Radiation vs Mastectomy
I am really new at this...in fact I was told Friday the lumpectomy I had the week before is in fact cancer. I'm still at the stage...what do I do next based on additional tests. I dont know how to verbalize my fears or concerns but I would like to know anyone's feelings about radiation versus mastectomy. If you had one and wished you had the other? Is the recovery for one a little easier? I'm just throwing out questions that come to mind. I would appreciate ANY input you can give me. I have read the "official" information, I would like to hear from real women who have been impacted by this...
Comments
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I had a lumpectomy, chemo, and radiation. Radiation was the easiest part of the whole thing for me. Radiation now days is very targeted and precise. Mine was on the left side, I had no problems then or later. I took one week off work after the lumpectomy, just infusion days off for chemo, and felt my energy levels returning during radiation. A mastectomy is a major surgery, with all the attending risks of any major surgery, and a lot longer recovery time (not to mention that if your breast is important to you sexually and/or self-image wise, you will have to deal with those issues as well). If you are thinking of reconstruction; that is even more time, more money, more hassle, more risks of complications etc etc.. Other people have different views and experiences, but what I did was definitely the right thing for me.
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Just wanted to add that having a mastectomy is not an absolute guarantee that you won't need radiation. With a lumpectomy, yes, you will need radiation. Depending on what they find during surgery, radiation may be recommended even with a mastectomy; so don't make your decision solely on avoiding radiation.
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Hi Cece,
Sorry that you are here. I can't respond to the radiation or lumpectomy part since I chose a bilateral mastectomy. I was offered a lumpectomy but I had little boobs to begin with but my reason was due to already having previous biopsies and did not want to go through worry of increased surveillance and a sister who had BC. I felt that with my luck I would eventually have to do a mastectomy anyway so I opted for it from the get go. No regrets. Many women choose lump and rads. I'm sure you will find much info there. I personally had no problems with recovery. I was up and out next day. No pain killers were given and I was back at work in 3 weeks.
I would look and post in the lumpectomy forum. Threads on lump vs mastectomy. Rads, etc. You will find many differing opinions, some that can sound scary but it doesnt mean your choice will turn out the same. Everyone is different. Heal differently, think differently. Wish you the best in whatever decision you choose.
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Both options are fine IF all goes well. Unfortunately, there is the potential for lingering side effects from both treatments. Search this website and you will find threads dedicated to both procedures, both the pros and the cons.
I chose bmx because it allowed me to skip radiation. For me, radiation was only going to allow me to save my breast, not my life. I could avoid radiating near my heart and lungs by simply removing the affected breast. I was not that emotionally attached to my breasts. I had them both removed because I knew I would worry about bc in the opposite breast if I kept it. I don't miss them. I did reconstruct with DIEP. The cosmetic results are great, but it took a few revisions to get to where I'm at. In hindsight, I think I could have been just as happy going flat.
But that's my story... we all have different perspectives, circumstances and reasons for choosing one option over the other. It's good we have options. There is no "right" choice, just the choice that fits you best. I feel that our doctors don't spend enough time discussing the potential risks and outcomes for either procedure, so its good you are reaching out to others to hear their stories. Eventually, your gut will tell you what is the right path for you, the path that you fear the least. Good luck.
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my mother had a mastectomy for a stage 1 breast cancer. The problem with lumpectomy is you never know 100% what is inside till the surgeon is in there. While there is no 100% guarantee with a reoccurrence the rise of a secondary bc developing is way lower with a mx. As far as reconstruction, my mom has immediate diep flap she has two more surgeries but first glance her new girls look amazing you couldn't even tell.
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I chose bilateral mastectomy with immediate DIEP flap recon. Went in with breasts and came out with breasts (and a super flat tummy). My new breasts are soft and warm and move with me just like the originals did. Its my choice whether to have stage 2 done with this type of recon (symmetry, lift, etc). Mx allowed me to avoid rads. Without Mx and if I chose Unilateral Mx instead of bilateral, I would be going for mammos and MRIs every time I turn around as part of the hypervigilance protocol. I really didn't need that added stress. My advice is to go with the choice that leaves you with the mostfeeling of peace.
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Beesie is one of our resident experts. Here is her very non-biased and informational post of the subject:
Quite a while back, I put together a long list of questions to hopefully assist anyone making this decision. We are all different in how we see these choices, so rather than base your decision on what someone else did, this list is meant to take you through the pros and cons of each option, so that you can figure out what's important to you personally, leading to a decision that is right for you.
