DCIS- double mastectomy or not??

Freddie, I had grade 1 DCIS. I too have a family history of breast cancer. My mom was dx in 2001 at age 65 with IDC and is doing well. You need to do what ever surgery you feel comfortable with along with your surgeon's recommendation.

My history is 1, family history of breast cancer (mom) and ovarian cancer (aunt).

2. previous personal history of abnormal mammos resulting in biopsies (both breasts 18 months apart) that showed pre-cancer ADH.

I was tired of the unknown every time I went for my mammos and my surgeon after the 2nd dx of ADH put me on tamox and suggested I consider preventative bilat but would not pressure me either way. I was 46 when I was dx.

Prior to my decision I made a list of pro and con for bilat surgery. You could do the same thing and when you see it on paper it may help you make your personal decision. I admit it wasn't an easy decision to make, at least I had 6 months after it was suggested to me before I had to make that decision. Sometimes I still (2 yrs later) wonder if I did the right thing but because of my history, I didn't want to face this later and possibly not find it before it had become invasive.

Good luck on your decision.

Sheila

Hi Freddie.  Just out of personal experience, I had a unilateral mastectomy for DCIS in September 2008.  I took the BRCA gene test because my mom died of breast cancer at age 49.  It came back negative.  However, I have recently returned for the mammo on my existing breast.  Even though it is healthy, I am most likely having it removed this summer.  For me the emotional trauma of going for testing every six months outweighs the nuisances (and believe me there were MANY) of reconstruction.  It is a very personal choice.  Your chances of getting breast cancer in the other breast are small, but the question is how well you can handle the emotional stress of testing.  Some women deal with it well.  Others, like myself become basket cases every time there is testing.  You know yourself.  Think long and hard before making any impulsive decisions.  Good luck.

I don't know if it will help anyone making a decision but the choice of double MX is perplexing the medical community.  Perhaps they should read some of the comments here in addition to their massive studies. Another just came out described as follows:

"The 10-year survival rate for women with DCIS is 98% to 99%," said lead author Todd M. Tuttle, MD, chief of surgical oncology at the Masonic Cancer Center, University of Minnesota, in Minneapolis, in a statement. "Therefore, removal of the normal contralateral breast will not improve the excellent survival rates for this group of women. Nevertheless, many women, particularly young women, are choosing to have both breasts removed." 

Title:

Increasing Rates of Contralateral Prophylactic Mastectomy Among Patients With Ductal Carcinoma In Situ

http://jco.ascopubs.org/cgi/content/abstract/27/9/1362

http://www.medscape.com/viewarticle/591170?sssdmh=dm1.459214&src=nldne

http://jco.ascopubs.org/cgi/content/full/27/9/1347

From the accompanying editorial:

In sum, we really know very little about CPM. It nearly completely prevents CBC. However, hormonal manipulation also reduces this risk, albeit less effectively, without the trauma of mastectomy and reconstruction. Newer technology, such as magnetic resonance imaging may detect CBC at an earlier, more curable point than in the past, though this is not yet proven. Even so, it is not likely that all CBCs will be cured. Thus it is plausible to argue that CPM might result in superior long-term BCSS—but that is not the same as having solid evidence that it does, or (more importantly, perhaps) knowing exactly how much difference it might make. (Would patients have CPM to improve their cure rate by 1% at 10 to 20 years?) Few studies so far have examined this question, and their power to answer it is limited by small patient numbers and short follow-up. Regardless of any survival benefit, some patients may feel CPM will give them greater peace of mind, but they should realize this effect may be substantially diminished by their remaining anxiety about having cancer, even one as highly curable as DCIS.  Come to think of it, didn't we debate these same issues for the ipsilateral breast when BCT was new? We did—but this time it is unlikely that randomized trials will show which of our prejudices and assumptions are wrong.

Freddie:

You asked for our experiences, so here's mine.

I was dx with DCIS Jan 09.. I knew immediately what my course of treatment would be. I'd always said if I was ever dx'd., I'd have a bilat mx.  I didn't change my mind.

My Mother died of ovarian cancer at 52. Two of her sisters had bc. I have one deceased first cousin that died of bc and presently have 4 other first cousins battling the dreaded disease. So, as you see, cancer is rampant in my family. 

My oncologist suggested I have the gene testing done. I did. It came back negative, so she said I didn't need a bilat mx.  I disagreed.

My bilat mx with DIEP reconstruction was 19 days ago. Yes, it's a tough decision, yes it's a tough surgery and yes, it's a tough recovery, but if I had to do it again, I would still.

Like 3girls4me, carolmarie and lv2quilt, I couldn't 'wait' for the other shoe to drop. Some people can handle that, but I couldn't. I'd lived with the threat of ovarian cancer for 20 yrs. I finally had a prophylactic oopherectomy and pathology on the ovaries came back negative. I escaped that one.

My pathology on my breasts came back with more DCIS in the cancerous breast (just as I figured it would). I had a clean bill of health after my lumpectomy and snb. They said I had clean margines. That was good, but what if there was more DCIS in that breast that didn't show up on the mammo? There was more!

No one can tell you the right or wrong path for you to choose. It's personal and everyone is different. You have to do what's right for YOU. It's a long hard road and the decision is hard also. Cancer is a hard pill to swallow and we have to do what's right for us.

You'll be in my prayers as you face this decision. Please come back often. The ladies here are wonderful and full of information. I don't know what I would have done if I hadn't found this site.

I love them each and everyone!

God bless.

