lumpectomy vs mastectomy - why did you choose your route?
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Hi chapa:
Welcome, and thanks for sharing your thoughts and experience. I am sorry that there were some positive margins, and you are now facing further surgery. You will find a lot of support here.
Perhaps I do not understand what you wrote: "Fortunately the lump turned out to be benign but the calcification was tagged 4mm invasive DIC when presence of DCIS in milk ducts."
If you are saying that you had a definitive diagnosis of IDC (invasive ductal carcinoma, estimated Stage 1, grade 2) by biopsy, then even if no additional IDC was found in the lumpectomy, the initial presence of IDC controls the diagnosis and current staging. If IDC was present, you were not Stage 0 either initially or currently in my layperson's understanding.
All findings from biopsy and lumpectomy plus sentinel node biopsy are ordinarily considered, and these will be taken together with the information from the pathology on mastectomy tissues for the purposes of determining actual stage.
I have no medical training, so please ask your doctors for clarification of what is currently known about your stage, based on the biopsy and lumpectomy plus sentinel node biopsy findings as a whole.
Please be sure to request an explanation of the ER, PR, and HER2 status of any IDC that was found by biopsy. When IDC is present, the features of the IDC will control treatment decisions, and the consideration of chemotherapy and/or targeted therapy and endocrine therapy in the appropriate case.
Best,
BarredOwl
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I found this research helpful and as well, my doctors explained I could always get a mastectomy if I changed my mind. Given my tumor was in 6pm location and deep, I had a good cosmetic outcome from lumpectomy and never pursued more tx. To me, less was more and I wanted to avoid risk of infection etc. from a more invasive surgery. Good luck with your decision.
See the below study link and quote...
"In fact, the new study suggests that in a group of 112,000 women, those who had lumpectomy plus radiation therapy survived longer than those who underwent mastectomy."
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I was diagnosed with DCIS on October 23, 2016. Like all of you, my world turned upside down. I made my decision to have mastectomy with reconstruction. Some of the reasons I made that choice were that I am young and healthy ( except for cancer)! and could recover from a mastectomy more quickly. I am small breasted and figured if a lumpectomy was done, I would be left with nothing anyway and I've read that radiation can damage the tissue making reconstruction more difficult. I also felt that if I had the lumpectomy and the margins weren't clean, I'd have to have the mastectomy anyway. For me, this decision was easy, but I still did my research anyway. I felt like I made a very informed decision and am very happy now with my choice. Recovery from mastectomy is no joke, it took me about 5 1/2 weeks to feel somewhat like myself. Today, I am still waiting for my exchange surgery. My life is different now and I am working on getting back to "normal" but it will never be as it was. I feel as if I was forced to join a club that I wanted NO part of but since I've joined, I have discovered that I am strong and life has taken on a new meaning. Everyone is different and making the choice between lumpectomy and mastectomy is not an easy one. No one can tell you what you should do. You have to make the choice for yourself an no one else. The advice on this forum and the experiences of all of these wonderful and brave women helped in that process. To all my new sisters out there, keep fighting and be brave!
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Hi all,
I am new to all this - recently diagnosed with DCIS after my first mammogram at 40 yrs old. I am very much struggling to make the decision between a lumpectomy and mastectomy. I keep going back and forth, waking up in the middle of the night with it on my mind. Very happy to have found this forum and all the great info being shared!
I'm curious for those with larger Grade 3 DCIS areas (mine is 5+cm comedo necrosis) , what helped you make a decision and what were your experiences with the outcome?