Here is a copy of my earlier post, with a few updates and some new / more recent research upfront.
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Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many times now and have continued to refine it and add to it, thanks to great input from many others. Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term. Please note that this list is written for women who have invasive cancer (Stage I or above).Some of the decision factors are different for women who have pure DCIS (Stage 0). A different version of this list, written specifically for women with DCIS, is available in my post on the first page of this discussion thread in the DCIS Forum: 'Topic: lumpectomy vs mastectomy - why did you choose your route?'.
Before getting to that list, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research has generally shown is that long-term survival is the same regardless of the type of surgery one has. The reason that the choice of surgery doesn't affect survival is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't generally affect survival rates. There have been a few more recent studies that have however shown different results. A couple of studies have shown that survival might actually be higher for those who have a lumpectomy, possibly because these women usually also have radiation, whereas women who have a MX don't usually get rads. But another recent study suggested that younger women may benefit, in terms of long term survival, from a MX.
Here are a number of the studies that compare the different surgical approaches: (Note that a number of these articles are from Medscape, and you will have to register with them to be able to view the articles.)
April 2016 Is breast conserving therapy or mastectomy better for early breast cancer? and
August 2016 (this is another write-up of the same study as above) Young Patients With Early Breast Cancer Live Longer With Mastectomy
December 2015 Ten-Year Data: Lumpectomy and Radiotherapy Trump Mastectomy
December 2014 No Survival Benefit for Increasingly Used Bilateral Mastectomy
January 2013 Lumpectomy May Have Better Survival Than Mastectomy
Now, on to my list of the considerations:
- Do you want to avoid radiation?
If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
- Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo?
It is very important to understand that your choice of surgery – lumpectomy, mastectomy or bilateral mastectomy – will not change the recommendation as to whether or not you should have chemo, Herceptin (if HER2+) or endocrine (hormone) therapy (if ER+). So you can't avoid any of these treatments - if your MO believes they are necessary - by opting to have a MX or BMX. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen by having a mastectomy or a BMX.)
- Does the length of the surgery and the length of the recovery period matter to you?
For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
- How will you deal with the side effects from Rads?
For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
- Do you plan to have reconstruction if you have a MX or BMX?
If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
- If you have a MX or BMX, how will you deal with possible complications with reconstruction?
Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
- How you do feel about your body image and how will this be affected by a mastectomy or BMX?
A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the nipple).
- If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)?
Are your breasts and nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases, the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
- If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)?
Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
- If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs?
For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.
- Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on?
Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
- Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation vs. what it will be if you have a MX.
Is the risk level you will face after a lumpectomy + rads one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. But keep in mind that a MX or BMX does not mean that you no longer need to remain vigilant; you must continue to be checked for breast cancer. Although for most women the recurrence risk after a MX is low, anyone can still be diagnosed with a recurrence or a new primary breast cancer even after a MX or BMX. This is because it is impossible for the surgeon to remove every cell of breast tissue; some breast tissue always remains even after a MX or BMX, around the edges of the breast, or just a few cells against the chest well or the skin. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
- Do you know your risk to get BC again, in either breast (if you have a lumpectomy) or your non-cancer breast (if you have a MX)?
Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk for BRCA mutations). Those who are found to have a genetic mutation may be at very high risk to get BC again and for many women, a positive genetic test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative genetic test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist and determine if you should see a genetic counselor. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think or much lower than you think (my risk was much less than I would ever have thought).
- How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast?
Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
- How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast?
Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had? Consider as well how you might feel if your reconstruction is difficult and the results not to your expectations.
I hope that this helps. And remember.... this is your decision. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!
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Some of your decision just depends on who you are, how you handle all of this.
I chose a BMX even though I was a fairly good candidate for LX with rads. I didn't want rads and, in my case, I didn't need them with BMX. I also didn't want to have surgery on the good breast to make it match the cancerous one. And mostly - I didn't want to keep "watching" things in the good side every 6 months anymore.
I'm the kind of person that has never felt completely sure of my decision. I still wonder. I miss my real breasts even though I had immediate recon that turned out pretty good.
At the end of the day - I feel like I made the best decision for my sanity. There's really no "good" decision. They all suck. It's just what's best for you.
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well said, notverybrave. " There really is no "good" decision.. they all suck." Never has anyone spoken truer words.
