Lumpectomy/rads vs Uni MX for DCIS Grade 3 Comedo OVERWHELMED!!

The only advice I can give is first take a deep breath, when I first read your post I cried. I felt overwhelmed just as you do. I really did not know where to turn and did not find this site until after my treatment. I wish I had. I would get a second opinion if that is an option for you. My pre surgery diagnosis was scary and when all was said and done after the lumpectomy and slnb my diagnosis was not as bad. I was still grade 3 but no microinvasion and scant necrosis. I did have radiation because I had 2 areas of dcis but they were very close together and they got clear margins with 1 operation. From everything I have read on this site, dcis is not something you have to rush into treatment for. I had a wonderful radiation oncologist and team, they did my pre radiation setup, (can't remember what the tech term is) and they assured me that my heart luckily set way back in by chest and my lungs would have minimal if any radiation exposure as the new machines are very advanced at some facilities. There are many women on this site that are very knowledgeable about dcis and invasive breast cancer. I am sure they will answer your questions and concerns. This is my first post, like I said your dx sounded a lot like mine and your reaction also, I just wanted to try and help a little.

For what it’s worth, I was 45 when diagnosed, had Grade 2 BUT with comedo necrosis and a micro-invasion on my left side - it was a small area (the size of a grain of rice). I had a little trepidation about radiation (who wouldn’t) but was able to do them prone, which helped. My RO explained to me that with newer technology they are better able to direct the beam so as to avoid the heart/lungs. Yes, there is always a risk, but it is much less than (for example) someone who had radiation for breast cancer 20 years ago.

What it came down to was I just didn’t want to lose my breast. My mother had a mastectomy right around the time I had my initial biopsy, so I had gone through the thought process with her and knew what I wanted going in. She was 75, had 2 separate areas of cancer (both small, once DCIS and one IDC) and was offered a double lumpectomy with rads, but she’s not large breasted and wouldn’t have had much left after that procedure. I am larger, the cancer was nowhere near my nipple (if I had had to lose the nipple it might have been a different decision as sensation factored into my decision), and I am probably generally healthier, although for her age she is in great shape.

It’s been over 2 years since I finished radiation and I am happy with my decision.

Welcome Elainelav1! We're so happy you decided to join in! We know you'll find lots of answers here.

Happy posting!

--The Mods

I am copying over a post put together by beesie, on of the resident experts on the boards. It gives a good, non-partial list of things to consider as you make your decisions:

"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.

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 consistently shown is that long-term survival is the same regardless of the type of surgery one has. This 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 affect survival rates. Here are a few studies that compare the different surgical approaches:

Lumpectomy May Have Better Survival Than Mastectomy

Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

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 if it's believed necessary or beneficial for you to have chemo or take hormone therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (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 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 (and except with a new untested reconstruction procedure) 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. Is this risk level 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 over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. 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 in your other (the non-cancer) breast? 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 BRCA 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). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. 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?

.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!"

Just for the record, I chose a lumpectomy because it is a much less invasive surgery and has a much quicker recovery (plus the more extensive surgery you have, in any situation, the more chances you are going to have of complications). Also, I like having breasts and would have felt bad to be flat or deal with a protheses; but knew, after talking to people who had done reconstruction and also by reading some of the reconstruction threads here, that I would most likely not be willing to go through all the added time/expense/pain/hassle and uncertain results of reconstruction. I did not have any trouble with radiation then or later....and is very targeted now days, so there is not much of a chance of collateral damage. 8 years out, I am even more happy with my choice than I was going in.

Mizmimi I went through this decision. First I had a lumpectomy for Atypical Ductal Hyperplasia (ADH) found on biopsy in my right breast -- didn't know I had DCIS at that point, it was found after the LX. But either way, I wouldn't have done a BMX for one spot of DCIS. That being said, I also did NOT want radiation. My DCIS was 2 mm, so I didn't get much argument. But then I had more things grow right next to the lumpectomy spot, just 6 months later, and I'm looking at another LX and possible radiation. Now figure in my mother and her sister died of bc, I tested positive for BARD1 (similar to BRCA but not all studies complete on it yet so can't be used as deciding factor alone), and my ADH which raises the risk of cancer in both breasts. And dense breasts. Also add in the fact that I didn't want to take tamoxifen, which my bs felt was mandatory at that point. So I went with PBMX. And guess what? The path report showed LCIS, a radial scar, a papilloma and calcifications in my left breast that didn't show up on mammogram -- the left breast wasn't even on our radar! So I know I did the right thing. It was just a matter of time, but I was able to refuse a SNB with this PBMX -- if I had waited and it turned into IDC, I would have had to remove lymph nodes as part of the BMX.

But here's the thing: you are not making a decision between Disneyland and Six Flags. You aren't going to decide and then feel "good" about your decision -- "Woohoo I'm getting a BMX!" "Woohooooo I'm getting a LX and radiation!!" I was in doubt as I was being put onto the operating table. None of us has a crystal ball, and we have to just make the decision that seems right for us.

