Lumpectomy or Mastectomy Decision Time

My surgery is scheduled for Tuesday, February 17th. I have opted for a double mastectomy with reconstruction. The cancer was only in my right breast but since I have been told that I have very dense breast tissue, and since one of the cells that they found was lobular carcinoma in situ, I opted to have a double mastectomy since both of those things make it more likely for you to have a recurrence in the other breast. I figure if I have to go through this I only want to go through it once.

The decision is not an easy one to make. As far as radiation is concerned, my dad went through it. His only lasted for a couple of weeks. The worst side effect that he had was fatigue. I've heard of other people who have terrible skin rashes though. Also I've heard that radiation can interfere with reconstruction. Are you planning on having reconstruction?

Here's Beesie's entire post:

"Some time ago I put together a list of considerations for  someone who was making the surgical choice 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. 

Before getting to that list, here is some research that  compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach.  If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research  has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the  breast cancer in the breast that affects survival, but it's the breast  cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of  surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't  affect survival rates.  Here are a few studies that compare the  different surgical approaches:

Lumpectomy May Have Better Survival Than Mastectomy

Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast  Cancer

Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

Now, on to my list of the considerations:

• Do you want to avoid radiation? If your  cancer isn't near the chest wall and if your nodes are clear, 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 cancer cells are found near the chest wall, or if the area of  invasive cancer is very large and/or if it turns out that you are node  positive (particularly several nodes).
• Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or  beneficial for you to have chemo or take hormone therapy, it won't make  any difference if you have a lumpectomy or a mastectomy or a bilateral  mastectomy.  (Note that the exception is women with DCIS or  possibly very early Stage I invasive cancer, who may be able to avoid  Tamoxifen by having a mastectomy or a BMX.)
• 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 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.
• Do you plan to have reconstruction if you have a MX or BMX? 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.
• 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 have a BMX).  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 or BMX? 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 MX or BMX, 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 area of cancer 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 your nipple(s)? Are your nipples important to you sexually? A MX or BMX 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.
• 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. 
• 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 comfortable that you've reduced your  risk sufficiently and not worry except when you have your 6 month or  annual screenings? If you'll always worry, then having a mastectomy  might be a better option; many women get peace of mind by having a  mastectomy.  But keep in mind that over time the fear will fade, and  that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence  even after a MX or BMX. Be aware too that while a mastectomy may  significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e.  mets).
• 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 breast cancer very rarely recurs 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 with a new primary breast cancer  (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. 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 or UMX 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 helps. And remember.... this is your decision. How  someone else feels about it and the experience that someone else had  might be very different than how you will feel about it and the  experience that you will have.  So try to figure out what's best for  you, or at least, the option that you think you can live with most  easily, given all the risks associated with all of the options.  Good  luck with your decision!"

I had a lumpectomy and am very happy I had that option. I was (and am) pretty sure that I could not go through all the extra time/surgery/uncertain results/possible complications etc. etc. of reconstruction, and yet I am rather attached (pun intended) to having breasts. For me radiation was no big deal, 6 weeks of the rest of my life, and then done. If you aren't sure, I would go with a lumpectomy, because, if you find you aren't happy you could still have a mastectomy down the road, but once your breasts are gone, they are gone forever.

A friend of mine is a surgical nurse and a 35 year breast cancer survivor. So she has seen the whole picture from both sides of the operating table. At the time she was diagnosed the only choice was a mastectomy. Later, when reconstruction became available, she had that done too. When I asked her for advice, without skipping a beat, she said, "If you have the choice of a lumpectomy, TAKE IT!"

For me, compared to chemo, radiation was a piece of cake!

I am struggling VERY much with this decision as well. I have existing implants that have been in for 30 years and I have been told A) they need to come out NOW and they don't need to come out NOW. So I am really confused. But my own breasts are small and I think a lumpectomy would seriously disfigure me and then if I have radiation, reconstruction would be more difficult. I go back and forth but I am leaning towards a BMX with a DIEP.

If you dread the weeks of radiation, see if your cancer center offers the option of partial radiation/brachytherapy.  I had a lumpectomy followed by a Savi device inserted in my breast.  I had one week/twice daily radiation through the device, and while the device was uncomfortable, I am happy I was done in one week and with my decision for lumpectomy and partial radiation.

Dianeaslm: I understand about wanting it out but honestly, I think a lot of people have that attitude and make a quick decision and regret their choice. There is so much to consider. I am seeking a second and even a third opinion. I feel like doctors don't give you all the information and it becomes up to the patient to research both options.

