I had my genetic testing after lumpectomy & OncotypeDX but before radiation. Had the results come back positive for either of the BRCA mutations, I'd have gone for BMX, no question.

Why bilateral & not uni? They don’t make prostheses and bras to fit the size of my breasts; a uni would have meant either reduction on the healthy one or BMX. Recon on the R and reduction on the L would have had a low chance of achieving symmetry--and if I opted to go flat on the R and reduce the L, I would have to wait for the L to “settle in” before determining what size prosthesis & bra to get. The course I chose, with a lumpectomy that doesn’t show & didn’t require oncoplasty on one breast or the other, was the easiest on my body. And it’s not irreversible. (Well, I suppose you can’t put the tumor back...)

If I get a recurrence or a new primary in my R, unless it’s completely outside the previous field of radiation, I would have to go for a mastectomy, since you can’t radiate the same tissue twice.

Elaine, here is a long thread in the DCIS forum that specifically addresses your question. There are some differences between DCIS and invasive cancer when it comes to this decision, and since most of those posting in this thread had a DCIS diagnosis, the comments will be particularly relevant to your situation:

Topic: lumpectomy vs mastectomy - why did you choose your route?

On the 1st page of that thread you will find my June 13th 2013 post detailing a long list of considerations and pros/cons for those making the decision between a lumpectomy and a mastectomy. There is another version of this list of considerations you might find posted in "Lumpectomy vs. Mastectomy" threads in the Just Diagnosed or Surgery forums of this board; the version that you will find here in the DCIS thread is a bit different because I wrote it specifically for those who have DCIS, addressing some of the considerations that are different for those who have DCIS vs. an invasive cancer (the issue of an SNB, for example, or the role of post-surgical hormone therapy).

There is no "right answer" and that's probably the hardest part of making this life-changing decision! I opted for a BMX with reconstruction due to a strong family history on my maternal side. My mom, her sister, their mother, and several other female relatives had BC at young ages. I tested negative for the BRCA genes, which was a bit of a surprise, but still decided to be proactive. After my dx this spring (I'm 43) my aunt agreed to do the genetic testing, and she tested positive for BRCA 1. She had her ovaries removed last month as a precaution and cancer was discovered in her Fallopian tubes. She begins chemo soon. This has prompted my mother to get tested for the gene - and we all suspect she'll be a carrier, too. So - did I need to have the BMX? With this new information about my family and learning I don't share the same genetic makeup as them....maybe not. But instead I prefer to think that my family's history of cancer caused me to pay attention to my breast health for many years, and my decision had already been made. No regrets. Best wishes!

I agree with fireheart. You just need to do whatever research/contemplation/. . . to make the decision and then not look back. We all have our own tendencies when it comes to conservative vs. aggressive treatment, but most important is to be comfortable with your decision and medical team.

Amie - Sorry to hear you are struggling with your decision. You made the best choice you could with the info you had at the time. Have you considered going for a prophylactic mastectomy on the left? You'd need to investigate insurance coverage, but if it will give you more peace of mind then it is probably worth it. I don't think there are any time limits for having expanders in place. So if you put off the implant to go through the reconstruction process on the second side, that might not be bad. In the end you want to be comfortable and at peace with your decision. Wishing you the best as you consider what you need to do.

Hi Elaine,

Yes, lymph nodes are not removed with a lumpectomy for DCIS, because DCIS by definition is contained in the duct; it is not invasive so has not spread outside the duct (and traveled to the lymph nodes). You indicate that you already had one lumpectomy (the excisional biopsy), and they did not remove lymph nodes at that time either so the second lumpectomy will involve going in the same incision and removing additional tissue to try and get a clear margin. If that also does not get a clear margin, you could face an additional lumpectomy or re-think your choice (again) and have a mastectomy at that point.

You do not indicate the grade of your DCIS or the size and position of your DCIS. Those can influence your decision too and the consult with the oncologist should help you to decide what you want to do. Is the DCIS close to the chest wall, does it cover a large area, is it grade 3 (more aggressive), do you have very dense breasts making it difficult to read your mammograms. Ask your oncologist how those factors should make a difference in your decision.

