Moving On......After the Flap
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Hi ladies-just popping in to say "hello" to all.....
Lahela, I am SO sorry to hear of your loss. After BC dx, the sx's, recovery.....losing DH and my mother in the space of 18 days was overwhelming........I have suffered from some PTSD, I am sure. The only thing that seems to help is TIME.......and I started looking at that as "one day further away from BC, and a day closer to Dave".......crazy, I know, but it helps.
KLanders....praying for you.
I still haven't had areolas tatted.....I still have so much pink scar tissue, I haven't seen the need for it. It annoys my PS to no end........but I will eventually get around to it!
Love you ladies, and think about you everyday......
Jackie
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I appreciate your prayers, Movie and Enjoy. I ended up having 4 different surgical opinions and decided to do the University of Michigan route of surgery then chemo. My surgery was almost three weeks ago. That went okay except I developed a very large and painful seroma but once that was drained I felt much better. I met with my new medical oncologist yesterday and it was an absolute train wreck. He started off by telling me that I had one tumor removed. Yikes!! I had two tumors - so tomorrow I have a mammogram and maybe ultrasound to see if one tumor was left in on accident. Then he proceeded to tell me that I had no lymph node involvement. But I had already seen the pathology report and knew that 1 node had come back positive (.4cm) for cancer. Then he goes on to say that I'm post menopausal which I'm not. I was beginning to thing that he had read someone else's chart!! And the reason we did surgery first was to determine how aggressive the cancer was and to present the findings to the tumor board... which he didn't do. Aarrgghhh. I sometimes wonder if it's just me or if everyone deals with this kind of stuff! So back to Ann Arbor I go tomorrow for mammogram and then Monday for tumor board and then I might be starting chemo next Thursday... unless I'm having surgery because they finally find the other metal clip in me!
So that's the latest. I was certainly disappointed to hear that there is now lymph node involvement but at least it hasn't metastasized! There's always something positive, right? :-)
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klanders, so sorry about the oncologist. That is so disappointing! I have had a couple appointments where I felt the practitioner had no idea what they were doing. After all we go through it can be pretty upsetting. I had to see my oncologist's nurse practitioner after my DIEP. She insisted on doing a breast exam. I told her there was no need. Breasts were sore and I was quite certain there was no reason for it. She really insisted so I gave in. There was some scar tissue so there were some hard spots. She went on to ask if my breasts have always been "lumpy". I could have punched her. I just very sarcastically said, "It's not breast tissue. It's my tummy." She just gave me this blank look. I really don't think she got it. I had no patience for her. Lol. Thank goodness for the really awesome doctors we see.
enjoy, I have a funny story about areolas. When I was debating on whether or not I should have the tattoo artist color in the entire areola area (mine seemed bigger than they were before) I did an Internet search for nipples. Haha. Big mistake. The images I saw cannot be unseen. 😂
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Thank you jmb5! I am truly hoping that this surgery will resolve all my issues.
So - for the very first time my oncologist called ME yesterday. She wanted to discuss my diagnosis of Cushing's disease and the surgery to remove the adrenal gland and tumor. She even said she would visit me while I am in the hospital. It was the 1st time that I felt like I DO have support from my MO. -- I was diagnosed in 2013 - and our medical system needs drastic changes for all.
ALL of our doctors should be able to view our medical status from a central network - no just the particular hospital network. When you have an appointment, the Dr should know exactly who you are and your medical status.
klanders - we already have a difficult disease - you need a new MO. I am sorry you were put through this....
But for BCO - I would have probably made different and uneducated decisions in my treatment. This organization has been so helpful with lots of information and lots of caring people! I am truly thankful.
Lisa
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klanders, I am so sorry to hear of your experience with U of M. I would hope that such a reputable institution would have better doctors!! I agree with you....are you SURE they were looking at your chart and not someone else's? I admire your attitude. Stay strong. Hugs.
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U of M really is great... I think that MO was just having an off day. That said, I was given the option of switching docs and I did do that... although my new doc is SO young! But she seemed really intent on the details of me, so that's good! I had my first chemo at UM yesterday and it went well. They've suggested that I continue my treatment back at West Michigan Cancer Center (much closer to home) and I might end up doing that. I had the neulasta shot today at West Michigan CC and that was so much nicer than driving two hours back to UM. My ultrasound was clear so while we have no idea where the second clip went, they are positive they got all the cancer out.
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glad to hear they got it all. Stay strong! Hugs.
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klanders, so sorry to hear you are dealing with this again. I haven't been on BCO for a long time, but received an email regarding articles. Just want to let you know I will be thinking of you and praying for everything to go as smoothly as possible with your chemo.
