lumpectomy vs mastectomy - why did you choose your route?
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Yup, lumpectomy and partial mastectomy are the same. It's just a quirky thing as to which term different facilities use and why they use one versus the other. For example, some facilities will use lumpectomy if the breast tissue being removed is all in one quadrant of the breast but will call the operation a partial mastectomy if the breast tissue being removed is in two quadrants of the breast. In my mother's case, because she'd had a lumpectomy as her first surgery, when she went back for a second surgery to get wider surgical margins, her doctor called this second surgery a partial mastectomy, even though very little breast tissue was being removed. Apparently some insurance companies balk at paying for the same type of surgery twice, so this was her doctor's way of avoiding that problem. It was a small easy surgery but my mother was very concerned because the paperwork she signed said "partial mastectomy".
To complicate things further, an excisional biopsy, i.e. a surgical biopsy, is also the same surgery as a lumpectomy, although there may be less concern about surgical margins when the surgery is a biopsy versus when it is being done to remove a known cancer. Some doctors and facilities choose to call the surgery a 'lumpectomy' regardless of whether it's a biopsy or cancer surgery, and that can be really confusing because the term "lumpectomy" is associated with cancer.
A mastectomy, on the other hand, is very different from a lumpectomy/partial mastectomy because it involves the removal of the entire breast.
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My biopsy results were “atypical papillary and cribriform duct epithelial proliferation” the Pathologist’s comments were”findings are suggestive of an encapsulated papillary carcinoma. Excision of the entire lesion is recommended to exclude the presence of invasive carcinoma.” So are atypical cells cancer? I don’t understand the difference between the Pathological Diagnosis and the Pathologists comments. Seeing a surgeon Tues. to schedule Lumpectomy. My PC said I’d ost likely have a course of radiation and one of the drugs like Femera. After reading people’s comments about side effects, I’m terrified. I’m 70 and have liver issues as well as osteopenia. Maybe I should be considering a mastectomy rather than a lumpectomy. Does everyone take these drugs
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Cakencobbler1- my understanding from my own research is that atypical cells are not necessarily cancerous but indicate a change in the cells. Once they take the tissue out they'll know for sure. In my case a mastectomy got me a pass on the radiation but I still was given hormone therapy, which has turned out to not be that bad. There are other therapies that don’t mess with your bones so if they do suggest HR I would definitely ask about that. I took the drugs because I was had a strong estrogen reception and I was the best case scenario so maybe another thing to ask about is how strong was your estrogen receptor reaction. This is all assuming it becomes necessary:). I hope that it doesn’t, but this site is full of people not just surviving, but living, and doing it beautifully. I hope you get answers soon, waiting was the worst part to me.
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I think there is another reason not to opt lumpectomy and radiation. This article figures out heart diseases are caused by radiation treatments particularly in the breast cancer survivors whose left breast is cancerous.
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i had 3 lumpies in 08, bad choice, now fighting stage 4, surgeon thought she got all but since 30 percent of all dcis returns, i got lucky.
Should have do e the mastectomy
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proudtospin, did you not also have a microinvasion at the time of your DCIS diagnosis? I remember that because I had a microinvasion as well. This makes the diagnosis Stage I and while the difference vs. a diagnosis of Stage 0 DCIS is very small, there is an additional small risk of mets.
Do you have a reference or link to the stat that 30% of DCIS returns? I have never seen any figure like that and if this is new information I would like to read about it. From all that I've read over the years, I believe the average recurrence rate for those with DCIS who have a lumpectomy + rads is in the range of 8% - 12%. This can vary hugely in any individual case, depending on the size of the area of DCIS, the focality (a single focus vs. two or more areas of DCIS), the grade of the DCIS, and the size of the surgical margins. I remember reading a study shortly after I was diagnosed 14 years ago which found that recurrence risk after a lumpectomy for DCIS could be as low as 4% or as high as 60%, depending on these factors.
For those who have a MX for DCIS, most studies have found the recurrence risk to be 1% - 2%. However if there are close surgical margins after a MX, a couple of studies have found that the recurrence risk might be more in the range of 12% - 15%.
