Do you regret having a lumpectomy for DCIS?

I'm another who was diagnosed with DCIS and the post lumpectomy pathology showed some invasion. Several mammograms and an MRI prior to surgery did not detect the IDC. So, yes, I'm glad I had a lumpectomy. My surgeon did a wonderful job and except for a faint smooth scar, you can't even tell I had surgery.

Thank you Moderators for your warm welcome. I'm glad I found a forum where I can read about others experiences and learn from them but I still have to keep in mind that the choices and outcomes are solely mines. It's scary going through this and I really have to applaud you ladies for being so brave. I find myself weeping sometimes as I read through your posts. My husband and I decided to request for a second opinion, basically having another pathology report from a different lab. I guess with a 2nd opinion it'll force me to face the most important choice I'll have to make, pushing me forward to the inevitable.

I concur with summerangel and lisa-e, although I will admit that I also believe everyone is entitled to follow the path they feel is best for them - after given correct and specific information about their diagnosis.

Two points, we are talking (I think) about two different decisions: 1) any treatment versus watchful waiting, 2) lumpectomy versus mtx (*if* a diagnosis warrants the choice)

Many women on this board have had the experience of finding invasive cancer after the biopsy diagnosed DCIS - worse yet -- many women have DCIS/invasion together, and some actually have late stage invasive disease that is not diagnosed on initial biopsy. How would they know this without at a minimum a lumpectomy?

Secondly, while I understand that some women see MTX as way to reduce their risk, it is important to remember that the scientific community and women rights organizations spent years demonstrating that lumpectomy was a safe and reasonable treatment. My aunt had breast cancer at 27 years old in the 1970s - I was ~10 years old. You would not want to see what those radical MTX looked like, they were horrific - MTX has come a long way since then -- she never could lift her arm more than chest high. She then had breast cancer in the other breast about 14 years later. Again, the only surgery afforded her was MTX. The surgery was not as bad, they had proven that you did not have to remove the entire chest musculature to achieve favorable clinical results - but it still was a disfiguring surgery, and there was no reconstruction then, so she never had breasts again. Now, we do have better MTX surgery, and reconstruction, as options. Thankfully, these surgeries have come a long way - and thankfully we now have alternatives to only MTX. There have been several decades of studies demonstrating that when DCIS or invasive breast cancer s confined to a single quadrant there is no difference in survival and recurrence between these two surgeries, if followed by recommended other treatment regimes (e.g., radiation, chemo, hormonal therapy).

While choices are hard, I would say not having choice was much harder. I am extremely thankful that I was able to choose not to undergo one of the most extreme breast surgeries available. While I respect each one of your decisions -- please just understand that ALL treatments have risk - but some might say, not as much risk as no treatment at all - having options are a GOOD thing.

Best wishes for a healthy life journey for you all!!

I think exbenxgrl said it best- to paraphrase "what would you be watching and waiting for?" The DCIS will either become invasive or it won't. If you wait until it becomes invasive, assuming it does, now you're facing the possibility of chemo and a more uncertain prognosis. Until they get better at predicting which DCIS will change and which won't (and I believe they will get there), it makes the most sense to me to have the surgery even if you choose not to follow up with radiation and hormone therapy.

I don't regret the lumpectomy, even though the needle biopsy got all of the DCIS out and the tissue extracted during the lumpectomy had no cancer cells. I followed up with partial breast radiation. And I skipped the Tamoxofin. I do regret the radiation at times and feel it might not have been necessary and could limit my options in the future.

As for the lumpectomy, it would have caused me stress knowing that there could have been additional DCIS there, which would or could spread. My DCIS was very small but it was high grade. And, I do regret not getting a 2nd opinion on pathology.

Marijen, From what I understand the grading of DCIS is not always real cut and dried. If the 2nd pathology opinion had a lower DCIS grade I probably would not have proceeded with radiation. I had really struggled with the radiation decision anyway.

Hi Skeptic, what we choose regarding treatment after initial diagnoses is definitely an individual decision. However, from personal experience, results from a biopsy often don't tell the whole story. I was originally told that I had DCIS in one area of the breast and that the lump I was feeling was benign. After lumpectomy and SNB I ended up at Stage III. Invasive cancer where they thought I had DCIS and DCIS where they thought the lump was benign. If you have the lumpectomy and results come back as DCIS, than you have at least minimized the potential for further recurrance. If it comes back as invasive, than at least you know that you are addressing it. Not saying you should or shouldn't, just something to think about.

