Physical comfort and mastectomy vs reconstruction

Hi, 

I am only 2 weeks out since BMX with one implant and one TE. The implant side is now comfortable and I would be off pain killers if the other side were the same.  The other side was my cancer side with skin involved so TE  was required and the drain is still in and not slowing down yet.  It is still very painful and I am taking tramacet 4 times a day to manage.   Lots of nerve pain and pec muscle cramps.   I can't answer the longer term questions but my range of motion is great on the implant side and I hope for the same once the other drain is out.  Even though there is a lot of pain (8/10 on my pain scale and I rated my back labor as 10/10) I am still happy with my choice and so far would reconstruct again.  I am also extremely tired so far

I had a bilateral mastectomy due to bilateral IDC. My right side healed more quickly than my left. I had full range of my right arm at about 2 weeks & left at about 4 weeks. It really depends what kind of work you do as to when you can go back. I've read of women going back with drains still in. I had my drains pulled at 6 days. I went hiking the next day. I walked 4+ miles each day when my drains were still in. It helped me mentally. There just aren't any sedentary things I really enjoy. I started back at the gym after my drains came out. I found lots of thing to do as I gradually rehabbed my arms. That was almost 3years ago. I don't miss my breasts or regret my decision.

When I resumed swimming laps(less than a month after surgery), I had some difficulty finding a swimsuit that didn't rub in the wrong places. That doesn't seem to be a problem any longer.

I mostly just wear snug fitting sports bras under clothes. This helps with my mild lymphedema I get in my chest. I find if don't, I swell a little .Nothing like the pictures I've seen. I don't wear foobs or prostheses(not sure of the correct spelling or difference between them). Just not interested!

Good luck with your decision.

I had a bilateral mastectomy without reconstruction six weeks ago, and it has not been a difficult recovery. I was on Tylenol the day after surgery, and had Norco as a backup if I needed it, but it was rare that I did (mainly after I was home and moving around more, I would find that any pain I had was at night, which made it hard to get comfortable to sleep). I had my drains out 9 days after surgery and took one pain pill before that appointment, but would have been fine without it. Compression was a huge help to me, and I still find that if I don't use it I tend to get some swelling, but it's definitely manageable. 

I am still debating reconstruction; I really think I want to do it, but the latissimus dorsi flap is the kind of surgery my PS has recommended, and I am reluctant to do such a big surgery (I'm not sure I want to do surgery at all--I am waiting for my mastectomy bras to get here so I can figure out if I just need to see the shape I used to have, or if I really need breasts, if that makes sense). 

As far as work, I am a counselor and teach a class at a university, and was back in class two weeks after surgery. The next week I was back at work for most of the day, though I didn't schedule much, just gave myself time to adjust to being back. Four weeks after surgery I was back full time and was fine, and definitely felt like myself again. 

I am doing great in terms of range of motion (doing the wall-walking exercise the surgeon gave me, and one with a yardstick a PT friend suggested), and, not thinking, swung my six-year-old around a couple of days ago with no problem. (That may have been the best medicine of all!) My right arm doesn't stretch quite as far as my left yet, but I had a few lymph nodes removed on the right, so I'm guessing that's why--it doesn't keep me from being able to do anything though.

I was surprised by how much more manageable the pain was than I expected, and how quickly I felt better. My c-section was a much harder recovery physically. And as Lojo said, how NOT upset I was by my appearance I was. I expected to struggle with it, but it hasn't been that way at all. I initially did not plan to do mastectomy bras, but decided to be fitted anyway. I'm not sure how much, or if, I'll even wear them, but it's nice to have the option, mainly for making some of my clothes fit right. 

Good luck with whatever you decide!

lol... The implants go under your pec muscle so your cat is not an issue  but it sounds like you are closer to a decision!

yes I was told about it.   I got a textured implant to cut down on that risk.  But implants do have a fairly high fail rate after 10 years.   If I had enough tissue I would have gone with an autologous tissue recon instead

I had a left UMX.  I will be 4 months out next week.  I have been going to PT where I am being massaged and I am doing strength exercises.  I don't have pain, just in my shoulder area which I was told "frozen shoulder".  I do get tight daily when I sit too long at one time.  I work at a desk all day on the computer.  I don't have pain just some soreness still and I get some sensations which is normal. 

MellaBella, I'm going to answer before I read the responses so I don't get influenced, and I'll answer in order of your questions. All good questions:

I did not reconstruct - also due to existing physical ailments such as Fibromyalgia and OA, I couldn't take the chance to add a new pain burden to my system.

My recovery was AMAZINGLY easy compared to say, my hysterectomy!! It was difficult to bend down as I felt pressure in my chest and to reach overhead as it seemed to stretch the sutures. I went back to work when my last drain came out at 2 1/2 weeks. I didn't take any extra pain meds and just lolled around reading or on the internet which was a treat for me. Because no bones, organs or muscles are involved when there is no reconstruction, the healing is FAST and the pain minimal. My surgeon even admitted that it's just like a "big paper cut" (I had both removed). My SNB arm is still a bit awkward to move even 5 years out, but that wasn't particular to the mastectomy as they would have done that even with a lumpectomy. Turning to look behind when backing up with the car was tough at first and I found the chest seat-belt irritating. I told my doc and he said a LOT of men (flat chested) had to deal with the same thing - it was just the height it caught me at.