And finally, when you read clinical studies about survival rates with LX vs Mastectomy etc etc., make note of the types of cancer the women in the studies have. A woman with a 6cm IDC or IBC is different that a 1.5 cm DCIS with comedo. Also, there is a difference between surviving and living. Prior to this BMX I'd had 6 biopsies and an LX, and I was about to have another LX. I was a ticking time bomb and I could hear the ticking loudly; I will now never again have to get on that hideous table with my boob hanging through while I'm raised up to the ceiling and speared like a fish.

And I'm doing okay after the surgery.

(p.s. go to a NCI comprehensive cancer center for a second opinion)

I have grade 3 DCIS with comedonecrosis, 4cm cluster, and although I as adamant about a LX with short term rads, I eventually opted for an MX because I don't want rads of any type now. There are also other clusters in my breast which may need to be biopsied in the future so rather than do an LX with rads and subject myself to a future of biopsies and more mammograms, I'd tather be done with it. I know that I may need rads if there is node involvement but I read here that the liklihood of node involvement, even with high grade comedonecrosis DCIS, is very low, about 5%.

How do you know ahead of surgery that you have no node involvement?

Thank you everyone for your words of wisdom.....I'm starting to feel more in control of my situation and gaining clarity thanks to your input and the research I've done on this site! When I first met with my surgeon my head was swimming and since he referred to one of my options as "mastectomy with immediate reconstruction" I naively thought that one surgery would do the trick and was the magic bullet....take out the "stuffing", replace with implant, one recovery, remove risk of reoccurrence and no follow-up treatment - no-brainer, right?! Ugh, after research and a meeting with the plastic surgeon I learned nothing could be farther from the truth - hello TE, multiple procedures, hello reality!!

Met with surgeon again yesterday armed with new knowledge and a long list of questions and have decided to pursue a biopsy on the two additional areas of abnormality so I know exactly what I'm dealing with. From there the decision may be made for me. If those are cancerous - UMX it will be. But even if I go down that path I will be approaching it in a new way. I will be seeking second opinions (at an NCI location, thanks @ipsy!) and looking for a dedicated breast surgeon who is hopefully skilled in skin/nipple sparing techniques (if that is an option for me) as that is not available in the area that I live. If I can do LX & rad I will continue to research and seek opinions to feel confident with that path.

In the meantime, the radiologist who will do second biopsy is on vacation next week, I'm on vacation the following so until mid-August I'm taking a vacation from thinking about this!! I'lll come back and deal with it all in it's time, very grateful my diagnoses allows me the luxury of time to decide - I know many women don't have that choice.

Thanks @MizMimi for starting this discussion - it was heaven sent!

I'm back in charge.....for today! So glad I found you all to help me stay strong and to reach out to when I'm struggling. I now know I am on a journey, so more to come!

The good news is that a DCIS allows you some choice. The bad news is that you have to make the choice without benefit of a crystal ball, (as ispsy put it so well). Personally, I was blind-sided because of facts and figures that dissuaded me from my long-standing plan to have a BMX at the first sign of BC. I will regret my choice forever.

Be aware that the statistics are absolutely meaningless in any one case. Additionally, there are NO stats on quality of life issues. No one gathers data on how many BC patients wind up with lymphedema from rads, for instance. Side effects from tamoxifen are well documented, but I certainly didn't know I'd lose the use of my thumbs! And that my eyes would be damaged. Although I was told that the wire placement procedure would be painless, my experience of that was horrific, leading to PTSD. I now know of others in similar situations, and a couple whose shoulders were dislocated because of the positioning of the head and arms, twisted up and back, for such a long period. You are unlikely to told any of this, except from people who have been there.

Denise-G is probably correct that women who don't have to make the choice are less likely to feel so overwhelmed, and will not second-guess the treatment. However, DCIS patients who later regret a MX do so because they are TOLD to regret it. ALL the pressure has been in the direction of doing "less" without a real understanding that it often leads to MORE treatment and lower quality of life. Woman who choose MX or BMX should be supported in that decision. Of course, they will never know how much misery they might have prevented. As someone who made the mistake of choosing LX/rads & hormone suppressants, I have to deal with PTSD from wires, lymphedema and cording from rads, eye and joint damage from tamoxifen, every day and every night for the rest of my life. AND I still have an elevated risk of additional tumors in both breasts. (Did you know that when DCIS patients get a second tumor it is already invasive upon DX more that half the time? Even though they are being closely monitored!)

If someone feels that her breasts are the center of her womanhood or identity, she can certainly chose breast conserving surgery with all the follow-up treatment, and she should be supported in that decision. If someone is not willing to risk all that comes with LX (wires, rads, hormone suppressants, additional LXs based on pathology, elevated risk of additional tumors, etc.) she should also feel completely supported in that decision. When a DCIS patient chooses DMX, she is DONE! Yes, it's a big surgery requiring a significant recovery. And it carries some risks that things can go wrong. But eliminating a boat load of other procedures, substantially reduces the overall number and type of potential complications and side effects.

I didn't know that I would struggling so from the more "conservative" treatment a year later. I do know that two friends who chose double mastectomyies have their lives back now. They are DONE. I can only wish.

