What are the questions that you should have asked your doctor?

Bella, what I have here is not a list of questions for your surgeon, but a list of considerations for you as you are making your surgical choice between a lumpectomy, mastectomy and bilateral mastectomy.  I've posted this quite a few times before and 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 you figure out what's right for you - both in the short term but more importantly, over the long term.  As you go through the list and think about how you feel, you probably will come up with some questions to ask your surgeon about.  Hope it helps!

• 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 it's discovered that you have invasive cancer in addition to the DCIS and the area of invasive cancer is very large and/or if it turns out that you are node positive.  Keep in mind as well that sometimes women who have lumpectomies for DCIS (particularly smaller amounts or lower grade) may be able to avoid radiation if they have large post-lumpectomy margins (10mm+).
• Do you want to avoid hormone therapy? If you are ER positive, you are almost certain to be prescribed Tamoxifen if you have a lumpectomy. Tamoxifen may be recommended if you have a single mastectomy but it will be optional (the benefit will be protection of your remaining breast). Tamoxifen will not be necessary if you have a bilateral mastectomy, assuming that your final diagnosis remains pure DCIS (i.e. with no invasive cancer). Tamoxifen reduces the risk of distant recurrence (i.e. mets) in addition to lowering the risk of local recurrence which is why it is often still recommended for those who have invasive cancer, even if they have a bilateral mastectomy.  But distant recurrence is not a concern for those who have pure DCIS; only local recurrence is a concern.
• 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 and have 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.
• 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); 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's a huge negative.
• 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.  As you read this board, something that's very important to keep in mind is that almost all women are thrilled 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 as bad as they feared.  The real impact of the loss of our breasts doesn't hit most of us until months or even years later.  
• 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.  Be aware however that a mastectomy doesn't totally eliminate your risk of local recurrence (i.e. in the breast area) and, should any invasive cancer be discovered, a mastectomy has no impact whatsoever on your risk of distant recurrence (i.e. mets).  Keep in mind too that worriers are worriers.  I've noticed that some of the women here who worry the most are those who've had bilaterals.  They had the surgery to reduce their worry but someone who is prone to worry is going to find something to worry about and the fact is that after a breast cancer diagnosis, there always is something to worry about. 
• 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 does not recur in the contralateral breast so your current diagnosis does not affect 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 from your oncologist - don't assume that you know what it is (mine is high but it's much less than I ever would have thought).  EDITED TO ADD: Also talk to your oncologist to 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.   
• 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?

Yes I agree that was excellent!!!

I had a smx 2 weeks ago and it was never mentioned that I would possibly have radiation anyway and no one went near hormone therapy!  Im glad I dont need radiation or chemo since everything was clear, but I have to still sit through an Onc appt next week to discuss tamoxifin and I am not happy.

I would add genetic counseling to the list.  Because of family history, it was determined that I probably had a 7% chance of carrying the BRCA1 or 2 genes.   I dont, but if I did have the genes, I would then have looked more into a BMX or Ovary removal.  That was the game changer for me.  I had the SMX because I am hedging my bets that it wont come back - and I couldnt see me losing BOTH nipples for a maybe.  But that was my personal choice....the nipple loss was the tough one for me....more so than the breast - but I am starting recon.

Good luck to you.  Its definitely a journey!

Definitely ask if you are a candidate for nipple sparing mastectomy, if your surgeon performs this type of mastectomy and what their level of experience is.