For the first couple of months it was painful to have someone hug me hard and even some clothing bothered me. I learned to wear very soft and loose cami's under sweaters or jackets to work and it looked great. I cannot imagine having to wear a bra over the wound!!!!! The loose, sexy flowing fabric actually helped to make ME feel sexier, believe it or not!! To be bare-chested is a very sensual experience. I still enjoy it over 5 years later.

I still put on a coat or jacket kind of weirdly as I have a tiny bit of range-of-motion issues, I guess, but it doesn't really bother me. It took 4 1/2 years before I had the guts to swing a golf club and I was THRILLED to find out I had gained at least 50 yards without my huge breasts blocking my follow-through!!!!

They were worried about architectural changes in my right breast, but cancer was found in my left breast! I had both taken off for that reason and am glad I did it in one surgery. IF I'd only one taken off, I would feel compelled to wear a foob to balance my body out, but worry that the required heaviness would have hurt me. My neck arthritis is much better without my heavy chest - I'd even had a breast reduction paid by insurance years earlier to alleviate that issue. My posture is better and I look a LOT slimmer without my chest entering the room before I did.

I am VERY happy with my decision to stay flat and my scar line is clean and flat. I had a general surgeon do the surgery and have other ladies who'd used plastic or breast surgeons say my scar is better than theirs!! I insisted to my doc that I wasn't getting recon ever, so don't leave extra skin to use down the road.

No surprises, except that it was WAY easier than I expected and I wish I'd known that going in. I was expecting a LOT of pain and discomfort and a long healing period. The surgery itself, with the anaesthetic is what you really have to recover from.

Good luck, sweetie!

MellaBella, this is such a personal decision you must make, but you DID ask for other's experiences and thoughts, so I will share mine.

First, a friend of mine had prophylactic BMX many years ago for BRAC. She is a singer, and lost a significant amount of lung volume due to the fact that the TEs put so much pressure on her chest between the muscles and chest wall that it caused some minimal "caving". Well, the PS never told her that was a possibility, he never asked her what she did for a living. She still sings beautifully, but it did negatively impact her breathing.

Another woman who was a competitive swimmer opted to NOT have reconstruction because of this potential loss, and most athletic woman may or may not be aware of the potential adverse effect if they reconstruct.

I had BMX in 2011 and have not regretted my decision to not reconstruct. I avoided multiple further surgical procedures, the year that it takes to get back to "normal" appearance, the feeling that any reconstruction would not FEEL like me - it would have no sensation, there would be no change in size if I gained or lost weight, they would just be perky breasts forever, unless they ruptured or had other complications. I ended up with an infected seroma after surgery, and so any implant would have had to be removed and start over, so I avoided that additional problem. I was eventually able to find bras to hold prostheses in place, but even that was pretty uncomfortable, and so I quit wearing them. Interestingly, I don't sense people LOOKING at me like I am abnormal; I think women who have extremely large breasts are the ones who get looked at, and the rest of us just get ignored, which is where I like to be anyway. Breasts don't and didn't define me, I didn't want further surgeries with their attendant risks and further damage to any other part of my body if it was a flap procedure, and I didn't want to risk compromising my lung function by even a small percentage, and finally, I didn't want some foreign object sitting on my chest that reminded me that it is not real, that it will never be real, it will never feel and sense and give pleasure that my real ones did. I am not happy that I lost my breasts, but I did go ahead with BMX because I had scars on the other one from previous surgery that made continued screening difficult, and I didn't want to be lopsided, so my BS was able to have BMX approved for me, and I do not regret that decision at all. I no longer have to do mammograms!

There are many reasons to have reconstruction, especially if you enjoy clothes that fit and drape "properly", and you will find support here on these boards for you and your choice. But it is YOUR choice and your body. BTW, some women have had the option of having immediate reconstruction if they are not facing radiation, and those seem to do well with fewer problems, and you wake up with a breast rather than a flat scar. Wishing you the best in your decision - and as many others have said: You have time! You can change your mind even years later if you wish!

I think age is a factor, I don't believe others have yet mentioned.  I was 62 at diagnosis, almost 7 years ago. KNEW I didn't want to have to go thru any more mammograms, wanted the "peace of mind" it gave me to have BOTH my breasts removed, even tho there was only IDC in one. I was very, VERY large, and being a uni was not for me, as I didn't want to have to wear a bra ( harness almost in my case) again.

Didn't want reconstruction, and allowed myself to be TALKED INTO IT by surgeon ( wouldn't operate unless I spoke first with "her plastic surgeon" the woman she worked with) - was told how "easy" it would be, no fuss, no bother. BULL SHIT.  Hated the expanders which I didn't need cuz I was LARGE, and could have had immediate silicone implants, but it COSTS more to keep visiting the plastic surgeon, and don't even get me started on "seromas" and inflammation caused by the tissue expanders (TE's) which I never had expanded.