On average when someone has a recurrence after surgery for DCIS, 50% of the recurrences are also DCIS, while 50% are not found until after the cells have developed to become IDC. I believe the % of recurrences that are IDC is somewhat higher after a MX than after a lumpectomy.
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I was diagnosed with DCIS in my right breast in February of 2018.The single focal area was 9-10 centimeters and very near the nipple area. I chose to get three opinions on which procedure (lumpectomy or mastectomy) was best for my specific situation. All three oncologist recommended removing the right breast versus a lumpectomy. I had the unilateral mastectomy in April 2018 and underwent breast reconstruction in September 2018. As much as it pained me to lose my breast, I wanted to feel that I was doing the best thing to avoid the chance of the cancer reoccurring. I read over and over again where women who chose to do a lumpectomy the first time and then were diagnosed a second time and ultimately had to undergo a mastectomy.
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hello I was encouraged to get mastectomy but because we were making wedding plans our second I considered lumpectomy but my fiance now husband said which ever one would keep you here longer. I chose mastectomy with reconstruction body rejected implant expander removed wear prothesis in bras can't tell difference. Praise God I am this pass yr a 25 yr Survivor and celebrated 25 yr Wedding Anniversary. Do what you feel best for you. msphil idc 0/3nodes stage2 3mo chemo before after Lmast got married then 7wks rads 5yrs on Tamoxifen.
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Hello from one DCIS diagnosis to another,
I just met with my surgeon status post two surgeries 1/23/20 and 2/3/20 ending with pathology diagnosis of DCIS. After the 2/3 surgery, the pathology showed another ADHIS. He assured me without mastectomies my chance of reoccurence was 11% in the next 7 years.
In 2016, 2019 and 2020 I have been diagnosed with Atypical Ductal Hyperplasia in situ(ADHIS) three times.
P2016- diagnosed with ADHIS with lumpectomy. At that time I was given incredibly low reoccurance chances. (HA)
2019-2020-diagnosed ADHIS with lumpectomy1/23/20 pathology- DCIS
2/3/20- another surgery to widen margins
pathology - clean margins with exception of ADHIS found on new margin.
His recommended course of treatment was radiation and tamoxifen. However after three surgeries and worsening diagnoses I was frustrated that I was not given better prognoses. He was unable to assure me that radiation and hormone therapy would give me better odds of never having to have another lumpectomy.
I have recently met with the oncology radiation doctor, was given the risk factors, because my DCIS is in left side, there are lung and heart radiation risks. Long story short choices are mastectomies with no further treatments (no radiation/ hormonal therapy tamoxifen) vs radiation and tamoxifen with side effects.
I opted to have double mastectomies at 63 yrs old my breasts are just a continuing ball and chain around my neck.
Information I used to make my decision:
IE: radiation side effects
Hair loss on affected side, lung lesions, heart disease with possible heart attack.
Too much of a risk factor even at the low probabilities they quoted me.
Tamoxifen side effects
Heart disease possible, stroke, embolus to lungs.
Risk factors are more than I am willing to chance especially because with diabetes I already carry a higher risk factor for heart disease and stroke.
I had not met with medical oncology doctor prior to this decision, however I did extensive research on tamoxifen.
For me deciding to have double mastectomies seems the lesser of two evils. How many more lumpectomy surgeries would I have to undergo now and or after radiation and Tamoxifen therapy. To many questions that I could not be guaranteed would not happen or would not decrease my quality of life. I felt this decision was an easy peezie no brainers for me.
I hope my ramblings have helped you. I feel I chose life over more chronic life threatening choices.
Best of luck to you in making the right choices for you.
God bless.
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Although this is not an answer to your question, I've also wondered why mastectomies are choosing over lumpectomies. From the research I've gather the results are the same. Opting for a mastectomy does not guarantee cancer will not coming back. But you can have reconstructive surgery if you do. Great question, though. I hope someone will give some insight on this matter.
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Thank you, Valerie. I'll look at my DCIS treatment a little differently now.
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I had DCIS 12 years ago. The lumpectomy did not produce clear margins and DCIS was high grade. I opted for the mastectomy with DIEp reconstruction. The pathology report after my mastectomy found a small micro invasion. At the time I was considering double mastectomy but decided against it.
