Regret decision for double mastectomy?

SHakes561

Hi all

Just diagnosed with DCIS 0 - high grade after  8 years of calcs , suspicious spots, multiple views and 2 biopsies. Long ago decided I would get the double mastectomy if ever positive to do away with all of the concern each year.  Side effects of radiation and tamoxifen helped me confirm that until I met iwth the surgeon and Rad-Onc over the past week. They are pushing lumpectomy and think I’m going too extreme. My question is, does anyone here have regrets after that decision, wishing they would have gone the conservative route?  Is the plastic surgery after a disappointment?   Thank you in advance for your thoughts.

Sue

Apaugh

no regrets here

If your doc does not think you need that, maybe you dont. but always remember get a second opinion.  I got two opinions and both advised it because of the type, the place, and my extreme family history of breast cancer and other cancers.  I did not even choose reconstruction.  I dont miss them at all.  Many get reconstruction and it works out fine.  NOT easy, none of this cancer journey is easy.  In the long run, it becomes a very personal choice only you can make.  Whatever you choose, we love you and we support you all the way.  Please keep us posted.

Hugs,

Annie

LarkAlexis

Bilateral mastectomy

Hi, Sue. I chose a BMX 3 1/2 years ago, even though I only had cancer in my left breast. My surgeon was perfectly fine with my decision, although she strongly advised that I talk with reconstruction surgeons first (which I politely but vehemently denied.) I had three reasons: 1. I never wanted even a chance that I'd have to have the surgery again. 2. I didn't want reconstruction on one, or two, breasts, and 3. I knew I would feel "weird" with only one breast. Also, I guess 4. My breasts had always been a perfect size and shape for me to go bra-less and I preferred that. At almost 60 years old, I was not about to start wearing a bra so that I could wear a prostheses on one side! So my answer is, NO! I have never regretted a bilateral mastectomy and over the last three years, I have become completely comfortable in public with my totally flat chest! If I don't mind, why would I care what anyone else might think? So think through you own reasons, and stick to YOUR guns!! 

Best wishes,

LarkAlexis

 

LarkAlexis

LarkAlexis said:

Bilateral mastectomy

Hi, Sue. I chose a BMX 3 1/2 years ago, even though I only had cancer in my left breast. My surgeon was perfectly fine with my decision, although she strongly advised that I talk with reconstruction surgeons first (which I politely but vehemently denied.) I had three reasons: 1. I never wanted even a chance that I'd have to have the surgery again. 2. I didn't want reconstruction on one, or two, breasts, and 3. I knew I would feel "weird" with only one breast. Also, I guess 4. My breasts had always been a perfect size and shape for me to go bra-less and I preferred that. At almost 60 years old, I was not about to start wearing a bra so that I could wear a prostheses on one side! So my answer is, NO! I have never regretted a bilateral mastectomy and over the last three years, I have become completely comfortable in public with my totally flat chest! If I don't mind, why would I care what anyone else might think? So think through you own reasons, and stick to YOUR guns!! 

Best wishes,

LarkAlexis

 

One more thing....

Even though I had a bilateral mastectomy, now 3 years later, I have a small regrowth of cancer on my chest wall, right where my original tumor was. So having a mastectomy is not a guarantee that the cancer might not come back. However, it is much easier to see on the skin surface than in an intact or mostly intact (post-lumpectomy) breast. And, no more mammograms after mastectomy!

HapB

Lumpectomy

Sue, I had a lumpectomy and radiation. I have had 2 close friends who had Bmx and reconstruction and they had multiple surgeries, complications, and a lot of suffering.  If your doctors tell you that you do not need to go through that, don’t.

booksandnumbers

Lumpectomy

I had stage 2 IDC without lymphnode involvement and had planned to have a mastectomy. The oncologist and surgeon talked me out of it saying it was too drastic. After a 2nd opinion I decided to go for a lumpectomy, chemo, and radiation, and I'm glad I did. The recovery was much faster than it would have been and I don't regret it. Of course it is a personal choice for everyone. Wishing you all the best.

