Extensive DCIS w/lumpectomy?
I am still trying to decide whether to have another reexcision, which would need to take 5 cm of tissue, in addition to the 7 cm of DCIS that have already been removed from one quadrant of my breast. In another quadrant, I have ADH.
Has anyone with extensive high grade DCIS with comedo necrosis opted for lumpectomy and radiation?
Comments
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I had DCIS and opted for a mastectomy with no reconstruction in February 2011. I am very happy with my decision, but we are all different. What might be good for me may not be good for you. Good luck with your decision.
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I had extensive DCIS - seven centimeters - and opted for BMX with no reconstruction on April 25. I am happy with my decision, but this is so personal. I would just suggest a second opinion before you decide one way or the other.
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I had about 7 cm taken out with no clean margins, so they knew there was more DCIS left in the breast. My original surgeon recommended mastectomy, her partner recommended mastectomy, she sent me to the surgeon she did her residency under and he recommended a lumpectomy but it went up to the tumor review board and they recommended a mastectomy.. My BS said it was my decision. I opted for mastectomy. After already have 7cm taken out on one side (Multi focal DCIS, no clear margins) and another 5 cm taken out on the other side (which turned out to be A-typical), it didn't seem worth it. My breast was already deformed and needed reconstruction. For those reasons, and because everyone recommened mastectomy, and my own peace of mind, I opted for unilateral mastectomy. I haven't received my pathology yet, in writting. My doctor did call and give me the all clear. He said there was more DCIS in the same area, but they expected that. I don't know how extensive it was.
I will say I work with a woman who had over 10 cm removed and her doctor got clear margins, and did not recommend Tamoxifen or raidiation. She is very happy with it all and she is going in for reconstruction at the end of August.
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Thank you for your responses. Yes, if I could get clear margins, and no radiation, that would be ideal. I had assumed you had to have radiation, until I read portions of Dr. Silverstein's recent article on the problems with radiation.
I guess I could try one more lumpectomy to see if we can get margins that are sufficiently clear - 10 mm - and then decide. At that point, I would know I'd done pretty much all I could to keep my breast. Mastectomy is a tough choice for a non-invasive cancer, but, of course, it's the recurrence that we worry about. That, and any occult disease, when the DCIS is extensive.
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I'm not sure whether or not I'd fit your definition of "extensive" but I had multicentric disease and chose a mega-lumpectomy (in the form of a bilateral reduction and lift) which resulted in clean margins, and then radiation.
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I had DCIS that was 8 cm large. My BS told me mastectomy was the only way to go. He said it was too large an area for lumpectomy. I have heard and read that lumpectomy is only recommended if it involves 1/4 of the breast or less. Any way, I had unilateral mastectomy in July 2010, no reconstruction, and am content with my decision. Each person has to decide for herself, but it's good that you're asking others about their experiences. Best if luck to you.
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Hard choice. I had the same question. If it's not invasive, why go to such extremes.
My second dx, I had a quandrant of my breast removed (which was a lot of tissue) and besides the tumor found, high grade was dotted throughout the breast tissue. The lab did not give measurement because they said it was too large of an area. I never figured that one out. Because I was self pay, I chose lumpectomy only. I also choose not to do rads or tamoxifen.
I am comfortable with my decision. There were times when I doubted my choice and wondered if I made the right decision. After being dx the third time in the other breast, I seriously considered a mx. After reseaching it, I decided if I didn't have to, I wouldn't. I'm glad I didn't.
You have to live with the results. It's your decision.
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Ahhhh! And there's a third thing I worry about - insurance coverage. I currently have a group plan. If I leave it, which is quite possible, it will be difficult to get insurance coverage. That makes it harder to take the "wait and watch" approach.
Thank you all for your comments.
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Hi Athena. My story is not exactly like yours, but I am faced with the same decision right now. I have already had a lumpectomy and a re-excision with a "generous" amount of tissue removed (my BS's words). I currently have a close margin and the radiology onc won't start rads even though my BS thought it was ok based on where it is located and the fact that is was one very small focus of cancer cells found. I guess it is a common trait of DCIS to "skip" around the ducts, which mine had done. Well, to make a long story short, my BS agreed with the rad onc and recommended another re-excision. I am 42, have grade 3 DCIS and I am ER-/PR- ; they both feel that surgery should be more aggressive based on these factors.
I told my BS to do a MX, but she feels strongly that I don't need it. She told me not to make a hasty decision because I am frustrated with the process. I have given this a lot of thought and done a lot of research and I am having another re-excision next week; I would rather not lose my breast if I don't have to. I agree that this is a personal decision, and you need to decide what is best for you. If you don't feel comfortable with your BS or his treatment plan, then seek out a second opinion. I also want to add that you can get partial reconstruction if your lumpectomy is severe. I met with a PS to discuss this and there are a couple of options available.
Good luck to you, let us know what happens.
