difficult decisions- types of BMX surgery, experiences

tshire

I am trying to figure out what I want to do. I just met with my breast surgeon yesterday. I am 31 years old and this is my first (and prayers to God) only battle with BC.

My first inclination is to get a double mastectomy with reconstruction. My surgeon said she supported my decision. I know the survival rates are the same, but the recurrence rates are less. I know not THAT much less, but the type of cancer I have (grade 1, mitotic rate 1) I probably wouldn't respond to chemo or radiation as well and I'm worried about what else might be left in there if we don't take everything.

And honestly, even if I had a lumpectomy I would still be disfigured and need reconstruction because of how close the tumor is to my nipple. I know with a lumpectomy I would spend the rest of my life worrying too, because I have an anxious personality and a cancer that is so slow and hard to kill (?).

So basically I am wondering what kind of surgery to have. What are your experiences with the different BMX experiences? I know I want to do some kind of reconstruction. Did you do implants? What kind? How did that go?

Did you do the surgery where they remove abdominal fat? How did that go?

Do you regret your decisions at all? Were there lymphedema complications, even if they didn't take many nodes?

I know that's a lot of questions. I haven't been able to find a plastic surgeon yet who will take my insurance and my surgeon says I need to make a decision in the next week.

Thanks,

Tiffany

grammakathy

Tiffany - this is a big decision and there are so many variables.  I took it one step at a time.  I was twice your age when I was diagnosed so that changes things also. 

I went through my Mx for my cancerous breast and then recovered from that surgery.  I decided on the Mx because I live 45 minutes away from where I would need to go for radiation. I also read that if I wanted reconstruction, it would be more difficult if I had radiation. 

Next (2 months later) was the visit with the MO who did the Oncotype testing and recommended Arimidex for 5 years. 

Following that was an appointment with my PS to get her recommendations.  At that point I had decided that I wanted a prophylactic Mx on my other side.  I made that decision because I wouldn't have to have sentinel node and she would do the surgery since no cancer was involved.  My BS was a good surgeon but his work looked nothing like my PS when she did the other side.  The PS explained the various types of reconstruction.  At my age, I didn't want to have muscles pulled from other areas of my body in a twelve hour surgery.  So I chose tissue expanders, and eventually the shaped implants, which have given me a sleek, athletic look.  Again, at my age, I am not into voluptuousness (OK, I admit it, I never have been!).  I didn't need fat grafting or additional procedures.

I hope that helps you - but remember that you need to decide what is right for you.  Others can help by explaining how they decided but your path can be totally different.

Best wishes and I hope you have a BS and find a PS that works well with you.  It makes a huge difference.  My BS did great work but was a real jerk, and if I had it to do over again, I would have switched right away.  The outcome wouldn't be different but I shouldn't have had to deal with an arrogant egotist who didn't like to explain things or listen to me.  I'm sure you can imagine the evaluation I gave him when my insurance carrier sent one to me!

. 

debiann

I did bmx with immediate DIEP (abdominal flap). Here are some things to consider:

reconstruction is a process, it takes awhile till you see the final results

There are different types of abdominal flaps, TRAM, Free TRAM, DIEP. TRAM removes the most ab muscle.  Free TRAM takes a small amount of muscle, DIEP no muscle. Talk with your PS, not all  do Free TRAM or DIEP. 

Understand you don't always get what you want. Flaps can fail and you then have to choose between implants or flat. In my case, there were complications and my DIEP turned into a free tram.

If you are athletic you may notice ab weakness that interferes with your activities. 

Cosmetically the tummy tuck can be great, but some are not pleased with the results noting problems like "swelly belly" and "the ken doll effect" (swelling in the pubic area).

There is loss of sensation in both the breast and tummy area. As nerves regrow, some sensation returns, it is different for everyone. 

Overall I am happy with my decision, but I hit some low points along the way because recon happens in stages, so getting to the end takes time. I'm happy with the cosmetic results, but sometimes the loss of sensation, particularly in my tummy area, upsets me. I was expecting this to happen to the breasts, but there is a wide area around my belly button that is still numb. I'm 8 months out from surgery and hoping that will change in time.

Good luck to you.