Mrs_Dallas

No regrets

At 33yrs old I was dx with breast cancer. I decided to have both breast removed because this was my second cancer with leukemia being the first at 15yrs of age. My choice was based on rather I wanted a high chance of a recurrence or if I could get over a non-life-threatening complication. I have 550cc silicone implants with a possible complication. I believe I would look fine without breast I'm just not ready to face that just yet. My goal is to appear normal as long as possible. 

KimmyKayC

I was diag in October of this

I was diag in October of this year. Everything has moved so quickly. I had DCIS high grade. I am 35 and just had my fourth baby. Almost died in childbirth for the second time to give you my frame of mind. I had a genetic test done and it turned out I was BRCA 2 pos. SHOCK! My mom was the only family member I have known to have breast cancer. She was 60 with a lot of other risk factors. When the test came back I decided on a bilateral skin sparing mastectomy on nov 20 and to also begin reconstruction with tissue expander over the muscle. Yes they can do that now and from what I have heard it is much less painfu. That being said it still hurts like hell unless you lose all feelin in your chest. The edges are very tender all time like a bruise on your shin. The skin on the side feels like a super bad sunburn when clothes touch it. Otherwise very doabl. After initial healing 2 weeks doc (ps) wouldn’t give me anything more than ibuprofen and Tylenol so maybe you will get lucky and have a doc that gives a crap. To be honest I feel like **** for complaining considering what most of the woman here have gone through but my pain is my pain and it is still relevant to me. now since I am still going through the expansion process I can’t give you the endgame perspective. What I can say is this. I feel like I rushed into the decision even though my oneologist whom I love agreed with my choice. That being said when I heard your lymph node are clear we got good margins no Further treatment is  necessary I will see you in 6 months I was over the moon. So far I haven’t regretted it save for a bad pain day. I have an amazing and supportive husband so that helps a lot. I also had a really good attitude going in. The hardest thing for me was after the biopsy I engorged ended  with a nasty hematoma and had to stop breastfeedin. This was my last baby considering my husband recently had a vasect and because of the brca 2 I will be having a hysterectomy as well. Saying goodbye to that bonding experience at 5 months was very very hard. So if children are a possibility I would say get the lumpectomy if not just take your time. You have dcis and as rushed as the doctor can make you feel you have the time to make the right decision for you.

HapB

Chance of recurrence

I was told that there is virtually no reason to have a mastectomy because it would not improve my chances of disease free survival.  There is no reason to doubt that, as I know my doctors are aggressive in their treatments otherwise.  i was told that the only time they recommend mastectomy is when they cannot save the breast.

PamR76

No Regrets

I was diagnosed in April 2016 and had my BMX in September 2016.  I had 5 suspicious lesions on the left, and 5 more plus the tumor on the right.  My surgeon and oncologist had me see the PS and the radiation doctor to get information in helping make my decision.  I went through the BMX, expanders, swapped expanders for implants, and then had skin grafts for nipples.  I am "morbidly obese" and I have the largest size implants available (800cc) and still look relatively "flat".  I am not 100% pleased with the results of the reconstruction and if I ever have any type of complications with the implants requiring removal, I won't have them replaced.  My oncologist felt I should have only had a lumpectomy, but my lump actually shrunk from the chemo and was not found in the pathology after my surgery, so I'm not sure how that would have gone if I'd chosen lumpectomy.  I chose the mastectomy for a few reasons...1- I didn't want radiation.  Period.  Also radiation can affect your skin and may not make you a good candidate for reconstruction.  2- because of all the other suspicious spots, I wanted them gone.  3- I knew I wanted a mastectomy on the cancer side, but didn't want to be "lopsided", so chose to have both removed.  It was not an easy procedure or healing process physically or mentally.  There are times when I miss having real breasts.  I have absolutely no feeling across my chest now (though a little has come back) and I think it has affected my husband more than me because it was an important part of my body to him, but he's incredibly supportive of my decision and we've made due.    It really comes down to deciding what you will be able to live with for the rest of your life.  A two-time survivor friend said to me when asking her advice on procedures, "It's your story."  You get to decide how you want this part of your story to play out.  It's a deeply personal decision, but you will be supported here no matter what you choose.

fishywishy14

LarkAlexis said:

