January 2014 Surgery Sisters
Comments
-
Katie, enjoy that adult movie, lol! Hard to believe we have all these anniversaries. Sometimes it feels like we just started this journey and other days it feels like a lifetime ago. Wishing everyone who has ever posted on this thread peace, love and healing!
Ann
0 -
Katie -What a nice sentiment. Thank you for the birthday wishes. Your reference to Franken boobs took me back. I remember holding it together just long enough for my doctors to leave the room (both my PS and BS were there) and weeping silently when they left. My mom's face a mirror of my own thoughts, but I took photos along the way,to document my progress and it is amazing the transformation that has taken place over this past year. I realized the other day that I hadn't used the word foobs in months, and now think of them just as part of me. That, along with being cancer free are good reasons to celebrate.
So I saw my BS yesterday for my 6 month exam and she said everything looked great. I do have an issue with my implant on the right trying to slide trying to slide into my armpit which she suggested I talk to my PS about. I know she's right, and it's a simple fix, but of course it would mean another surgery. I refuse to do anything before October when my sick/vacation time resets. I hate not being able to stay home and recover. Anyway the visit was a good one. She was much more worried about my knee and the stairs at my condo. LOL, she even suggested I stay with my ex husband until I'm off the crutches. Wow...that sounds just awful!
Woke up with phantom pain in my heel at 3 am, so am on my ROM machine. I was so exhausted yesterday that by 2 pm, I was having trouble focusing. I can tell today will be worse so am giving up and staying home today....using another precious vacation day, but at least my son is with his dad, so I won't have to make the trip down the stairs until late in the day to pick up my son from after school care.
Thank you all for your words of encouragement and support.
Love and hugs,
Diane
0 -
Thank you to everyone for the birthday wishses and warm welcome to this elite group. Today is my big day !! Im having the exchange at 3pm...not sure if Im staying over night. Im very nervous but so happy to be getting on with this nightmare. See you all soon
0 -
Ann Marie,, We'll all be with you in your pocket today. ((Hugs)). Let us know how you are.
Diane
0 -
Good luck with your exchange today AnnMarie!! How exciting!
Diane, glad to hear things went well at your 6 month follow up. Sorry to hear you may have a revision in your future. I know what you mean by another surgery.
Here in MN we had minus 15 degree temps last night with 35 to 40 below windchills. This weather is insane, but it is January after all. I'm just so glad I don't have to go anywhere. Besides, I'd be afraid of my foobs freezing, LOL!
Today I am inflating my new exercise ball and starting my easy peasy Pilates stretches. Baby steps...
0 -
Well ladies, my surgery was cancelled because I have a staph infection
it was rescheduled to jan 14th. only one more week. I just hope this staph infection is gone by then. ok well, im crawling back under my blankets0 -
Diane thanks. Still waiting for results of my MRI. Tomorrow my school has a delay because of the extreme cold. Temps are supposed to be near or at 0, and wind chill could be -25!!!! Damn that's cold lol
I've left 4 messages at my drs office to get these results and still have no answer! Guess I'll spend the morning calling them again! Diane you mentioned an implant sliding... Does it look like one side is bigger than the other? Like ones drooping? That's what I have going on. I'm not sure why or how it gets fixed but... Almost seems like the alloderm isn't hold it. I'm flat on top of implant near collar bone and implant gangs down a bit.... I see ps to discuss fat grafting on jan 13 not sure if that'll help or if more work is needed. When people say they need pocket work what does that actually mean? What is done? What is it for?0 -
Hi all
AnnMarie- so sorry surgery had to be cancelled. But you wouldn't want to go in to surgery already sick, so a small delay is not too bad.
Beverly-I don't know what others mean by pockets, but I have a pouch on each side of my chest, under the arm. I believe they are there for reconstruction. My BS, who is one of the top 10 BS's in the country has refused to talk to me about recon yet. Hopefully we will discuss that when I see him next week, which will be two weeks short of one year since the surgery. Anyway, these pockets or pouches are kind of like "love handles" except on me, at least, if I don't keep them tightly supported and compressed, they swell and hurt. The one on the right side where they removed lymph nodes gets very swollen and painful. I have been dealing with it by wearing sports type bras 24/7. During the day, I wear one with my foobs in it, at night I take the foobs out. It's kind of ironic that I have no boobs, yet can't go braless, ever. I am really hoping the Dr will have a solution this visit. Especially since I am still leaning towards no recon. I have heard too many stories like yours and Diane's where there are still problems after recon, possibly needing even more surgery to fix.