Finally, I went to a different hospital, and saw a different plastic surgeon, who agreed to remove the expanders and put in very small silicone implants. SHE WAS AND IS WONDERFUL. Last year ( after almost 6 years) I had those implants EXPLANTED, in plastic surgeons's office, and feel better than I have in almost 7 years.

Realize I am responsible for allowing myself to being "talked into" the whole process by the original surgeon, plastic surgeon - and that is SO unusual for me.  Never under estimate the level of STRESS, STRAIN, FEAR, inability to think as you usually do - when you are facing surgery for breast cancer.

You can ALWAYS go back and have reconstruction.  When my implants were explanted, ONE WAS RUPTURED ( Mentor Silicone medium profile) AND - because of the shape of my chest, torso, rib cage, and even tho the implants were SMALL ( I think 300cc) I used to call them my "man boobs" - and one was more under my arm, than front & center on my chest.

COMFORT?  NO WAY!  The implants are placed UNDER THE PEC MUSCLE, and if you ever try to do a push up, or downward facing dog, or take a DEEEEEEP breath - you feel this lumpy thing under your pec muscle, and on top of your lungs.

Guess you can tell I am SO happy to be unreconstructed   Many are flat & fabulous, because of the implants, I'm now cute & concave, and  HAPPY to be taking deep breathes.  Think a lot about what you want to do, and LISTEN TO YOUR GUT.  

Good luck.  I'm so sorry to hear you have RA, and lupus.  That is SO MUCH TO DEAL WITH already, without bc.  If you are concerned about being "lopsided" you can always have a bilateral mastectomy, and wear lovely lacy camisoles with what ever size foobs you might want.

I had a left UMX in December of 2011.  I wasn't able to have immediate reconstruction because of radiation treatments that followed.  My recovery was not as quick as I thought it would be.  My incision took more than 7 weeks to heal and that postponed chemo treatments for a couple of weeks.  At first, I did the stretching "walking the wall", etc. exercises, went to PT weekly for six weeks and then got lazy.  I got fitted for a breast prosthesis and purchased several mastectomy bras, however, I don't feel comfortable with it - for some reason it moves around in the bra pocket and I find it hot to wear most of the time, especially in summer. I went to see a PS last August who said that he could quite easily remove the "dog ears" under my left arm and also suggested that I get a reduction, lift and some liposuction on my good breast.  I have been struggling with the decision for further surgery (BTW scheduled for April 9th).  My aunt, who I was very close to, just died of STAGE IV ovarian cancer and I cannot seem to get into the right frame of mind - to be 100% certain that I want to go ahead with this surgery - maybe I should postpone the surgery for a year, but then I think that come next year I'll be saying to myself that I could have had this surgery a year ago and would now be fine.  I hope I'm making sense!  MellaBella, as others have said - take your time, you can have reconstructive surgery years from now.  Wishing you the best with your decision.

We all have different stories of course. 

I was dx the second time at age 50, and choose to do immediate recon with BMX due to my age mostly.  I did not even consider anything else as I wanted and want to be as near to normal as possible but of course will never be. 

Emotionally?  Well having my sister dx with Stage 4, my dad fighting for his life with heart and pneumonia, and my daughter losing my 5 hour old grand daughter all within the same two month time period...I did not and have not let myself get emotional about myself.  Except for the hours prior to the BMX.  I fell apart and could not stop crying.  My PS saved me on that, he talked to me one on one for at least one hour before surgery. 

No regrets though.  You can read my bio for dates.  My most recent set back happened a few days ago, as I have to have a "bad side" repair.  It is suppose to be minor. 

On the upsdie, I was an A before and now a C and I am enjoying the attention that I get.  It is fun to wear form fitting clothes and low cut items, and I can not wait to wear that swim suit this summer. 

We all have a different stories, that is for sure.  Feel free to PM is I can give more information.  Good luck with whatever you do, I am sure it will be the right decision. 

Hugs. 

I will go listen to that one right not Sun.  Sounds good.  You are right thought, we should do what is right for us and not for society.  Hugs. 

No, DCIS absolutely can not travel to the contralateral breast.   

That said, DCIS is the same as invasive cancer in that anyone who has had a previous diagnosis of either DCIS or invasive cancer does face a higher risk (than the average woman of the same age who does not have a personal history of breast cancer) to be diagnosed with a new primary breast cancer.  In other words, having had breast cancer once, we are all higher risk (than average) to be diagnosed again. 

In the end though, most of us have one diagnosis only over our life times.

Not-Me, glad you appreciated the song, I was thinking, after my BMX, of creating a group called The Sisterhood of the Honorable Scar.  Maybe we could meet in the beautiful "light house" of your avatar?  Or is it a silo?  Whatever, it's lovely.

If you think of your milk ducts, you can better understand how something like DCIS couldn't travel to the other breast. You can't breast feed a baby out of one nipple and drain both breasts!