Bilateral mastectomy

Hi, Sue. I chose a BMX 3 1/2 years ago, even though I only had cancer in my left breast. My surgeon was perfectly fine with my decision, although she strongly advised that I talk with reconstruction surgeons first (which I politely but vehemently denied.) I had three reasons: 1. I never wanted even a chance that I'd have to have the surgery again. 2. I didn't want reconstruction on one, or two, breasts, and 3. I knew I would feel "weird" with only one breast. Also, I guess 4. My breasts had always been a perfect size and shape for me to go bra-less and I preferred that. At almost 60 years old, I was not about to start wearing a bra so that I could wear a prostheses on one side! So my answer is, NO! I have never regretted a bilateral mastectomy and over the last three years, I have become completely comfortable in public with my totally flat chest! If I don't mind, why would I care what anyone else might think? So think through you own reasons, and stick to YOUR guns!! 

Best wishes,

LarkAlexis

 

Bilateral Mastectomy

LarkAlexis I emphathize.  My type of cancer has a 10% chance of going into the other breast so I really wanted bilateral.  I am a 42DD I cannot imagine only one huge floppy thing.  But they won't do it; I am 73 and overweight and they will only keep me under anaesthetic for an hour and a half, so only the affected breast and no reconstruction.  WHAT I wouldn't give for bra-less.....

Vickye

Do not regret double mastectomy

I had left breast cancer in 1987. Had a single breast removed and the right breast was biopsied. They said it was nothing so I ended up keeping it for 30 more years. Now i have cancer in the remaining breast and it's a large tumor.  Always ot fot the double mastectomy. They didn't offer it back then.

lynn1956

newley diagnossed

I will be having a bilateral mastectomy March 1 and I am really scared.  I try to be brave around my friends and kids, but i think I am losing it.

I live on my own but will stay at my sons for the first wee.  Is this long enough, I have 3 flights of stairs to go up with laundry and groceries.

Money is a problem for me as well, so iI am trying to think of a make shift thing to hold my drains.  I will have 3.

StevieWhip

No regrets here

I was diagnosed with Breast Cancer in Aug of 2017.  I had two tumors in my right breast.  I immediately knew that I wanted to have a double mastectomy.  I knew I did not ever want to have to go through this again.  My Breast Surgeon told me that they did not recommend removing the healthy breast as well as my Plastic Surgeon doing my reconstruction.  However it is a personal choice and they were both willing to do the surgery.  Of course silly me I thought I would have a BMX and then not have to have chemo or radiation, but I am currently undergoing chemo which will then be followed by radiation.  My mastectomy happened in October of 2017 and after finding that one of my lymph nodes tested positive for the more aggresive cancer, I had more lymph nodes removed in November of 2017.  Should you have any more questions for me don't be afraid to ask.  Just remember the choice is yours.  Best of luck!

Trailrunner

lynn1956 said:

newley diagnossed

I will be having a bilateral mastectomy March 1 and I am really scared.  I try to be brave around my friends and kids, but i think I am losing it.

I live on my own but will stay at my sons for the first wee.  Is this long enough, I have 3 flights of stairs to go up with laundry and groceries.

Money is a problem for me as well, so iI am trying to think of a make shift thing to hold my drains.  I will have 3.

I want you to know that I had

I want you to know that I had a bilateral mastectomy in November 2017 and I was terrified.  I was so scared, I did not want to do it.  I too live alone with two dogs and I didn't want to put them in a kennel because it's too expensive.  Guess what?  I did it.  I made it to every appointment and to the hospital on the day of the surgery.  I was shaking like a leaf because I didn't truly know what to expect.  I got home the night of the surgery (it was done on an outpatient basis) and I was able to let my dogs out to do their business, and then gave them dinner, ate and drank a litte something, took a pain pill and went to bed.  It was all uphill from there.  You got this!!  

I had 4 drains and I did purchase a belt made specifically to hold the drains.  That part was a little icky, but I got used to it.  And I wore only button up shirts...nothing to pull over the head.  

The flights of stairs shouldn't be a problem, but you will not be able to carry a basket of laundry or groceries for at least a week.  However, in a pinch, I found I could just carry a little bit and take more trips.  And definitely take advantage of bag clerks offering to carrying out your groceries.  Hopefully your friends and/or kids can bring you groceries and help you with your laundry for at least a week. 