Warrior_Woman

Hi Tiffany,

I remember the anguish of trying to make this decision. My MO asked me how I thought I'd feel after a lumpectomy and after a BMX. I'm a very anxious person to begin with and wanted to lower my risk of a local recurrence. I think you know that a BMX does not lower your risk of a systemic recurrence and we all have concern about that. Still, I did not want more mammograms and call backs so I chose the BMX. This was the right decision for me but not everyone. Part of my decision was also due to multiple diagnosis as indicated on my signature line. I feel good about my decision. Most women have tissue expanders and implants but there are many reconstruction options. After my first attempt failed I had flaps with my back muscles. That is not the first choice for most women but should you find that is your decision I am glad to talk with you.

tshire

I think I am leaning toward implants right now because I want to avoid as many complications as possible. Grammakathy, if you don't mind me asking, why did you need 3 separate surgeries for implants?

ElaineTherese

tshire,

I realize that you have opted for BMX, and that is your decision. I respect it. But, to clarify, lumpectomies don't always need reconstruction. I had a lumpectomy that was just above my nipple and I've had a very good cosmetic outcome without reconstruction. I'm also happy to have retained sensation in my boobs. Sorry for the digression. Carry on, and best wishes for your surgery and reconstruction.

tshire

Thanks Elaine. My breast surgeon did say I would lose the nipple with lumpectomy. My tumor is practically in my areola. It's a hard decision, believe me. Everyone keeps telling me it's nice to "have options." That's true I guess...

grammakathy

tshire - my first surgery was with the BS and he removed my cancerous breast, leaving extra skin but removing the nipple area, kinda like taking the inside fruit of an orange out and a section of the orange peel about the width of several sections.  That surgery was done on Oct 24, 2013.  The second surgery was Feb 24, 2014 and my PS removed my non-cancerous breast and placed tissue expanders in both sides.  The third surgery was Sept 23, 2014 and the TEs were swapped out for the implants.  The only surgery that was difficult for me was the first one.  I was lethargic for a good six weeks, even though I forced myself to walk around the block several times a day.  The next two surgeries, I woke up and was totally myself immediately.  I attribute the difference to the anesthetic used during surgery but couldn't tell what was different when I ordered a copy of my records.  I do know that I checked into the surgery center before noon and wasn't home until 10:00 that night.  I didn't go into surgery until 6:00 and I suspect they were sedating me during the day to keep my anxiety down.  They never asked my pain tolerance, which is high.  The second and third times, I made sure to tell them that pain doesn't bother me until about level 8 out of 10.  It is important to speak up and talk to the nurses.  But when you don't know what is happening, they treat you like an average patient.  Good luck tshire!  Another thing, if I had chosen for implants at the same time as my first surgery, it would have been delayed because a BS and PS need to be coordinated so they are both there at the surgery.  But the real reason I didn't choose that is because I wasn't ready to commit to anything before I knew if clear margins could be obtained and the grade of cancer (whether it would require chemo and/or radiation).  I only wanted to deal with one thing at a time.

snorkeler

My tumor was right under the areola. The surgeon explained the lumpectomy this way: imagine a pie, taking out a slice, and then closing the pie up again. She had to take a little part of the nipple, and being small breasted, I was expecting a more noticeable disfigurement. But symmetry is excellent, and I still have full sensation. A lot of it is the skill of the surgeon and just plain luck. If she didn't get clean margins, she told me the second surgery would be a mastectomy. Best of luck with your treatment.

tshire

Did anyone have issues with lymphedema after mastectomy, even if they only took out the standard 1-3 nodes?

grammakathy

I had "cording" under that arm but it resolved itself within three months.  Both underarms feel the same now.

Janett2014

tshire, in April of 2014 I had BMX with TEs which were exchanged for silicone implants three months later. I had pretty smooth recoveries from both surgeries, with no major issues. I had a total of 11 nodes removed and no lymphedema issues. I know that could happen in the future though.

I'm older than you, and like someone else above said, I decided against the flap procedure because of the surgery being so long (11-12 hours), and I didn't want to have to recover from a wound on another part of my body. Also the PS said they have to break one of your ribs during the surgery which freaked me out. Despite all that, if I had been your age I might have chosen that because it is a more natural look and feel. I know there are many women on this site who are happy with the flap results, but I'm happy that I chose implants. They look good. At the exchange surgery my PS made my nipples (Origami method). He tattooed color on them two months later.

Yes, the whole process is long even when things go well. I found it to be quite a lesson in patience.

halee

tshire -- I had 3 lymph nodes removed. I developed cording within 2 weeks, and just this last week was diagnosed with lymphedema. It's mild so far, and will hopefully stay that way, but it is a risk no matter how many nodes you have removed. My doctors said sentinel node (removing 1-3 nodes) has a 5% lymphedema rate and axillary 20%.

