Double MX Panic

Cocolu

Good afternoon,

After reading many, many threads on this Forum, I am now completely frightened of undergoing a double MX this upcoming Wednesday.

I am really scared, mainly because having two choices (Lumpectomy OR Mastectomy) leaves me with the fear or making the wrong decision....

Also, The Plastic Surgeon already said that most likely he's going to end up putting expanders and after reading all the complications, number of additional surgeries and possible infections, I have not slept in days....

Can somebody please give me some reassurances in terms of statistics? How often these really bad things happen?

Thank you so much in advance. God bless you all....

Cocolu

Kat104

Cocolu, I'm so sorry you're in such a scary time right now! I don't have statistics for you, but please remember that people who have complications are much more likely to post here for support than people who don't. You're seeing a skewed sample.

I had a left mastectomy with tissue expander placement a couple weeks ago, and the days leading up to it were worse than the day of surgery! I was so scared and then so relieved when I woke up and it was over. I know it's still early, but I did not have any immediate complications. I'm now in the limbo of not knowing my post-surgery treatment plan, and that is more distressing to me than the surgery recovery. I know I only had one versus your double MX, but I hope it's helpful to hear that surgery went smoothly for me.

As for making your decisions, I think we all struggle with that. I was afraid of frustrating my BS with my indecision about some surgery aspects, and she said that my only wrong choice would be to ignore the problem. That breast cancer treatment is full of complicated, difficult choices, and we do the best we can.

Best wishes to you, and I'll be thinking of you as you get to Wednesday.

Kat

muska

Hi Cocolu, I am 3.5 years out from the same surgery you are scheduled to have. I have not had any serious complications. I did not require additional surgeries or adjustments: I had BMX and then exchange surgery to replace expanders with permanent implants. If you have any specific questions please feel free to PM me.

Best.

Cocolu

thank you both so much for sharing your experience....

Trying to cope with it as much as i can...

gracie22

Cocolu, In case you have not already seen it, below is a cut n paste taken from a post from Beesie, a long-time BCO member, which covers most of the aspects of the mast v. lumpy question. It is really a personal choice. The most common problem (estimated to happen up to 30% of the time) is infection during post mastectomy reconstruction. Some choose mastectomy without reconstruction--"going flat" is becoming increasingly common. Infection is much less likely with lumpectomy and mastectomy without reconstruction. There are many types of reconstruction; those using expanders followed by implants or direct to implants are the most common. There are numerous types of reconstruction that use your own tissue to create breasts; they are more extensive surgeries and your body has to have enough "spare" fat to make you a candidate, but some women do not want implants and choose this. Not all plastic surgeons know how to do all of these procedures, so if you have something in mind that your own doc does not do, or does not have extensive experience in, get additional opinions. You are right to check on this; there is a lot to it! Ask your doc about the rate of post op infection in his reconstruction patients.

FROM BEESIE:

Quite a while back, I put together a long list of questions to hopefully assist anyone making this decision. We are all different in how we see these choices, so rather than base your decision on what someone else did, this list is meant to take you through the pros and cons of each option, so that you can figure out what's important to you personally, leading to a decision that is right for you. 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.

Please note that this list is written for women who have invasive cancer (Stage I or above). Some of the decision factors are different for women who have pure DCIS (Stage 0). A different version of this list, written specifically for women with DCIS, is available in my post on the first page of this discussion thread in the DCIS Forum: 'Topic: lumpectomy vs mastectomy - why did you choose your route?'.

Here is a copy of my earlier post, with a few updates and some new / more recent research upfront.

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Before getting to the list of things to consider when making a Lumpectomy vs. Mastectomy vs. Bilateral Mastectomy decision, 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 generally shown is that long-term survival is the same regardless of the type of surgery one has. The reason that the choice of surgery doesn't affect survival 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 generally affect survival rates. There have been a few more recent studies that have however shown different results. A couple of studies have shown that survival might actually be higher for those who have a lumpectomy, possibly because these women usually also have radiation, whereas women who have a MX don't usually get rads. But another recent study suggested that younger women may benefit, in terms of long term survival, from a MX.

Here are a number of the studies that compare the different surgical approaches: (Note that a number of these articles are from Medscape, and you will have to register with them to be able to view the articles.)

April 2016 Is breast conserving therapy or mastectomy better for early breast cancer? and

August 2016 (this is another write-up of the same study as above) Young Patients With Early Breast Cancer Live Longer With Mastectomy

December 2015 Ten-Year Data: Lumpectomy and Radiotherapy Trump Mastectomy

December 2014 No Survival Benefit for Increasingly Used Bilateral Mastectomy

January 2013 Lumpectomy May Have Better Survival Than Mastectomy

October 2002 Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

October 2002 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).

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• Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that your choice of surgery – lumpectomy, mastectomy or bilateral mastectomy – will not change the recommendation as to whether or not you should have chemo, Herceptin (if HER2+) or endocrine (hormone) therapy (if ER+). So you can't avoid any of these treatments - if your MO believes they are necessary - by opting to have a MX or BMX. (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.)