As far as how easy it is to detect a recurrence of DCIS - they will be looking for the same small bright white spots on your mammogram that were seen with your first diagnosis - they will see them in a fine, linear, branching pattern, or a cluster of pleomorphic microcalcifications. If you have the lumpectomy, you will have regular mammograms and any time they see these types of microcalcifications, in those patterns, they are going to recommend another biopsy to check for DCIS. I had a baseline mammogram in January, 3 months after the completion of radiation, and then a screening mammogram in June, 5 months later, which showed new microcalcifications in an area of prior non-suspicious microcalcifications. I had another code needle biopsy and it was not DCIS, but it was a very stressful 3 weeks because getting DCIS back that quickly, right after radiation, is unheard of, and would have signalled a really aggressive cancer and would have required a mastectomy because I would have failed conservative treatment.

Again, everything is based on how you personally feel about the various risks. I personally did not want to go through a major surgery (I would have chosen bilateral DIEP flap) and I personally would always worry that there could have been undetected cancer cells that had become invasive near the chest wall tissue left behind during a mastectomy and would no longer be detected via mammograms since I wouldn't have those after a mastectomy. But now I could be destined to have multiple biopsies throughout my life, with multiple high-stress waits to get the all clear results, and I would end up with a mastectomy if it returns (and would have needlessly subjected myself to radiation).

To ask if anyone had a mastectomy and regretted it versus a lumpectomy, I would think of course some will say that. It is a major surgery and there can be major complications. Or it can go smoothly but it still has a recovery time of a few to several weeks, depending on the type you chose to have. But no one can be sure what would have happened either way. We can look at statistics gathered in studies and try to see where best our situation fits those stats, but in the end, the decision is a personal one and we can only hope to minimize our regrets.

I wish you the best in your decision process; it is so hard to decide what we want to put our bodies through, especially when we "feel healthy" and a microscopic exam tells us otherwise and that we then choose between radiating our breast, or removing it. Neither one is a choice we want to make.

I am so tired of people questioning my decision to have DMX. I am also sick of doctors and other people saying oh its contained; we can just remove that lump and radiate your breast. No thank you its my body and I want both removed and reconstruction done. Peace of mind will save hours of worry for me thus improving MY QUALITY of life! Surgery is schedule Oct 20, 2016.

Please read my signature, DX, and treatment. I opted for BMX without reconstruction after two lumpectomies failed to produce clean margins. SNB on cancerous side only.

Yogadedra

I was told the same things as you were. "No one would recommend mastectomy and no one would do it." I think it might be the nurse in us. I thought Im winning the lottery right here by hearing in situ-and clean margins. I was afraid I would not hear that again another day. I went to the US in fact where I could pay and let me assure you once I made my plans clear every doctor and nurse here and there understood why. I dont think it was the path I chose that they were condoning-I think it was the fact that I chose with my gut. Im glad I did. I can live with my decision and not in fear. Are you gettting good support for your decision now and are you feeling confident in your team and your decision. Medical professionals understand why medical professionals are aggressive in their approach. As a hospice nurse I can only imagine how you might feel. Im paediatrics- always feeling well and healthy. big hug

Radaro,  thank you for caring. I had BMX in July, no reconstruction,  and the SNB.  The SNB side is still occasionally numb under the armpit, with a feeling of a pillow under and near the armpit. I had the same feeling on the prophylactic side for about a month or more, no SNB on this side. Also have some burning and pain in the chest and occasionally  pins-and-needles feeling   in the  arm on the cancerous side. Still cannot sleep on my stomach - chest pain, but can sleep on the prophylactic side hugging a pillow.

I hope things get better for you - it really needs time to heal.

My BFF was dx’ed with large (6cm) and multifocal grade 3 ER-/PR- DCIS, behind the nipple. First thing out of her mouth was “get rid of ‘em both.” Even the “healthy” one had ADH. As she is 70, widowed (and her late DH was the love of her life so she doesn’t want to date again) and hasn’t worn a bra in 30 yrs., she also declined reconstruction.

