Need a forum for the choice of mastectomy

Hi Joan,

I can't answer your questions on reconstruction but I did have a double mastectomy this month. I had a lumpectomy first, followed by a re-excision, but there was DCIS in the margins both times. Had I still opted for radiation instead of more surgery, my risk would have been greater than I wanted.

I was told that I can still get breast cancer even with my BMX. The reason is that individual breast tissue cells can be other places in your body.

Mine was also HER2 but the tumor was too small to have much proven treatment value (chemo/herceptin) so I did not go that route.

I am still waiting for the path report post-mastectomy but it is unlikely I will require radiation.

Looking at your stats, your cancer was small, early stage and with clean margins and nodes. Your oncologist can best advise but from what I've learned, I don't believe you will see a statistical benefit for mastectomy.

I met with a plastic surgeon but did not opt for reconstruction. My PC told me that a really good result requires dedication and time. I definitely lack the dedication, especially as it requires more surgeries. Age is just a number - my PC recently did reconstruction on a 77 year old woman.

Best of luck with your research and decisions.. you'll learn a lot on this forum!

Luna

Joanwill55 - You ask very legitimate questions and I appreciate your point-of-view. Regardless of our age (I'm 52), I think most (if not all) of us want to come out of this time looking and feeling good and whole. For some of us that includes reconstruction, and there are a variety of different kinds.

In answer to your first question - yes, even after a mastectomy, the cancer can come back. Surgeons cannot possibly remove every single cell of breast tissue, and so mastectomy is considered a risk-reducer, not a risk-eliminator. You may, or may not, need radiation after a mastectomy - only your radiation oncologist can answer that question.

I think the pros and cons of reconstruction are very personal and individual. I chose DIEP reconstruction because I knew I wouldn't be able to tolerate an implant under my pec muscle. I chose to have a unilateral mastectomy because I had one healthy breast and wanted to maintain sexual feeling. It didn't make sense to remove a healthy breast because my cancer (IDC) isn't often found bilaterally (whereas ILC is more likely to appear in the other breast). I wanted reconstruction because I wanted to look good in clothing, period. I have no illusions about how I look naked - my breasts will never match and they don't look perfect or "normal" (and I have a phenomenally talented PS). Even if I had done both breasts, there's no guarantee they would have matched.

Reconstruction is required to be covered by insurance, so you shouldn't have to pay for it out-of-pocket. If you choose to go to a PS that is not in your insurance network you may have to pay more, but I can't imagine a situation where you would pay the full cost OOP (unless you chose to see a doctor in another country perhaps?)

I hope this helps - good luck!

Lucky, your first sentence sounds a little awkward. " This is just my personal opinion but I think the only time reconstruction is necessary is if you are parading around naked" comes off just a little bit...hmmmm. I don't want anyone to feel like they should be ashamed of wanting or not wanting reconstruction. Perhaps you'd want to tweak that statement.

Oh, for pete's sake, settle down. No insult or judgement intended. Unless you shower fully dressed we all parade around naked. My only point was the choice for reconstruction would be different depending on whether it was how you looked in the mirror vs how you look in public. With forms or prosthetics no one need ever know and the OP could still be proud of how she looked

Reconstruction was very important to me. I was the same size as you although I am taller, 5' 6". My implant reconstruction was 100% covered by insurance and I was lucky enough to have no complications. I'm very happy with the results, and having "real fake" breasts to look at in the mirror has been very satisfying to me. Of course, I'm single, was very attached to my breasts, and hopefully have many years of life ahead of me, so those things influenced my decision.

JOANWILL, your questions are ones that many women have as they are struggling with this decision. 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.

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

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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. 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?'.

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 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).

• 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.)

• 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 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.

• 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 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 whatsoever on your risk of
distant recurrence (i.e. mets).

• 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).

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

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!

EDITED to change the formatting, hopefully making this very long post easier to read.

I also want to mention that because I don't post much on the board these days, anyone who would like to cut and paste this post into another thread where someone is struggling with a lumpectomy vs. mastectomy decision, or MX vs. BMX decision, is welcome to do so. And thanks to all who have done this in the past, particularly ruthbru!

Great list! One thing I might mention is to take a pix of your breasts. It might help when choosing options for recon. There are a lot of choices.

I opted for no recon but did have a consult with a PS. I found all the options overwhelming. I had no idea there were that many choices.

I didn't have recon because it would have meant multiple surgeries and no guarantees due to my personal circumstances.

Good luck! You can always change your mind down the road, either adding or subtracting.

bumping for Jillybeantabby.

Good questions. As others have said, yes, even after a BMX the cancer can come back, locally or as metastasis. If you have a skin and nipple sparing BMX, you may end up with breasts that look similar to your current ones. Most reconstructed breasts I have seen, however, look nothing like real ones. Insurance has to pay for recon in the US, as far as I know, although you should check that for cases when the BMX is prophylactic (as yours would be).

I have not had recon for many and various reasons, but one of them being the esthetics. When I was pregnant with my daughter, my breasts grew (to a B/C-cup), and afterwards they got soft, so that without a bra, the breasts touched my ribcage. I often wore a bra at night, so I wouldn't have to feel the breasts resting against my ribcage (besides they hurt all the time, but that is another story). I remember going to the doctor a few years later for a breast ultrasound and weeping through the whole test, because I was so ashamed to have someone else see them. So, based on that experience, I feel quite certain that recon would not make me happy.