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Hi krise,
I struggled just as you are now. It's not an easy choice. My surgeon explained that with either procedure the chance for it returning were exactly the same. I felt even more confused! I met with everyone I possibly could to discuss my options. Almost everyone thought mastectomy was the better choice. I was also lucky to have close friends who had the same diagnosis years ago and one had a lumpectomy with radiation and the other has a mastectomy so I had both sides to go to with questions. My gut always said mastectomy but again, I wanted to make a very informed choice. Do your research, talk to your providers and you will be surprised at how many women either have gone through it or know someone who has. I see that you are young...ask yourself how you will feel in 10 years if it comes back and you end up with a mastectomy anyway? Recovery at 40 is easier than recovery at 50. Those were some of my reasons for choosing the mastectomy. I also knew I'd be really mad at myself if I went through the lumpectomy surgery and had to go through another surgery if the margins weren't clear or if it came back in 10 years. It's truly a gamble, but I am glad that I chose the mastectomy. My recovery was a bit harder than I expected but if I had to do it all over again, I'd make the same choice. I hope this was helpful, no one but you can make the choice, but just make sure you get enough information and think about how you'll feel with your decision. Best of luck to you.
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Hi Kruse, I was diagnosed with 20mm high nuclear grade DCIS in February after a routine mammogram, I am a very active (and like to think young) 61 year old. I decided to go down the lumpectomy route followed by 3 weeks of daily radiotherapy. I had the lumpectomy on 4th March but then had to have a second op on 23rd March. I got the results of that op on 7th April. My surgeon took another 20mm as she thought the tissue looked and felt grainey.
Th upshot of that is that the sample was full of DCIS and I now have to have a mastectomy. I now have to make the decision on what type of reconstruction I want - I am having this done at the same time.
On saying all that, I don't regret my decision to have the initial lumpectomy. I wanted to try that first as I felt that a mastectomy was a radical major surgery that if I could possibly avoid, I would. It didn't pay off for me, but I think thankfully I am the exception rather than the rule.
Not sure if that is of any help to you, just one story of many. I am sure that you will make the right decision for you, just gather all the facts. I know it's hard to try and make an objective decision at such a time of emotional turmoil.
I am lucky in the fact that I live in Sheffield in England where we have 2 of the best teaching hospitals that have a fantastic cancer research and treatment centre; so I don't have to consider insurance, cost, finding a doctor etc.
Good luck with everything,
Carol x
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I was in your shoes 10 years ago. After reading the posts from women that had a lumpectomy and radiation talking about recurrence n the same breast or the opposite in a matter of a couple years I opted for bilateral mastectomy. I had to fight for it but I am so glad I did. Centinal nodes were clean and I had no other treatment. It was a very high grade tumor so I did not take any chances.
That's how it was for me. Good luck and Go bless
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Hi Krise,
I was diagnosed with Dcis in December 2015.
My first mammo was September of 2014 at the age of 42. A couple weeks after a "clear" mammo I had nipple discharge. I went for several ultra sounds and also had biopsy that came back benign but was still having discharge. First dr told me it was nothing, second doctor told me the same thing. After still not feeling that this was normal found a third Doctor that insisted on taking the duct out immediately in April of 2015. At that point came back with adh bordering on dcis without clear margins. I had to go back in to have more tissue removed to get clear margins for adh two weeks later. I was then place on the high survellience schedule and in October had to go on for follow up mammo. I knew once they put me in the "waiting room" to talk with radiologist that something wasn't right. Mammo showed large area of calcifications that would have to biopsied. Results were DCIS. I was given choice of lumpectomy (to take out large area of calcifications) with 6 weeks of rads or bmx. Due to large area that would have to be removed they could not rule out that I would need some reconstruction after. After meeting with ps, mo, ro and surgeon I decided on nsbmx.
I was also tested for brca and it came back that I had 2 mutations to brca 1 gene so that basically reinforced my decision. I was also not advised to take tamixifen due to a strong family history of uterine cancer. I will also be having a complete hysterectomy in the future once I am done with all my reconstruction.
I am now 5 days out from my exchange surgery and starting to feel like my old self.
