Plz help! -single or double mastectomy?

catlady44

I have stage 2 invasive ductal carcinoma that's HER2+ in one breast and although I tested negative for the BRCA genes, I have a significant family history of breast cancer. I'm 44 and have many years ahead of me (hopefully) and I'm thinking of going ahead with the double mastectomy with reconstruction if only for my peace of mind. I don't care about the effect this might have on my sex life. Sex pales in comparison to my fear of cancer. My surgery is scheduled for June 5, but I have a month to decide on which surgery I'm going to do. My doc said my original risk of developing cancer in the non-sick breast was around 22-25%, but since I'm doing 10 years of hormone treatments, that cuts the risk by half. Mostly, i NEVER want to go through this again! I've had 5 months of chemo already and the longer it goes on, the worse I feel. I have all the usual side effects minus nausea/diarrhea. Currently, my fingernails are coming off. I digress.....

i just wondered what you all have done or what your thoughts are on this. Is there a significant difference in the amount of pain involved if I do the double mastectomy/reconstruction? I'll only have lymph nodes removed on one side. I'm so nervous about the surgery anyway because I've never had such an invasive procedure before and I've never given birth so I couldn't compare it to that. I don't expect to be pain free and I do have a pretty high pain tolerance already, but I want the pain or discomfort to at least be manageable. My surgeon has promised me that she never lets patients be in severe pain.

Sorry this got long, but I wanted to give a good description of everything. I hate making such a big decision! Thx for any responses!

sas-schatzi

Cat, The older I get, the less verbiage I'm inclined to use.   I did a double and NEVER regretted it.

farmerlucy

Cat - go with your gut on this one. For me the thought of surgery was worse than the actuality of it. I had a pain ball for five days and was on oral Tylenol by day three. The most painful part for me was stretching my pec muscles. TEs weren't fun but as my PS said it was just six months out of my life. If you are hesitant you can always do a uni now and see how you feel

debiann

I had a double and I'm very happy I did. I'm certain I would have worried like crazy about getting cancer on the other side. Also, I wanted symmetry. Having both sides look the same was very important to me. My original parts were getting kind of saggy anyway. I had diep recon and the new breasts are full and round. Of course there was pain, but not as much as I expected and I was back at work in five weeks.

I was at a bc survivors worshop last night. I met one women who had a uni, then developed cancer on the other side 4 years later. Another woman had a uni 2 years ago but hates the frequent screening and worry is going back for the double. A third had  the double with implant recon. She said the te's hurt, but she loves the implants. 

You have lots of choices, I hope you find the one that feels right for you.

trailrose

Catlady44- Go with your gut feeling. I had BMX because I HOPE to never have to revisit breast cancer again. I could of just had lumpectomy with radiation but with such a strong family history of breast cancer I said no way. My paternal grandmother and aunt both died of breast cancer in their 40's. I'm 43 and mine was caught super early! My sister's breast cancer was a Stage IIIb and she was 27 years old when diagnosed. She's doing great 11 years later but she has the BRCA 1 gene mutation and I don't!

My sex life hasn't been affected by this. I won't let it. My husband thinks I'm just as sexy as before!

There is pain involved with the BMX but with medications it is totally manageable. I have TE's in place which have a mind of there own and have caused there own kind of pain but it all gets better as time passes and you heal. It helps tremendously to have a good support system at home as you would need time after the surgery to recover. Take lots of deep breaths and find time to laugh. I'm super happy with my decision and I hope all of our opinions/thoughts help you along the way.

Maureen1

(((Cat))) I wish the decisions were easier but we can only make the best decision with the information we have... I had a BMX with immediate implant reconstruction, and I have no regrets. The pain was manageable with ice packs and Tylenol. I didn't want TE's and my PS was willing to do that since he was doing skin sparing and I didn't want to increase my size. In a sad way my Mom helped me decide. She had a uni 10 years before I was diagnosed. She had a recurrence in the other breast 2 months before I had a lumpectomy and passed away from mets the week of my surgery. I still had the drain in when I went to her funeral. So I did chemo then went in for my BMX. There are no garuntees but hopefully it reduces the risk of being blindsided like my Mom was. Good luck...you will make the right choice (((hugs))) Maureen

Juliecc

I had a bilateral mastectomy/with reconstruction and I am happy I did. My plastic surgeon used Exparel during the surgery. This is injected in the surgical area and gives 3 days of pain relief. I had very little pain from the surgery, just sorenes and irritation where the 4 drains came out.

Reconstruction is a long road. I had the BMX with TEs placed on 3/10/14, had about 5 fills, the exchange surgery on 8/8/14, then fat grafting on 1/22/15. Many women have more surgeries than this due to complications. I still don't have nipples and might do the 3D nipple tattoos. Despite all this, I continued to have a great sex life with my boyfriend with little hiatuses for surgeries.

