Bilateral Mastectomy Decision

I had the same diagnosis along with LCIS of the left breast. When they did the first open biopsy the margins weren't clear. I didn't want the risk of having breast cancer ever again so I made the decision for a BMX with reconstruction. I also saw an Oncologist and she didn't feel that any other treatment was necessary. She did tumor marker blood work and will follow me every 6 months foever! Even though it has been very painful, I don't regret my decision at all! Good luck to you and I will say a prayer for you!

ShaneOak

I too had DCIS, approximately the same size and opted for BMX with implant reconstruction. The short answer to the question "isn't BMX a little radical?" Is not necessarily. For the large area of DCIS, I was told that lumpectomy was just not a satisfactory option. It was a very small step to go bilateral, and is not an uncommon choice.



I absolutely do not regret my decision, and would do it again in a heartbeat. It's been quite a road, and I'm not done yet. But I'm now beginning to see the end product, and I'm very pleased. I think they'll actually end up better than the originals!



Prayers and best wishes. Find doctors that you trust, and go with your gut. No one can tell you the right decision.



Lizzie

I know it is different for everyone, I had tissue expanders. My ps filled quickly and that was painful. I did learn to take a pain pill and a muscle relaxer before I went and that helped. I also soaked in a warm tub a lot. I had small breast as well prior to the diagnosis, B cup. I didn't didn't stretch as well as the ps thought I would, but they are similar in size. I do have another surgery, probably in February. Not exactly sure what we will do then, maybe some fat grafting and may change out the implants. I opted to not do nipple reconstruction, I am getting 3D nipples with Vinnie. I probably didn't stretch as well because I am 50 years old. I have felt so much better since the expanders came out. Just don't let them fill to fast, go slow.

ShaneOak- When I told my internist (who was treated with a later Stage breast cancer) that I decided to have BMX, her response was "isn't that overkill? I have never heard of anyone with DCIS having BMX." I do feel like my internist was well meaning but not informed. I have switched internists since.



The 2 breast surgeons I went to said that because I had Stage 0 and grade 3 that my decision was very reasonable, especially because of grade 3. I kep thinking that it was the better decision for me. My other choice was lumpectomy with chemo and radiation. This could possibly have its own problems.



I have breast implants now which I forget are there. I am happy with them. Do what is best for YOU. Good luck.

ShaneOak, here is the list of considerations that I mentioned in my previous post. I put this together a while ago for someone who trying to decide 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. 

I realize that due to the size of your DCIS, the lumpectomy vs. MX  decision has pretty much been made for you so now are you only trying to decide between a UMX and a BMX. I was in the same position. 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. 

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 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 breeze through radiation or have problems with your skin.....  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.

Hi ShaneOak~

You and I have almost the identical DX.  I found out 11/15 and am still waiting for my BMX to be scheduled...getting antsy, wanting the date!  I saw an article about Vinnie and saved it.  I hope this link works.  His contact info is at the end of the story.

http://thestir.cafemom.com/beauty_style/145595/breast_cancer_survivor_gets_3d?utm_source=cafemom&utm_medium=cmi&utm_content=sendtofriend&utm_campaign=General&email_id=795961410

Yay!  Please keep me posted about it.  I'm leaning toward 3D tatooing vs. more surgery, but we shall see!

Wow reading your post it's like I'm reading my own diagnosis. I too am diagnosed with DCIS, 6 cm, and doing a double mastectomy. I am terrified that my DCIS has become invasive because my doctor keeps talking about checking lymph nodes and seeing an oncologist. I am in the same boat....if I don't have breasts them why is any additional treatment needed?

