Urgent Help! Mastectomy vs. Lumpectomy and Radiation
Hello,
I'm new here. I am struggling with a surgery decision. I am scheduled for a double mastectomy next week. I've had a lumpectomy (April) and a re-excision (May). I just finished chemo a little over a month ago (TC x 4). First oncologist wanted ACT x 9, but Stanford tumor board said TC x 4. I was diagnosed in late January, had delays in care because doctors didn't know how invasive it was. First surgery two months after diagnosis. I have a high oncotype score (43) and a micrometastis in two lymphnodes on the right side (right breast cancer). I'm 44 years old. Tumor was heterogeneous. 1st surgery: 30% ER+ 5% PR+. 2nd surgery: 90% ER+, 0% PR. This seems worse (ER+/PR-). Grade 2, Stage 1B. HER2- and negative on all gene testing, though my aunt and cousin both had breast cancer and were HER2+. I didn't have clear margins w/ the first surgery, did with the second but "very, very narrow." First surgeon recommended re-excision w/ mastectomy, tumor board at Stanford said not necessary because margins are clear according to clinical guidelines, though technically narrow, but up to me. I don't WANT to have this surgery, I'm scared but more scared about dying. I don't know if reducing my risk with a mastectomy is worth all that comes with it, or if it's even too late to help. Any guidance, experience, help would be greatly appreciated. Thank you.
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dolldancer,
I’m sorry that you find yourself in this position.
Medicine is not perfect and breast cancer is a much more complex and variable disease than most people realize. Although there are now well over 30 genetic mutations, besides BRCA, that can be tested, the vast majority of bc cases, about 80%, arise without any known genetic mutation. Folks are often surprised by this because there seems to be a common belief that most bc is due to BRCA or some mutation.Whether one is stage 0 or stage III, bc can come back (another thing that surprises folks) there is simply no way to guarantee you won’t recur despite treatment . When you say you wonder if it is too late to help, I question why you say that as you appear to be stage I. Most stage I folks are treated and go on to live happy lives. Do some recur? Yes, there is no tool to predict who they will be, but most do quite well. Is it possible that some stray cells have left the breast either via the lymphatic system or bloodstream? Yes, but again, there is no way to know this. What I’m trying to say is that there are still many things we don’t know about bc, yet great progress has been made in treatment and even survival for stage IV folks like me.
Medicine is open to differing tx recommendations as doctors read and interpret research they receive. Although there are standards of care, there is also room for doctors to tailor treatments based on the individual (which is a good thing!). Ultimately, you will need to decide if you are comfortable with a bmx and which approach you are personally most comfortable with. However, neither approach can guarantee against recurrence and in most circumstances, both are considered reasonable treatment options.
Take care1 -
Wow, I am so sorry you are going through this! I think sometimes it is much more difficult when the answer isn't clear.
I had a lumpectomy, a re-excision with dirty margins, then a mastectomy at my surgeon's urging. And there was not a single cancer cell found in the mastectomy specimen. It wasn't the surgeon's fault - he is wonderful and carefully considered his recommendation. It's just that sometimes there is no real certainty,
I have a few questions. Is it the surgeon who is recommending a mastectomy on both breasts? As far as I am aware, there is no evidence this confers a survival benefit especially with small tumors and if the patient receives hormone therapy, which I presume you will. And did s/he consult their tumor board, or it was their unilateral opinion?
We are so vulnerable in this journey, and if you have had a good relationship with your surgeon it is natural to trust their recommendation. But surgeons do surgery. That's where their focus is.
But mastectomy is a huge decision and you are clearly not comfortable with this plan. Is there a tremendous rush to get this surgery done next week? Can the surgeon give you stats on exactly why they feel a double mastectomy is a better plan?
Finally, you've clearly done your homework on your tumor status, and I understand how frightening all this is. But don't give up! And trust your instincts. If the tumor board at Stanford makes more sense to you, don't be hesitant to cancel or postpone the surgery. It is absolutely your right.
Whatever your ultimate choice, I very much hope you come to a decision you are comfortable with.
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Thank you so much for responding. I am so sorry for your cancer situations, and am so sorry for your stage IV situation exbrnxgrl. Your attitude is inspiring.
To clarify: The surgeons have not recommended bilateral and have clarified that a cancer in the left breast would be a new cancer. I was concerned about symmetry and prevention. But the first surgeon expressed concern about what was being captured on imaging as more invasive cancer was found in the second surgery after none had showed up on imaging. His note expresses wanting to check the left lymph node if I opt for more surgery, but Stanford says this isn’t necessary. I feel like if I have the BMX and no cancer is found, I will be regretful that I maybe cut off my breasts for no reason. But it does seem like recurrence is high for lumpectomies vs mastectomies especially for people who had a positive lymph node. Plus, I’ve yet to meet anyone with as high an oncotype as me so the 35% chance of recurrence with this scares me. It goes down to about 15% with chemo and hormone therapy, but of course this is distant recurrence which is also of course what matters.
