Mastectomy Needed after Lumpectomy Surgery

I'm so sorry you're not done - more surgery, particularly a mastectomy, sucks. Hopefully, though, if you do a mastectomy you can avoid radiation, which is a silver lining.

You also might consider a second opinion. Maybe some surgeons would be OK with 5 cm and lumpectomy (I don't know how much you have to start with though ).

I chose to go unilateral. For me, I was very bummed to lose sensation, particularly nipple sensation. I wanted to preserve what I could. I also didn't want to be restricted with both arms (I have young twins!). I was told that DCIS usually doesn't recur on the opposite side, which was reassuring. So a uni mx was the obvious choice.

A lot of people here have chosen bilateral. With reconstruction you can get more symmetrical results. It also gives them piece of mind. It's a personal decision.

For me, the recovery from the mx (with TE placement) was 3 weeks before I could return to work, 5 weeks before I could lift the kids. The recovery from the exchange was 1 week (pretty easy). I did physical therapy for maybe 8 weeks following mx, which got me pretty much close to full mobility & strength. If you chose a flap reconstruction it would probably be a harder recovery.

I was advised to do Tamoxifen to protect the opposite breast, especially given my young age. If you did a bilateral mx, and no invasive cancer was found, you would probably be fine skipping hormonal therapy. Even with a uni-mx, you would probably be OK skipping Tamoxifen if the risks worried you. You should ask your doctor to calculate your risk % so you have an idea what you're buying.

Good luck.

This is a list of considerations that I put together a while ago for someone who was making the choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this quite a few times now and thanks to great input from many of the women here, I've continued to refine and add to the list. 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. I realize that since you've been told that you require a mastectomy, the first option - a lumpectomy - isn't even on the table.  But hopefully this list will provide more information about what's ahead for you with the mastectomy and will help you with the mastectomy vs. bilateral decision.  As an FYI, my situation was similar to yours.  After my first surgery I had dirty margins and an MRI showed lots more DCIS so I was told that I had to have a mastectomy. I went for a second opinion to see if I had any other option - I didn't - so I chose to have a single mastectomy.  That was over 5 years ago and I remain very happy with my decision. 

• 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.
• 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?
• 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?
• 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?
• 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).
• How do you feel about losing the natural feeling in your breast and your nipple? 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.
• 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.
• 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 satisfied that you've reduced your risk sufficiently and not worry about it except when you have your 6 mth 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. You just need to know yourself. If you are "the worrying type", think about whether you may worry regardless of the type of surgery you have. Some of the biggest worriers here are women who've had BMX. After a breast cancer diagnosis there is always something to worry about so those who are prone to worry certainly can find something to worry about. Be aware too 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. Do yourself a favor and 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 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 or not you will have close margins and require radiation.....  whether you have pain from your mastectomy or reconstruction or not...  whether the worries and concerns 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.

Hi WorkingMom:

I'm sorry you are going through this.  I went through the exact same thing.  I had lumpectomy then "re-excission" and at that point the breast surgeon said "it has to go" so ended up with mastectomy.  It is totally a personal decision to do one or both.  I chose just my "bad" side and to do no "fix" to make my non-cancer side match by doing a reduction and lift.  So I have one 50 year old boob and one that is reconstructed at this point.  I do not regret doing one side at this point and would start with lump if I should get cancer in the other side. 

As far as surgery goes, I know everyone seems to be different and alot depends on what (and if) you do reconstruction.  I have been told that without reconstruction recovery is much faster.  I was out of work about 2 1/2 week for the mx if I remember correctly. 

I wish you the best.  All these decisions are really the hardest part.

Sending you my sympathies. I recently went through the same thing, except I had a small ER-/PR- microinvasion (early stage 1) with DCIS, so that made some of my choices a little easier. I had BMX with TEs and nipple sparing on the prophy side. I chose BMX because a) I am small and symmetry would have been very difficult to achieve without an implant on the natural side, which I definitely didn't want. b) I had "dense breasts" with several "areas of concern" on non-cancer side which would have required vigilant screening, MRI's, possibly biopsies, etc. Just didn't feel I had the nerves for it. c) I was rattled that they found more DCIS than what was detected by mammogram, ultrasound and MRI. Wasn't left with a lot of faith in reliability of screening process, esp. after learning that only about 75% of BC is detected by mammo (or 65% in women who have had breast surgery on that side). Didn't feel confident with ER-/PR- BC already starting to develop.

Might have chosen differently if a) I had larger breasts (would have tried re-excision or reduction in natural breast to match MX side). b) I were significantly older (at 45, I just felt I have too much ahead of me to take chances. c) I were ER+/PR+ and could have taken Tamoxifen. d) If I had straight low-grade DCIS with no IBC. As it is, I feel positive about my decision, esp. because I didn't need radiation and will never need another mammogram. Those "perks" (along with my very low odds of future BC) cheer me up in the moments I feel sad about losing my natural breasts.

Good luck in choosing what's right for you! Take your time, BTW. I know you probably feel eager to get on with it, but what you're facing is not a medical emergency and you can wait long enough to research it and reach a good decision (I had almost 2 months between failed lumpectomy and BMX and it was FINE. Felt anxious at the time, but in retrospect, not rushing the process helped me feel much more peaceful and ready for the next step.)

Best, Jade

I am very sorry to hear about your diagnosis, but there is life on "the other side"!

In July 2007 I was diagnosed with DCIS in my right breast, 9 cm, grade 3 ER+/PR+; and had a lumpectomy performed.  Unfortunately, the margins were not clean, and my surgeon told me I needed a mastectomy.  At the time I was 46, and did not take the news well.  I did get a second opinion from an Oncologist, but the answer was the same.  In January 2008 I had a unilateral mastectomy with reconstruction.  During the surgery the margins near the chest wall were not clean, so followup radiation was recommended along with Tamoxifen.  I did 6 weeks of radiation over the summer.  My reconstruction (expander then implant) was completed in October 2008.  I also had nipple construction and did the tattoo, but if I had a re-do on that decision I would not have done that.  It was a big waste in my opinion.  Due to scar tissue encapuslating my implant, I had an implant replacement and Alloderm in November 2010.

So, left breast is real, right breast is reconstructed.  The reconstruction is as good as it will get with implants.  I am neither happy or unhappy with it, it is what it is.  I will say that I am glad that I still have one real breast.  While I am lopsided (implant is high, gravity is taking its toll on the real breast), with a bra no one can tell.  I have been taking Tamoxifen for 2 years now, and knock on wood, do not have side effects other than an occasional hot flash.  I get yearly mammograms, and see my breast surgeon each year as well.  I also see an oncologist every 6 months.  Everything is fine, and hopefully will stay that way.

 Like everyone else has said, it is a personal decision.  I am very happy with my decision to have only a unilateral mx.

Patti