just diagnosed

As a personal choice I would go with a mastectomy...I know it is an extreme measure but with such a serious disease dont take any chances. A close friend of mine had a lumpectomy and rads, doctors told her she would be OK and now she is dead. Don't want to scare you, it is your decision but that is what I would do. Of course you are going to get tons of answers saying it is perfectly OK to get a lumpectomy but in the end it is your life so think about it very carefully and go for what you think is best for you with no regrets. Good luck.

Yikes, Dalia, you may not want to scare longislandmom but telling her about a friend who had a lumpectomy and then died is a good way to scare someone.  Did your friend start with DCIS?  Or did she start with invasive cancer?  With invasive cancer, in most cases when mets develops, the cancer cells had already left the breast before the cancer was discovered, before any surgery was done.  So whether one has a lumpectomy or mastectomy makes no difference.  This is why so many studies have shown that the survival rate is the same whether one has a lumpectomy + radiation or a mastectomy.

The other important factor to consider here is that DCIS is pre-invasive.  DCIS is cancer that is caught at the stage of development before the cells have the capability of leaving the breast. Mets cannot develop directly from DCIS.  The risk with DCIS is that it can over time evolve to become invasive cancer, but if it is all removed as DCIS, then DCIS is 100% survivable.

longislandmom, your reaction is the same as many women have when they are first diagnosed. What you need to do is try to step back from the fear of the diagnosis and think about the implications of the decision.  Then you have to do whatever you feel most comfortable doing - there is no right or wrong answer here.  

Personally I'm the analytical sort, so one of the big factors for me would be an assessment of my risk level with a lumpectomy vs a mastectomy. After a mastectomy for DCIS, generally the risk of recurrence or the development of a new BC is about 1% - 2%.  After a lumpectomy for DCIS, recurrence rates can vary considerably, depending on the specifics of the pathology.  Someone who has a small single focus of DCIS and who has large surgical margins (ideally 1cm all around the tumor) might have a recurrence risk as low as 5%, even without radiation.  Radiation cuts recurrence risk in half, so someone with this type of diagnosis can achieve virtually the same level of recurrence risk whether they have a lumpectomy w/ radiation or a mastectomy.  However someone who has a large area of DCIS, or multi-focal DCIS, particularly if it is high grade, and who has smaller surgical margins (2mm or 3mm) could have a recurrence risk as high as 40% (or even higher).  Radiation can cut that to 20% and if the cancer is ER+, Tamoxifen (a hormone therapy pill) can cut that to around 11%.  For many women that's too high a risk, and they will opt for the mastectomy.  But other women prefer this option and are okay to live with an 11% risk (which is about the same risk that the average woman has to develop BC). Most women who have a lumpectomy w/radiation have a recurrence risk level that falls somewhere in between these two examples. 

My advice is to ask your surgeon and oncologist about what they think your risk level will be after a lumpectomy with radiation (they can't know for sure until after surgery but they should be able to provide an estimate), and decide what level of risk you are willing to live with.  Also consider the implications of having a mastectomy vs. having a lumpectomy - each has pros and cons.  Check out my post in this thread; it can help you work through your pro and con list:  http://community.breastcancer.org/forum/68/topic/783888?page=1#post_2902154

Let us know how your appointments go next week.  

LONGISLANDMOM... I was sort of in your shoes... I had IDC, and had a lumpectomy and chemo and was supposed to have radiation, but in my time in chemo had time to research... In the end, I decided to have a bilateral MX and skip the radiation. I had read too many stories of people thinking they have a simple cancer and after MX discovered more going on than they thought... I persoanlly couldn't live wondering if there was more there than they were seeing... AND by having the MX I didn't need radiation (which has its own set of SE)...

I was 47 at DX and wanted to do the most I could do... In the end, I had the BMX and recon, and all tissue was clean... and I have no regrets. I know I have thrown everything I can at the cancer and have reduced my risk of local recurrance to 2%. With IDC, and one positive node, I still have a 14% risk of distant recurrance, but I know I have been as aggressive as I could be. AND my breasts look exactly like they used to. I chose to do a tissue transplant instead of implants, and it was the best choice for me... 

I also had a young child (age 4) at the time of my diagnosis, but I had IDC.  I just wanted to do everything as aggressive as I could to give me the best odds of being here to raise my son.  I opted for BMX with reconstruction.  I was 45 when I was DX.  I am through the reconstruction and chemo and have no regrets.  It is very much a personal decision.  The survival rates are the same for lump+rads vs. MX but the recurrence rates are slightly different.  I also think having a young child impacted my decision. 

Good luck!

Longislandmom,

I am kind of in the same boat as you.  I was just diagnosed with IDC on 3/12/2012 and meet with my BS for the first time tomorrow morning.  I feel like this past week has been the longest week of my life because all I have been doing is reading/talking/crying about BC.  I too am leaning towards a BMX but will see what the doc says tomorrow.  Please keep posting since we may be going through similar things and I would love to follow your journey.