As far as time- I feel like delaying is not what I want to do. I want to decide on either moving forward with a MX or BMX or to the radiation step. After the delays with my first surgeries from when I was diagnosed, I don’t want to delay again and regret it.
They’ve also said I will need radiation with or without mastectomy, which is why I didn’t do it in the beginning. And the plastic surgeon had said having a mastectomy after radiation is problem-filled with high risks and no symmetry possible.
Thank you again.
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@dolldancer, we're sorry you have to be here for this, but wanted to say welcome! As you can already see, this is a wonderful community, and there's always someone here to offer support, share experiences, and provide guidance when you need it most.
Besides the helpful responses from exbrnxgrl and ratherbesailing, here’s an article from our main site that might offer some clarity as you weigh your options: Mastectomy vs Lumpectomy.
Good luck with your decision. Whatever you choose, we’re here to support you!
The Mods
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I have a higher oncotype than you, 49 and also ER+/PR-. My tumor was grade 3 and over 4 cm. I had the same chemo as you. After a lot of research I chose a lumpectomy. I did have radiation.
In hindsight I’m so happy I didn’t have either a a mastectomy. Most women need multiple surgeries to complete reconstruction, and recovery takes longer. Research indicates higher survival with lumpectomy plus radiation vs. mastectomy.
That said, it’s a very personal choice. Some want to avoid mammograms and anxiety around them. For me, I’m less worried about local recurrence than distant (metastatic) recurrence.
Whatever your choice, know that you are fully supported here. It also sounds as if you have a caring medical team.
Best of luck to you! I’m here if you have other questions.
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My surgery was an oncoplastic lumpectomy. The tumor was 3.2 cm, grade 3, ER+/PR 10% with one positive node and LVI. I had very close margins (<1 mm) which contained radial scars but there was no ink on tumor so the margins were considered clean. I needed nodal radiation anyhow and since reconstruction after radiation can be problematic I had no further surgery. My cosmetic outcome was excellent and with the lymphatic invasion I figured a mastectomy wouldn't result in better survival. I have no problem continuing with annual mammograms.
In general you should do what you would regret least if the worst were to occur in the future. There is no guaranteed way of preventing a recurrence so take the course of action that you would be most comfortable with. I hope things work out well whatever you decide.
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Four years ago, I had a lumpectomy on what I thought was a 2.7 cm Stage 1 tumor. After reading the pathology report, I was not happy with the margins (tumor turned out to be 4.2 cm). Since 3/3 lymph nodes were positive for cancer, I was scheduled for an axial node biopsy. Since I had to go in for surgery anyway, I decided to have a bilateral mastectomy with tissue expanders at the same time.
For me, it was the best decision for my peace of mind. The interesting thing was that they found residual cancer in the pathology, so it turned out that I made the right choice.
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sarahmaude: thank you for your response and I’m sorry that you also have a high oncotype. I am in the same boat about being more worried about distant recurrence than local, but was also worried about local recurrence possibly creating a metastasis if it wasn’t caught on imaging. My second surgery showed more invasive cancer and DCIS than was found that wasn’t caught on imaging, I have very dense breasts and so I am a bit concerned about relying on imaging after my local breast cancer caused a spread to my lymph nodes and I don’t want that to happen again. But not sure if an “if” is worth such a major, body-altering surgery. That’s where I’m stuck. Anyways, thanks for your info, much appreciated.
Also, I haven’t heard that “Research indicates higher survival with lumpectomy plus radiation vs. mastectomy” they’ve told me it’s the same? And that lumpectomy has higher recurrence rates? Would be grateful for any data references on this because this may change my mind. Thank you!
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Dolldancer, check out the journal article "Overall survival after mastectomy versus breast-conserving surgery with adjuvant radiotherapy for early-stage breast cancer: meta-analysis" from the June 2024 issue of BJS Open.
From the Discussion section:
The present review adds to the growing body of evidence suggesting that BCS + RT may be associated with a survival advantage compared with mastectomy for patients with early-stage breast cancer. While these findings must be interpreted with caution due to the high risk of bias associated with observational data, the consistency of findings across multiple studies is increasingly compelling. In addition to mastectomy offering potentially worse long-term survival compared with BCS + RT, mastectomy has a higher rate of complications and women undergoing mastectomy report worse quality of life than those undergoing BCS + RT, even if reconstruction is performed. Therefore, these data should be discussed and shared with all patients who require breast cancer surgery to help them make fully informed decisions about their treatment options.
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Dolldancer, what did you decide?
Every one of us has a unique experience when it comes to this journey, and the data can be all over the place—40% here, 20% there. But beyond the guidelines that doctors and medical organizations follow, there's the emotional aspect of being a patient with very real fears, like anxiety over scans or constantly checking yourself.
I was initially recommended for a lumpectomy with radiation at a reputable breast cancer center, and I sought four additional opinions. All the doctors agreed on the lumpectomy, but I ultimately chose to have a bilateral mastectomy (BMX). My thinking was, "If my breast could develop cancer once, it could happen again," even though I don’t have a family history of cancer and my tests came back negative for 80 different genes.