Hang in there.  I'm serious, you got this!  The anxiety is normal.  And never underestimate the healing power of binge watching The Golden Girls. LOL  

 

 

Trailrunner

No regrets

I had a BMX in November of 2017.  Like you, I always said I would have a bilateral mastectomy if I ever got cancer.  When I got the call back from a routine screening, I didn't think too much of it.  But the second round of mammograms and an ultrasound revealed what the doctors thought was a small, cancer or pre-cancerous mass in one breast.  At that point, the discussion was about a lumpectomy and radiation, but then an MRI showed possibly more tumors and maybe even one in the other breast.  At the time of the biopsy, I told the doctor that if any biopsy comes back positive in even just one breast, I knew I wanted a bilateral mastectomy.  The rest is history, as they say, and I had a BMX in November 2017 with immediate reconstruction.  I knew I would only do reconstruction if it could be done at the time of the BMX.  I knew I did not want to go bigger or deal with repeated surgeries.  

I absolutely do not regret the BMX, but I also was not in your exact situation.  The only thing I'm still on the fence about is the reconstruction ala implants.  I haven't had any complication (knock on wood) per se and the reconstruction surgeon did a great job, I just don't like how they feel.  I hadn't intended on getting reconstruction, but to be honest, my breast cancer surgeon convinced me I would want it.  Both surgeons assured me that I could return to my active lifestyle with the implants, but so far it uncomfortable.  When I run, it's like I have two hard softballs sitting on my nipple, even though I don't have nipples anymore.  And I find the muscle over the implants to be constantly tender.  I'm still doing physical therapy exercises to loosen up my pectorals.  I have to do that routinely or they become stiff.  My reconstruction surgeon doesn't understand this at all, so maybe there is something different about me that is making my reconstruction experience a little more unusual.  

I don't know if I helped.  I guess I echo what others have said...it's your body and your choice.  I too wish you good luck and I'm so glad they caught your cancer early.  

Annieinmass

Trailrunner said:

No regrets

I had a BMX in November of 2017.  Like you, I always said I would have a bilateral mastectomy if I ever got cancer.  When I got the call back from a routine screening, I didn't think too much of it.  But the second round of mammograms and an ultrasound revealed what the doctors thought was a small, cancer or pre-cancerous mass in one breast.  At that point, the discussion was about a lumpectomy and radiation, but then an MRI showed possibly more tumors and maybe even one in the other breast.  At the time of the biopsy, I told the doctor that if any biopsy comes back positive in even just one breast, I knew I wanted a bilateral mastectomy.  The rest is history, as they say, and I had a BMX in November 2017 with immediate reconstruction.  I knew I would only do reconstruction if it could be done at the time of the BMX.  I knew I did not want to go bigger or deal with repeated surgeries.  

I absolutely do not regret the BMX, but I also was not in your exact situation.  The only thing I'm still on the fence about is the reconstruction ala implants.  I haven't had any complication (knock on wood) per se and the reconstruction surgeon did a great job, I just don't like how they feel.  I hadn't intended on getting reconstruction, but to be honest, my breast cancer surgeon convinced me I would want it.  Both surgeons assured me that I could return to my active lifestyle with the implants, but so far it uncomfortable.  When I run, it's like I have two hard softballs sitting on my nipple, even though I don't have nipples anymore.  And I find the muscle over the implants to be constantly tender.  I'm still doing physical therapy exercises to loosen up my pectorals.  I have to do that routinely or they become stiff.  My reconstruction surgeon doesn't understand this at all, so maybe there is something different about me that is making my reconstruction experience a little more unusual.  

I don't know if I helped.  I guess I echo what others have said...it's your body and your choice.  I too wish you good luck and I'm so glad they caught your cancer early.  

I was recently diagnosed with

I was recently diagnosed with IDC in both breasts. Three masses, grade 1.One in left, two in right. I am electng to have BMX, I asked for and after all testing, my medical oncoligist recommended BMX. Surgery is scheduled for early September 2019. I am undecided about implants. How has your journey been since your last post?

