It's hard for me to "move on."

MrsBee · August 2010

Five years ago this week, I was diagnosed with cancer in both breasts. I had lumpectomy surgery, which basically just told us that the tumors were larger than first thought from the ultrasounds. I went back a month later to have bilateral mastectomies. Turned out to be a wise choice, as the pathology revealed DCIS and atypical hyperplasia all through both breasts (in addition to IDC and ILC). I know that I had three different kinds of bc all at the same time.

I had tissue expanders put in at the time of my mastectomies, went through all the fills and months of "bionic boob." Had exchange and nipple grafts. I've never been really happy with the results. My PS did nips at the same time as exchange, and the results look reallly strange.

I went to a well-known lingerie shop to get fitted, and they mis-measured me not once, but twice. The first time I bought from them, they sold me a bra that fit me (more or less) in the band size but not the cup size. It had to be altered and a "falsie" sewn into each cup to give me semi-normal results. When I'd wear the bra, it tended to ride up, and I'd sometimes wind up with one or both "foobs" hanging out the bottom at the end of the day. I would constantly be tugging on the thing throughout the day. I eventually gave up on it and just took to wearing camisoles, which only gave me coverage and no support.

I went back to the same shop to try again to get something to fit me. This place has such a good reputation that I thought surely they could fit me. The second time, they measured me and said I was still the same size. This time, however, they put me in a mastectomy bra which felt comfortable but still didn't fit me in the cup. To remedy that, the saleslady got me a pair of silicone swim forms (hollowed-out prostheses) to put in the bra pockets. She assured me that women who'd had reconstruction did use them. While this combination did give me a "normal in clothes" appearance, it was uncomfortable. By this time, the weight of my implants had caused the pockets they are in to stretch, and the implants tend to hang near my underarms. The inserts tended to want to go the same direction as my implants. Having hot, heavy silicone forms wanting to go toward one's armpits isn't comfortable either.

I more or less gave up on it, only wearing the mx bras with inserts if I was going out and wanted to "dress up." Otherwise, I went braless and covered up with oversized men's T-shirts.

That is not me. I used to be an ultra-feminine girly-girl prior to bc. I liked dressing up. Even in casual clothes, I dolled up. Hard to want to doll up when you feel (and look) like a breastless freak.

A good friend gave me a link on proper bra measurement, and I measured myself to find out that the shop had mis-measured me. I've been able to buy a couple of pretty bras that need neither alteration nor inserts of any kind to help me to look normal, and they hold my implants where they are supposed to be. I am beginning to feel semi-normal again.

Where is my PS in all this, you ask? I've discussed my dissatisfaction with him. At the very least, he wants to replace these implants with something else and make some revisions by using internal sutures to tighten up the pocket that will hold the implants. Right now, he and I are both waiting on the gummie bear implant getting FDA approval, as he believes that it will give me a much more pleasing result. I see him August 24 to discuss where we go from here. I'm about ready to insist that we move forward with something. I'm just not sure what.

So . . . I continue to struggle five years out from diagnosis. I'm tired of the pain. I'm tired of not even looking normal in clothes. I'm tired of hearing some kid laughingly tell his friends, on having me walk past him in a store, "OMG!! I thought that was a dude, but it's not!!!" I'm tired of feeling like an "it." And, having had a prior cancer diagnosis (non-Hodgkins) three years before the bc, I'm tired of waiting for the other shoe to drop.

This is why I asked for hugs on the "oldbies" thread.

I also realize that I sometimes come on like a freight train jumping the tracks, and for that, I apologize to anyone whom I've bowled over and left in my wake. I want to get to a point where I realize that I could do that before I hurt someone. I'm working on it, but it's one step forward and then eight or nine galloping steps backwards.

I'm going out in a bit for an appointment, and you know what? I am going to do my hair, put on a little makeup, and doll up!!!!

Thanks for reading. If you've gotten this far, you deserve a plateful of virtual, calorie-free chocolate macadamia chunk cookies!!!

Beesie · August 2010

MrsBee, here's a big hug for you.

