DCIS and Mastectomy - UNI or BI

Danceon, here is a list of considerations that I put together a while ago for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy.  I've posted this quite a few 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. 

I realize that you've made the MX decision and now are only trying to decide between a UMX and a BMX but I've left in the info about a lumpectomy vs. a MX because it might help explain a bit about what to expect with the MX.  

One question for you.  Why are you assuming that you will need to take Tamox if you have the UMX?  Taking Tamox is optional and the benefit you get depends on what your risk is of being diagnosed again.  I had a UMX and my oncologist actually recommended against Tamox for me - he didn't feel that the amount of protection that I'd get for my remaining breast was worth the side effects and risks of Tamoxifen.  I was quite surprised at his recommendation but after doing my own research I ended up agreeing with him.  So I never took Tamox.  This is something you may want to investigate more if it's going to be a big factor in your decision.

Now, onto the list of considerations:

• 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?

• 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?

• 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 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 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?

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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 emotionally about the loss of your breast or breasts.....   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.

Although I had IDC and not DCIS, and was; therefore prescribed Tamoxifen for five years, I just want to confirm what Beesie said about tamoxifen being of questionable benefit for DCIS depending on a number of factors.  However, I do want to point out that, if it's tamoxifen's potential side effects that concern you, many women - myself included - have had very few/minimal problems with the drug.  I, like you, am very active - recently challenged myself to complete a 30km bike hike - but have had absolutely no problems with my joints.  I have not gained any weight; in fact, I've actually lost 16lbs since starting tamoxifen and getting back to my exercise regimen following treatment.  And to guard against the most serious side effect - the risk of developing a uterine/endometrial cancer is VERY low, less that 1% - I've taken a pro-active approach; every year, I am scheduled for screening just to keep an eye on things.

Tamoxifen doesn't have to be the enemy, but - if you are considering not taking it for fear of developing side effects - my advice would be that, if it is highly recommended for reasons that make sense to YOU, try it for awhile.  You may find that you are just fine taking it, but if you're not, you can always stop.  And you can always get a second opinion if you are having trouble deciding. 

But the ultiimate choice is yours alone.

Thank you ladies for sharing all your personal stories. I was diagnosed with DCIS in my left breast about a month ago. I'm 46 with a complex medical history that doesnt make me a good candidate for tamoxifen (dvt), I also just had a complete hysterectomy from uterine complex hyperplasia with atypia (pre cancer) which means no ovaries. My pathology is showing that I am estrogen positive which terrifies me since I've been put on HRT. I ripped that hormone patch off a week ago until I figure all this out. Long story short I've decided to go forward with a BMX.

I'm currently agonizing over choosing a surgical team. I've seen 2 breast surgeons and one plastic. I'd like to see another plastic who came highly recommended by a breast oncologist but she is 3 more weeks out for an initial consult. Ive been told my DCIS is low grade so I have time but this waiting is making me bananas. I have 2 young children and I'm doing all I can to keep this fear from paralyzing me. I just want to have this surgery scheduled so I can move forward with some peace of mind. I also have had a constant aching in my Breast since my 3 biopsies and my underarm feels very irritated as well. The surgeons feel it could be due to the biopsies but naturally my mind is going down the dark road that perhaps there's more going on in there then the doctors know. Am I being realistic with these fears? How do I really know I have time to spare in seeking out another opinion. Should I go forward with the Doctors I have? How do I really know which surgical team is right? All my girlfriends keep saying I'll just know, that it will somehow just come to me. Well maybe I'm slow but I'm not having any epiphanies : ( and I'm afraid what the waiting will mean.



Thank you again for allowing me a safe place to share my thoughts, worries and concerns. At my time of diagnosis I knew I was one of many, many woman who are being affected by this disease but yet I still felt so alone. Now that I've found this community I really do FEEL I am far from being alone!!!!! I am soo very appreciative for your willingness to share your stories, and opinions.

Denise66- I too was diagnosed with DCIS on my left side only. I chose a BMX. I will never regret that decision. As the others have said, less worry for the future.



I found my PS but the first surgeon I went to was wrong for me. I did just know it! When I went to the next surgeon I knew right away she was the beat choice for me! It was actually the first time I had let myself cryin front of a dr. I was so relieved to have found her and she was confident!!



Do you have a nurse assigned to your case? If you do you may want to call her to help you w appointments. My nurse was able to get me into see docs quickly!



Good luck! Jess

Denise66,



Yes, I knew going in they would take a few lymph nodes. The surgeon said they typically do that w/ MX. I had the dye about an hour and a half before surgery. They were able to come out and tell my husband during surgery that the lymph nodes looked clear! It was a huge relief for us right away!

I am healing well, thank you! I think the process leading up to all this was the hardest. All the tests, appointments and unknowns can drive you crazy. It's true, once you have a plan it's all so much easier to handle.

I prayed a lot before and after. It helped me:0)

Praying for you!

Jess

Hi Everyone,

I'm having surgery Oct.10 and I'm so thankful for all of you in this community that have shared their stories. It has been a real learning experience reading and reflecting on the courage (regardless of the concern and worry that is present) . I just wanted to let you know how much this has helped me get ready for this Wednesday.

Dance on, I just wanted to reassure you that I've been taking Tamox for over a year now and I haven't experienced fatigue from it,or not wanting to be as active. Radiation did slow me down temporarily, as I'm sure your MX will slow you down for a bit -- but you WILL heal and you WILL be active once again. I do have some side effects from Tamox that I consider minor, certainly nothing that stops me from working out nearly every day. I decided to take it after pestering my MO for numbers and mine were a bit too high for my taste (after only having a lump). Also, he said that I could always give it a try and see how I felt after my body adjusted to it. So I started it last Sept and I'm still going strong. Ive even gottenused to taking a pill every day- completely new experience for me.



Hang in there! You are going to have a very long and active life once you put this surgery behind you. I was discouraged by how out of shape I was after radiation, and the first 6-8 weeks back were tough, but by Spring was fully competitive again. You will be, too! You got this!

Thanks Bessie,

I have DCIS grade 3 in several places in my right breast so I'll be having a mesectomy. I am grateful that so much helpful information is here to help me think and ask questions before I needed to decide .

Eileen, welcome to Breastcancer.org. As well as the support you can find inn the community here, there are some resources on the main Breastcancer.org site that may be a help to you:

Getting a Second Opinion

Mastectomy vs. Lumpectomy

Best wishes, whatever you decide! And please check back to let us know how your second opinion goes.

• The Mods

Eileen4560,

I was diagnosed with DCIS back in January 2014. My first BC doctor wanted me to do a lumpectomy w/tamoxifen for 5 years with the possibility of radiation. I decided to follow my instincts and saw another doctor.  I was told I had several other areas of calcifications  and being so small chested clean margins were not a sure thing. By doing a mastectomy, cleared me from radiation and tamoxifen. I didn't hesitate as radiation and tamoxifen were not what I wanted. I am also some what of a nut in gut flora etc. I chose to do a bilateral as I wanted to be done with mammograms and not keep looking over my shoulder and wondering if it would happen in my other breast.

I chose uni (there was not choice but mastectomy because it was multi-focal) when I was diagnosed with DCIS and have not regretted my decision. I did have a breast reduction of the left breast (the good one), when I underwent the mastectomy. Tamoxifen and radiation were things that I did not want to do. 

I'm having an issue now with CC and recently saw a husband (PS) and wife (breast surgeon) yesterday. My consultation lasted 2 hours. I now have to go back to my old breast surgeon and PS to get post-op reports and copies of all of my mammo, ultrasounds and MRIs. 

Good luck with your decision.