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I was diagnosed with DCIS, grade 3, er/pr negative, multi focal, multiquadrant, comedo necrosis. I had a lumpectomy and the results came back with one margin smaller than recommended. The surgeon's biggest concern was she didn't get it all. She said the fact that there were so many tumors in two quadrants of my breast caused her to have doubts. My case was presented to the tumor board and all 10 doctors recommended a mastectomy. When the results of my mastectomy came back it turned out no additional cancer found . . . all was removed with the lumpectomy.
That said, I have never regretted the mastectomy. I know I would have constantly feared the unknown. I was also hesitant to have radiation. And the er/pr negative was the final deciding factor. But as my surgeon said, we can always do a mastectomy, but we can't undo one. Hence, the decision to have a lumpectomy first. You have to be comfortable with whatever decision you make. Trust your gut and go with whatever feels right.
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Why would you not be able to get insurance coverage? As long as you leave your insurance with group A and go to another insurance company within, I want to say 6 months, there is no lapse and no insurance can deny you as a pre-existing condition. If you leave the coverage you have and wait an significant period of time (or can't afford to pay insurance on your own), then you can be denied, which absolutely sucks. No insurance is allowed to drop you as long as there is not lapse in coverage, though many try.
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Did anyone test you for Her2/neu? I was DCIS plus Her2/neu + and got a vaccine at University of Pennsylvania. You would qualifiy if you do not have clean margins. I felt safe enough with the vaccine and lumpectomy that I chose not to have radiation. They measure my immunity and it has stayed high. Watch our video, A Cure Within on You Tube. Investigate clinical trials. Cleveland Clinic has Dr. Vincent Tuohy who is also working on a breast cancer vaccine.
Deciding on mastectomy is hard. I at first wanted one then the doctor said lets do the lumpectomy, look at the pathology and go from there. After the vaccine, the cancer cells were all gone. Whatever you decide, I am glad for you that you are diagnosed at Stage 0, DCIS, many women are not that fortunate. I was and am grateful.
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Shelleydodt - No, no one has tested me for Her2/neu. I know there's disagreement about its role in DCIS; apparently my doctors don't favor it. And I had not even heard of a breast cancer vaccine - how wonderful would that be! Thank you for participating in a clinical trial! I would have loved to do so but I'm too far from a research center. That's the only way they'll figure this out, in the long run.
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I had a BMX in April. I had mulitfocal DCIS comdeo necrosis. I am happy with my decision.
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I have had 2 lumpectomies one 5 cm and the other 6.5 cm. Now I'm told I need to have a mastectomy because I still didn't have clear margins. I'm a mess because, really, my boobs are part of ME and losing one is emotionally so hard. I'm searching for a skin sparing, nipple sparing surgeon and am going out of state (CT). Went to Dana Farber and had a consult with a surgeon from hell. He was cold, never even examined me, completely ignored the emotional part and told me there was "no such thing as a skin sparing mastectomy" Now I'm headed for NY and Sloan Kettering. Surely there must be someone with compassion who can do this kind of surgery. In 6 weeks I went from a simple lumpectomy where I would need radiation, to a mastectomy, without having to have any lymph nodes (so I'm told). I hope I'm not the only one out there who is in complete shock over this.
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You said you could get partial reconstruction after a severe lumpectomy? Would that be after radiation? I've had 2 lumpectomies, may need a 3rd, and would prefer to keep my breast but was told reconstruction was very difficult after radiation because of the effects on the skin. I'm already pretty disfigured and would like to have my breasts "match".
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I have no idea how they do reconstruction when they do lumpectomy with radiation. It was just what my doctor told me at the time. Since we ended up going th MX route, I never investigated it further. I do know that when I was looking for a PS that I liked, one did say that they could do reconstruction if you have radiation, but they wait a year to let the skin heal. So it is possible! I would post to the reconstruction forum and ask there. They should have more information.
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Bruthd52 - I'm so sorry. That is fast. Of course - I've been dragging my feet on resolving the issue - it's been six months since my initial diagnosis. (I justify that by saying if I had not gotten a second (and third) opinion, I would not even know I had dirty margins.) My local surgeon is big on breast conservation, as am I; the cancer center is understandably more focused on curing and preventing cancer.
Two studies I've read recently are making me believe mastectomy might be appropriate in my case. Dr. Silverstein published a 2010 study using the VNPI scoring system that showed for my size and grade of tumor, I had a 40% chance of some recurrence at 12 years even after radiation, and a greater than 20% chance that it would be invasive.
On top of my VNPI score - I have dense breasts, which the VNPI doesn't even take into consideration. So, if you factor that in as well, it looks like odds are pretty high I'd be doing chemo 12 years from now, when I'd rather be traveling. :-)
They can do reconstruction for partial mastectomy, although there's the potential for radiation to damage the breast tissue. They do anything from saline or silicone implants to autologous tissue implants. The cancer center here does a lat flap for reconstruction after a partial mastectomy, but I've read of other places that do DIEP flaps. I'm guessing DIEP flap is not standard for partial mastectomies because the DIEP flap is difficult and a very invasive surgery. Regardless, if I have the mastectomy, which I am now leaning towards, I'll do DIEP reconstruction.
