The hardest decision I ever had

Shelly1974

So my bilateral mastectomy for bilateral ALH scheduled for January 27. I was thinking that I made up my mind and read all research. Couple days ago my friend who is cancer surviver that been thru the procedure called and was very direct saying I'm doing the mistake of my life. She said that 4 years after, she still feel pain and itching. That there is no moment during the day that she can forget the existence of implants cause how uncomfortable those are , the lose of sensation and much more. So since then I can't stop crying. Reading about so many complications. Could anyone tell me that you don't feel long term pain after mastectomy ? Is there anyone happy with it visually ? No complications? My options now is three lumpectomies and tamoxifen or double mastectomy and recovery. Can't sleep. Can't eat and just cry. What do I do?

Shelly

aunt_paula

I had bilateral mastectomies almost exactly a year ago. I didn't do reconstruction. I have some (mild) itching, but have been told it has to do with nerve regeneration. I didn't have any complications of surgery, and recovery was easy, but did develop lymphedema. I don't have a lot of sensation, but have regained some as time has gone on, not the same sensation as before, but not numbness. At some point I will probably have a scar revision surgery, but I am not in a rush to do that (would like to finish losing weight first). I am very happy with my results, and have no regrets. I hope you can find the same peace with whatever you decide--and there's no wrong decision if it works for you. Everyone is different, and there's no one-size-fits-all answer. I will be thinking about you.

Bikerbabe17

I'm so sorry you have to struggle with this.  I am not in this situation, and can't answer your questions, but I wanted to reach out and let you know we are here for you.  Have you posted your question on Mast discussion board?  You will hear from many women, I am sure.  Do you feel comfortable discussing your fears with the Navigator?  Having someone who is knowledgeable, and understanding can be a huge help at this time.  Give yourself some time to consider the options.  Surgery isn't for another few weeks, so you have time to change your plan.  Don't let anyone force you into doing something you are not ready to do.

Shelly1974

thank you so much for your kind words, I'll post the question in mast board. And I feel comfortable to discuss it with whoever till I'll have the courage to find what's right.

angelia50

I am not exactly in your situation but I had a uni mast. in 7/14 and have just finished my reconstruction. I dont' feel this itching you are talking about. I did not want a mastectomy, trust me, I did not want that. I was on board for lumpectomy but after deciding what all needed to be removed, it seemed the best thing was mastectomy. I am early on in exchange, so I am aware of the implant but its not uncomfortable. Sensation, of course, no nipple, no sensation. On my natural side, they did a lift and there is sensation there, when I took the tape off, a little too much sensation in my mind. You have to do what feels right for you and as for the feelings afterward, everybody is different. Some people are in terrible pain and others are not. If nothing else goes wrong with me, I think I had an easy time, no complications form mastectomy, no horror stories with the expanders and the exchange was easy. Just hope no cells escaped, thats my worry more than what the breast looks like now.

AmyQ

Shelly,

As you can see, this decision is so personal and outcomes so very different for each woman. I only wish we had a crystal ball to see our outcomes before hand but sadly, we do not. I guess slow and easy (not that lumpectomy is easy) might be the path to consider. In other words, go with the lesser of all options, lumpectomy and see how you do and if they get clean margins, great. Once you go with complete removal, you can't get it back, even with reconstruction. I'm one of those who had no choice. I had to have an mx. I did have the option of single or double. I chose double because I didn't want to have to go through surgery a second time. In hindsight, this was the absolute right decision as early stage BC was found in the opposite breast, not detectable by scans. I've had nothing but problems with my reconstruction and I am pretty close to having my implants removed and going flat forever. I've put up with the pain and discomfort for almost two years now and it's really beaten me down.

So I guess I'm suggesting going with the least invasive of all procedures as you can always have an mx or bmx if needed at later. Please know however, that I am merely providing my suggestions and since you are so unsure, baby steps rather than jumping in with both feet. You've always got the bmx option at a later date or that decision may be made for you depending on what the surgeon finds. Good luck with whatever you do decide. I'll be thinking of you.