I'm just approaching my 5 year mark too, and I understand how you feel. While I haven't encountered the same difficulties as you, there are a lot of permanent annoyances related to having had a mastectomy and having implant reconstruction that sometimes bug the #@!! out of me. My muscle over my breast reacts when I do something strenuous; heck, it even reacts when I sneeze. From an appearance standpoint, my reconstruction is about 90% there but that last 10% can be a pain. I know which bras to wear and what type of tops to wear so that I look even - in fact because I went slightly larger in size (I had a small implant added on the natural side), I actually look better than ever! But I also have a drawer full of great bras that I can't wear and lots of tops that I can't wear. This is the 'new normal' and while I am okay with things, frankly, I wish I had the 'old normal' back.

I think your post is important because there aren't many oldies on this board and I think that how we feel - even after 5 years - is important for the newbies to understand. So often I read posts from women who've just started the reconstruction process, or maybe just finished it, or maybe even have just decided to have a mastectomy with reconstruction, and they write so positively about having a mastectomy and reconstruction. The thing is that they really don't understand that a mastectomy is a life-long change that will affect them forever in ways than they don't even know yet. I remember feeling great after my mastectomy - is was so much easier than I thought it would be. I remember feeling great all through the reconstruction process - I had no pain and it was fun to watch my new 'breast' grow. And I felt great after the exchange surgery - it was easy as pie and I was thrilled that I had so little pain and discomfort. What I didn't expect, however, was that years later I would still have that occasional bit of pain. What's a small amount of pain in the days and weeks and months after surgery becomes a big pain in the butt after a few years! I often try to explain this to those embarking on this process, not to discourage them from choosing a mastectomy with reconstruction but to ensure that they have realistic expectations. Mostly though I feel that I'm talking to myself; those who are early in the process usually don't hear any of this and prefer to hear the "great news!" stories about how easy a mastectomy and reconstruction is.

So my advice to you is that you remember that you are not alone. There is a whole sisterhood of women who've experienced what you've experienced, and who to one degree or another also still struggle with the new reality of their lives. I think most struggle in silence. I think you are brave to say that after 5 years, you are not still not ready to "move on". I get it.

Another big hug for you:

squidwitch42 · August 2010

Mrs. Bee,

I love how it was Beesie that first responded to you, bees of a feather I guess Well, I am not an oldie, but not a newbie to the pain of multiple surgeries. I've been knocked down repeatedly while friends have gone on to get married, have babies, and build careers. Some days life just doesn't seem very fair, and I also fight feelings of isolation. I am also sick of looking at this extra tire around my waist having been at my best weight before surgery.

fighting my way back again (what number is this...ten?)

so I will eat one of your cookies (with you) I hope...and wish you a better day after getting dolled up and a little makeup.

and Big Hug...

Traci

swimangel72 · August 2010

Hi MrsBee - (love your screenname, reminds me of a friend of our family we called "Auntie B")! I'm agreeing with everything Beesie said - and want to send BOTH of you a cyber-hug!

I also feel like I come on like a "freight train" (even in real life, I have to always be careful not to be putting my foot in my mouth). I try not to discourage the newbies with my reconstruction problems - but I feel obligated to inform them about the risks of hospital acquired infections (like mrsa) - so you will often see me posting the link to www.hospitalinfection.org - because I believe to be for-warned is to be for-armed.

I'm almost two and a half years out from my initial dx and feel the same way as you - again because my reconstruction is not at all what I expected. I started out with a Diep - ended up with a muscle-sparing free tram - a foob that was nothing at all like a breast - too fat, too flat and way under my arm. I couldn't wear ANY bras except baggy camisoles. Once I got through the abdominal mrsa and chemo, I ended up with a large hernia - fortunately I found a wonderful new PS who "saw" my problems for what they were and he did the Stage 2 (and Stage 3). I am now left with a very long scar that reaches from the areola all the way under my arm towards my back where the new PS had to do a lot of lipo and reduction of the skin to help make a normal looking breast. It's still way too flat in front - but I am sooo DONE with lipo and fat grafting! In November, I'm scheduled for one more revision of the fipple (it flattened) and some tattoo-ing to give it some color - but otherwise I've decided to just live with the odd shape that I'm left with. It looks OK in a bra - but I can't wear tight-fitting tops because it's too obvious that that side has dropped and is flatter at the tip.