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• 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.

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• 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.

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• 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.

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• 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?

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• 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).

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• 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 breasts and 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, 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.

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• 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.

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• 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.

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• 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?

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• 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 vs. what it will be if you have a MX. Is the risk level you will face after a lumpectomy + rads 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 a MX or BMX does not mean that you no longer need to remain vigilant; you must continue to be checked for breast cancer. Although for most women the recurrence risk after a MX is low, anyone can still be diagnosed with a recurrence or a new primary breast cancer even after a MX or BMX. This is because it is impossible for the surgeon to remove every cell of breast tissue; some breast tissue always remains even after a MX or BMX, around the edges of the breast, or just a few cells against the chest well or the skin. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact on your risk of distant recurrence (i.e. mets).

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• Do you know your risk to get BC again, in either breast (if you have a lumpectomy) or your non-cancer breast (if you have a MX)? 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 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 for BRCA mutations). Those who are found to have a genetic mutation may be at very high risk to get BC again and for many women, a positive genetic test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative genetic test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist and determine if you should see a genetic counselor. 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).

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• 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?

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• 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? Consider as well how you might feel if your reconstruction is difficult and the results not to your expectations.

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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 and unknowns associated with each of the options. Good luck with your decision!

Edited to add: This list, and the research findings at the front of the list, has been cut and pasted into many threads over the years, whenever someone has asked the question about choosing between a LX, MX and BMX. I am not on the board much these days, so if you find the list to be valuable and you see a post where someone is struggling with this decision, please feel free to copy and paste.

Cocolu

thank you. I had read that and i wished i could answer some of the questions, but right now i feel like I don't know anything..

Lastthingiexpected

Cocolu- you are going through a very difficult time. I understand and wish you well. I have just completed all the surgeries in my profile. While I was going through it, it felt never ending. Like a long tunnel filled with endless MD appointments, medications, pain, significant physical changes, along with a huge emotional toll. But it is over for now. No complications, terrific reconstruction result. I never doubted my treatment decision but it was not easy. It was accomplished with the intense support of my family and a excellent team of providers. Feel free to PM me.

Cocolu

thank you LTIE. I might in fact PM you....

Newgirls

hi coculu. Yes it's a scary time. I remember sitting in the surgical intake room with my head on my husbands shoulder thinking that I could just get up and walk out. Didn't have to go through with it but I did. Had great confidence having it done in Boston with experienced docs. I had no complications and have a great result. It's such an emotional time!

ElaineTherese

Hi coculu!

I chose a lumpectomy because I wanted to avoid reconstruction and its potential complications. (I have twins with autism and have to be on my feet a lot.) But, plenty of women have mastectomies and reconstruction without complications, as you can see. One thing to remember about these boards: the women who post the most are the ones who have had problems and/or complications. If someone doesn't have complications, she is unlikely to post about it!

The same thing goes for hormonal therapy. I have had minor side effects from hormonal therapy, but there are plenty of threads devoted to complications from hormonal therapy.

Best wishes! and ((Hugs))

Beatmon

I had BMX and then waited a year before reconstruction. None of it was fun, but certainly it is doable. Don't try to be brave...take your pain meds as needed. You can do it

Dafne

Cocolu, being on the same boat as you, I can totally relate to how you feel. I decided on the bilateral mastectomy, after fighting hard to get this decision.At first I was on the lumpectomy+radiation route, hoping I could save my breasts. But I took 5 different opinions (one coming from England, as I send my biopsy papers there with a friend), and everybody urged me towards mastectomy.

I've read Beesie's list, and God, I wish I had the answers to even the half of it. Most of the time I feel lost and like I know nothing, only swam in a sea of fear and uncertainty, although I 've read so much about BC that I could easily say I wish I knew less than I know.

A dear friend told me 'you can't make a decision based on fear, you 'll end up regretting it". Well, yeah, but hellooo! Either decision has some amount of fear in it. Or at least it has for me. The lumpectomy+radio route was because I was (still am) afraid to lose my breasts and my self image, my sensuality and all, but there would always be the fear if and when my DCIS will decide to wake up, and if it does nobody can assure me what stage or grade will that be.

The mastectomy route will offer me some peace of mind in the sense and hope that I'm doing the most I can to lower the chances of it waking up and/or coming back. I know there are no guarantees, don't know how my reconstruction will go, what the aesthetic results will be, how I'll cope with the pain and all. It's like a leap of faith, I guess... But I'm still young (well ok relatively young lol), and just 7 months married. I love my husband, I love my life, I want to give me the best chance to live it.

All the best, please let us know how things go for you, and a big thanks to all the ladies for their answers. You've helped tons!

tnd22

gracie22- just read your list of questions and stuff, those are great. Wish someone had told me those in April before my surgery, but I made the decision to have a BMX and think that was the right decision.