Regrets?

Hi, longislandmom...

I was dx with dcis, stage 0, grade 1, one little spot.  I had been through a year and a half of alarms (calcifications, adh...).  I opted for a umx, no recon.  The bs said lump/rad would have been fine in my case and said that I should be prepared for the possibility that the entire dcis might have even been removed already during the stereotactic biopsy...

After the umx, when I received the pathology report, that is in fact what happened...they had actually gotten all of the cancer previous to the mx, during the biopsy.

Do I regret my decision?  Absolutely NOT.  I did not want to have radiation.  I was adamant on that.  I did not want to expose my lungs to any more carcinogens.  Both of my parents died of lung cancer.  Did not want to go that route...and have been exposed to many risk factors for lung cancer already, in addition to the family connections... [but, no one has ever told me that rads to the breast increases risk of lung cancer...but I think it is incredibly likely, and I stubbornly will stick to that, unless given very strong evidence to the contrary...]

I am glad that I kept my other breast.  If some day I am dx with bc in that breast, I still don't think I will have regrets...I will be able to say I enjoyed it for a while longer.  Also, I discovered after the mx that it was a much easier recovery because only one side was recovering.  I was able to do things for myself that I wouldn't otherwise have been able to do.  I was able to sleep on the "good" side instead of staying on my back for weeks.  (However, I would never have made the decision based on just the recovery period).

I wish my scar was a little cleaner.  Other than that, I still love my body, and enjoy it...

These are unbelievably PERSONAL decisions.  I think it is really really really important to NOT listen to what everyone else has to say on this and stick with your gut.  I know bc survivors that said I HAD to do recon or that I HAD to seriously consider bmx.  I knew my feelings and stuck with them.  No regrets.

I wish you all the best as you move forward with all of this really tough stuff...

Claire

I only regret that I didn't have a double mastectomy.  I didn't know much and it all happened so quickly.  I would of avoided alot of upkeep on the non-cancer side.  I have to many Dr. appts already.  I have finished all but my check ups and Tamox.  I am now dealing with some of the let down.  A friend told me I would hit a wall after the reconstuction, boy was she right.  But it didn't last long and I am feeling great and creative again.  

My advice to anyone is to get into a group as soon as possible and find out your options from other women going through this.  You have to be your own quarterback as my husband would put it. 

I had a lumpectomy with partial breast rads.  No regrets from me.   Although my tumor was very small, I researched all options.  At one point I seriously considered BMX, just so I never have to worry about it again.  When I did more research, I learned about a lot of possible side consequences of MX, including phantom pains,  restricted muscle use, and people having the reconstruction never actually feeling like it belongs.   I decided that BMX would be overkill for my particular situation.    

If I have a reoccurance in the future, I am sure I will look back any regret a few thingsm and will probably opt for MX.   But if I had a MX with some of the problems that I noted, I would also regret that.    I am not a worrier by nature, so I dont stress about all of the 'what ifs'.  I carefully considered them when I made my decision, am comfortable that I did the right thing, and am very dilligent about my followups.

I was strongly encouraged to have a bmx because of family history -- however because I was DCIS Grade 2/3 and BRCA- I diid have an option of a lump and then watch and wait.. Now I know that there are going to be genetic factors that will have an impact on bc in the future BUT with what was known in 2007 I COULD have had a lump with watchful waiting after.  The doc's in my case were pushing because I have a Dad that died of bc... however they were making those recommendations on fear and not on research and logical thinking... I became wrapped up in the fear and decided to have the BMX... It was a mistake to do it I believe... Not only might I have saved my bc free breast AND potentially had just a divit in my bc breast BUT the reconstruction doesn't look anything like the doc's said it would and I went for 4 ps!  I was told that if I made the decision to have a BMX it would be a much better look (outcome) for the reconstruction - not so and I have since spoken to lots of women and found that many have had less than OK reconstructions after being told that symetry and appearance would be much better.  I also lost my nipples and even if I had to have a BMX today I would go miles to find a doc who could do nipple sparing.. I am not a depressed person in general - my entire life until this point was rather depression free even when faced with a major life trauma.. It took me almost the full 5 years to get past the depression that came with my BMX.. I can't imagine why the medical community doesn't have a therapist put on our list of specialty doc's.. This is a major trauma to our bodies.. Please weight your steps carefully and also if it is at all possible please set up a therapist now so that  you can re-claim your life sooner than I did... Take care of yourself!  Deirdre