It is a very personal decision to make. I wish you the best in coming to the right decision for yourself
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After extensive research, upon my own diagnosis of DCIS Stage 0 - High Grade - Alleged 2.8 cm area -- I feel strongly that High Grade DCIS Stage 0 should be placed in a separate diagnostic category. All of us are faced with the dilemma of how best to treat. Lumpectomy? Mastectomy? Excisional biopsy? Reconstruction -- when and how much? Radiation -- and how much? And if your DCIS is treatable with drugs (which mine is not) you have that decision to make, too. So here goes... I have seen 4 breast surgeons and sent my path reports to Dr. Lagios and also saw Dr. Shelly Hwang at Duke, one of the most progressive researchers on DCIS. Her recommendation on high-grade DCIS is totally different from her "wait-and-see" attitude toward Grade 1 or 2, as she advised me for MX because of a large "suspicious" area beyond my alleged 2.8cm of high-grade DCIS. She says there's a 60% chance that that area is also high-grade. Well, I'm thinking I'll opt for the 40% it is not. So now an Atlanta surgeon is suggesting that my MRI may be mistaken -- based on what her in-house radiologist says -- because it was taken 3 days AFTER my stereo biopsy and much of that area could simply be "inflammation". She recommends, because she understands how adamant I am about at least trying a lumpectomy and knowing for sure what's in that suspicious area before taking the breast off for good, an incisional biopsy of the suspicious area to confirm what's there -- along with removing my nipple because I have Paget's Disease of Nipple (which is what started me on this journey to begin with). She also says it appears the known DCIS is in only one duct so a lumpectomy may be all I need. Now I'm wondering, how accurate is the estimation of the size of the known DCIS area? Is it based on my biopsy, my MRI, my mammogram or all three? Anyone else opted for an incisional biopsy to confirm imaging? And by the way, she is the ONLY surgeon who seems to understand me; she said, "Ellen, I know you are the kind of person who would be devastated to find out that you didn't have cancer after having a mastectomy." Still, I understand the decisions of women who agree to MX straightaway from similar diagnoses.
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I really have no new information to add. Received a DCIS DX on March 11th. BS gave me the information, probabilities, really left the total/partial decision to me. I had a large area--8cm x 6cm x 3.3 cm excised, but when the MRI showed there were no other areas and nothing in the other breast, going partial was an easy decision for me. I had one small margin after the first surgery so had another four weeks later to clean that up. Second pathology report was all good news. I'll start radiation in a few weeks (which I also had to be talked into--my tumor was nuclear grade 3, and E and P receptor negative, so tamoxifen-type drugs will not be available to me--I was quickly convinced by my RO that I was at higher risk for recurrence than some).
I must say part of my decision had something to do with knowing my history/body. My mother had what was probably the same diagnosis (she does not remember specifically but was told years later that she would have had a lumpectomy rather than the mastectomy she had if she'd been diagnosed then) but is doing great at 87. I had ALH about five years ago and thought then, "I bet something comes back at some point, but I am not going to die of breast cancer." I do not have a strong history of any kind of cancer in my family, so I just don't see it going that way.
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Without a strong family history of BC, I would have felt really good about choosing a lumpectomy + radiation for my DCIS. I think it's a solid option for many. I'm going the BMX route due to being in the high risk category, as all close female relatives on my mother's side have had breast cancer young (in their 30's and 40's) and experienced recurrences. My grandmother also had a recurrence after her BMX. Watching my mom struggle through her second bout was enough to convince me that if my time came I would opt for aggressive/preventative treatment. Best wishes to all on your journey!
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beesie i just read your old post and its like you're in my head. .....in a good way. I feel like I'm trying to grab onto anybody or anyyhing to give me the right answer. I've had a lumpectomy with deep margin not clear. Had second lumpectomy with deep margin still not clear. Actually said cauterized deep margin not clear. Now talking mastectomy. I didn't want this. Started out with breast sparing to talking bmx. I don't want to be constantly monitoring my good right breast that already has lots of microcalcifications. I'm small chested. .a cup. I'm 47 and Never wanted implants. I'm just so unsure what to do. Was very confident with my first decision and now I feel completely lost. I wish I felt sure about a choice.