Well recently they found IDC grade 1 1.6 cm in my right breast with negative nodes. I had my lumpectomy and am still waiting for the pathology results hoping for clear margins that should be easier to achieve thanin case of DCIS. I am seriously considering another mastectomy just to be done with it: no more mammograms and biopsies. My first one went very well so maybe that’s why I am leaning this way.
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my invasive ductal cancer to start in left. I opted for double mx due to several biopsy on right in the past. turned out I had cancer in both breast wound up final diagnosis invasive mammary. six month after final reconstruction I am scheduled for another biopsy. I was stage 1 grade 1 and 2 last year. Hoping this knot turns out to be negative sitting just right of my left implant. had ultrasound today Bi rad 4, Back to the hurry up and wait game. Hope all of you come out of this with no recurrence.
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Hi All. I chose the lumpectomy/radiation route because my DCIS was only in one area of my breast (lower/underside) and nowhere else, and I also tested negative for any cancer mutations on a 67-gene panel. If either or both of those things had been different, I may have opted for mastectomy. Mastectomy seemed very drastic to me for what it was, and there's very little distortion to my breast from my excisions (had to have three total). I start radiation (4 wks.) in a couple weeks on July 2. Hope this is helpful!
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Hi, all, I had my DCIS treated two years ago and would like to share my thoughts.
When I was first diagnosed, I did a lot of research on DCIS and felt strongly that it is being overtreated. However, did I want to take a chance? Of course not.
Since my DCIS involved my nipple, which had to be removed whether I chose lumpectomy or mastectomy, I chose mastectomy. Also, as a benefit, I needed NO hormone pills or radiation by going that route. When my doctor first presented me with my options, I was horrified at the word "mastectomy". Like many, I felt that was a drastic option and a road I did not want to go down. The doctor even presented double mastectomy as an option, and the benefits for going that route. I thought she was out of her mind. A double mastectomy as an option for something that odds are would never turn to cancer? So naturally I sought a second opinion. It was confirmed the nipple would have to go, along with 1/3 of my breast. At that point, a mastectomy didn't sound so much worse. So I went along with mastectomy with breast reconstruction.
However, while waiting the required months with the tissue expander, I found I just did not like the psychological feeling of a foreign object in my body. I informed my doctor I wanted the expander removed and no reconstruction. But now I am faced with always having to wear my fake boob, so as not to throw my spine out of whack due to more weight on one side. It's not the end of the world, but I wonder if the double mastectomy would have been so bad after all. I lost one, what difference does it make? As of now, I have to get a mammography for the whole breast and see a breast surgeon for the mastectomized breast to be sure of no new growths. That's another thing I was not aware of -- you need to see a breast surgeon for preventive checkups with a mastectomy.
Anyway, sometimes I feel I should have just gotten the double M, as drastic as that sounds. As anyone who has gone through this will agree, I'm sure, it takes going through the whole experience before you can really decide what would have been best for you and what would have made you most comfortable.
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Thanx so much for pulling and putting all this information together Beesie!!! I have no idea what my "new" docs will recommend. The initial surgeon conveyed I could choose either option. Rads is also not likely an option for me. I've been thinking about some of the things you listed in this lump vs. mast list. You had even more than I could've come up with at this early stage of diagnosis and pre-treatment. I believe I will come back to this list many times before my surgery date (to be determined yet) Thanks! I can see you are quite an asset on this site and very appreciated. I have come to appreciate you already - just on here a few days or so!
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Again, Beesie- You are so wonderful! Thank you for this!
-Renbird
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I chose a BMX for the simple reason on grade 3 along with not wanting weeks and weeks of radiation.