I have no risk of lymphedema because I told them not to take a lymph node during my BMX. Also, you can get lymphedema with an LX if they take a lymph node during LX. Thank you turtlelady, and I'm sorry you have had such troubles. I think human beings have a tendency to pendulum-swing; in other words, it used to be at the first sign of breast cancer RADICAL MX!! take all the muscle and tissue and lymph nodes!!! Now it is oh, we can just do an LX and you'll be fine, and if a woman decides to do a BMX she gets "wow, kind of overreacting, aren't you?" (yes, I've gotten that, even on this website). You can find good news as well as horror stories for every possible road. I like turtlelady's point that statistics are meaningless when it comes down to an individual (because who knows where you will fall in that statistical model). It all comes down to what you can live with. Because it was at worst DCIS, I told my bs not to take a sentinal node, because I didn't want the risk of lymphedema. Path report showed no invasive cancer, so whew. But I did have LCIS in the left breast that wasn't even on our radar.

I'm sorry turtlelady that you went through that. But you don't really know if you would have suffered from PTSD from the Mx surgery as well. That can be very painful and have a long recovery. My mother and grandmother both had Mx and I jumped at the chance to have a lumpectomy. The horror story I could tell you about my mothers mx would curl your toes. We all make the best decisions we can at the time with the information we have available. Having regrets just causes unhappiness.

Many many people have sucessful lumpectomy + rads and many many have successful mastectomies. People without problems from their diagnosis tend not to post and are off living their lives. All messages boards have a bias towards the negative things that happen to people for that reason.

Whatever choice someone makes is the best choice they could at the time with everything equal.

As ipsy has called it-- "MX shaming"-- is precisely the point I'm trying to make. Currently, ALL the pressure is toward LX. It's basically a fad of the moment. It may make perfect sense for someone with a low grade DCIS. However, if you have an intermediate or high grade, it means you're signing up for many other procedures, each of which holds an additional risk of SEs and long-term complications. I felt the pressure to go for LX (not by my BS though, who recommended MX) and was blind-sided by all the additional crap that accompanies LX (for ppl with a higher grade DCIS). I'm stuck with a lot of torment now, that could have been prevented. And, perhaps worst of all, I still have my breasts, including one that hurts all the time from LE. So now it's on to frequent mammograms and all the pain and uncertainty that go with that. I wish these useless things were gone. But I felt pressured from media reports, and made a disastrous decision. LX IS NOT ALWAYS EASIER. Everyone should stop implying that it is. It's not always the right decision. It actually means you will be doing MORE and watching over your shoulder for the rest of your life. But that's not the information that is out there in the media, or even on these boards.

If a woman chooses to keep her breasts and undergo wire placement, LX, possible additional LXs, hormone suppressants, and cuddling up to mammogram machines forever (or until she gets another tumor and chooses BMX), she should be completely supported in that choice.

If a DCIS patient chooses to do ONE thing instead -- BMX-- she should also be supported. NO ONE should suggest that her choice was "overkill" or "excessive" or "hysterical over-reaction." It is a perfectly wise and valid choice. It may have saved her the life of misery that I now face.

I can honestly say that I WANT another tumor. I will beg for BMX. However, with the LE, well... that's uncertain.

We need to STOP trivializing DCIS. We need to STOP pushing LX for everyone. We need to wholeheartedly support ppl who choose BMX. I wish SOOOOO MUCH that I were one of them.

Yes, I completely agree. Everyone should feel supported in their decision. With low grade LX, you are less likely to have rads and hormone suppressants as part of the treatment. These are the procedures that carry a significant risk of side effects and complications. You would still need the guide wire procedure. It preceeds all LXs. Even a low grade DCIS has an elevated risk of new tumors. That's even true with the pre-cancerous condition, atypical hyperplasia. The risk is greater for folks with a higher grade DCIS. But obviously, for the woman who gets another tumor, those statistics are pointless. It was 100% for her. Personally, if a woman wanted to choose BMX with a low grade DCIS, I would completely understand, and never denegrate that choice. It might provide great peace of mind for her. Although mammograms would be eliminated following BMX, regular visits to the doctor would continue. I have also had a complete hysterectomy, and those pap smears typically disappear after three years. So hang in there. :-) I completely agree that people should not be frightened into any particular decision. Nor should they feel bullied. The current fad is to denegrate people as "over-reacting" if they choose BMX. This ignores the many additional treatments that DCIS patients will have if they choose LX. It also ignores the very real elevated risk of a new tumor. People have a right to know. I feel that I was mislead. Most people who choose the whole treatment plan (wires, LX, additional LXs if needed, rads, hormone suppressants, and infinite mammograms) will do fine. But this should be a real choice, with all the info necessary. They shouldn't be told that the long list of procedures will always be easier than one, a BMX. The choice should be truly based on information, rather than pressure from the current fad of LX (plus a raft of other procedures that aren't usually mentioned). Above all, the woman should feel supported in her decision. Right now, a DCIS patient who chooses BMX will be criticized or even ridiculed. And they have no idea what problems their choice may have prevented. It's no wonder that they sometimes "regret" that decision. Let's all be on the side of full information. I wish I had known..