Hi Freddie,

I understand how you feel...I had a double mx but was only dx'd with cancer in my left breast.  I knew right away I was going to have that done. I am going to start Chemo in May and reconstruction as soon as I get the clearance.    I also had the gene test but still waiting for results.

My mom had it and so did my aunt (both have passed) .  I knew I didn't want to go through this stress again if it would have appeared in my right side at a later date.  I am 38 and have 5 girls so I figured I'm gonna do what I gotta do to be here a long time to see my girls grow up and I'm not gonna take any chances.  That's how I looked at it, but like everyone has said...it's your decision.   

You will make the right one...we are all here for you!

Freddie,

It's so true that each woman's experience is unique and each decision must be one's own. I was diagnosed with widespread DCIS in one breast Fall 08 and had a single MX . The other breast appeared clear. Prior to the MX I asked my surgeon about having a bilateral MX, and was told "You can always do it later if you decide to do that." It was my mistake that I didn't ask more questions, since I assumed that I could always have the mastectomy of the remaining breast later during the same surgery as reconstruction on both sides. Now that I am a few months post-surgery and I realize that I really want to remove the other breast so I won't spend my life worrying, I have learned that the best plastic surgeons in our area require that the surgeries be done separately, with a time period for healing between the MX surgery and reconstruction. So that means I'll have to have an extra, separate surgery for the second MX (with another anesthesia, another separate recovery period, etc.) If I could do it over again, I would have a bilateral MX at the outset.

Good luck to you in working out what's the best choice for you. I wish you all the best.

Hello, I was diagnosed with DCIS five years ago.  I was happy to have a lumpectomy and I've been fine ever since then.  My aunt was also diagnosed with DCIS fifteen years ago.  She insisted on a double mastectomy.  So it's a very personal decision.

Talk to another doctor and get a second opinion if you are unsure how to proceed.  These decisions are tough to make.  Good luck.

Beesie, I always love reading your comments -- you are such an amazing source of information. I know that immediate reconstruction is done all the time, since I read about so many on this board! Maybe I worded my comment incorrectly. Also I should note that I'm looking at tissue expanders followed by implants.

I have met with two PSs. One will not do reconstruction for several weeks post-MX, period. He said the result is much better (and better controlled -- my interpretation of his comments) if you wait for the skin and muscle to adhere to each other following the MX so they will function as a unit during reconstruction. He didn't say it's not possible, but he will not do immediate recon because he believes the result is superior if you wait. The other PS also prefers to let the MX heal before doing recon. He said that if I insisted, we could talk about it; but he clearly prefers to wait and also believes the outcome is better. These are two really highly-regarded PSs for breast reconstruction (and I'm in a metropolitan area with lots of options). They are in two different practices as well.

I am likely to go with one of these two based on their reputations and the quality of their work. I will raise the question again at my next consult. While I would love to avoid another separate surgery, I also don't want to make a decision that might decrease my chances of successful and symmetrical reconstruction. I still wish I had pushed more for bilateral MX at the outset, but nothing I can do about that now!

Carolmarie, no, the PS was talking about the first surgery in which the TE is...um, installed. He won't do this surgery until several weeks post-MX because he says the result is better. The change-out to implants would be a separate surgery several months later. I will be revisitng the topic in phone calls to both offices and a follow-up appointment.

ITSMYSECRET - Same here.  I had a bleeding nipple.  Nothing showed up on mammagram or ultrasound.  MRI showed the breast with the nipple discharge as DCIS.  I elected for bilateral and sure enough there was DCIS on both sides.

I sure don't regret my decision - especially after the pathology report came in.

See, Barbe, it wasn't me that brought it up!  Falsely accused.   As far as I can recall, I've only referenced the "hijacking" of threads once in maybe the last 3 years.  BTW, I don't think this thread was hijacked.  It stayed on topic throughout, with an interesting discussion about bilaterals for DCIS, which was the subject of Freddie's question.  

Freddie, sorry, my comment here is certainly off topic, although not really a hijacking, just a temporary diversion  (referencing a discussion from another forum, as did Barbe).  In any case, this thread somehow got revived after being dormant for about 10 days.  I think your follow-up thread is much more current so hopefully any additional discussion about bilaterals for DCIS goes into that thread.

Hi Freddie, 

I know you wrote your original post a while back.  I hope you have made some progress and feel peaceful about at least parts of this decision.  Do you have a choice about whether or not to have a second lumpectomy vs mastectomy? I think it's really important for you to meet with a genetic counselor, AND to know the stage of your DCIS and hormone receptor status before you make any decisions. Stage 1 DCIS is pretty different from Stage 3 with comedo necrosis, which is what I had. 

As others have said, the decision about mastectomy is very personal. You are the best judge of how you deal with stress and worry. In my case, I chose to have a unilateral mastectomy plus immediate DIEP reconstruction rather than a second lumpectomy with the uncertainty of clear margins, and radiation if the margins were clear. (My original breast surgeon agreed with me, fortunately.)My breast would have been fairly deformed by a second lumpectomy plus radiation, because the DCIS was growing toward the nipple. The chances of having cancer in the other breast are fairly small, and I am comfortable with regular screening. I have a strong family history of post menopausal breast cancer, but my genetic counselor did not feel BRCA testing would be useful.  We don't know what kinds of genetic markers may be discovered in the future.

Good luck in your decision!

Ina

Thanks for the advice Betsy! I am also struggling with decising between double mastectomy or unilateral mastectomy.

yasminv1  is that a yorkie on you rpost???  I have 3.