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I made the decision, just over a week ago now, to go with BMX vs. lumpectomy. I have DCIS, Grade 3 with comedo-necrosis and 2 foci on biopsy. The area is also 4.8 or 4.9 cmx2.8cmx1.8cm. I am not able to have radiation due to having scleroderma. All docs were in agreement with that. I am also ER+ at 2% which is more like negative. So that left with me with mastectomy. My BS was clear that no 58 year old woman could have a lumpectomy without radiation. Though I had made my mind up about BMX days before talking with my BS for the first time. I've also lost both my parents and three siblings to various cancers (primary brain, lung and kidney). As I've said before I am large enough that I would not be comfortable with one large breast left. I am also not a candidate for reconstruction given scleroderma and healing issues, let alone all the risks with the additional surgeries involved. So between physical discomfort and I believe emotional discomfort I would experience with one large remaining breast I decided to go flat and embrace the freedom I've heard other women talk about on this site. I imagine it will take some time to adjust though I think I will be more focused on my recovery during the adjustment. I do not believe I will miss my breasts - age, gravity and size.... I'm already buying clothes I would have never dreamed of buying before b/c I was too self-conscious...
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I decided on a B/L nipple-sparing mastectomy for many reasons. My other treatment option was 5 lumpectomies (1 for the DICS and 4 for areas of atypical ductal hyperplasia) and then radiation for any DCIS. Plus I had dense breasts and have had 6 or 7 rounds of biopsies over the past few years...I was on a first name basis with the breast radiologist, who was my rock through that stage--very empathetic and compassionate. He said my tissue was already difficult to image and scar tissue from lumpectomies and radiation would make it even more challenging and would probably lead to more biopsies out of precaution. The relief of no more anxiety about imaging, biopsies, and the future is huge for me! I also did not want to undergo radiation.
Tomorrow it will be four weeks since surgery, and I am pleased with recovery. Two weeks post-op I started being able to take daily walks which were good for my spirits. I am normally a very active person...I have tissue expanders in place which are uncomfortable and I think will keep me from returning to some of my normal activities, but that's temporary and I am grateful for what I can do right now.
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I was diagnosed with DCIS grade 3, in April 2021, have had 2 lumpectomies, both times they found DCIS in the tissues removed. The surgeon is recommending I have another lumpectomy to remove the remaining tissues as there is not much and she would reach the chest wall. I have been going back and forth between lumpectomy and mastectomy, not sure which decision would be the right one. What if I have the third lumpectomy, and they find more DCIS, do I have to do a mastectomy after that?
Thank you for any help or advise youl can offer.
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Welcome, AwesomeR! We're bumping this thread so that hopefully someone experienced will come and give you some advice. Thank you all in advance!
The Mods
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AwesomeR- I don’t have the deep technical knowledge that you will get from others on this board but I have had DCIS twice in same breast and every instinct I have would advise that you think seriously about mastectomy at this point. I don’t know whether you are thinking of reconstruction but it would be better to do that when you haven’t had radiation. On the other hand, you may be comfortable with close surveillance after your lx and radiation so that you catch a possible new DCIS/IDC early. I wasn’t prepared for the second occurrence at all but if you are aware that this can happen, you can just factor that into your decision. It’s a very hard decision and I wish you well!
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I am newly dx with high grade DCIS. I really need some support. Not sure where to post. Quite overwhelmed. I had to take a break from my boyfriend too because he was adding to my stress.
Sometimes he was supportive and sometimes the opposite.
I am struggling. Please could someone reach out to me .
Thank you,
Sorrel
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Hi Sorrel- so sorry you’re dealing with this challenge. The emotions can be overwhelming. Please know that you are not in imminent danger and you will get through this. Maybe make a list of your questions for your care team - There’s excellent info on this site. Then once you have your plan, focus on one step at a time. I can tell you that every part of my treatment turned out to be so much easier than I imagined. Surgeries were very easy - I was able to go home the same day for both lx and mx which was my choice. I was very afraid of radiation and that was easy as well.
Take care
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Sorrel - Welcome! You are in the right place! So glad you reached out for support..... Jetcat is correct in how supportive and informative this site is.... You can leave your post here or you could begin your own in the DCIS forum.... whatever you're most comfortable with. Sorry you're getting the back and forth with your boyfriend! We are here and I hope others will respond yet too.... Please feel free to share your thoughts and feelings in other threads your reading b/c that can be therapeutic too. Do you have info yet on ER or PR positive or negative, size, comedo necrosis or not, when you meet with a surgeon, etc. Check out the surgery forums too - June even if your surgery ends up being in July, etc. These forums were invaluable to me in the very early days. Jetcat is right that once you know more about your DCIS and have a plan things get much better - you just follow the steps....