JerseyRenee01 - I know this is a confusing time for you, but DCIS is not an emergency and you can take the time you need to research and think with a clear head. Find out your actual risks of recurrence in the same breast and of developing a new cancer in the other side before rushing right to a double mastectomy. Ultimately, it might be the right decision for you, but I hate to see people rush into such a major surgery with lifelong implications out of panic - be sure you know what you are doing. Your risks might be less than you think. Or you might decide that you are more comfortable with removing one or both breasts ... just do it for the right reasons, not out of fear.

Testing positive for hormone receptors is actually a good thing, as it means that Tamoxifen would be an option for you in preventing risk of recurrence and/or new primary down the road, especially if you opt not to have a mastectomy. You will hear horror stories about Tamoxifen if you look on line, but the vast majority of people who are taking it (including myself and several of my friends) do just fine with it, so don’t let what you read scare you.

Again, take your time, and understand your risks before making a decision. For example while a double mastectomy drastically lowers your risk of dealing with this again in the future it doesn’t eliminate it entirely - I had a friend who had a double mastectomy for a small area of DCIS and ended up 8 years later being diagnosed with Stage III cancer ... while the odds of that are very, very, small (in the 1-2% range I believe), the fact she had had a mastectomy and was no longer having regular screenings did mean that her cancer wasn’t detected as early as it might otherwise have been. I only bring this up to point out that all choices have pluses and minuses and you need to really educate yourself about what those are before making a decision that will affect the rest of your life. The other thing that I would say is that if you are unsure, you can always have a mastectomy after a lumpectomy, but not the other way around.

As you can see from my stats, I decided a lumpectomy was right for me, but my mother was diagnosed about 6 weeks before me and in her case a mastectomy was a better choice. There is no “one-size-fits-all” options when dealing with this.

I am copying over this post from Beesie, one of our resident experts. Hopefully it will be of some help as you make your decisions:

What I've learned from having my MX is that a MX affects you for your lifetime. I'm more than 7 years out and there are days when the affect of my MX and reconstruction is still very noticeable to me - muscle aches, sore ribs, etc.. There are activities that I no longer do, or try to avoid, because of the reconstruction. How I felt about my MX and reconstruction when I first had my surgery (elated!), how I felt about it two years later (surprisingly disappointed), 5 years later (it is what it is) and now 7 years later (occasionally frustrated) has continued to change and evolve. I think that's important to understand because so much of what you read on this board is from people who have just completed the process, or who are still in the middle of the process. Whether they feel good about it or bad about it at this point in time could easily change as time goes on.

Sometime ago I created a list of considerations for those making the lumpectomy vs mastectomy vs. bilateral mastectomy decision. I've reposted this many times now, and I've added input from many other women. Going through this list might help you come to terms with how you will deal with either of these options and what the best decision is for you:

• Do you want to avoid radiation? If your DCIS isn't near the chest wall, 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 DCIS is found near the chest wall. Radiation might also be recommended if it turns out that you have a large area of invasive cancer in addition to the DCIS and/or if it turns out that you are node positive (which is only possible if you have invasive cancer).

• Do you want to avoid Tamoxifen? For those who are ER positive who have DCIS, this may be possible if you have a mastectomy and particularly if you have a bilateral mastectomy. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence; 2) it reduces the risk of the development of a new breast cancer in either breast; and 3) it reduces the risk of a distant recurrence. For most women, a mastectomy will reduce the first risk to a low enough level that the benefit from Tamox will be minimal. For most women, a bilateral mastectomy will reduce the second risk to a low enough level that the benefit from Tamox will be minimal. The third benefit, protection against a distant recurrence (i.e. mets), isn't a factor for women who have DCIS, since by definition DCIS cannot move beyond the breast. However for those who have invasive cancer, this is a crucial benefit and is not affected at all by the type of surgery. So if you have an invasive tumor that is ER+, usually Tamoxifen (or an AI) will be recommended whether you have a lumpectomy, mastectomy or a BMX. However if you have DCIS (and therefore face virtually no risk of mets) or a very small non-aggressive invasive tumor (and therefore face only a very small risk of mets), it may be possible to pass on Tamox with little change in your long-term prognosis.

• Do you want to avoid having node removal? For those with any amount of invasive cancer, an SNB is necessary. But because DCIS cannot travel to the nodes, an SNB is not required for those who have DCIS. For DCIS women who have a lumpectomy, if some invasive cancer should be found in the lumpectomy pathology (as happens in about 20% of cases), an SNB can be scheduled later as a separate surgery. However, an SNB is difficult to do after the breast is removed, so for women who have DCIS who are having a MX, usually an SNB will be done during the MX surgery just in case some invasive cancer is found. Therefore the requirement to do an SNB with a MX is a significant difference vs. lumpectomy for those with pure DCIS. Any node removal presents the risk of lymphedema; after an SNB, the risk is estimated to be in the range of 5% to 10%. Once nodes are removed, lymphedema can develop at any time (even years later) and once it develops, it remains for life (although it often can be managed). (Note that sentinel node mapping is a new procedure, developed by Pink Lotus, that may allow DCIS women having a MX to avoid an unnecessary SNB, but this method is new and not yet widely used.)