Suebee, thanks!  Adding a point about genetic counselling is a great idea.  I had the BRCA test and if I'd tested positive I certainly would have been more inclined to have a BMX.  I will edit the post and add that point in where I'm talking about future BC risk. 

zz2c, I don't agree about checking the nodes before making the surgery decision, particularly for someone with DCIS.  Since pure DCIS can't travel to the nodes, many women who have DCIS who have lumpectomies never have their nodes checked at all  - it's just not necessary so there is no need to be exposed to the risk of lymphedema. Should some invasive cancer be found during the lumpectomy, an SNB can be done later.  For those who have mastectomies, if the DCIS is high grade and there is a reasonable risk that some invasive cancer might be found, then an SNB is often done at the time of the mastectomy because it is so difficult to do an SNB after a mastectomy has been done.  Even for those with invasive cancer, the surgery choice has nothing to do with whether or not there are cancer cells in the nodes. If someone is node positive, it means that the cancer cells have already started to move beyond the breast.  While I read on this board often that women say that they'll have a mastectomy if they are node positive, in fact, that's kind of like shutting the barn door after the horses have escaped.  Removing the entire breast when the cancer is already in the nodes does nothing to improve survival rates. That's not to say that those who are node positive shouldn't have mastectomies or BMX but the positive nodes really shouldn't influence that decision. 

Beesie- I had read your posts concerning Tamoxifen and bilateral and so I knew when I saw my onc that I did not want to go the Tamoxifen route. I think about this almost daily and am very thankful to you for giving me the knowledge and confidence to make that choice.

Annielynn, what did your oncologist say about Tamoxifen?  It's pretty unusual that oncologists recommend Tamox to those who have bilaterals for DCIS.  In my case I had a single mastectomy only and my oncologist didn't recommend Tamox - I've seen that quite a bit around here too.  

Bella, does your brother understand that your breast cancer is DCIS, all non-invasive?  For those who have invasive cancer, it is standard practice to recommend Tamox even after a bilateral but that's because of the risk of mets.  Tamoxifen, because it is a systemic treatment (just like chemo), reduces the risk of both local recurrence risk and distant recurrence risk.  With a mastectomy, you've already reduced your local recurrence risk to such a low number that the benefit from Tamoxifen will be very small (a 50% reduction of a 2% risk is only a 1% benefit). With DCIS, there is no risk of mets so there is no additional benefit from Tamoxifen.  But those with invasive cancer do face a risk of mets and that's the reason why Tamox is usually recommended to them, even after a bilateral. Considering the serious nature of mets, even a very small reduction in risk is considered to be significant. 

Here's a link to the NCCN Treatment Guidelines for Patients: http://nccn.com/images/patient-guidelines/pdf/breast.pdf  

The NCCN guidelines are considered the gold standard and are used by most doctors in the U.S.. Under DCIS (on pages 10 - 11 and 64 - 65) what they say about Tamoxifen is:

Consider Tamoxifen for 5 years for:

• Patients treated with breast-conserving therapy (lumpectomy) with or without radiation therapy, especially for those with ER-positive DCIS
• Risk reduction therapy for opposite breast.  Counselling for consideration of Tamoxifen for risk reduction.

So as I interpret that, the first point means that Tamoxifen is not recommended for those with mastectomies as a means to protect or reduce the risk of the breast that had breast cancer (because the mastectomy has already sufficiently reduced the risk). To the second point, I read this to mean that Tamoxifen would not be considered necessary for those who had a bilateral mastectomy because there is no longer a need to consider risk reduction therapies (seeing as the mastectomy has already reduced the risk by such a great extent). Even for those with who had single mastectomies (as I did), counselling should be provided (I assume to discuss risks and benefits of Tamoxifen) prior to deciding whether or not to take Tamoxifen for contralateral breast risk reduction. These guidelines are completely consistent with what my oncologist explained to me.

It will be interesting to know what your oncologist says. And keep in mind that a surgeon's role is to operate; an oncologist's role is to recommend on the entire course of treatment, including post-surgical treatment. So it's really the oncologist who is the expert on what treatments are required after your surgery is done. 

Edited to get rid of the strange italicized copy on one of the paragraphs (don't know how it got there in the first place!). 

Sent you a PM. My breast surgeon is at the BI and I adore her. She is really good. :-)

*susan* 

Beesie - yes and I think we even logged into the NCCN website if I am correct!  I also thought that I would reconsider my decision about the drug after a few years to see where research has gone by then too.