I would insist on an MRI and the BRCA test. There's another test that can estimate the likelihood of recurrence and that might affect your decision. There's time to get opinions and make a decision. I had a lumpectomy, but the margins were bad. When they went back for better margins, they found a tumor that didn't appear on the mammo or ultrasound. At that point, I decided I wanted a mastectomy. I haven't reconstructed and look fine with a foob (prosthesis). After the second tumor was found they did an MRI to make sure nothing was lurking in the opposite breast. Had they done that first, I might have just had the mx.

If you like lots of facts, Dr. Susan Love's Breast Book is quite detailed and easy to understand. Stay off Google because you don't know if the info is correct or recent. This site has dependable info.

I too struggled with this decision. My BS had a helpful sugesstion. She told me we could start with lumpectomy and the sn biopsy to have more information about what we're dealing with. She said I could chose a mx and recon at anytime and insurance was required to pay for it. So that's the route I went, lumpectomy first, but in the back of my mind I knew I wanted mx in the future. I just couldn't decide on recon  and needed to buy a little more time.

I had close margins and was told that following chemo I'd either need another lx and rads or an mx with no rads. My cancer was in my left breast and radiation near my heart concerned me, which made mx a little more appealing. I rationalized that for me, radiation was only necessary to save my breast, not my life, so if I lost the breast I could skip the rads. I was 53 at the time, with saggy breasts anyway, didn't seem worth the effort to save them. 

After deciding on mx I struggled with recon options. I knew I implants were not for me. I saw a PS about the tram flap, but there were some aspects of that surgery that I didn't like. I investigated the BRAVA bra and fat grafting too, didn't like that option either. Decided on going flat, but then learned about a PS in my area doing DIEP. I met with him and I was sold. Next decision was uni or bi mx. Went with bmx to achieve better symmetry.  

Although you can have only an mx then  reconstruct at a later date, my PS recommeded doing immediate recon because it would have a better cosmetic outcome. It also turned out to be a 13 hour surgery!  In the end, I'm pleased with the results. Of couse they are not like real breasts, but they are warm and soft and feel like "me", unlike implants which I hear can feel cold and somtimes uncomfortable. I had enough tummy fat to make 2 c-cup breasts and they're not saggy any more!  I'm very happy with the results of the tummy tuck too. I'll be having stage 2 surgery soon where he'll reconstruct nipples (amazing) and then they will be tattooed to look like an areola. 

So that's my story & how I arrived at my decision. Everyone's circumstances are different and its a very personal decision. There is no "right" answer, because as mentioned, the overall survival rate is about the same with either route. You just need to think about all your options and one will likely appeal to you more than the others. Good luck!

Diane, We all understand about being obsessed with this dx. Once you have made your plans, you will feel empowered and ready to proceed with your journey. Your best decision so far has been to read and participate here at BCO. Most of us knew nothing about BC - I just thought cancer was cancer period.

Your next decision - the surgeon. How soon is he leaving the country? You need to have your post op appointment with the actual surgeon at about two weeks. That is when he will give details and answer questions about your final pathology report. If you had an lx that shows clear margins, then he will release you to an oncologist of your choosing. (I did not have clear margins and had a reincision - an easy surgery performed two weeks after first). BTY surgeons can not see the microscopic cancers cells so 2nd lx is not uncommon. You should be able to contact your surgeon for at least two months post surgery. Would you be okay with being passed off to an associate of his for further follow ups?

Gentle cyber hugs, Becky.

Diane, you mentioned how you wished you could talk to a Dr. but it was the weekend. I chose my oncologist partly because of her accessibility. On first visit she gave me a calling card with the phone number which I can call anytime, 24/7 and speak to either her or one of the other oncologists in her team. The phone is answered not by a message taker, not a NP, but an oncologist! My cancer center has an Oncology Nurse Navigator to help too. I haven't needed these services, but it is very reassuring that they are always available.

If I were you, I'd take my time with this decision. Once you have an MX or BMX, they don't grow back. My BS did not recommend MX for me. Survival rate would be the same for me. I didn't think about it too much after that, but over the past few months I've learned a few things that have made me feel confident in my decision.

BMX does not guarantee that you will not have a recurrance. I've learned of many women who have had a recurrance after BMX.

BMX does not guarantee that you will not need radiation. So if you choose MX or BMX to avoid rads, you may be disappointed.

As one of the ladies posted, you can do a LX, see what it shows, and decide later to do MX. Take your time, there is no huge rush. Many younger women actually do fertility treatments to harvest eggs prior to BC treatment. If their lives were in danger for waiting, I'm sure the docs wouldn't let them do it. Nothing is going to change very much over the course of a few weeks.