Oh my goodness, if I had a dollar for every time I heard "you only have DCIS, isn't a BMX a little extreme" or "you really should get a second opinion because my (mom, sister, aunt, friend, etc.) had DCIS and all they needed was a lumpectomy" I would be a millionaire. I was diagonsed 11/8/12 with DCIS in my right breast and had my BMX on 12/5/12. The choice to have a BMX with both nipples removed was a decision my husband and I made together after a lot of questions to my surgeon and PS, research online, and prayer. My surgeon suggested removing the right but leaving the left. I figured if they needed to take the right breast and if leaving the left, there was a chance it could develop there and I'd have to go through this nightmare a second time, I wanted NO part in that.  I will admit, there were numerous times I laid awake a night questioning whether my decision was the right one before I went through with it but after my BMX follow up appointment with my surgeon and hearing the words "I was cancer free" and hearing the oncologist tell me that, because of my decision, I would not need further treatment, well, I know in my heart more than ever that the so called "radical" decison I made was the right one.

On a side note, 2 days before my BMX, a client of mine called and pretty much told me I was making a mistake and that I should cancel my surgery. My decision was waay too radical, and that I REALLY needed to meet someone she knew (who happened to be a faith healer). It was bad enough being scared of what my surgery/recovery would be like but then to get a call like that! UGH! 

Yes, a client. There is a little more to the story but that is the basic jist of it.

Definitely listened to that little voice and I am so glad I did. There is no way I could have gone through this (or would want to) again. Now if my surgeon thought a lumpectomy and radiation was the way to go, I would have gone that route. But when she explained why she recommended the MX and I did some research, the choice was clear.

It really is a personal choice, that's for sure. I have a friend who has breast cancer again after 10 years of remission (not DCIS, hers is more invasive). The first time she had a lumpectomy, chemo and radiation. This time around, she opted to only have that breast removed (with TRAM flap reconstrucion). Even with a 20% chance of geting the cancer in her other breast and the fact that her cancer has come back for a second time, she didn't want a BMX.

Well I just read these posts on deciding whether a mx or bmx is the choice.

I am almost sure I want a mx on left side only. However, there is the what ifs?

I have an appt. with PS on Monday. I think sitting down and talking to him will help me make a decision.

Right now I feel good, I'm not scared, I'm not sad, I could just be in denial because this is a easy week. No Drs., appointments. After next week I think my fears will come back.

I am trying to keep positive, this is what I have been dealt, now it's in my hands, this is what I'm going to do.

I read and been told its a long road, I only but have a clue of what is to come. The surgery the healing, the emotional side.

I Know for one, that when my bs told me that a mx was suggested, I felt dread, and sickness like I've never before felt. I am blessed that I have a personal member from the Breast Cancer team to be at my beck and call when I have concerns or questions.

I have always felt that my "breasts" made feel sexy, a woman..., my husband reassures me, and as do my friends, it won't change who I am. Well, having cancer will forever change who I am. It will make me stronger! It will bring me closer to friends, family and my husband

Gardengirl, it's great to take a break from cancer and have a little bit of normal life!  Enjoy it! 

GreenCowgirl, I was the granola of my family -- they love fried balogna, spam, cokes, etc. and I eat organic everything -- and I'm the one who got cancer.  There are so many factors that it is maddening.  Your good health & lifestyle will hopefully keep you balanced and healing fast through all of this. 

I still feel incredibly sexy, BTW.    

Hi Shaneoak,  I am also from Iowa, i sent you a PM to your inbox.  I am again wondering how painful those tissue expanders are.  I had been told it was not an option since i had radiation, however the PS in mayo said yes we can .  They showed me a newer expander that was really soft, almost like the silicone, are you using this softer model?  Also his preference was for the newer contour shaped silicone gummy type.? 

Nancy

Well I guess it is REAl now, I just got the call for my surgery date.  Feb 28!  I have srestled witht he pros/cons of BMX and think i have decided to do it and have it all done now and move forward with life.  I have the radiated breast that isof concern for recon, but and praying all goes well, that poor left girl did me no harm but i can't trust her now so i must say goodbye.  So Far I do know the TE's are the newest out and the implants are Sientra.  I looked these up and see they were just approved for use here, the gummy bear type with anitomical profile.  Has anyone had/know about these?

Hello Shellshine, thanks for joining in, how are you doing?  I see you just had surgery this year.