I keep wavering

I think the real concern is an area of 11 cm that is involved - that is huge!!  I'm trying to visualize how a surgeon could remove that much tissue, allowing for clear margins on all sides and still leave you with a decent looking breast.  Perhaps if you are very large-breasted it *could* work. Whether or not you have a microinvasion should not be a factor in your surgical choice.  As long as the surgeon can remove the entire area with clean margins, your prognosis would be the same.  Is he concerned there is diffuse DCIS throughout your breast making a lumpectomy w/clear margins  surgically impossible?  Have you had an MRI?  Also, if reconstruction is being discussed, you *really* should be allowed to consult with a plastic surgeon.  They are the best ones to tell you which type of recon would be best for you, and what your choices are.  Have you seen a medical oncologist yet? They are the best ones to discuss recurrence rates etc, with you as well as go over your options. 

It is no wonder you are confused!  See if your medical team can answer your questions and ease your mind a bit.

Good luck!

Mary

I am 64 years old and was diagnosed with lobular carcinoma insitu....stage 0....in January, 2009.  It was a drastic decision, but I elected a double mastectomy with reconstruction.  Chemo and radiation were not necessary.  I had the 410 gummy bear implants in July and nipple reconstruction just last week.  The toughest part for me was the expanders but once you get thru that, it gets better.  I am pleased with results and have peace of mind regarding reoccurrence.  I would advise double mastectomy for any stage of breast cancer.  Prayers to you as you go thru the days ahead.

My first lumpectomy removed a tumor that was 6 cm the second tumor removed was 8 cm.  The BS told me he got everything the first time but an MRI showed differently. They were unable to get clean margins.  Still I waited until I saw a Radiation Oncologist that specialzed in DCIS.  After she explained both sides radiation and reoccurance vs mastectomy simply and slowly it was a no brainer.  Easier to handle, no, but each day gets better. Like you each day is a new day with different emotions.   

I am waiting for my surgery date for a mastectomy with immediate reconstruction (within the next two months I am told)

Talk to a PS about all the reconstruction options before you have your mastectomy because they have to work with what is left after the mastectomy.

You should take your time and make sure that you understand what you are doing and doing what is right for you.

I'm your age and also had/have 11-12 cm of high grade and mid-high grade DCIS.  I was adamantly anti-mastectomy, but after my 2nd large lumpectomy discovered another previously undiagnosed area of DCIS and my Van Nuys score was pegged at 11 out of 12, I resigned myself to unilateral mastectomy with immediate DIEP.  Am I looking forward to this?  Absolutely not, but I've decided that I want to stick around for a while to torture my huband and kids and spoil my dogs.  I've talked to a lot of women who have had the DIEP.  While I know the first few weeks may be rough I think it's worth it, but that is me.  Obviously, you need to come to your own decision and you will in your own time.  

Good luck.

I felt the same way as you. Why am I losing a breast for a preinvasive cancer? Right now, we have no other way to treat DCIS so unfortunately losing the breast is somethimes the only option. I had a rather large area of DCIS as well, but I was fortunate in that there were no invasive components. My decision to have a bilateral had to do with my personal history (mom and 2 cousins died from breast cancer) and qualities of my dcis that were unfavorable (high grae, negative estrogen receptivity). I did talk to a lot of specialists on the road to making this decision however, including other surgeons and genetics. Perhaps you should also speak to a medical oncologist. This is not something that I did, but many women on this board have done this prior to sugery and found it very helpful. Good luck with your decision.

nolookingback I sent you a PM

Hi Sweatyspice, I'm so sorry that things are so complicated for you.  Ive had the TE's for 5 months and they aren't that bad.  You will at least have a breast mound when you come out of surgery even if it is small.   It is very important that you have a good relationship with your PS and that you trust them(sounds like you do).  I know its disappointing to have to go through stages of reconstruction but you can do this.  Ive found the reconstruction very positive, even though its far from quick!(TE/implants)  You can do it, if thats what you decide.  Sending you decision making vibes and lots of luck!! 

No you don't need help, your doing gr8! 

Thanks, KAR - but I'm not interested in implants.  If I do mast, I'm planning DIEP.

I might try lump and do DIEP if lump fails - I'm mostly afraid the lumps WILL fail and the end result will be compromised because I was a wuss and tried the lumps first.

Thanks cm, but since my affected breast is a C+, I don't think a TE will support that much empty skin. Now, if only I could get them to put a helium balloon in there, keep it nice, lightweight and high!  That would work!

As long as it was a helium balloon that wouldn't deflate.

I'm 64 and had DCIS in left breast two and a half years ago, and I checked out all the possible options so I would know the choices: went to talk to the radiologist about radiation, the plastic surgeon about reconstruction, two surgeons about mastectomy versus lumpectomy, and read a lot on line. My inclination was to have a mastectomy as the most important thing for me was to not have the worry about a recurrence.  But I quickly ruled out reconstruction - to have more surgery with often lots of problems just to have what are essentially manufactured body parts to lug around (they have no feeling, you know) was the easiest choice: no way. So I bowed to people saying that mastectomy was overkill and did a lumpectomy. But the margins were narrow and I needed a reexcission. . I was already none to happy at the prospect of radiation (which has some risk to damaging the area around your heart) and five years of Tamoxifin with all its side effects and risk of other serious problems. So I had the reexcission, but was already leaning more toward mastectomy. The margins were still narrow,so the surgeon recommended mastectomy. By now of course I'd had time to get used to the idea. I spent a weekend thinking about a bilateral mastectomy. It did seem extreme.  But I didn't want to be lopsided, and didn't want to have to wear a prosthesis.  And it would remove the worry the risk of a cancer in the other breast. So I had a bilateral mastectomy and I couldn't recommend it more highly. I had almost no pain after the operation - it is amazing. I took one pain pill the first night, and didn't really need that. I don't worry about a recurrence. No radiation, no tamoxifin, no further surgeries, no bras, no prostheses - I just throw on a t-shirt. I even go to work out at the gym in a tank top. Jogging is easier without breasts.  Really, my breasts had not much to do with my sense of who I am, so I don't feel any different. When I was considering this choice I asked my husband if he would mind me being flat, and he said, "It's always worked for me." 

I thought I had made the right choice. But now I realize I had rushed to a decison. When I saw the MRI it lit up like a Xmas tree from ILC. I was told the area was 5.9 cm. This wasn't the case. It was 4 cm on the pathology report after my mx surgery. I could have had fat injections if I would have had a lumpectomy. That's how they fill in the ripples and dents when you have a mx and it doesn't look right. Also, an implant does NOT look like a 'normal' breast. Photos can be deceiving. I told my PS as much when he was taking my photos because I knew the ripples and dents wouldn't show because of the way he had me positioned. The position makes you stick your chest out. They should take some photos of bending over or sitting-that's a whole different picture...My recommendation is to do a unilateral lumpectomy. That way you can have time to decide what you want and to go from there. I was also going to have a lift on my uneffected boob. I'm glad I didn't because I've had way more pain than I ever had anticipated. Radiation is bad for reconstruction. If you do end up doing a mx you can get a tissue expander put in and give you some time to think about whether or not to get radiation etc. Remember, just because a treatment is suggested doesn't mean you have to do it.