It truly is what you can personally handle. I too was a perfect candidate for LX with rads, but to me, a BMX was the right decision for me. I do not regret it, and am totally loving my reconstruction.
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cece, part of the equation is certainly specific to the type, grade, stage of bc as well as the wealth of info listed above. Women could give you more relevant information for your specific situation if you would give a bit more information about your situation. If you fill in the information that you currently know in your profile, and make it public, we can see it and be more helpful. I actually chose lx, but eventually had to get mx because of additional areas of dcis that weren't initially found. So sometimes, even when we make choices, our treatment takes on a life of it's own.
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cece, I really like that list that ruthbru posted. Definitely go through that. Everyone has a varying set of priorities. Mine were what i listed below from most to least important.
For me. My mom had BC (DCIS/IDC ER+ at 59 tx with lumpectomy/rads and she refused tamoxifen). She had a re occurance bilaterally about 10 years later and chose bmx.
I was only 49 (and had a much cleaner lifestyle hx than my mom, and I had breastfed for 8 years) and was diagnosed with right sided DCIS and left sided wider spread hyperplasia that my surgeon said we were going to treat like cancer since there was DCIS in the other breast already.
I wanted to avoid Tamoxifen.
I wanted to avoid hyper surveillance (!)
I felt no matter what they did to my breasts I would be left with something that to me was not my breasts (lots of stuff around that emotionally), surgeon was recommending bilat lumpectomies/rt side rads/5-10 yr tamoxifen)
I wanted to avoid rads.
I did not want reconstruction (see above).
Then I added in my family hx.
Then I added in my genetic testing (I ended up with BRCA2 VUS) which all by itself would not have been significant, but with family history it was to me personally.
I went with BMX and made sure my surgeon know I wanted flat with no dogears etc. In retrospect I would have had a plastic surgeon do my closing. But overall things are good.
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Hi Cece, I'm sorry that you have to go through this. I chose bilateral mastectomy. I started off with abnormal mammo(micro calcification identified), then needle biopsy(ADH was discovered), then lumpectomy(when cancer was discovered).Each time, my diagniosis got "upgraded". I couldn't put myself through the constant anxiety of the watch and wait every six months. I also didn't want to go through more biopsies and waiting for the results. I wanted to avoid radiation and if possible, tamoxifen. I didn't want to have the what ifs hanging over me all the time. I usually have a tough time making decisions, but this time my inner voice was very loud. For me, I felt the more regrettable choice was to keep my breasts for the aesthetics. If you are thinking of reconstruction, it's my understanding that it's more challenging if you first have radiation. Additionally, if I had radiation and lumpectomy..and there should be a recurrence/new cancer...my only choice would then me mastectomy (because you can only do radiation treatments to the breast once in a lifetime, according to my surgeon). For the most part, my doctors were leaning toward reexcision to get clearer margins, followed by rads and meds. For me,It came down to save my breast or save my life. I was sad about the idea of losing my breasts. I did like my breasts, and it was hard to think about. But my gut kept telling me" the more regrettable choice would be keeping them." I'm glad I listened. My choice was confirmed when my pathology report came back showing more cancer in an area that was not picked up on with mammo or MRI. I do not regret my choice. My gut was telling me what was right for my own situation...and yours will too.
This is a copy of what I recently posted in another thread:
I think that each persons experience is unique. There are" good", bad and middle of the road experiences in everything in life. This is a difficult diagnosis for anyone to hear. Then we are faced with numerous decisions. We each have to make choices that we feel best suits our own individual situation. None of the decisions are easy. There is a lot of information coming at you, that now you try your best to make sense of...and that process in itself is exhausting. I strongly feel that knowledge is power. There's a lot to digest. I got copies of ALL of my reports, looked over every word, researched myself and made my (long) list of questions up from there. I asked lots of questions. There are many helpful threads on this site as well. You will be able to hear a variety of experiences that give personal perspective in addition to and aside from medical studies. I looked at many web pages and trial studies and tried to analyze all of it to come to my own conclusion. I tried to weight the pros and cons of all treatment options I was offered. I also looked at risk vs risk...short term and long term, to look at it from different perspectives. The really important point to keep in mind is to listen to your gut. After surgery, I thought that when I looked at my scars in the mirror for the first time, that I would burst into tears. When the time came, it was quite the opposite. I looked at myself, and I was PROUD. I made a decision that was exceptionally difficult. A decision I never wanted to make. BUT, I made the decision that was right for me...and you will make the decision that is right for you. I wish anyone reading this peace of mind and a smooth recovery.
