that your recurrence risk would be as high as 35%; it's probably more in the range of 25% - 30%.  So with radiation and Tamoxifen, you could bring your risk down to 5% - 9%.  A mastectomy, on the other hand, would bring your risk down to 1% - 2%.

The other consideration is a new primary, which is the possiblity of getting breast cancer again, in either breast. My oncologist told me that because I've already had BC, my risk of getting BC again is about double the norm.  I was diagnosed when I was 49; at that time, my oncologist put my risk at 20% - 22%.  That was 2 years ago; by now, my risk has dropped slightly.  You are close to my age so your risk is probably about the same (unless you have other risk factors).  Should you choose to take Tamoxifen, you can lower this risk to about 15%.   Here again, a mastectomy could take this risk down to 1% - 2%.

As I said in my earlier post, I'm one of those people who can live quite easily with a 20% risk.  I tend to think more of the 80% chance that I won't get BC again.  And frankly, I come from a family where there's lots of cancer, of all different types.  So I don't believe for a minute that having a bilateral mastectomy will save me from getting cancer again.  Still, I understand completely that a 20% risk is difficult for many women to live with.  I understand the urge to "get it all over with".   And in the end, it really doesn't matter what anyone else decided or what anyone else thinks.  We each have to make the decision that we can live with, and only you know what that decision is for you. 

Good luck! 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

Log in to post a reply

Mar 11, 2008 10:46AM Jeannette wrote:

Hi to everyone!

It's been a while since I've been on.  Just wanted to let everyone know that I decided on the bi-lateral mastectomy with reconstruction at the same time.  I had my surgery on February 11,  2008.  I was under for 11hrs and in the hospital for 5 days.  I choose the tram-flap reconstruction for a more natural look and also for the chance of having feeling in each breast.

Got  the bi-opsy back before I left the hospital and my surgeon informed me that I made the right decision.  I still had DCIS in my right breast, just behind my nipple.  It was small that it didn't show up on mammo in September.  But that it was a significant amount.  Left breast was still clean!  I am very glad with the decision I made.

Still have to have nipple reconstruction.  I go back to plastic surgeon next week to find out more about that.

Log in to post a reply

Mar 19, 2008 11:32AM disnurse wrote:

I had a r mastectomy for dcis, high grade and no clear margins after 3 lumpectomies.  It was never presented as an option for a double and of course now i wish i had.  I have never had a "normal" mamo and just had my first one after all this and just the anticipation then needing an ultrasound to confirm cysts is too nerve-wracking.