Thanks, Kristi

Longislandmom...my mammo was jan. 11th which showed three area's on the right of calcifications. I choose to have a surgerical biopsy vs. three needle biopsy little did I know I had to do three wire localizations anyway before surgery. one area came back as DCIS, stage 0, grade 3, other two high risk; sent for an MRI which showed something vascular noncancer thing on the left. BS at the time said lump w/rad and then 5 years of tamox with mammo's mri every six months or nipple saving Mastectomy on one or both side. I decided on double mastectomy, just get it out of me, who cares, just want to get rid of any chance and percentage of reoccurance. I went through genetic testing for Brac 1/2 came back negative but have cancer in family anyway. Met with BS, PS hated him yet he is well known. Went for second op at Mt Sini and glad I did. Love love love the BS met with her PS loved them as well. And second opinion is that with DCIS you shouldn't have NS becuase that's exactly where the duck goes, also second opin said take sen. nodes too; first doc didn't  I am scheduled for April 23rd,  MX with immediate reconstruction D.I.E.P. (or DEIP always screw that abbreviation up)  anyway, it's when they use your fat from another part of your body to form breasts.  At last my fat comes in handy.  it's an 8-12 hr which is crazy and week in hospital.  The way I look at this once this is all over I will have perky boobs, a flat tummy, 1% chance of breast cancer in the future. For me that's what is all about, the future! It's all very scary but there is some comfort in reading all these posts of those who are going and those who have gone through what's up and coming for me.  I know that the education of talking to doctors and reading as much as I could helped me make the right decision for me and in the end, I went with the doctors who I was able to talk to and those I felt really really comfortable with.  Good luck, hoped some of this helped.  

You are in one of the hardest places right now. It was a no brainer for me. I wanted to get rid of my breasts as soon as I was diagnosed. I have heard way too many stories of people having reoccurrence after lumpectomies. I was age 40 at diagnosis and had a BMX with TE's. I and now 15 months out and do not regret my decision for one second. Do I love my implants, no, but it is a very small price to pay for being alive. Good luck!

I never had any pain after MX... and turned down their pain meds when they allowed it... I came home and at two weeks, was very tired, but driving, shopping etc... I did have weight restrictions so I was limited, but ok. I did have a complication which had me back under the knife one month out, but a month later I was driving to my 30 year HS reunion in CT for the weekend... and just a couple of weeks later walking in the Avon Walk in NYC (I walked 23 of the 39 miles and could have done it all had it not been for my plantar fascitis in my foot.)

I was diagnosed with DCIS in 2008 and had a lump and rads and am on the 5 year tamoxifen plan.  My only advice is to be absolutely sure to understand your options for reconstruction.  You may not even want to think about that now; I was shocked and scared too and just wanted someone to take care of me and get it out.  Radiation caused permanent damage to the remaining breast tissue so recon is very difficult.  I have very small breasts and after the lumpectomy and rads, I was left with a significant deformity and attempted implants that ultimately failed.  I am now researching DIEP which would require I have a mastectomy on the remaining tissue which I was assured is not considered "overly aggressive" even though I have not had a reccurance.  Tamoxifen also has side effects, including uterine polyps, which I had surgically removed in January, thankfully benign but could develop again, per my gyne. I only wish I had this info when I made my decision, so I am hoping some of this helps.  I know each situation is so unique, so your decision will be based on your particular pathology, etc. Good luck to you and know you have lots of support here!!!!!!!!!

Hello LongIslandMom, 

I was diagnosed with DCIS 5mm, Grade 3,ER+ in my right breast. I went for a second opinion at Sloan Kettering hospital and the saw something suspicisou on my left breast mammogram (taken at my local hospital in Greenwich, CT). So I had another mammogram followed by another stereotactical biopsy. The left breast was diagnosed with ADH (atypia ductal hyperpasm - spelling off) but what it is is one step before DCIS.  At that point I knew I was going to have a BMX. I went to four breast surgeons, and two reconstructive surgeons before making the decision that was right for me. I ended up switching surgeons at Sloan - my initial was Monica Morrow who is Sloans top BS, but she is all about lumpectomy and treatment zero with compassion. I ended up at Sloan with Dr. Heerdt, who I LOVED and Dr. Corderio is my reconstrucive dr.  Dr. Corderio is their top reconstructive dr. but he lacks a personality and suffers from the "god" complex. But he's their top surgeon so I guess that comes with the territory.  If he continues to piss me off I may shop for a different dr - but its hard finding one who is this qualified and part of my "in network" under my insurance Aetna.

Anyway, I also had an MRI that showed a "highly suspicious lump" directly behind my DCIS. 

I just received my pathology report from my BMX, and the "highly suspicios lump" turned out to be nothing cancerous but they found LCIS (lobal) in both breasts.  This is something that mammograms do NOT pick up.

Even though the BMX is an agressive way to treat DCIS, my final pathology report proves it was the right way to go. And I am very pleased with my decision - zero regrets.  In the end you do what is best for you.  For me, I did not want radiation (I'm a fair irish) and I didn't want any part the drugs or chemo. Of course, if they found something invasive I would do everything I could. Lucky for me it was caught early and I am now cancer free!!!!

Lots of advice here on BCO! All the best to you! Two final things: 1. you will feel so much better once you have your plan in place 2. PS and BS can be alot like car salesmen - they are selling you their services. I had one PS call me "love" and he massaged my shoulders and neck during our first meeting.  YUCK!!! )))) 

longislandmom, take a deep breath.  Everyone has a story, and there are great threads that you can dip into to find out about specific procedures and their aftermath.  Each choice has pros and cons. In the end though this should be a decision based on your unique situation, made between you and your doctor. As soon as you formulate a plan you will feel better and more in control, especially if you spend the time to do some research and consider all of your options.  Good luck to you, these ladies will be here for you.