Just got my team jersey...

Hello Island girl. Sorry you had to join the team. I made the same decision you did. There is a lot to process and you will get a chance to talk to many medical professionals who can help you. Take care of yourself and surround yourself with good people support. 

I am 6 years out now, and I am beginning to hate Komen "For the Cure."

WAY TOO MANY WOMEN ARE JUST TOO SCARED

Do you know how hard surgeons worked to test out what was necessary, and what wasn't necessary to prevent cancer from coming back? There were hundreds of surgeon-years put into tests and studies, and, what they came up with is:

A bilateral mastectomy is way overkill for 0.4 cm DCIS, especially if you are post-menopausal, and if the tumor is low to medium grade.

I suspect that your surgeon already told you this, but there is absolutely no difference in length of life after BC if you have a lumpectomy or a mastectomy. Let alone a bilateral mast. But your quality of life after treatment is so much greater when you have a lumpectomy.

There is a wonderful sheet for decision-making done by our Beesie, that summarizes the whole thing.

Now then, as for fear, I had exactly the same reaction you did. But, my surgeon was one of those guys who spent lots of hours trying to cut down the awful results of unneeded mastectomies, and he talked me into a deal: Basically, we gave it a year, and if I was still terrified we would go back and take the boobs off. But, he really did not want me to maim myself unnecessarily. And I didn't. And 6.5 years later, I am still NED, and I am not scared anymore.
And I love not having to go thru what I see my friends who had mastectomies go thru - infections, and leaks, and replacements, and really ugly chests. One woman I know had a flap replacement (with a tummy tuck thrown in for good measure), and is still have surgeries 8 yrs later (over 20 so far) to try to keep her organs from falling out of her stomach.
Rare? Yes.
Horrible?
You bet.
But she really had to have a bilateral mastectomy.
You -- based on your diagnosis so far, don't.

Please, oh please, read this, and see how you feel:

The BeesieRMlulu is referring to is one of our resident experts. I am copying overBeesie's great post about things to consider when making this difficultdecision:

"Some timeago I put together a list of considerations for someone who was making thesurgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I'veposted 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 listand decided to have a lumpectomy, others have chosen a single mastectomy andothers have opted for a bilateral mastectomy. So the purpose is simply to helpwomen figure out what's right for them - both in the short term but moreimportantly, over the long term.

Before gettingto that list, here is some research that compares long-term recurrence andsurvival results. What the research has consistently shown is that long-termsurvival is the same regardless of the type of surgery one has. This is largelybecause it's not the breast cancer in the breast that affects survival, butit's the breast cancer that's left the breast that is the concern. The risk isthat some BC might have moved beyond the breast prior to surgery. So the typeof surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't affectsurvival rates. Here are a few studies that compare the different surgicalapproaches:

No Survival Benefit For Mastectomy Over Lumpectomy

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

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

Now, on to mylist 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 thatthis helps. And remember.... this is your decision. How someone else feelsabout it and the experience that someone else had might be very different thanhow you will feel about it and the experience that you will have. So try tofigure out what's best for you, or at least, the option that you think you canlive with most easily, given all the risks associated with all of the options.Good luck with your decision!"

     Hi Island Girl,

     I want to first say you sound so positive about everything and that is really good. I also think it is great to have your husbands full support. Both of these things will get you far with all of this. My name is Maggie, I was faced with a similar decision in 2010. I was diagnosed with stage 3 Her2+ breast cancer and was told needed a mastectomy. I chose a unilateral mastectomy (right side only) and although I now no longer need to worry if cancer will return in the right side, My cancer has now metastasized to my lung, abdomen and to my left breast which has me wishing I had done the bilateral. So I believe you are making the right decision.  Good luck with everything. Stay strong. we are all going to get through this together. :-)

I agree with LovebeingNana..the decision is a hard one..but I will say what my BS said to me" do what will help you lay your head down at night" after all it's you who has to do just that..

I went with the double mastectomy over lumpectomy...I'm just 2 weeks into recovery..and wouldn't change my decision..again because it's right for me.

Best if luck to you Islandgirl..this time is the most confusing and overwhelming..but you will get thru it

Like you said, islandgirl, it has all happened so fast.  In the end, this is strictly your decision.  But you need to do some more research first.  A mastectomy is forever. 

 If I had invasive cancer, I too would go straight for a mastectomy because I am not up for radiation.  In fact that is what I wanted to do two years ago.  My surgeon was all for it.  But with time, my fears calmed down and I discovered it just wasn't necessary.  Like you, I had DCIS, mine larger than yours but still quite small.  It is not invasive and there is much discussion on DCIS these days on what to call it; pre cancer, take the word carcinoma out of the definition?  

I also went for a second opinion with Dr. Michael Lagious, premier expert on DCIS.  He can easily be found on Google.  There is the Van Nyes test score, and cancermath.net.  There is much information on this web site.   Try the DCIS forum.

My best wishes to you.  I know you will do the right thing for you when the time comes.

Islandgirl - when you make the right choice for yourself you feel it in your gut.  Things make sense and it all just clicks in.  That's what happened to me, and sounds like it is happening for you as well.  Obviously a mx is a big deal and will have lasting and perhaps unanticipated consequences down the road.  But so will any choice.  People define quality of life differently, and for me it was far more important to not have this anvil hanging over my head anymore.  I didn't have any emotional attachment to my boobs - maybe I'm in the minority, but that's how it was.  I wasn't scared into doing anything - I was presented with options.  I'm happy with my choice, happy with my results, and happy with my life.  I sincerely have no regrets and I would not change anything.  It wasn't easy, but it was right.  I wish you all the best with YOUR choice.