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Kaycee3 what made you decide to only do one breast. I'm also small breasted. Went on for lumpectomy with unclear margin. Went in again with unclear margin. My breast is sunk on at the top . Now they want mastectomy. Bmx for safety. Now trying to figure out what to do
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I struggled with the decision and decided that I'd do lumpectomy one time but if they found any concerns I would go right to mx. I had close margins and took that as a sign that I should do mx.
I am very happy that having the mx allowed me to skip rads. I know that isn't always the case.
Have you consulted with a plastic surgeon yet? Knowing your reconstruction options is a big help. Sometimes, if you only want small mounds, you can get a good result with just fat grafting.
Good luck.
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Debiann I meet with ps June 2. I looked at your dx and saw you had your other breast done May I ask why? Did they find something later? I want to thank you for responding
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I went with a double mostly for symmetry. I wanted them to look and feel the same. My original parts were rather saggy. I could have gotten a uni and a lift to the good one to try and match them, but I figured if I'm going through all that I might as well get them both off and skip the future mammograms.
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OKBecca I so appreciate your post. I went on dcis4 11 website and it made me upset. Then that website sent me to dr laura esserman. Whom by all means seems to be very knowledgeable about dcis and it made me confused. I also questioned the wait and see (both of their theories ) Waiting freaks me out . Your post spoke to me. Thank you
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debiann I'm debating on bmx. I'm meeting with ps in June. Mx on left is a given. No choice. I'm so glad your happy with your decision. I'm hoping to get to that point too but now just sad
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It is sad. I'm so sorry for you. It's the loss of body part, that can't be taken lightly. You will grieve the loss, but time is a great healer.
What helped me was to put it in the proper perspective. I thought of all the things I could lose: an arm or leg, my vision, a child, my spouse, my house, my job, ect.... and guess what, my breasts were at the bottom of the list, even after my job, which I don't even always like. I'm just too old to be looking for a new job, lol.
I also look for inspiration in others. Military or accident victims who lost much more and remain productive and positive. When I see a photo of a young solider running a race on artificial limbs I think "how can I complain about my breasts?"
I look forward to the day they can cure this disease without mutilation!
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debiann .that is a great perspective. Your right. I'm actually worried about losing my job as it is. I've taken off 2 weeks for lumpectomy then another 2 weeks for the other lumpectomy. I'm an lvn at a skilled nursing facility and pts are heavy. I worry if after my bmx I won't be as strong. Also worry about taking more time off. I'm not a spring chicken myself. My husband says my job is the last thing to worry about but we live paycheck to paycheck and it IS something to worry about. Of coarse I do worry about everything. Trying to figure out how to stop that. Lol. Thank you so much. You've really helped me a lot
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In regards to your post:
"In fact, the new study suggests that in a group of 112,000 women, those who had lumpectomy plus radiation therapy survived longer than those who underwent mastectomy."
Just to clarify...
The sample group was divided unevenly... 55% lumpectomy to 45% mastectomy. They all had Invasive cancer...not DCIS. 65% of the lumpectomy sample had stage 1. 56% of the mastectomy patients were stage IIa and IIb. 76% of the lumpectomy were node negative vs 64% of the Mastectomy >
So, they sampled an uneven group with a larger sample of lumpectomies, most of the lumpectomy patients had a lower grade and no node involvement vs. higher grade and node involvement in the mastectomy set. I feel a proper analysis would compare those subsets apples to apples.
With DCIS there is a 1% recurrence rate after mastectomies. I believe lumpectomy without radiation is 30%, and with radiation recurrence risk is 15%.
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Well, I just finally made my final decision to do BMX after Dx of DCIS in Rt, Grade 3, ER+/PR+. I was told the standard route would be RADS and Tamoxifen, and sent to RadOnc and MedOnc. BUT.... for me the situation is a little different because of the following:
1) Direct Family History - mom diagnosed with DCIS at 43 (same age I am now) and told to do Lump/RADS, but then invasive was found 5 months later in the same breast. By the time she had the Mast and started Chemo, it had metastasized to stomach and brain, then she passed away at 45. That's a tough family history to shake off.