I do not regret my BMX for one second. I would do it again in heart beat. My implants aren't perfect, but I really could care a less. I look great in my clothes and swimsuits, so it has been very easy to get used to.

Had a BMX,no recon, no regrets.   I have an anxious personality, and having this done gives me peace of mind.

No regrets on my BMX either.  Do I miss the feelings/sensations in my chest...ABSOLUTELY!  Do I know that a BMX does not give me a 100% guarantee...YES I do!  Are my implants perfect...NO!  A BMX was the right choice for me.  People have their opinions but you have to go with your gut on this one.  Take care of yourself.

longisland mom...we are scheduled on the same date. I too question my decision but I keep going back to the following: BS say that radiation damages the skin and makes reconstruction later on in life much harder, it can most certainly be done but a little harder.The other thing I think of is that I am not doing this for what I have now but what I don't know about in the future, kind of preventative.  One more thing, my BS asked me to ask myself one question...If after the MX and when the path reports come back and there was no more cancer, no more than what you knew about are you going to regret doing it?  I though that was a question to get me thinking, my answer was I'm not doing this for now but for the future.  We will each have different reasons with difference answers. All of the above statements from everyone here helps me and you but deep down inside we both have to come to the decision and be happy on our own.  Which after the aniety is gone, I think we will be with any decision we decide on.  (I sound calm right?  can't breath half the time)  Good luck to us!

I had bilateral for prevention and I have not a single regret. 

I sometimes imagine how I would react if I woke up one day and my original breasts were back on me.  i think I would be upset and think two things:  1.  These are too dang small, 2. Do you mean these little things are back to try and get me again?!   I would do the surgery again in a jiffy.

Chatting with my BS, he told me the biggest reget he sees in patients is women with a single MX who wish they had done both.  I found that interesting.

Hi I was diagnosed with DCIS in October 2011. Had a BMX on January 24th 2012 with DIEP flap reconstruction!!!! Would I do it again? ABSOLUTELY!!!!

When I first got my diagnosis it was actually the first thought I had!!! My gut told me this was the route to go. I did SO MUCH research on the issue after that for the exact reason your saying. People looked at me like I had three heads!!! I would hear "Why would you do such a thing when you could have just a lumpectomy and rads?" I even heard... "You just want the attention from surgery!" Can you even imagine someone saying that?

My decision was simple... I have BC in my family, my grandmother passed away from it. I have an aunt who had a double masectomy (I think I still would've made the same decision though even if it wasn't in my family). I was BRCA negative. Going the route of lumpectomy still left me a 20% chance of recurrance, mammograms every six months where I was told by three doctor's they WILL find something each time. They said it would probably be nothing but each time they found something it would have to be a biopsy. Radiation for six weeks everyday. I didn't want to live like this!!! Always wondering..........

I had the BMX. I'm still recovering. The worst I guess was probably the first month. I was lucky I had a lot of family support. My sister was helping me constantly!!! It was hard to get up and down because of the admonial incision. The sleeping was impossible. Only on my back which was awful for me being a side sleeper. The drains were the WORST part for me completely. They irritated my skin and were just all around a pain in the butt to shower, walk, sleep, etc.... My nipple reconstruction is scheduled for July 2nd. I cannot wait for that to be done because YES I do have a very hard time looking in the mirror at my image. I know it's temporary and I know I'm cancer free but it's still VERY hard!!! This cannot be over soon enough for me!!!

I went for three opinions and each doctor I saw told me more and more women are choosing the route I did, even with other options!!! So to the people who question you and say awful things sometimes, I say...until your in this situation you have no right to question ANY choices I make!!!