Amy

MsPharoah

Hi Shelly 1974, I had to make the same hard decision you are making about 2 years ago. It is so very difficult and the reason is that you have to be informed about the risks and benefits for each option and there is NO option that does not have risks. If I were you, I would not focus on the experience of one person, regardless of how trusted they are. So what to do? In my mind, you should opt for the surgery that is recommended by your medical professional(s) that ensures the best long term survival for you, ie: gets that dumb cancer out of your body! And then take whatever other options you may have that are the least invasive and/or give you the best cosmetic outcome or least recuperation. And then....once you decide, do not look back!

Gentle hugs to you.

MsP

NineTwelve

Hi, Shelly. It sounds like most of your friend's discontent is related to her reconstruction. I would suggest you read the thread about going flat, as there is an alternative to the reconstruction route.

I won't be getting a mastectomy because I have metastatic breast cancer (no point it cutting them off now the cancer has spread), but when I was first diagnosed and they didn't know the extent yet, I told the consulting surgeon that I wanted no reconstruction, just flat "like a twelve year old boy". I cried when I found out that mastectomy wasn't an option for me, because it meant that they couldn't just cut off my cancer and I'd be done with it.

I wish you luck and healing with whatever you decide.

Shelly1974

Thank you all. It is so great to be able vent with woman going thru different decisions but with same confusion.

MusicLover

I like MsP's suggestion the most and I would ask your medical team if you can in fact, go with lumpectomies now and choose mastectomy later (I think they may say yes but I would be surprised if they say you can still have reconstruction with a good visual outcome.  If you choose mastectomy with implants, you could have them removed down the road if they are a problem - I would ask your team about the implications of doing this also.  Before your surgery, ask them as many questions as possible - their main goal should be to put you into remission but they also understand your concerns about making this surgical decision too.)

Beachbum1023

Hello Shelly1974, I just had a mastectomy (right) on 12/15. I had planned for reconstruction, but during the surgery my BS and PS determined that in order to get to the clear margin they had to do some creative surgery and a little rearranging of the breast skin to accomplish a clean close. And it left room for reconstruction at a later date. So I found out when I woke up from surgery. But for me it gave me more time to think about what I really wanted to do. And after reading and talking with other women, I'm going to stay flat. The time and money for the reconstruction just doesn't work for me. And I am still fighting this BC war. So I am going to rads, and them possible chemo or GammaKnife surgery. So for me to be free of cancer is more important than reconstruction. I am on a mission to heal my body, and if at some other time I change my mind, it will be for the right reason. I have way too much on my plate to try to decide something so important and emotional while suffering "chemo" brain .

Mollymae

Shelly

I am almost 1 month post op from bmx and have tissue expanders with 2 fills so far. I originally was going to go with a lumpectomy until I started reading more and more. I knew that I wanted reconstruction. The very popular deip flap wasn't an option because I don't have enough extra fat. Going flat at this time in my life just doesn't feel comfortable emotionally. With lumpectomys you usually get radiation. The radiation often times will cause problems with reconstruction using implants. For me it was the right choice especially when they found Cancer on both sides during my surgery. Yes, you do lose sensation but....if I were uncomfortable all the time like your friend, I would be having something done to fix the issues. Everyone has their own priorities and I hope you can make your decision based on your gut feeling after doing so much research.

Good Luck

marci

concernedhubbyalan

Keep in mind that everyone's recovery is different and everyone's DX is different. Your friend may have had a rough go, but that doesn't mean you will.

Moderators

Hi Shelly, We are just chiming in to say that we are all here for you. You are getting great advice. We second what everyone else has already said.

Thinking of you!

The Mods

Jenwith4kids

I agree with MsP... I had a BMX with TE's eleven months ago. Not sure how I will feel once I get my implants, but I'm hoping better. Some of what your "friend" described (sounds like her delivery was lacking) happens regardless of the type of surgery. Take a few deep breaths (and an ativan) and go with your guy. My opinion - I threw everything I had at getting better. I didn't want to take any chances, I feel that the first line of defense is the best line of defense....