Julie
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Going in Thursday to loosen a puckered ridge of scar tissue on the left. I asked if it was in and out (we just got that burger chain here) and was told yes, but not to expect a burger. I'm glad my PS's patient manager has a sense of humor
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Hey, everybody, Bosumblues pulled me out of my LONNNGGGG BCO sabattical with a very nice private message. Thanks Bosumblues! I think about coming here all the time, but something always gets in the way (namely raising Thing 1 and Thing 2!). I'm not even going to try to catch up, but I hope everyone is well and love to all.
I'm off to do MY homework (taking a statistics class...ugh).
Bailey
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Setback yesterday when told I'd have to stay overnight tomorrow after surgery. Seems the belly bulge is a hernia that needs repair along with some flap tweeks. Upset yesterday but better today.
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Haven't been on the boards in forever. Teacher, how did your surgery go?
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After having any kind of "flap" surgery, do you feel like now you have two "problem" areas to contend with? I am considering a delayed diep, but am concerned to cut a perfectly good part of my body just to make a halfway decent looking boob. I currently have an implant on the left and nothing on the right due to an infection in my radiated skin and my implant having to be removed. I am very self-conscious about it and worry that if I have diep, I will also be self-conscious of my stomach. I just don't know what to do . . .
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I thought after all I've been through surgery would be a piece of cake. Instead it was a stale two layer store-bought cake with that yucky shortening frosting! This time with out anti-nausea meds, I wouldn't be human today. Lefty is now a bit smaller but sore scar ridge is gone and the belly button (which I haven't seen yet) is supposed to be an innie again. The ab hernia is a thing of the past but has been like diep belly.Allergies with sneezing and coughing hurt even with the binder. Drains should be gone by the end of the week.
Today I'm going to finish smocking a panel of little purses. I have one completed and need to finish two dresses to give to my grandgirls. Their kindergarten graduation is Thursday evening and then they will be going to a wedding Saturday. They know I'm making them dresses and like what I make for them. I know this attitude will change so I enjoy it now.
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Oh no teacher, sorry to hear of the difficulties.my stage 2 is tomorrow, I'm hoping for the piece of cake version too.Hope all is well soon.
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Som - I understand your concern about body image and feeling self conscious about the problem areas. I had bilateral reconstruction and have a substantial scar ( 20") across my stomach. But I don't care. The anticipation of having a being wound was much worse than the reality. I can't wear a bikini - but that's no great sacrifice. And when I reach up high for something in public and my shirt lifts up, I'm quick to pull it down. And in a changing room I keep much more covered than I would have two years ago. But still, I don't really care.
The 'perfectly good' part of my body was very useful and I've benefited with my two new breasts and even newer ( and fabulous) nipples. With clothes, my stomach is now flat and the envy of my friends. Without clothes, it's my souvenir of how much stronger I am than the thing that tried to kill me.
And it's also important to recognize your priorities. I knew - without a doubt - that my first priority was symmetry. I was also certain that I didn't want any foreign substances in my body. So that made my decision simple. To achieve symmetry and avoid implants - I had to have a DIEP. And the extra scarring is something that I am content to live with. None of my muscles were touched, so that makes things easier. And I feel very comfortable in my body. I knew I'd never have my old body back, and even though I sometimes miss it, I'm happy with the body I have today.
Good luck with your decision. Making up your mind, and weighing the options is the hardest part of this whole ordeal.
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Janet, I appreciate your response. Thank you for the information and your kind words. You are so right about making up your mind being the hardest part!
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You know the photos of the warriors, scarred, missing parts of their bodies, physically never the same after enduring wounds inflicted in battle? And hugging their children, playing basketball with a prosthetic leg, running a business from a wheelchair?
Yeah. That's us. I have several feet's worth of fading scars, but I'm alive. My body will never be the same, but my life glows.
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Som - The decision-making really is brutal. Especially if you're as indecisive (and scared) as me. I even went to a therapist to help figure things out - though I think I knew all along what I wanted and was just too much of a chicken to recognize my gut instincts. That's another reason why the scars don't bother me. They're just scars, and it's just skin. My mind took a way worse beating than my physical self, so the fact that I feel whole, and centred, and balanced, seems much more important than the skin that I'm in.
It really helped me to make a written list of what I wanted. As I mentioned it was symmetry, the use of my own flesh, and I also really wanted my familiar cleavage. It's a modest one, but I liked the way I felt in my clothes and I didn't want that to change. I also had to be really honest about was important. And one of those things was looking down, and seeing the same familiar little cleavage, and familiar breast mounds filling my little bras.
