Newly Diagnosed - types of surgery suggestions?

jklmtl- One of the hardest parts of having breast cancer is all the choices you are given in your treatment.  And trying to choose what is best without having a lot of knowledge about BC and all the different kinds is even harder.  There is a great thread on here called "Past post from Beesie on understanding DCIS".  Beesie is a member on here who is very knowledgeable about DCIS and this post will educate you a lot about it.  To find the thread go to the Search box in the upper right hand side of your screen.  Then under keyword(s) type in the title of the thread.  You'll have to scroll down a bit to find the thread but it's there.  

There are a lot of variables that come in to play when deciding between MX and lumpectomy.  Things to consider are family history, if you carry the gene if you've been genetically tested, are you the type to constantly worry you'll have a recurrence if you going with lumpectomy (like I am), do you want to breast feed more children, are you worried at all about aesthetics and your reconstruction options and the list goes on and on.  It really becomes a very personal decision.  The reasons I chose a bilateral mastectomy over lumpectomy was my Grandma passed away from a BC recurrence, I have a young son, I knew I would be constantly worried about recurrence, I didn't want to have to do radiation, my breasts were small so a lumpectomy would have been very disfiguring and radiation can make it challenging (though not impossible) to do reconstruction and since my DCIS wasn't close to the nipple I was able to do a nipple sparing mastectomy on both breasts which is a lot less disfiguring.  But you also need to be aware that a mastectomy will leave your breasts, and nipples, quite numb.  It is major surgery with a long recovery.  You could opt for nipple sparing but if they find cancer in the nipple during the mastectomy you could still lose them.  Depending on your pathology report you could still end up having to do radiation or even chemo.  I know this all sounds overwhelming which is why you need to educate yourself as much as possible so you can make the best decision for you.  I would check out the American Cancer Society webpage, too, for more info.  The good thing (if anything can be good about breast cancer) is with DCIS you have time to do your homework.  Don't rush into anything that you are going to have to live with the rest of your life.  I'm sorry you are having to go through this, especially during what is suppose to be a very joyous time with a new baby.  Just know you've found a wonderful site here.  The women on here were truly my lifeline and source of great support as I was going through treatment.  Best of luck to you. 

jklmtl, understanding DCIS (Kate, thanks for including that link and the kind words!) is important to your decision.  Figuring out what for you are the pros and cons of lumpectomy vs. mastectomy is also important.  Here is a list of considerations that I put together a while ago for someone else 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. 

• 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? 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.  Some women love their reconstructed breasts while some women hate them.  Most probably fall in-between.
• 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. Are you 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 your breast looks after a lumpectomy.....  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 the experience that someone else had because your experience might be completely different.  Make the decision based on knowing yourself.  Do what's best for you.

Good luck with your decision and with whatever surgery option you choose.

Beesie- What a great post.  Very thoughtful and well written.  I am going to copy and paste because I come across this question all the time.  Your post should be copied and handed out at every BS office since most of this is not told to us by our doctors.  

Thanks, Kate.  I started with a just a few things on the list a few years ago but as questions have come up and as others have added their input, and as I've been here longer and have seen more of what can happen with all of these options, I keep updating it.  It's gotten to be pretty long but still there are probably things to consider that are not on the list yet.  If you think of anything, just add/edit away. And please, use it wherever and whenever you'd like.  That applies to everyone - additions to the list are welcome - and would be greatly appreciated - and please feel free to copy and paste away.

jkl:

After reading kittymama's post, I looked up cancerization of the lobules. I was wrong -- it's something different from LCIS or ILC. As kittymama said, it's DCIS that gets into some of the lobules.

The size thing really is important. At this point they won't be able to tell you the exact size with complete certainty, but there ought to be an estimate. Ask for it. "Really small" isn't a size. ;^)

I think the number "793.81" is a procedure code -- used for insurance.  

You might want to sit down and write out all the questions you have so far. You can even post the questions here and the other participants might suggest additional or different ones. 

Hi--I am just jumping in here, meaning I have not read the other posts--I only saw your start to the thread.  But I had a left mx a year ago for multi-focal cancer.  My first surgery was a lumpectomy.  Most docs told me the mx was necessary, but one doc told me that my main concerns would be cosmetic--that the lumpectomy had clean margins, but because it was extensive and because the radiation would further affect the apprearance of my breast, that the mx might be better.  (Plastic surgery without mx could have improved that.)

 I have been miserable with pain.  The cosmetic results are great, but I have nerve pain, and back and shoulder pain, and no one has any great solutions.

 So, my advice would be caution about the mx.  I wish I'd talked to more docs about breast conservation, because there are advocates for it.  I know some people are treated with a wide excision, and others have had great success JUST using tamoxifen--it can reverse the tamoxifen--there is a study going on right now at ucsf.

 I wish you all the best!