This is a totally personel decision that ONLY you can make!!! If I had to do this over again I would absolutely do the same thing I did!! I have now lowered my chances of recurrance to a 1-2% chance from 20%. I never need another mammogram again. I wear a sports bra per my doctor but I technically would not need a bra at all anymore. This was the best decision for me for sure!!

Best of luck to you and feel free to message me if you need to know anything else or just need to vent!!!

{{Hugs}}

Violet

I was diagnosed with IDC in 1992 at age 34.  My surgeon told me I would have a lumpectomy and rads - LOL, I didn't know to ask questions - and that the survival was the same as with mastectomy (although, of course, the chance of local recurrence is higher).  I went 19 years without a recurrence and was recently diagnosed with a NEW primary tumor in the same breast.  Since you can't radiate the same breast twice, I had to have a mastectomy in that one - and chose a prophylactic mx in my right breast.

Any regrets about the original lumpectomy since, if I had had the entire breast removed then, I likely wouldn't have had a local recurrence?  NO!  It was important to me to save the breast at the age of 34 and I got to enjoy it for another 19 years.  However, had I known AT THE TIME I would have a new primary 19 years later, I probably would have had the mx because now I have to worry about the small chance of a metastasis.   Do I regret having had a prophy in my right breast this time?  Not at all!  Twice breast cancers in one lifetime is enough and I'm ready to never worry about it again.

Here's a quote I recently found that means a lot to me:  "You made the best decision you could with the limited information and resources available to you at the time.  Knowing what you do now, you might make a different choice.  The best option now might be to askw hat you can learn from that experience that can guide you forward."

It is your decision. Fast forward a few years and think of both scenarios (lumpectomy and rad vs MX). Which decision sits best with you. I went back and forth for just a bit because I wanted to logically weigh out and research my options. However, in my heart, I knew from the beginning I wanted at least a MX. I actually ended with BMX and have no regrets.

Long,

I had a lumpectomy with chemo and radiation.... my surgeon told me at the time that she would not recommend a mastectomy unless I had some reason to want it--then she would do it.  My tumor was under my breast, very close to the front--easy to get out-- with very good margins.... 

I have to say, when I saw your question, I had to think about if I had any regrets--honestly, I have not thought about it at all..... I was so focused on my kids, work,chemo, etc.   Never really thought about the actual surgery, since that was the most minor of the things I experienced.  But, I have to say, I don't regret it... I have annual mammos and MRI's and at least 2 onc visits.... plus my gyn and pcp are checking me out--- so almost every other month there is someone checking--- and I really don't worry about it any more.  I cannot control if there will be a recurrence or not-- just have to keep living my life.

My surgeon did a masterful job-- cannot even tell I ever had any surgery at all--- and now that I think about it, I was so emotionally over the top,I am not sure I could have dealt with a mastectomy.  Most days I completely forget that I ever had bc.... 

I wish you luck--this is a hard decision....

Hi,

I had a mastectomy with reconstruction as I did not want to take tamoxifen or have an increased mammograms because of dense breats. My implants are not perfect either but I like them.

good luck with your decision.

Amy Lynn

I am in the same predicament as you. DCIS on the right breast and am weighing the option of BMX or UMX. My initial reaction upon getting my dx is BMX but after much research I realized I was a little too cavalier with my thinking and that I wasn't fully understanding what it would mean to lose both breasts, to have scars on the new breasts, to lose sensation in that area, etc. It kind of hit me after one of my neighbors who is a cancer survivor showed me her foobs. It was an eye opener for sure. Now my decision will be influenced by what kind of recon I am eligible for. If I can have a SSM (skin sparing) or DIEP then that might push me to BMX.

As echoed by some of the other ladies on this board, I feel lucky to have caught the cancer so early. I don't know if I will be that lucky again should I have a recurrence which is why I am seriously considering BMX. Again, a personal decision only you can make. But I understand where you are coming from. Best of luck!