2) I was advised by 2nd opinion that Tamoxifen was not a good choice because I have Adenomyosis (thickening of the uterine wall with benign polyps, fueled by hormone imbalance), which could be complicated by the Rx - it's not really known.
3) I already have implants, which along with my breast tissue would most likely be damaged by the RADS and there's a chance I would end up needing/wanting it to be reconstructed if it becomes disfigured - which won't be as easy after RADS I'm told. (Not to mention the implants being damaged or encapsulated would make future detection/screening more difficult than it has been so far - and it has been a pure nightmare!)
So, even though my genetics panel came back all negative, I'm told I am considered to be at a higher risk of developing invasive down the road (esp with that high grade), along with these other 'complications'. I am only 43 with three kids and a husband. I don't want to be looking over my shoulder for the rest of my life, or make decisions now that will complicate things later. I have 1 Dr. who thinks the BMX is overkill, and 1 who thinks it's the best decision for my case. I agree with the latter, but am so terrified of making the 'wrong' choice.
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I just got my diagnosis and because I have more than one area involved my doctor recommended a mastectomy and I've opted to have both breasts removed.
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I'm also at loss where I'm now and what to do next. I was originally diagnosed with 3 cm high grade comedo DCIS via mammogram. My surgeon did not prescribe MRI because, according to him, it's inconclusive, and can be used as a reference point at that time. He did a lumpectomy, removed a 5.5X5.6 cm chunk, on which posterior and lateral margins were positive, at least 4 cm DCIS cut out. He then cut around it, cleared the lateral and posterior, but a new, superior margin, that was originally clear, showed DCIS. Second lumpectomy: he cut what was a superior margin, removed 4.5X3.5 cm chunk, re-excised other margins again. Got microscopic involvement in superior, closed margins for lateral, and negative for deep and inferior. DCIS span 4.5 cm in addition to the original 4 cm thread. My breast aren't big, so he removed about 30% of the left one already. I think that a mastectomy is inevitable. I also suspect there is more junk in other segments. Since my both breasts were hurting equally for years, quite possible the other may have DCIS as well. I have dense breasts, but not extremely dense, some parts are visible under x-rays. I also have one big uterine fibroid (about 8 cm) and many small ones, so tamoxifen is no good as it's an agonist for them, although I may consider a total hysterectomy. I was exposed to the nuclear fallout after Chernobyl disaster, which, I think does not make me a good customer for rads. Despite all that, my surgeon really wants to do a third lumpectomy and rads despite of the fact that we agreed before the second lumpectomy that the next step would be a mastectomy with SNB. He also tried to convince me that tamoxifen is OK.I asked for a break, and requested an MRI to see if there is more junk in both breasts. So, here I'm after two lumpectomies facing other boipcies and surgeries. When will it end????
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Dragonsnake:
I am wondering if your case needs fresh eyes and perspective. Perhaps consider a second opinion re next steps, including a review of all pathology and imaging to date, as well as input whether your prior radiation exposure ought to be considered with regard to extent of surgery or radiation, and how potential limitations on endocrine therapy choice may play in.
If you can travel a bit (e.g., coverage permitting, in-network) you might consider UCSF or Stanford. Ultimately, you can still be treated locally, if you prefer.
Best,
BarredOwl
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Dear Owl, this is what I'm working on. I'm trying to get the UCSF Breast Cancer center to review the slides. I'm already in a process of getting a second opinion from one of their best doctors, although I'm skeptical that she would personally review my case. I'm also trying to get an MRI and get approved for more biopsies, if necessary. It's difficult so far, but I'm working on it.
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Hi Dragonsnake:
It is a lot of work, but it may shed light on things. At least you will be as fully informed as you can be.