OTOH, I had IDC, small (1.3cm), “high & outside,” ER+/PR+, grade 2. I have large and non-dense breasts (to put it mildly—38 I), so UMX would have resulted in major asymmetry because they don’t make prostheses, implants or mastectomy bras that big, so I’d have also needed to have the healthy breast reduced (another major surgery) or removed; and when I learned that the survival rate for lumpectomy + rads is exactly the same as for MX (uni or bi-lateral), the difference in recurrence (6% for lx+rads vs. 3% for MX) wasn’t enough for me to even consider anything but breast-conserving surgery. I was 64 at the time, married 44 yrs. (65 & 45 now, respectively). I hate surgery. I hate the risk of anesthesia. I hate the risk of infection. I had just seen my husband (who is a doctor and knows all the risks of surgery) go through a perforated cecum from a botched colonoscopy, a hemicolectomy and a herniorrhaphy all within five weeks. So I was glad to know that UMX or BMX was overkill for me. I figured that if a lumpy isn’t enough, it’s always possible to go back and do a MX. But once a breast is gone, it’s gone—and reconstruction is also major surgery (in many cases, far more major than the mastectomy).

For me “peace of mind” was a red herring—I know plenty of women who had mastectomies and still had recurrences. But if my cancer had been larger, more aggressive, located more centrally, and my breasts dense and smaller, I would probably have opted for MX. Of course, if I do get a local recurrence, I would have no choice but MX because you can’t irradiate the same tissues twice—if reconstructed, I’d have to have the healthy breast reduced; if not, I would need BMX for symmetry for the reasons outlined above.

ChiSandy-I totally hear you and good for you for going with your gut. Surgery is a risk taking thing . We play our best hand and hope beyond hope that we will have heard the last of BC with that decision. To have to make any choice is a drag-but to have a choice at all makes us feel lucky . I wish you and your husband some peace and good health from here on

Hi Elaine,

I am new to the discussion boards and was just searching topics and saw this and it felt like this is the one I should reply to.

I chose a lumpectomy because it was the only thing I could control. I looked at the calendar and counted the days of when this was and when that was and wanted to make sure I could party on New Years eve when Radiation and Chemo were done. The only family that had breast cancer were 2 - 2nd cousins on my moms side and to this day, I still wonder, why me, why did I get it.

I am glad to say I am a Survivor and have had no re-occurences and I recently had a mammogram and I was so frickin nervous you would have thought it was my 3rd one, when in all actuality it was probably my 20th??

Anyhoo, congratulations to you in being courageous enough to even post here and share. You have every right to be fearful, scared, nervous and many other emotions.

Sending positive and loving thoughts your way. Good luck with everything. The New Normal does take some getting use to, but I pray it will all work out.

Have a great day!

Elaine, sorry to hear you needed a second lumpectomy (was it a new primary tumor or a recurrence?) & had melanoma. Glad it was in situ. I had a “highly atypical dysplastic nevus" (the derm called it a “pre-melanoma") removed from my back last summer. IMHO, being in the sun is overrated. But I try to wear long sleeves when I can stand it (covers my flabby upper arms) and never go out in daylight without at least SPF 30 on my face & lips and 50 on my arms, legs & chest if they're exposed. I should wear a hat, but I keep misplacing them. Pain in the butt, but so are skin biopsies.

When I was younger, I used to sunbathe with baby oil & iodine (or that orange Ban de Soleil goopy gel that always seemed to be a sand-magnet) and a sun reflector. In the 1950s and 60s, sunshine was considered beneficial, and a tan was the symbol of robust health. Nobody knew about the ozone layer back then (or at least it was intact). I am also very pale (despite dark hazel eyes and having had brown hair before the gray kicked in and so did the blonde-bleaching gene), and I refused to believe that a tan was impossible (and now even inadvisable) for me. I realize that with my coloring, any tan I could get would have looked like a cross between jaundice and sallowness.