Katrina38

Double mastectomy don’t know if I regret

i Had BMX Sept 3rd felt like I got run over by a Mack truck that day I remember thinking I was going in shock i did Not though , I had reconstruction with tissue expAnders I never thought the pain would stop then it did like 3 weeks in .the expanders were only filled at surgery so I can not imagine going thru more pain with them they are only a little sore sometimes now and it's almost a month I never thought I'd get to this point I still don't know if I would do it again I think I will turn down chemo kinda scared of radiation now that I heard about the lump it's making on your skin after wards it has to be a better way does anybody know 

wallis2

Katrina38 said:

Double mastectomy don’t know if I regret

i Had BMX Sept 3rd felt like I got run over by a Mack truck that day I remember thinking I was going in shock i did Not though , I had reconstruction with tissue expAnders I never thought the pain would stop then it did like 3 weeks in .the expanders were only filled at surgery so I can not imagine going thru more pain with them they are only a little sore sometimes now and it's almost a month I never thought I'd get to this point I still don't know if I would do it again I think I will turn down chemo kinda scared of radiation now that I heard about the lump it's making on your skin after wards it has to be a better way does anybody know 

Hi Katrina,

Hi Katrina,

I had double mastecomy in 2018. I made the decision to have double mastectomy.   I opt out of for reconstruction because I didn't want more pain and I feel better with no breast, after all I was busty anyway.  The doctor did leave the door open for reconstruction.  I had radiation and it was horrible the last week.  I forgot how many weeks I went, but the last week was BAD. I was working up until my last week.  Remember everybody reacts differently to radiation. I have read and heard about some people having no problem at all, while others had a bad reaction.  After my last dose, it took me about 2 or 3 weeks to get back to normal.  I didn't need chemo, although the doctor did say it was my choice if I wanted too.  Talk to your doctor about the pros and cons about chemo and radiation.  

JanineSchul

Trailrunner said:

No regrets

I had a BMX in November of 2017.  Like you, I always said I would have a bilateral mastectomy if I ever got cancer.  When I got the call back from a routine screening, I didn't think too much of it.  But the second round of mammograms and an ultrasound revealed what the doctors thought was a small, cancer or pre-cancerous mass in one breast.  At that point, the discussion was about a lumpectomy and radiation, but then an MRI showed possibly more tumors and maybe even one in the other breast.  At the time of the biopsy, I told the doctor that if any biopsy comes back positive in even just one breast, I knew I wanted a bilateral mastectomy.  The rest is history, as they say, and I had a BMX in November 2017 with immediate reconstruction.  I knew I would only do reconstruction if it could be done at the time of the BMX.  I knew I did not want to go bigger or deal with repeated surgeries.  

I absolutely do not regret the BMX, but I also was not in your exact situation.  The only thing I'm still on the fence about is the reconstruction ala implants.  I haven't had any complication (knock on wood) per se and the reconstruction surgeon did a great job, I just don't like how they feel.  I hadn't intended on getting reconstruction, but to be honest, my breast cancer surgeon convinced me I would want it.  Both surgeons assured me that I could return to my active lifestyle with the implants, but so far it uncomfortable.  When I run, it's like I have two hard softballs sitting on my nipple, even though I don't have nipples anymore.  And I find the muscle over the implants to be constantly tender.  I'm still doing physical therapy exercises to loosen up my pectorals.  I have to do that routinely or they become stiff.  My reconstruction surgeon doesn't understand this at all, so maybe there is something different about me that is making my reconstruction experience a little more unusual.  

I don't know if I helped.  I guess I echo what others have said...it's your body and your choice.  I too wish you good luck and I'm so glad they caught your cancer early.  

Athletes and BMX/ Reconstruction

Hi. I was just dx with a second occurence of breast cancer. first was DCIS 8 years ago with lumpectomy and radiation. Now its DCIS and triple negative IDC in the same breast as before. I am very active and a competitive swimmer. I am wondering how you are doing now after time has passed?  I thought I wanted reconstruction but since I need the LD flap, I am moving away from that. Also, my doctcor said  as an athlete I probably wont like implants anyway.