I know it's hard - but you'll get there
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Thank you Janet! It feels so great to "talk" to somebody about this, as my family does not want me to have any more surgery and says I am fine the way I am and to just accept my body as it is. I appreciate your kind words.
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Anyone else disappointed with their stage 2? I had mine done today and I'm so sad with how small he made them I could just cry. They were so big and full after stage 1, I was so proud of them. They were actually a little too big and very mishapen, but with a bra on I had great cleavage for the first time in my life.
When he was marking me before surgery he said " you want a reduction too, don't you?" I said "I guess, do whatever you need to do to make them pretty and have them fit my frame." I was never expecting this much of a reduction. My DH said he probably did what he needed to do to get the shape nice.
I feel a greater sense of loss now than I did over losing my real breasts and nipples.
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Janet, I feel like I could have written your response to Som. There is no perfect solution to reconstruction, I suppose. There are days where my tummy feels uncomfortable, and it annoys me, but I believe for me, it's worth not having implants. My breasts are awesome, and I have no regrets about having the DIEP. The best part to me, is knowing I will never have to have another surgery. I will never have implants that need replaced. That's a pretty great feeling.
selizabeth, you are right.
Teacher, Glad you were able to get everything taken care of, but it sounds like you got beat up. I hope you're on the mend now and doing better. I remember how hard my two stage 2 surgeries were emotionally. Always felt like I took a step backwards in my recovery. What do they say about this being a marathon? Yeah. Many hugs to you!
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Does anyone participate in Relay for Life? I have been the captain of a team for 4 years now. It's called Karrie's Rainbow of Hope, named after my good friend's daughter, who died from neuroblastoma at age 9. We spend a lot of time fundraising for the American Cancer Society, and it's been a great experience for me and my family. They do a great job of honoring survivors at the event. I get to walk the survivors lap every year with my husband and daughters by my side, which is pretty special. Just wanted to encourage you to check out your local relay if you've never been to one.
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Tomorrow the last drain comes out. Jmb5, I will just be walking in the race for the cure, probably not even very fast, but it is ok with my doc
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I am struggling with body acceptance after stage two. My results look great, so it's not that I'm dissatisfied with the DIEP FLAPs. They just don't feel like me. They're quite wide and go into my arm pit. They're much bigger than I thought I'd be. I went up at least three cup sizes. It certainly doesn't look all that big when I'm naked. But none of my clothes fit in the tops now and bra shopping is a nightmare. I feel like my new breasts are so large that they make me look larger over all. It's just hard emotionally. Anyone else had this? I thought I'd be "moving on" by now but it seems like every step lands me in another mine field.
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philomene could I ask you a question. I keep hearing the same thing from people. ."phase 2" Is phase 2 just fat grafting after the initial flap surgery? I just had a BMX nipple sparing with PAP flap reconstruction 6 weeks ago and the only procedure the PS has mentioned to me is fat grafting for as he called it tweaking. I just want to know if there is more to it than that. Thank you for the info. I already feel like mine are further under my armpit than my as I call them "originals" were, but I might still have swelling too.
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Yes, it's the second surgery when the PS shapes and revises the flaps, and often includes fat grafting.
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I just had my stage two and I was a little disappointed because I thought they turned out too small. But now that I've owned them for almost two weeks, I'm very happy with them. My stage 2 included a breast lift and liposuction underneath the breasts and on my side boob area (my request). Lefty still has a little bulge from where my previous lumpectomy was. PS said if it doesn't settle into place by the time he does the nipples, he'll do a little lipo in that area (both are in office procedures).
If you feel yours are too big, perhaps ask if you could get some lipo.
I was really freaked out by my stage 2 surgery. Not that I didn't know what to expect, but when I saw all the incisions and bruises again it got me kind of down. Having to go through the healing process again felt like taking a step backwards. At least there were no drains this time!
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philomene, the PS should be able to fix anything you want it you're up for another surgery. I had two stage 2 surgeries... fat grafting both times. I struggled to find bras afterwards too and was discouraged. I went to Victoria's Secret and got fitted, and it was so much easier that way, having someone help me. I told them about the mastectomy and they even gave me coupons. Lol! I know they're more expensive, but it was SOOO worth it! My breasts are bigger too, so it's been an adjustment. I was so small before though, so it's nice to finally be able to fill out a shirt.
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jmb5. Just wondering how was the recovery from both of the stage 2 surgeries. I am trying to see how long I will be out of work after my stage 2. I just called the PS office and they said 1-2 weeks depending in what they need to do. I am thinking they don't know how much they need to do until I get closer and all the swelling is gone
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