Everyone is different and my situation is not common, but in my second opinion, some subtle microcalcifications in the opposite breast considered to be of no concern by the first institution were evaluated by further mammography and biopsy, leading to the bilateral diagnosis. I had already had biopsies on both sides, and thought I had unilateral disease. When they wanted to do another diagnostic mammogram on the other side, I was so sick of the process, at first I was like "NO." I scheduled it a few days later, realizing I needed the information.
Sending positive energies your way.
BarredOwl
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Thank you, BarredOwl. With all these referrals and approvals, the treatment for will be pushed further than on month after the second lumpectomy. I'm worried sick, but I need to know what I'm dealing with. I regret of not doing the MRI after the biopsy, but doctors were hesitant to refer me to do it. They also mentioned an invasive component on one of the reports, and then crossed it out saying it was a clerical error. It's a continuing nightmare.
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I am so happy to have found and joined this forum filled with brave stories. DCIS was a startling diagnosis-out of the blue. Im a nurse, a mom and a friend of all too many pals that have had aggressive diagnosis'- after getting clear margins on lumpectomy I knew mentally I would be better to see my good fortune as a lottery win and my fear of recurrence as an obstacle. I had the bilateral NSM and have not looked back on that decision. I have been lucky and happy so far with the reconstruction process. We all make the best decision we can for ourselves at a time when we are quickly trying to accept and understand. Grateful for the family and friends who supported me in my fear and in my decision. The way I look at it- is grateful that it was found, grateful to have had choices, grateful for a chance to look after myself better and to appreciate every moment more than I ever did. Ive met some wonderful people on this path. Birds of a feather. Scheduled for exchange surgery in one month. Tear drop gummie bear implants. Its all been a fast ride, and its surreal. But I feel stronger than I ever thought I could be-do we all feel that way? Love to all
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I was diagnosed with DCIS in December 2015. At the time, the story was that I had one tumor, 6 mm, and no other signs of disease. The docs did just about every bit of bullying they could legally do, to get me to have a lumpectomy, followed by radiation and long-term hormonal therapy. I still the radiologist telling me angrily that "if it comes back, we can treat it."
He really didn't get that his "treatments" were not the way of life that I wanted.
I also remember an oncologist telling me in a rather disappointed voice that I would not need any further treatment if I had a mastectomy. She tried to scare me with stories about post mastectomy pain.
However, when she told me that a mastectomy would free me of further threatment, she made up my mind. I didn't want to be a chronic cancer patient for the rest of my life, and I certainly did not want this thing hanging over me like the Sword of Damocles. Contrary to the docs' view of things, I think being free of them is a better future, if you can get it.
I wanted out of this cancer box and the oncologist had accidentally shown me that such a thing was possible. I ended up going to another surgeon to have a double mastectomy, which I had last March 7.
I've heard that people who are injured in war refer to the day of their injury as their "alive day" because that is the day they survived. I feel that way about March 7. It was my alive day.
It wasn't a piece of cake, having a bmx. I am glad, glad, glad that it's in the rearview mirror. But I would do it again in a heartbeat. It was my best chance of kicking the cancer to the curb for the rest of my life. it freed me from radiation, hormonal therapy for up to 10 years, and, what has turned out to be the likelihood that the cancer was going to come back.
The pathology report after the bmx showed that I had numerous tiny occurrences of dcis throughout my breast that the scans had not found. I also had lcis, and widespread atypical ductal hyperplasia in the other breast.
I suppose the radiation might have stopped the cancers in the breast which had the diagnosed dcis. But then again, it might have set it off and pushed it to go wild. At least one of the tiny tumors was very aggressive. As for the other breast, I imagine it was a time bomb ticking. Would the hormonal therapy have stopped it? Who knows? But, I doubt it.
Since I had the bmx, I cancelled all these threats with a surgery and set myself free.
I don't know if I'll see the cancer again, but I took my best shot at freeing myself from it.
I am very glad I ignored those bullying docs and followed my instincts. It was my own life and body, and I was the person who was going to take all the consequences. As it turned out, I knew more about myself and my condition than the docs did.
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