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I had a bmx 5 1/2 years ago and have been cancer free since. I was diagnosed with a 6 mm DCIS, grade 2 with clean margins. I never considered anything other than a bmx because I believed there was more cancer than the scans showed. Also, I didn't want to take radiation or hormone suppressants. I wanted a bi-lateral because I wanted to be done with this, once and for all.
The pathology on the bmx discovered that I had several small areas of dcis and lcis in both breasts that the scans had not shown. I know this is going to sound odd, and you don't have to believe me if you don't want to, but I already knew they would find that. I had told my husband and all my friends that there was more cancer. I'm not sure how I knew, but I knew it. I've never been more certain of anything.
I'm very glad I chose the bmx. I did not have reconstruction because I didn't want any more medical treatment than I had to have to get rid of the cancer. All I wanted was to walk away from this clean and live on. The only thing I would do differently is that I would walk out on an obnoxious radiologist who tried to bully me into having radiation instead of a bmx against my will. I should never have put up with him.
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Hello in 2019 I went with the Lumpectomy and radiation been on Tamoxifen since July 2019... It is the worst medication I have ever had to take the side effects are a horror . Had normal Mamos and sonograms till this past week . While I was lucky that after a biopsy this week the results are no cancerous cells. I do think about mastectomy if they find something else and I have to say I would do it but would also have them replaced . These are all personal decisions and so difficult to make . At work there are 4 of us all in the same type of situation ( i work in a school we are mostly women teachers ) we have been a support for each other . One has had a mastectomy on one side and then went to have it reconstructed she says if she had to do it again she would do it the same way again . IT really helps to find support in person the hugs and talking really help !
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Reading this thread was so enlightening and touching. I've struggled to find people who have DCIS and I was finally able to bring myself to be proactive and look. Thank you to all who shared! My surgery is scheduled for April 15. I have DCIS stage zero and another spot that is DCIS with micro invasions at stage 1A. All of my factors added together have helped me make my decision -- plus my gut instinct. I'll be getting a BMX; and I really hope I feel this way afterwards. Here were the factors at play:
I am 41 and have small boobies. My family has three generations of breast cancer in every women on my ashkanazi side. I have the CHEK2 gene (which doesn't seem half as scary as BRCA, however it still made it all that much more real). The stereotactic biopsies were very, very painful. And, I wasn't crazy about the MRI experience (I had a panic attack in the middle of it). So, perhaps if one of these boxes were not checked, I would've felt more comfortable with the lumpectomy. Although I'm still scared of the surgery itself, my instincts feel so strongly that this will be the right decision for me.
I do feel that it's so different for everyone. It was very helpful to read about all of your experiences. Thank you!
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Hi, I am new to this site. I was diagnosed with DCIS in October of 2021. It has been quite the journey this year. I elected to have a bilateral mastectomy with reconstruction: 1. because my mother died at age 53 from breast cancer. I watched her for 7 years fight a hard battle, but the cancer was stronger. I refused to go through what my mother did. 2. I am not one to put chemicals of any kind in my body if I don't have to. So removing the breasts meant I would not need to have chemo or radiation or take the drugs for several years.
I did a lot of research and I had genetic testing done before I made my decision. A lot of breast cancer diagnosis that are treated with lumpectomy and treatments seem to have a recurrence within 5 or so years. I did not want to deal with this again, having the anxiety every year when I went to have my mammogram if this was the year it would return.
I am 62 years old and will be retiring soon. I don't want my retirement years to be spent at doctors offices and hospitals.
I had a great experience with the bilateral mastectomy, done in March of 2022, however the next evening after the surgery I developed a hematoma on the left side and had to go back into surgery to remove it. Then as I recovered at home, my right side (with expander) had an infection that would not go away. Ended up having the expander removed in April. Then had to wait until July to have an expander put back in. Have been getting along well since then. Am ready now to have the permanent implants put in. That is scheduled for October 31.
Praying that I recover quickly and feel more like my old self. At least there will be NO DRAINS this time!! They are the worse.
Will have my nipples tattoed on, plastic surgeon says I have to wait 3 months for that. Will be so thankful to come to the end of this journey. I have tried to remain positive throughout and my family has been wonderful.
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