Hopes that helps
Anne
0 -
Anne, that sounds awful. I hope you will be able to get resolution soon. I also hope you don't shy away from reconstruction because of what others post on this site. Other women's comments on the various threads REALLY scared me, too, back in the beginning. But I am sooo glad I had it done. My PS is very talented (but really kind of a jerk
). It was a long process and it wasn't pretty in the beginning, but I love the end results and it truly has been the silver lining in all of this. That being said, there are many women who opt not to do reconstruction and are just as happy with their bodies being flat. It's such a personal decision. I kind of wonder if it may be a little more challenging to do after surgery and radiation, but what do I know... I'm not a PS. I've only read about women who've had 'immediate' recon w/ expanders.Beverly, you may need a breast lift on that one side and fat grafting. That was kind of similar to my situation before my exchange. The non-cancer side was drooping, so my PS did a lift along with fat grafting during the exchange. It seemed to do the trick and so far the fat is holding (sometimes it doesn't).
Pocket work is more extensive. I have more of a pocket than others, I think, because my implants are on top of the muscle so there is lots of alloderm holding it all in place. If you've sewn or worked with fabric, just imagine how you would hold something in place, kind of like those fabric pockets inside mastectomy bras that hold a prosthetic. The way I understand it, if the pockets are too big for the implants, the implants tend to slide around. To fix it, the PS has to tighten them up or bring in the seams, so to speak, although I'm envisioning this from a sewer's point of view, not medically, so don't quote me on that. There are a few women who've gone through this on the picture forum and others could give you more insight. Whippetmom is always the best person to go to for advice. I've read it's more painful than the exchange, as you can imagine - the PS would have to "rip out" seams and start over with the sewing to tighten them up. My PS didn't have to do pocket work during the exchange, but I've always wondered why my surgeries seemed to be so much more painful than others. I've attributed it to my implants being on top of the muscle along with the fact that he used TONS of alloderm, but who knows. I'm just glad I'm done!
Mary
0 -
Hi ladies. Just curious as to what your follow ups have been after BMx. I saw my dr at 6 mos and she did a touching exam to feel for anything and an ultrasound on a spot I was concerned about. It came up scar tissue. I see bs in march and wondered if they'd do an MRI, ultrasound or just touch... Seems they should still be looking inside to make sure no reoccurrences occur as this is possible unfortunately. What did ur dr do?0
-
Same here. No tests except for physical exam and ultrasound. I had a concerning area and they did an ultrasound on the spot. The radiologist said it was probably microcalcifications - a reaction to the alloderm or fat grafting.
0 -
Microcalcifications are what made my bs do the biopsy in the first place!! Ugh0
-
Yeah, that didn't sound good to me either! This is in my non cancer breast. I hate that I'm having these in my formerly "good" side. My NP said it might also be a reaction to the implant itself.
You might want to ask your PS about side effects of fat grafting - microcalcifications and fat necrosis is another possible side effect of fat grafting. There's still so much they don't know since this is fairly new technique for those with reconstruction.
0 -
Hi Beverly,
I found a lump this past September. BS had me do a US and then an MRI. Turned out to be scar tissue. She will see me every 3 months for the next year. And I'll have another MRI in Sept .
I am kinda the exception to the rule with the MRI's as I don't think everyone gets them every year. My BS stated that she wants to keep a closer eye on me because my case was weird from the beginning.I had an US, said it was cancer, followed by a mammo, where they couldn't see anything, dense breasts don't cha know, then an MRI, well maybe its cancer, then the biopsy that said no ....funny cells but not cancer....yet...or maybe never. But, I believe "they" were only looking at the biggest lump. I had 6 lumps. Sooooo on the day , actually in the few minutes before being wheeled into the OR for the BMX I was told....what if it isn't cancer and I am taking your breasts for no reason? GULP. I had to make that decision in a split second. I listened to my gut feelings...and did the BMX. It wasn't until I received the news...AFTER the BMX, that yes indeed... ALL the lumps were invasive...ha ha...good call on my part.