Good luck!

luckypenny

I do not have long term pain after my bilateral mastectomy over 3 years ago. I had some itching the first year , but I don't have that anymore. I am fine with the way I look . I don't wear foobs either, and I don;t care about reconstruction for myself - really don't want to go through another surgery and that jazz.

exbrnxgrl

Your friend had an unfortunate experience, but that doesn't mean you will. Sadly, there is no way to predict these things. If you have an experienced ps, who listens to you, the odds are in your favor. If you choose no reconstruction, that fine too. Loss of sensation is almost universal, as they are removing all of your breast tissue. I have some skin sensation, but I knew all of this going into it, so no surprises . Yes,,during healing there were zings, zaps and the odd feeling of milk letdown! I'm about 3 1/2 years out and don't notice anything. I had a bmx with one step implants. I am pleased but I knew the pros and cons and knew there was no guarantee

solacetea

I had a right breast lumpectomy, no clean margins, that ended up in a mastectomy a week later. A suspicious MRI on the left breast resulted in another mastectomy two months later. I am not having reconstruction. 7 months out, I have weird sensations, numbness, and random pains, but I can deal with those. The right breast had to come off, and having the left one off as well is a lot better than being lopsided and continuing to worry about cancer recurring in breast tissue. I prefer peace of mind to retaining my figure.

farmerlucy

Shelley - I was in your shoes three years ago. ALH ADH scary family history. I opted for the PBM. I knew my breasts did not image well, I knew how onerous the screenings were. Maybe sit down and prioritize things. I would think the most important thing is avoiding cancer. I know that ALH is seen in some screening , but generally it is not (per my genetic counselor/breast surgeon). I felt like my ALH was a gift. Most women are not as fortunate to have tissue changes discovered at that stage. The one thing I didn't do was to follow my gut re:recon. I have an excellent outcome w 3d nips and all. I had no complications and I healed well. Implants do not feel the same as your natural breasts, no recon does, but I do not have any pain. In hindsight I wish I had delayed recon. I did it mostly for others, I know I would have been fine without it.

More undetected ADH /ALH and a small 1.1 cm IDC was found in the final pathology. I was completely devastated . No screening had seen it, and let me tell you I had blue ribbon screening for twenty years. My onc said I had likely saved my own life.

It is a total kick in the teeth that one of the best ways of preventing this disease is by cutting off our own breasts. No one wants to do it. We just have to make the best decision from a series of sucky options.

Go with what your gut is telling you. There are no wrong decisions.

Hugs to you.

alizbeth

Hi, Shelly,

I had a mastectomy because I had extensive and multifocal DCIS; three doctors recommended a mastectomy to me.  I opted to have a prophylactic mastectomy of the non-cancer side as well.  I agree with others that everyone has a different experience.  I was very fortunate and all went quite smoothly.  Recovery from mastectomy was better than I expected.  I had very little pain / discomfort with the tissue expanders, and no pain or discomfort with the permanent implants.  I do experience some mild itching that others have referenced, but I don't notice it often.  Sensation is gone, but that is quite standard.  Overall, I think the BMX was a good decision for me and, so far, I believe it was the right one for me. 

Shelly1974

Girls,

You all are light in the my darkness

Farmerlucy, did they took out the lymph node out in the BM or after phatology report came back?

farmerlucy

After - and I now know there is some question about about the ability to do it. I have only found one very small study where it was done and it was 65% effective. Also I've read about what Angelina Jolie had done which was to have the dye put in, not take the node at surgery, and if the pathology had come back positive the node theoretically would still be blue and they could take it. Of course she has a lot more resources than us and may not have to worry about insurance approvals.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC290995...

http://pinklotusbreastcenter.com/breast-cancer-101...

horsemom

Shelly

My PS said both the dye and radioactive would be gone before they got the final pathology. I'm sure Angelina had access to speedier results. So...I asked her to locate the sentinel and mark it with a clip. She was intrigued and excited to do it. It's important that if you do this the clip be put in so it doesn't interfere with the nodes function. I ended up with LCIS and a very small DCIS so we didn't have to go back for the nodes.

