Newly diagnosed and can't stop researching!

STOP looking at Dr. Google and Dr. Bing! They give you very general answers and nothing specific to YOU!

I agree with Houmom. I did opt for a BMX even though I could have kept the "good" breast. I just didn't want to have to worry about that one and I knew that I would. So I had a bilateral and I don't regret it at all. I did not have reconstruction because I didn't want more surgery and also because I am almost 71 and didn't want to bother. I'm perfectly happy going flat although I will admit that it took me a while to be comfortable in public. Because my tumor was so small and was not in any lymph nodes, I did not need chemo or radiation and am on hormone therapy instead.

Once you have talked with your oncology team, you will have all of the facts you need to make the decision that is right for YOU. Nobody can or should tell you what to do. When the time comes, you will know what to do. In the meantime, breathe and try to stay calm. And if you can't stay calm, ask for something to help with your anxiety. I was put on Xanax and then switched to Zoloft and that has been my lifesaver!

Best of luck - make sure you keep us posted. You have a ton of support here.

I chose to have bilateral mastectomy for several reasons. Most importantly, I have very dense breasts and mammogram didn't pick up my fairly large tumor 6 months earlier. I felt that I would never trust a mammogram again. Second, I know me and I am a worrier. I just decided I didn't want to be going through all that scanxiety on the other breast. And finally, I wanted to have good symmetry. My PS and I discussed the options and we ended up doing a nipple sparing on the non-cancer breast. I don't have feeling there but it honestly looks fine otherwise (or I hope it does once I get my exchange surgery). I plan to get a tattoo on the other side.

Best of luck with your decision. It was a really hard one for me.

Hi Becky - I wanted to post because I chose lumpectomy, and it looks like the people above me chose mastectomy. I struggled as well - and honestly I was set in my mind to do a BMX. I just didn't want to worry anymore etc. I did the genetic testing. I did all the things you are doing. It turned out that I was Brca negative. And then when I got a 2nd opinion from a surgeon in a bigger city than mine, one of the 1st things he did was ask me what I wanted. And I said I wasn't sure but leaning towards mastectomy. And he told me for my case (we are all different) that my "odds" were the same for either mastectomy vs lumpectomy/radiation. He said that if I felt like I would always be looking over my shoulder, or just generally be anxious about it - he would recommend mastectomy. Otherwise he saw no reason that I couldn't/shouldn't do lumpectomy/radiation.

Here is a thing that I didn't realize - no matter what you pick you will still have some anxiety. Its our new normal - there is no perfect answer now that we have joined this club. I am sure you will get some clarity and once you pick your path you will feel better.

I am ok with my decision - hope you will be too. Feel free to message me if you have any questions. Oh I also wanted to mention that there was a part of me relieved to not have the major surgery plus reconstruction. My lumpectomy was my 10th lifetime surgery (and I am in my 40's) and I just was over it. But if you look at my signature line you will see that I still threw the kitchen sink at it. Good Luck.

I tried to go the lumpectomy route but it didn't work out for me since I didn't get clear margins twice. My MRI showed a suspicious mass in my good breast so I opted for a BMX. I don't think that I'll ever stop worrying about recurrence. I did everything that my Oncologist suggested (TC chemo, Aromasin) but you never know, it's just a waiting game. I also did the genetic testing and thankfully for my children everything was negative.

You have to make the choice that's good for you.

Bec-Ky- for the second diagnosis, lots of times it happens when they do an MRI for the initial diagnosis that they’ll find something suspicious in the other breast, leading to a second finding. Better to find out before surgery, for sure! Good luck today

I hope your MRI goes well! I had never had one before, either. It wasn't bad, just had to stay still for a long time. And yes, that's how they found the cancer in my other breast. The MRI showed a ton of suspicious areas, and it turned out I had multifocal cancer in the "good" breast, which couldn't be seen on mammogram because of dense tissue.

Bec-Ky - Best of luck with your MRI this morning! My MRI detected 2 other spots of concern, one in the healthy breast. After having an ultra sound guided biopsy they were thankfully B9 but.....I am nervous by nature and knew I wouldn't rest easy if I didn't have a BMX and I made that decision very quickly. My genetic testing was also negative. Ultimately I was not a candidate for LX as I didn't have enough breast tissue to create symmetry - I had implants so aesthetically it was reinforcement that this was the best choice for me and I wanted to avoid radiation. Due to my prior implants I was a candidate for direct to implant so the day of surgery my PS was able to put in silicone implants eliminating the need for expanders and a second surgery. Not everyone is a candidate and my understanding is that it's not something that's widely performed in all areas but it was helpful for me emotionally to wake up from surgery looking very similar to what I had before. As you continue to navigate through the testing hopefully your decision will become more clear.

I would just make a list of the pros and cons of each and that should make your decision easier. You have received a lot of good comments about both. I will add the following:

Both have equal outcomes as far as life expectancy.

Lumpectomy has higher rates of local recurrence, but not distant metastasis. Bilateral mastectomy is not a guarantee that you won't have local recurrence. I am an example of that.

If you have lumpectomy, you will continue to have mammograms and/or MRIs. That may be anxiety provoking, or may be reassuring. If you have BMX, there are no further mammograms, ultrasounds, or MRIs. This can be anxiety provoking too.

I also had a huge family history, which influenced my decision. I am happy with my decision.

Best wishes. Your doctors will help you sort out which decision is best for YOU in your unique case.

Beesie is one of the resident experts on the boards. I am copying a very well thought out, non-biased, post she did on this topic. Hope it helps:

"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!"

Bec-Ky, the approach you're now considering is exactly what I chose & I've not regretted it for a single minute. Recovery was fast (I was on a flight one month after my surgery, having already completed radiation) & my discomfort was minimal. If I get a recurrence or a second BC, I will deal with it at that time but I'm not going to worry unnecessarily about things that may never happen. Gather information, think about your options in light of your personal situation, make a decision & don't look back. Whatever you choose only has to be right for you. The previous posts (especially those from runor & ruthbru) provide you with a wealth of information. (The only thing I would add is a suggestion that you see a lymphedema PT prior to surgery for measurements, information & a post-surgical exercise schedule.) Take a deep breath & know that you've got this under control & that everyone here has your back. Good luck & keep us posted.