For some women, it's important to keep one breast. There are posts about lumpectomy vs mastectomy that might help you decide whether to do both or not.

sas-schatzi

Ohhh EXPAREL--nifty

sas-schatzi

Bilat less worry. My BC was very aggressive. I'm here. Prognosis on path report "Not favorable". Hrmph. My life reduced to two words. Sixth anniversary was in February. Forklift(autocorrect) cancer

Janetanned

Did you have the 'good' side looked at closely?  Originally, I was planning a lumpectomy to remove the DCIS found on a mammogram.  My surgeon was less optimistic.  He wanted to check out my 'good' side with an MRI.  Unfortunately ILC was hiding deep within the 'good' side.  It was not seen on a routine mammo or a diagnostic 3D mammo.  Nor was it palpable. BMX was my only choice at that point.

I was left with a BMX and I chose immediate DIEP reconstruction.  3+ years later I'm glad I did!

scvmom65

Go with your gut feeling, I don't think there is a right or wrong answer since we are not given crystal balls(darn!). Do you feel like keeping your breasts will make you fearful of going through all this again or do you feel like you would regret not having one natural breast? I chose a double and am happy because I personally would have been afraid of a reoccurence, but thats just me.

Good luck with whatever you decide!

Anna

elisewin

hi Cat Lady

I had a uni 4 years ago on my left side and regretted from the start not having a bi, two weeks ago I had my right side mastectomy for a new primary cancer. As you can see from my signature both times were Dcis so I feel like I can't complain but I could have been in a much darker place today. These 4 years have been really stressful with mri every 6 months. The only good thing out of these 4 years is that I managed to breastfeed my baby.Good luck

catlady44

I had a MRI of both breasts and surrounding lymph nodes before I started treatment and I only had the cancer on that one side. The report said I had "extremely dense breast tissue" so maybe getting them both done is the best thing. I'd had a clear mammo a little over 6 months before my diagnosis and at that time it measured 4.6cm, and they said the cancer cells were dividing rapidly, right there on the slide. I was planning on getting the 3D mammo's from now on anyway, but my doc may want MRI's instead. I haven't talked to him about this yet, but I will. I already have an anxiety disorder so the tendency to worry is pretty high.

Thx for everyone's info!

jlstacey

I'm a worrier by nature. I have decided on a double mastectomy for piece of mind. I have heard of too many women who have a new primary cancer happen in the other breast after a mastectomy. I'm not that attached to the girls anyway. TEs sound like the worst part to me.

Jena

Juliecc

TEs are hard and uncomfortable but most women get through it with no problems. Also, plan on sleeping on your back until after exchange surgery. There is a lot to think about.

loriekg

Hi Catlady44—I don't have anything to add regarding the pain involved…as I have not had my surgery yet. I've still got two more rounds of chemo to go, but expect surgery in June or July. I've decided from the get go, to have a double mx. For the same reasons others have listed. I don't want to have any regrets…and I don't think the possible regret I would have from missing my good breast would in any way compare to the regret I would have if I had a recurrence there. Plus, the agonizing over being screened every 6 months…I am a worrier, so for me, it would be agony. On the positive side, with a BMX, they will look the same, hopefully. From what I have been reading on my January Chemo thread—surgery is a breeze compared to chemo. (I know—that's kind of hard to imagine…!!) Are you all done with chemo now? --Lorie

hummingbirdlover

Cat, I opted for BMX and have no regrets. I felt (in a twisted way) fortunate that since I had multiple tumors that were spread apart, BS told me right had to go so Lx was never an option for me. I asked him, "so I will have to worry about the other side every year at mammogram time?" To which he replied no more mammograms for you, it's MRIs every six months. I discovered that I had dense breast tissue and I just couldn't deal with that stress. I had my mind made up before I left his office that if one had togo, both were going. I've never looked back and am in the TE phase right now. It hasn't been fun but it hasn't been unbearable either.

They are all sucky choices. You just make the one that feels right to you and move along. You don't need to explain or justify your choice to anyone but you. I wish you all the best

LD3

Cat, my diagnosis was almost 11 years ago. After all scans/tests, I was told I had it only on the right side. I opted to have a double, skin-sparing, mastectomy anyway to hopefully avoid a recurrence. Once the post-surgery pathology reports came back, they found it was actually in my left breast as well. I am so happy I opted for the double! I have heard of many women who had a single and ended up with a recurrence in the other breast years later. My suggestion would be to have the double. I haven't run into too many women that have had the skin-sparing mastectomy, but I highly recommend asking your surgeon about it. I've been very happy with the result and had little pain. A bonus is that I never actually was "without" breasts since they put the TEs in right at the time of my mast. and they were close to the size of my natural breasts. The expansion process was minimal. Once I got the permanent implants after chemo, I was able to wear my old bras and, in clothing, looked the same as before. In the past couple of years, I've noticed some changes in the breast shape on my right side (where more tissue was removed). Since the implants were only supposed to last 10 - 15 years, I am planning to have another surgery soon to get new implants. Hope this helps.