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Thank you so much for responding. Like you, Ive started reading everything I can find but it helps to talk to someone who has walked the path. As soon as the reality of my sitatuon sank in, my immediate reaction was to have a mastectomy. Even now after reading everything I can get my hands on, my decision is the same. Like you said, my gut feeling is telling me this is the right path. Additional treatment may be required...ill know more Monday afternoon. Please say a prayer for me. Thanks again for your response
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Cece, I most definitely will say a prayer for you! I'll be thinking of you on Monday.
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I'm to share my experience and perspective and want to be clear that I get how personal this decision is and my heart goes out to you as you grapple with your diagnosis and circumstances. I was diagnosed with DCIS in May of 2002 and after 2 lumpectomies failed to get clear margins and the doc suggested a third lumpectomy, I said "F**k it, I want a mastectomy and while your at it, make it a double". They refused the double but I did get the a left mastectomy. Part of my decision was wanting to be done with it all and I was told if I had a mastectomy i could forego the radiation. I was a young 38 year old working mom and I wanted to get back to my life and be done with it. I was pleased with my decision. Fast forward to summer of 2016 when I was diagnosed with a new cancer in my right breast, this time Stage 2 with lymph node involvement....surgery, chemo, radiation, Tamoxifen. My only regret is not getting a bilateral mastectomy in 2002. And I'm just plain lucky it wasn't Stage 3/4.
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SusanaQ, I had to respond to your post because I too had a new primary diagnosed in my right breast 4 and 1/2 years after the left. I honestly think the more I read through posts on here, that the likelihood of getting a new cancer in the contralateral breast is WAY underestimated.
I think some of these studies need to be reevaluated to reflect that. I was diagnosed with a much more aggressive tumor that was nearly triple negative (10% progesterone receptors) that was very close to my chest wall....scary! And I was feeling like it was a slim possibility until it was diagnosed. What a shocker.
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I really appreciate your response. After reading the statistics and the story of each and everyone on here, I think I have decided to have a bilateral. The worry and uncertainty is more than I want to deal with. Ive been told is rather drastic but I feel that its right for me.
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When I was first diagnosed, I expressed to the oncologist that I was strongly leaning toward mastectomy. Her response was " I would strongly argue against a bilateral mastectomy ". She said "They"(whoever they are), viewed it as over treatment and very aggressive . She then made mention of Angelina Jolie and how she has influenced the readers following People Magazine(needless to say, I was insulted, as it was obvious by my extensive questions and research that I didn't just open a magazine and decide... but, needed her medical information still). I told her "I don't follow people magazine, but I know how I work, and I will worry." In addition to my already being diagnosed with cancer on my left side, my "prophylactic "side was heterogenerously dense(51%-75%). I said I was concerned that they couldn't effectively screen me if they cant see such a great area of my breast tissue. Continuing to discourage my decision..she said "it doesn't sound like the breast is the problem, it's your anxiety." Bet she'd feel differently if it were her body!
After my mastectomy, When she gave me my final patholgy report, she said something along the lines of - sometimes you just need to follow your gut (gee lady, thanks for your support now ). I am happy to say that I will NOT be seeing her again!
Being faced with this diagniosis is not easy. It opens the doors to making many decisions, each one leading to another fork in the road. Nomatter what you ultimately decide , just keep in mind that every tough step is one step closer to having this part behind you. I will continue to keep you in my prayers.
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My RO recommended radiation even if I chose to have a mastectomy due to my risk factors. She said it would reduce my risk of recurrence my 20%. The risk factors were:
Margins less than 2 mm
Grade 3 tumor
Age less than 50
Lymphovascular invasion or node positive (I think this was the last risk factor. It may have been tumour bigger than 2 cm. can't remember which.
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I had a lumpectomy and radiation. The radiation was frightening as I was going through it. Now that I am finished, I look back and it was actually not that bad at all. Personally, I am happy to have my own breasts, which I also had a reduction and lift (oncoplasty) at the time of the lumpectomy. All the reading I did before my final decision, and the one thing I determined, is that nothing is certain. Women with lumpectomy and mastectomy, it seemed there was no consistency as to when or if there could be a recurrence or which procedure would or would not have a recurrence. Long term, I felt that if I kept my own breasts, if my breast cancer did return, it would return to my breasts most likely. I am much more comfortable with a recurrence to my breasts than to another part of the body.
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