• 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 do you feel about going through a longer surgery and a longer, more restricted recovery period?

• If you have a lumpectomy, 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.

• If you have a mastectomy, do you plan to have reconstruction? 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. Are you prepared for this?

• 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 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?

• If you have MX or BMX, how you do feel about your body image and how will this be affected by a mastectomy? 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 mastectomy, 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 DCIS 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 nipple(s)? Are your nipples important to you sexually? A mastectomy 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. Keep in mind as well that most women are pleased with their decision to have a mastectomy or bilateral when it's first done - they are relieved that the cancer is gone and the surgery is over and in most cases it wasn't nearly as bad as they feared. For women who are affected by the loss, the real impact usually doesn't hit until many months or even years later. That's why trying to think ahead to a time when this diagnosis is long behind you is important.

• If you have a MX or BMX, 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?

• 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.

• Do you know 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 satisfied that you've reduced your risk sufficiently and not worry about it except when you have your 6 month or annual screenings? If you will always worry, then having a mastectomy might be a better option for you; many women get peace of mind by having a mastectomy. Be aware however that while a mastectomy will likely significantly reduce your local (in the breast area) recurrence risk, a recurrence or the development of a new BC is still possible after a mastectomy. Lots to consider.

• 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 DCIS cannot recur 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 and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to him or her, 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 single MX 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 list is helpful. The thing to remember is that everyone's experience with surgery is different, everyone's pro vs. con list is different and everyone's emotions are different. Additionally, there is so much in this situation that you can't control..... how you feel about your breasts after reconstruction..... whether you have pain from your mastectomy or reconstruction or not... whether the fears you have now, just after you've been diagnosed, will still be as strong in 6 months or 2 years..., etc.. So don't make your decision based on what someone else did or the experience that someone else had or how someone else felt. Make the decision based on knowing yourself. Do what's best for you. Good luck with the decision!

Beesie is very, very smart. She doesn't post much anymore but gave me permission to share her information when it might be helpful. Please feel free to share it on other threads as you see the need.

thank you so much for posting that! I am taking deep breaths & taking this in. Now taking time to gain knowledge. I tried get appt with surgeon of my choice & soonest is like January maybe even February. I totally respect others are ahead of me in line & with more serious diagnosis. In meantime hoping they can get my MRI done, genetic counseling & wherever else I need to go! The information on here is so helpful!

Skeptic -

They had found my micro invasion at the time of the initial biopsy so I had a sentinel node biopsy done at the same time as the lumpectomy. Honestly it wasn't too bad but I did find that incision to be more painful than the one on my breast simply because of the location (more affected by arm movement). I'm glad you went ahead and had the lumpectomy, especially in the light of finding a micro-invasion. In the even that it hasn’t spread (by far the most likely scenario) it won't really change your prognosis or recommended treatments all that much, but it's a good thing you got it out before it could grow bigger and spread further.

Edited to add - in the case of a micro-invasion, my surgeon told me the odds of finding cancer in the sentinel node were only in the 5-10% range, but it is not zero which is why they need to check.

Just take it one step at a time and keep breathing! Have you had a biopsy yet? That would be the first step after the imaging (mammogram/MRI). I had what is called a stereotactic biopsy where the needle is guided by a mammogram. In my case, the biopsy actually removed all of the cancer - nothing remaining was found in the lumpectomy, but there was no way to know that for sure without having the lumpectomy.

I never had a MRI - I guess they felt my breasts were easily read on mammogram. They had found clustered micro calcifications on mine which turned out to be a tiny amount of DCIS with an even tinier micro-invasion. We did do genetic testing (I am an Ashkenazi Jew diagnosed at 45 and my mother has also had breast cancer, although hers was post-menopausal which doesn't really raise my risk much, but it was enough for insuratnce to pay for the test). They rushed the results so that I could know whether I was BRCA+ (I'm not) and thus more likely to have a mastectomy prior to going in to surgery.

Put together a list of questions for the surgeon such as your risks of recurrence with each type of treatment, the pluses and minuses of each type, and what they recommend in your case and why and bring it with you so that you don't forget to ask. Sometimes in the moment your mind goes blank and you forget what you'd been planning to ask, so a list can be helpful. Don't let them pressure you into making a decision right then and there if you are not comfortable with it - take a little time to process the information if you think you need it.