JAN69

Cat, I'll chime in with my story. I had a modified radical in right breast with no reconstruction. BS said reconstruction wasn't advised and since I was 68 at the time, I didn't care. I hadn't found BCO yet, so had no idea I could have gotten a double. Once I found BCO, I saw I could get a prophylactic mastectomy in my lefty, I headed back to BS who happily did a simple mastectomy. I'm delighted to be flat. I rarely wear a bra with foobs and just live my life "topless." I wish you well with your decision. Jan

debiann

My cancer was in my left breast. I named lefty "weak link". I was very angry with lefty so he had to go. 

Righty on the other hand I named "collateral damage". I apoligized to righty before going into surgery, but explained "you gotta go too".

I don't miss them & I quite happy with their replacements.

. 

mjh1

You need to go with your gut on this one.  You're the one that has to live with the choice.  After having four biopsies and feeling like a pin cushion not to mention 46 mammo films I said I had a enough and told my BS I want a mastectomy.  She thought I was crazy.  The lab that read my original biopsies didn't pick up the DCIS in the left breast nor did any other battery of tests pick up the DCIS in the right breast.  So for me I obviously made the right choice.  The TE are a LONG and painful process but somehow we all get through it.  It's kind of like the pain of childbirth that everyone soon forgets too.  I'm over a year since my BNSMX and I'm still working on getting one boob to join her sister.  It is quite an emotional rollercoaster but I don't regret my decision for one minute.  Good luck in whatever you decide!! 

mjh1

Catlady - I sent you a PM that is worth reading.  Good luck!!

Sunflowercat

I had a BMX and no regrets. The pain was manageable and honestly my sex life has never been better with my husband. I was very active during the TE phase and now have my implants which I love. Go with your gut.

seshaw41

Hi I am new here but I have also come to the conclusion that I do not want to go through the this again. Tomorrow I will meet with the surgeon to discuss the plan after an ultrasound to check on some lymph nodes on the left. The decision was made for me on the left breast. Right breast looks clear. But it is a very hard journey and once is enough for me. I will be having reconstructive at time of surgery will meet with the plastic surgeon to discuss DIEP flap.. I know the recovery will be long but I am ready to be done with all the waiting.. And am trying to move on.. It's hard to reach out to others but I am going to have to try.. Thanks for listenin

sas-schatzi

seshaw----BCO is the best place to be.......so many threads. Wander around, lurk for awhile to see what fits. Lot's of nice folks all over.

I did this thread years ago. It's all about stuff to make life easier. I linked to page one.

https://community.breastcancer.org/forum/5/topic/748296?page=1

This to a thread written by Sage. Similar too mine, but a bit different. Great info

https://community.breastcancer.org/forum/6/topic/818139?page=1

This is to a thread that is all about making chemo organized

https://community.breastcancer.org/forum/69/topic/706846?page=1

Babe you can do okay, hang in there, you will get the support you need. BCO women won't let you down sassy

Nomatterwhat

Cat, I had  BMX in August with no reconstruction and have never looked back.  I had ILC and DCIS in the right breast and pre cancer cells in the left.  My BS told me that if I didn't do the BMX that I would be back in 3-5 years doing it again.  I don't think so!!!!!  It is a very personal choice, but for me it was a matter of getting it done and moving on with my life.  My husband talked me out of reconstruction due to having more surgeries and according to him he loves me with or without boobs, and he didn't marry me for the boobs.  Keep us informed as to your decision.  Are you going to KU Med? 

catlady44

Yes I'm at KU Med. My surgeon is Amie Jew and she has been wonderful. Thank you for all the info you've all provided! I'm close to making my decision. I'm leaning towards the double simply because I have very dense breast tissue which was probably why the cancer was missed at my last mammo. My cancer showed up about 6 months after a clear mammo, when I actually saw it protruding from my boob. It was about the size of a golf ball, but thankfully it has shrunk to less than .5 cm. Amazing the things they can do with the treatment now.

lulu2533

catlady- I too have been struggling with the whether or not to get a bmx or not. My final decision to go thru with it came down to having extremely dense breasts. Knowing that things can be "missed" is one of the main reasons for me.

Bippy625

add me to the bmxers.

Dense breasts, and not showing on mammos, and also size of tumor. Had option of lump but chose bmx as never wanting todo anything again like mris forever and punch freakin biposies. Other boob had noncacerous stuff, found in final pathology, which would have otherwise necessitated all that had I kept it.

Put off recon till next year, wearing foobs and or going flat. BTW, sex life is great!

ruthbru

I am copying over a post put together by Beesie, one 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!"

Anonymous

Me: dense breasts, ILC (with higher risk of bi-focal recurrence), +nodes, etc. I had a BMX/immediate recon w/o expanders--I stayed small-- and am completely happy with how they look. The pathology on the "good" breast post-surgery revealed that I had mild hyperplasia (ILC) in that one, but because it was so small, US/mammos/MRIs never revealed it. The right (bad) boob had nothing scary left in it, but I'm glad I found that out too. So I'm relieved I did both breasts.

I do miss the lack of nipple sensation. But overall I think that I am more happy that I did everything possible to kick little c out of my body.

Claire in AZ