My PS thinks she's going to be suggesting this from now on to patients doing mastectomies without a known invasive cancer.

farmerlucy

horsemom - what an excellent idea!

Shelly1974

horsemom. Thank you. I'll speak with My BS on Monday and will suggest that.

Hopeful82014

I have a marker in my malignant node so that it can definitively be removed at time of surgery, whether it turns out to be the sentinel node or not. (At time of diagnosis the radiologist said he thought it was.)

The titanium marker is about the size of a sesame seed and this unlikely to cause any issues should one remain in your node after surgery.

Obxflygirl1

I had a double MX and haven't regretted it one day. But I'm also one of the lucky ones. No complications from surgery. Had TE's put in at surgery and was surprised at how good I looked when the dressings came off the first time for shower. On the day the doctor said I could finally shower, I cried really hard not wanting to see how horrible I was going to look. Husband and I were both shocked. One thin line of sutures and a little breast from the TE's. I've had my implants for almost 2 years. No pain and barely notice them. I wasn't big breasted to begin with and now a small C cup. Had successful nipple surgery and then tattoos to complete everything. I'm very happy with the outcome. My scars have faded to almost non-existent . The part I truly miss is the lack of sensation across my breasts but it's a small price to pay for the chance of survival. Everyone's outcome and situation is different. I just wanted to let you know there are success stories. It's important to have a surgeon who is a breast cancer surgeon and not a general surgeon who only does them a couple times a year. I know you are scared and terrified really. It's an emotional roller coaster ride. Good luck and make the decision that is most comfortable and right for you. Only you can decide.

ruthbru

 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 make your decisions:

"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!"

Shelly1974

Thanks! I had a pre op meeting with the nurse and been told lymph nodes will not be removed and if needed will be removed later after pathology report will be back. She left it to my decision.

It's week from today. I have so many things to do in my list but feel I'm too confused to even start the day.

It will be fine I know, we do not realize how strong we are till we need it.

I appreciate all of your resources and support.

Shelly

SuC

hi Shelly

My input too. I have had bilateral mastectomies too. First one in sept 2013 and the second electively the following April. I have had no reconstruction and cannot see me ever wanting to do so. There are occasionally odd sensations in the chest wall but not much. The recovery was fine - the first was more painful but I think there was a psychological aspect as I had just found out I had cancer. The second was far faster. Doing the physio exercises post surgery is really important to get your movement back to normal.

I actually enjoy being flat chested! I am also relieved never to have to go through the stress of another mammogram. I had to have one prior to the second surgery and was a nervous wreck.

People really don't notice you don't have breasts! For me the thought of lumps of silicon inserted to make breast mounds was unacceptable as was the length of surgery for the other reconstruction options(as well as the scars). I am happy as I am.

I hopeyou are happy with whatever decision you finally come to. xx

Bippy625

hi shelley,

I too am and have struggled with the recon question.I just had a bmx, prophy on left, as I wanted to avoid any more mammos, cancer, worry. In my case, my PS said rads will damage any recon, so I had to wait till at least 4 months after. Glad about it, it gives me time to consider options. I was not a candidate for nipple or skin sparing. Each situation is different, and I had it in one node too, so that shrank my options. A huge part of my decision was that my breasts were so dense, nothing showed on mammos, even though my right breast was filled with cancer. All my carefully scheduled, never missed mammos were useless as a screening. Only when a lump appeared did we catch it, barely in time, due to its aggressive nature. If I had gone for a lumpectomy, I would have been disfigured anyway as the tumors were multicentric. and then I would have been hostage to neverending imaging every 6 months. Did not want the worry, expense, etc.

I am leaning towards just staying flat for awhile, and deciding in a year or two. Do not like the idea of TEs and implants. I may do a DIEP, which has its own list of potential horrors.

I am really happy that I do not have to decide right now! Tx is so stressful, and crushing, that I need time to heal mentally, physically and spiritually. Maybe you can ask about delayed recon? Lots of ladies do that and then decide after they have fully healed. So much to consider, it is not easy.