Warrior_Woman

I've benefit greatly from physical therapy. I developed cording on a few occasions and they resolved it with one visit each time. I also have full range of motion and no pain or limitations. I had one node removed and despite the many complications I've had that could have triggered LE I am fine. My OS said that my LE risk is about 5%.

Ridley

tshire -- I had a lumpectomy first and then had a bilat mastectomy with diep recon. I wanted some time to think through things, understand recon choices, etc.  As it turns out my pathology from the lumpectomy came back more complicated then expected, and a mastectomy was recommended for one side.  I chose to do both.   

I'm 2 years out and finished with reconstructive surgery -- I'm happy with the results and would make the same decision again.  I'm also ok with going with a lumpectomy first -- got the cancer out and gave me some time to consider my longer term options.

Good luck with your decision.

 

windingshores

I did one at a time (and am "going flat"). Since you say radiation and chemo are unlikely (though you don't know that for sure, I assume), you could do your "cancer breast" first and your other one later, in a couple of months, next year, whenever you want. Just another option. I found it a little easier to endure the post-surgical pain and limitations on one side at a time, but many want to get it over with all at once.

tshire

I am now considering just a single mastectomy, pending results from a breast MRI I'll have on Tuesday. If there's DCIS or any other issues lurking in the other breast, I'll take that one off too. i see what you mean about dealing with it incrementally.

I'm really scared of just a lumpectomy. I also really don't want to have to do radiation. But if it's in my nodes, you're right, I'll have to do it anyway.

SoCalGrl

I'm recovering from a BMX (with immediate TE and 2 nodes removed) and honestly it hasn't been as bad as I expected. I was up walking around a couple of days after surgery. My right breast was the cancerous one with both IDC and DCIS and I elected to remove the left breast at the same time. I'm only 40 years old and I struggled with whether or not to take the healthy breast and whether or not to try and save my nipples. My BS said that medically there was no reason to take the healthy breast, but for cosmetic reasons she understood because it's easier to obtain symmetry. I'm currently 5 days post surgery and I'm doing well. I don't regret my decision. I'm a worrier by nature and have been prodded and poked more than enough and didn't want to be under constant scrutiny with the healthy breast.

Good luck with your decision, I know it's hard.

aff

I had a skin sparing umx with immediate DIEP reconstruction. I agonized over umx or bmx. In the end umx was the right decision for me. That was a year ago and with every day that passes, I feel better about this decision. I have no regrets at all about umx or DIEP reconstruction. Even though it has not always been an easy recovery from this surgery, if I had to go back and do it again I would make the same decision every time. I had chemo before surgery and radiation after. This decision is so personal and it has to be the right decision for you. We are here to answer any questions you may have. I wish you all the best as you make this incredibly difficult decision.

ruthbru

These are difficult decisions and I think it is good you are looking for input so you have a better idea of what you are getting into (no matter what you choose). I am copying over a post put together by beesie, on of the resident experts on the boards. It gives a good, non-partial list of things to consider as you work your way through this. Best of luck!

"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!"

ironmagnolia

I see that you are located in Austin, TX. I strongly recommend that you see the PRMA group in San Antonio for a consult.They do all kinds of flaps and are one of the premier groups in the US doing the DIEP flap. These guys can guide you in your reconstruction decision and you will be in great hands, They are very well regarded in the US and I am very fortunate to have had them practically in my back yard when I needed BMX with immediate recon. Dr Chrysopoulo did a beautiful job for me and I couldn't be happier with the results.

windingshores

That's a great list. I would add something about whether or not having a bilateral versus uni would cause a later surgery date, or if a lumpectomy might mean an earlier one versus either. I think it is important to get the cancer out, and my surgeon told me that since I did a single MX first, I could go in earlier, and I did.

dtad

One thing to think about is whether or not you have dense breasts. This makes detecting any other malignancies much harder. This was the main reason I chose BMX over lumpectomy.

MsVeryDenseBreasts

Thanks for posting your experience. I'm considering PBMX but I'm a ballet dancer and I'm very concerned about the recovery period and the prospect of not fully regaining complete range of movements/strength in my torso and arms. Anyone out there a dancer who has had experience with a PBMX? Thanks.