At this point I'm tired of the entire reconstruction process and will just move on..........I want to concentrate instead of taking charge of the rest of my body's appearance by dieting and losing weight! I decided to focus on my upper arms and double-chin and rubbing thighs - things I might be able to improve - instead of obsessing over the stupid foob. My DH says it looks fine - he's very sweet - but we both know it's NOTHING at all the way I used to look before BC. Still I'm not uncomfortable and since the last surgery, haven't had difficulty finding a bra that fits - so you have my sympathy MrsBee..........and I do hope your PS can help you. If you have any doubts at all that he really "sees" your problem, don't hesitate to find a new PS........your insurance should pay for it even if you switch doctors. Good luck - and thanks for the cyber cookie - YUMMY! If I eat more cyber cookies, perhaps I can stay away from the real ones more easily! Wink

Hi Traci - we posted at nearly the same time - glad you also like cyber-cookies! Here's a cyber hug for you too!

squidwitch42 · August 2010

awww Big Hugs to all the ladies who are going through such difficult reconstruction.

Traci

MrsBee · August 2010

Thanks, y'all. I had a talk and good old "snot bawl" with my therapist this afternoon, and I've come up with a "game plan" of how to approach things. I see my BS next week for my 6-month check, so I'll talk to her about it first and see if she can offer suggestions. I see the PS on the 24th, and I plan to go in with a list of things that need attention and see what he says we can do. He's been such a kind and caring doctor, even if my foobs didn't turn out like I would have wanted, that I do want to give him a chance to fix things. But I am considering finding someone else if he can't fix things.

It felt good to doll up a little, even in this Texas heat. I may be middle-aged, flabby, and have foobs, but I still enjoy being girlie!

iodine · August 2010

Soooo glad you posted your saddness. I have been where you are, I just did it sooner.

My first go was a bad outcome: boob hung under my arm, no inframammary fold to hold down a bra, too small a boob and he reduced the good one for symmentry (I am a big gal and sure didn;t need that!) He also lied and said nothing more could be done and ins wouldn't pay for it, if something could be done.

First off, the nipples should never be placed until the implants have a chance to settle, which can take about 3-6 mos. Or more. Second: stitching the implant in place is NOT the ans. With a decent size implant, they are too heavy and stitching doesn't hold---been there, done that.

I got 3 consults about 6 mos post exchange. Time for them to settle and I wanted other PS opinions about what could and could not be done. I went to 2 different cities so I could get UNbiased opinions and neither city was where I had the first one done (yes, they do stick together).

Pics were sent to my ins co who authorized the repeat implants. The first doc I chose just wasn't sitting right with me in my gut, so I cancelled the surgery. I finally chose a doc who was NOT a trauma recon doc, he was purely cosmetic but board certified in plastic surgery (ck. NOT cosmetic surgery) so I knew he was good. And he had been recommended by several nurses.

We removed the implant which was poorly placed and had a lot of scar tissue. He had to do a lot of debriedment from old seromas that went untreated by my first doc., put in a new expander and at that surgery put an implant in the good side to "give us something to shoot for, sizewise". It looked great for my size and I was pleased.

Pumped up the expander/implant--75%water/25%silicone. Then we removed the port and I was good to go. OMG, he lipo'd under my arms, at my sides, and gave me an inframammary fold--just to start! It was amazing. I had the nipple done a few months later.

I was totally happy.

Now as to the bra thing: I came home literally crying all the way after my first two tries at bras. Nothing fit and nothing filled out. I learned to use one with streach cups and some support on the side to give projection. Half the time I go braless in tshirts and at home and stuff---I look pretty good with a tshirt.

Then last fall a chest film read that I'd had collapse of the implant, which was funny because I could tell no difference when sitting up, but when lying down the 3 year old implant was again under my arm----and he had sutured everything so that wouldn't happen.

SO---replaced the old one(which was actually FINE), but this time the ps added alloderm to give more support for it and to help keep it in place. Insurance covered all that I have written.