For you - Grade 1 is pretty good, but triple negative, not so good, as I'm sure you know. I am ER/PR positive so haven't done that research.
I think there are many compassionate surgeons but it is sometimes hard to tell. :-) Some are very fine surgeons but haven't developed all the human interactive skills one would like.
Good luck to you. I'm still thinking but those last two studies make me think perhaps mastectomy may be in the works, for me.
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Hi Athena, after a mammogram and core biopsy, i my dx was DCIS of less than 1 cm. I had a lumpectomy of that area in Jan '11 and at the same time an excisional biopsy of another 2 of 4 suspicious areas of calcs. Of the 9 cm of tissue taken 8 cm were DCIS, grades 2 and 3 with comedonecrosis. There were no clear margins and the probability that the other suspicious areas not biopsied were also DCIS. My PS said I needed a mastectomy. I ended up having a bilateral mastectomy because a subsequent MRI identified a suspicious mass in the other breast which, after ultra sound and biopsy was found to be IDC. My final path showed an additional 1.5 cm of DCIS in the first breast for a total of 9.5 cm and 1.1 cm IDC and 2.5 cm DCIS in the other breast. I had SIEA reconstruction at the same time 10 weeks ago tomorrow and doing very well. I am also scheduled for my second round of chemo tomorrow.
These decisions are very difficult to make especially if you don't have the medical background to really evaluate what you are being told. I had to rely on my doctors' advice with my intuition about what was right for me. -
Bruthd52.. I just got back from Sloan last week for a 3rd opinion... I saw Dr El-Tamer for surg. and Dr. Cordeiro for plastic surgery... I did not have a good experience down there, but you may like Dr. El-Tamer... he basically looked at me like I was crazy for wanting BMX... I have a messed up medical hx and NEED to do BMX in order to ever live any kind of normal life after this... I drive myself insane worrying and can't function. He seemed much more conservative than I like, the plastic surgeon was another story all together, I would never let him near me... kept us waiting 21/2 hours and barely had 15 min. for us, no personality or compassion at all and he is head of the department... only thing I learned by going there was a 2nd look at my slides from my sterio static that said there might be evidence of microinvasion which reall pushed me to BMX even more. I think it never hurts to get more opinions, it gets real confusing and then you just know what you have to do for your own piece of mind...I finally scheduled my surg yesterday and it is such a relief to feel like I am moving forward... sure the nerves will set in as it gets closer but I am sure about what I finally decided... best of luck... any questions about Sloan ask me... we stayed in an OK hotel that you could walk to the breast center frrom which was nice.
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oops forgot, a friend of mine here goes to Mount Sinai (is that how you spell it?)NYC for tx of her BC... I forget the name of her surgeon now, but she left Sloan to head their department, my friend did lumpectomy and absolutely loved her.. she was out of town when I was trying to set up appts in NYC and didn't want to wait, and to be honest I really want to do treatment near home as I have 3 little ones and can't easily get away, I was only going there for a possibility of a "miracle" treatment I didn't want to miss out... at least I feel like I checked off that box
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Meg, I found a wonderful oncoplastic breast surgeon in Ridgewood, NJ - she practices in NJ and at Columbia, NY. At first I was gong to go with a mastestomy but she said I should try one more lumpectomy. It's a 2+ hr drive from where I live in Ct but worth it to me to be going to a kind, compassionate person. I cancelled my appt at Sloan since I kept hearing not great things about it. I'm praying this lumpectomy will be negative for more cancer. I will be able to do my rads in Ct. I've been told I can get reconstructive surgery if I want it. My surgeon also said I could have my other breast reduced to match the one with the lumpectomy, which cracks me up since I became a C-D cup after menopause - now I'll be moving back to the B girls.
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Athena 2b - I'm going for my 3rd lumpectomy. Was going to have a mastectomy but my new and wonderful oncoplastic surgeon said I should try for one more lumpectomy. I've had 5 cm and 6.5 cm already removed. She said I could have reconstructive surgery if I was unhappy with how the 3rd lumpectomy looked (if the margins are clear). I will then need 6-7 wks of rads but feel like I will have spared my breast and am actually less anxious than when I thought I'd be having a mast. Unlike what a first radiation oncologist told me, this surgeon said I would not be badly deformed from rads - and that I could have reconstruction. Whatever your decision, you have to believe it's the right one for you right now.
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Thanks for the info. I cancelled my appt at Sloan after I met Dr Laura Klein, an oncoplastic breast surgeon who practices in Ridgewood NY and at Columbia, NY. She at first said she'd do a skin sparing mastectomy but then, felt a 3rd lumpectomy was better and that it might have clear margins. I'm travelling 2+ hours to do this but feel more positive than when I was in CT. She studied under Dr Silverstein from CA who has done so much work with breast cancer. If my margins aren't clear, I will still go to her for a mastectomy and reconstruction. She also said I could have reconstruction after a 3rd lumpectomy, however, as an oncoplastic surgeon, she specializes in reconstruction the breast with the tissue that is left to make it as natural looking as possible. One may be smaller than the other, but at least, hopefully, they'll be mine.
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Athena
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