Well, after my BMX, cancer was discovered in areas that hadn’t been detected on scans, including in the other breast and lymph nodes. This reinforced my decision, but I know not everyone approaches it the same way. Some women take a more conservative route and only deal with complications if they arise, while others, like me, opt for more aggressive treatment up front.
I also have friends who went for a BMX two or three years after their lumpectomies because they were overwhelmed with fear during follow-up mammograms. One even experienced a recurrence in the same spot where the lumpectomy and radiation had been performed. Breast cancer is such a tricky disease, and doctors do their best based on what has been shown to work for the majority, but each patient has to decide what's right for her.
Good luck with your decision, and please keep us updated!
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I just went through the pros and cons of a lumpectomy vs mastectomy. 10 years ago, I had Stage 1A DCIS and IDC in my right breast (Her2+ grade 3+) I had a year of chemo and 33 days of radiation. It took me almost another year before I felt myself again. This July, my yearly mammo showed DCIS in my left breast. Right over my heart. Considered a "new" cancer, my BS recommended a lumpectomy with RT. I researched everything I could find to consider the best approach and I chose a bilateral mastectomy w/out recon. 1.) Genetic testing said I didn't have any of the 80 known gene variations for any type of cancer and yet I'm in round 2 of BC. 2.) I'm high grade so this is aggressive. 3.) Radiation in the left breast can cause heart damage even with heart conserving measures. I didn't want to survive breast cancer only to have heart disease later on. 4.) If additional cancer was found in the post surgery pathology, I would probably be looking at another year of chemo and radiation. 5.) Yearly mammo's would be very stressful waiting yet for another shoe to drop. I chose the bilateral mastectomy. It has been a week since my surgery. My pathology DID present with IDC along with the DCIS and it was also grade 3+ Her2+. My BS said in retrospect, I made the right choice. I know it's a hard decision to make but I felt solid with the research I did and the questions I asked. I will not be doing chemo b/c the IDC tumor was very small with big margins.
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If we only had crystal balls… sigh, the fact that we can’t see what might or might not happen down the road. The experiences of others are good to hear but have no predictive value for anyone. And a note on genetic testing; the vast majority of bc cases, about 80%, arise with no known genetic mutations. They are the exceptions but for some reason many think bc is mainly a result of inherited mutations, particularly BRCA. I have a family history of bc and belong to an ethnic group with high BRCA occurrence. My testing is all negative as is the case for most people. And yes, there are likely mutations yet to be discovered but we can’t address that until they are found.
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hikingandhorses: Thank you for your very helpful response. May I ask why you chose to do no reconstruction? I have debated the same.
I can’t thank you all enough for your time and kindness in responding to me and sharing a bit of your stories to help me in mine.
I have decided to do a bilateral mastectomy. I understand this choice in a better way than I did before, much in part to your responses and also because I was lucky to be connected with the dad of a friend who is a retired surgeon. He was “old school” - willing to spend hours explaining my cancer to me- much better than the 10-minute appointments I get with my actual doctors. I understand it so I can accept it and move forward. I believe this will help me get through it.I can’t thank you all enough. 💛
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@dolldancer I decided against reconstruction because I didn't want to manage anything foreign in my body. I know many people have had successful reconstructions but there are also a lot who have had issues and I decided I didn't want to deal with that. I asked my BS about using my body fat to reconstruct and she laughed, patting my tummy, and said "girl, you need a lot more than this to get the job done."
Even the option of using liposuction and your own fat as construction material requires maintenance as the body reabsorbs the fat. I didn't want to maintain ANYTHING along those lines. I'm 60 this year, divorced, and not in an active relationship. My choice to go flat was for me alone. 🙂 I'm okay looking down at my flat chest and saying "today's a new day - I'm good to go!"
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Hi dolldancer,
Just wanted to wish you best of luck with the double mastectomy
I was in your feet a few years back, trying to decide lumpectomy vs mastectomy for the cancer side. Also very agressive cancer that had spread to the lymph nodes (micro and macro). My cancer was very sneaky, and didn't show up in any screenings. Mainly for that reason, and given the big size of my tumor and that I didnt want repeated surgeries and second-guessing margins, I opted for mastectomy + radiation, and the mastectomy was on one side only (you can also consider keeping your healthy breast), although a few months down the road I decided to get a prophylacting mastectomy in the noncancer side, again because of the screening uselessness in my extremely dense tissue.
The comparison lumpectomy+rads vs mastectomy, showing some benefit towards the former, doesn't apply to you, since the source of the benefit comes from the radiation, which you will be having anyway, so you are covered there.
I did simple reconstruction with silicone implants, and couldn't be happier. A month after the mastectomy (plus full ALND) I was back in the swimming pool, running/jogging, etc. I am very active, and still working, and I didn't want to be 100% flat all the time, or deal with prostheses in special bras. I see my fake gummy implants not as replacement for my breasts, but as comfortable convenient prostheses that I don't need to put in and take out several times a day.
LaughingGull
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