My first recommendation: get THREE opinions. Remember, they all recommend which ever surgery they do the most of and feel the most comfortable with. Then go to the one who You feel be best about. I realize you've been with this ps, but I also believe ps have egos the size of the moon and will never admit a mistake or that everything isn't wonderful. As a nurse, I can tell you that from both sides of the paper gown!

You are welcome to PM with any questions you may have. I noted in your last post you are considering another opinion and I URGE you to go with that feeling in your gut. Reschedule your appt on the 24th if needed.

OH, and if necessary, when scheduling a consult let the people know you are Not going for any type lawsuit or anything against the first doc. You would be amazed how many people are and the docs Hate to consult for lawsuits.

widowedbycancer · August 2010

As the husband of one who battled cancer fearlessly for nearly four years, the one who walked the entire journey from the beginning, every step of the way to the end, I am aware of some of what you have been through. The only measure that is important to you and your loved ones is that you are still here with them to enjoy life with them to the fullest extent possible.

When my beloved wife was asked on her last (unkown to any of us) day on this earth, how she was doing by a nurse when she went for some final tests she responded, "I am just fine." But she always said this during her battle and then would add (to me) "others are much worse off than I am". Told she had about 2 to 6 months to "live", she said "I don't mind the shortness of time but I have to have quality..." Hours later, she left me, in part to spare me, so I would not see her suffer.

Be thankful for the blessings you have received and live each day forward to the fullest.

don23 · August 2010

Mrs Bee - I would definitely go to your PS and tell him/her exactly what you want to achieve. If he doesn't listen then find another one. At the time of my first exchange I wasn't happy with the results but my PS said they looked great but if I really wanted him to he could "try" to fix things. I originally had silicone implants that were 650ccs. One side was much smaller than the other even though they were both the same size. At my second exchange he replaced one side with a larger implant (700cc) and that seemed to do the trick. He even said after that surgery that I was right to go ahead and do this surgery - ha! Although they are not perfect, I know that this is as good as it gets and I'm OK with that. I do look good in clothes and do not have trouble with finding a good bra that fits right. The only time it really bothers me is when getting dressed in the morning.

I'm glad that you got "dolled" up to go out. Sometimes that is what you need to help yourself feel better. I know I feel better when I take the time to do that for myself. I think it even helps to feel more feminine when you do that. Good for you! And thanks for the cookie.

squidwitch42 · August 2010

Dear Widowed,

So sorry for the loss of your wonderful wife...to love and be loved is one of the greatest joys on this earth. It's all too easy for me to pick on myself for the chemo weight gain, the hard "boobs" etc...and forget love doesn't see perceived imperfections. We all need to be good to ourselves each day, and to honor those who have moved on and those who stay behind to share their memories.

Many Blessings,

Traci

widowedbycancer · August 2010

I don't want to minimize what anyone who has been through breast cancer treatments endures, but yes you are right. After chemo just to try to reduce the tumor of the aggressive cancer to the point of possible surgery Pat underwent a mastectomy with a plastic surgeon on hand in case her surgeon could not close (fortunately he was not needed) and then later, port implantation which she retained for the rest of her days--after her veins were decimated by chemo. These things were unimportant to either of us. When she developed the many different side effects and problems from the treatments and from the cancer itself her attitude was also so very positive and uncomplaining. She would say "I don't want to be a whiner or complainer". As we journeyed together, a journey we we never expected to end so abruptly and I told her that I would give anything to trade places with her so she would not have to go through this she said" I wouldn't want this for you". Her oncologist called me the day she passed away to tell me that she was a very courageous lady who would not want to live like this (she had been told the previous day that she was to be released to hospice at home this very morning), but of course, I already knew that. My admiration for her and our love only deepend and we truly were ONE. During her battle we had good days and we exploited them fully with travel and enjoying those days together. I am so very fortunate to have had this short time (29 years of marriage--and especially the final nearly four years) with her and I will ALWAYS cherish the memories. It has been just over a year and we would be celebrating her 60th birthday in a couple of weeks.

Traci, I wish you and everyone who posts here the very best. May you never have to deal with this awful disease ever again. May you heal mentally, physically and spiritually and enjoy many, many years together with your loved ones and friends.

It's hard for me to "move on."

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