So my point is, what do YOU want? If you want a scan then get it. If your insurance company won't cover it you can pay for it yourself. I don't have insurance, the cost of my MRI was $5oo. doable for us and fabulous for peace of mind.
eve
0 -
My husbands insurance has covered everything 100% even 600$ worth of bras yearly. If my dr orders the rest, the insurance covers it. That's y I don't want to miss anything... If its "typical" to have certain tests the first few years I want them done! My drs are great but obviously don't have the same concern as I do as far as possible issues, recurrences etc. my bs told me to relax and well let's just say we got into a spat! She called me paranoid and said I'm cured! My ps, well we also got into a spat because I was questioning pain I was having and why one side is much lower than than the other- and it wasn't before. She dismissed me and said make an appt for 2-3 months we will talk about fat grafting0
-
Wow, Eve, you are truly unique in your experience. Glad to hear your docs are taking good care of you, my dear!
This is a little off topic but kind of in that vein, when I read on Natrelle's website that they recommend MRIs every so often to look for leaks, my doc said they have to say that as part of their disclosure and the NP suggested I could do private pay if I'm really worried about it since they would never do an MRI for that reason. I kind of looked at her like she was nuts. But if it's really only $500 I might consider it at some point down the road.
At my last follow up I tried to make an argument for doing an MRI to my MO's nurse because of the unusual circumstances in my case, but she said that MRIs do not pick up lobular cancer well. She said a more effective test in my case would be a bone scan or CT scan since lobular cancer most of the time spreads elsewhere, not locally. Many times it goes to the bone, but it can go anywhere at all - it's such a weird cancer! So, that kind of shut me up as far as worrying about lumps and stuff in my breasts, lol! But I totally trust my team to follow me and take care of me. She spent a lot of time telling me what I should be looking for so that I'm aware of what symptoms to be concerned about. She always answers all my questions and takes as much time as I need. So....I try not to worry and I'm trying my best to follow their advice, that is to enjoy my life and celebrate my positive prognosis.
Beverly, that just sucks that you are having that kind of experience with your docs. If it were me, I'd be shopping around for someone who is more patient and compassionate.
Have a good weekend everyone!
0 -
No recon is perfect. Mary, I am sorry that yours has been more painful than others. Mine too. My implants are under the pecs and I had thought that the pec stretching was what made it more painful. But now, given your story, I think its more of a pain threshold thing than the type of recon, for me. Especially given that nipple tattooing was super painful for me, and it was supposed to be a breeze. I'm just a wimp. All of my surgeries and recoveries took more pain management than the norm. Its just me. I was supposed to have my second tattooing yesterday, but cancelled because my infusion on Wed. made the idea of trying anything nipple related on Thurs. not doable. I was crazy to try to schedule them back to back. I usually have a Tamoxifen headache and Herceptin infusions seem to make it worse for a few days. Wed. I also had my first Lupron shot. My headache was through the roof this time. Each cycle is a bit different for me though. I'm not sure if Lupron is aggravating it - has anyone else had headaches with Lupron?
The biggest surprise for me with the recon was that with the placement under the muscle, any time that I engage my pecs, my whole chest gets super wrinkled. My PS said that this is normal. He had a word for it - something like compression deformation. And unfortunately, there is not anything to be done about it. Its a small price to pay, but a piece of how BC changes things. It makes me self conscious about exercise. I no longer feel comfortable in tank tops. This is such a petty silly vain worry, and nothing compared to the major health issues here, but I was not expecting my whole chest to shrivel up. No one had told me about this. So, that's why I'm writing about it - for those who have not yet had recon. I feel like such a complainer. Thank you for being a forum for it. My family will only tolerate hearing positivity from me 100% of the time (strong believers in attitude making the difference in beating cancer). But the truth is that I don't feel positive and lucky with all of this. I am grateful for many things, but not for the imperfections of my post BMX chest - I liked the imperfections before hand. I do like being able to go braless and no sagging factor. That part is great.
0 -
Katie, oh no! It hurts to have a nipple tattoo? I. Might have to rethink that. So yes....one of the first things I learned from this thread is how to rant. You don't have to always be positive here. We get it!
Ok, so here's a good doctor joke for all of you. A fellow bc survivor posted this on another site and I just had to share:
A doctor and his wife were having a big argument at breakfast. "You aren't so good in bed either!", he shouted and stormed off to work. By mid morning, he decided he'd better make amends and called home. "What took you so long to answer?" "I was in bed." "What were you doing in bed this late?" "Getting a second opinion."
0 -
Formydaughter
I'm only 11 weeks out from BMX, but Yeah...the whole wrinkly contracted muscle thing...not pretty. I noticed when I vacuumed the first time. I put on a bra to see how much shows and you can see it pulling, but for me most of the wrinkling is covered. It would definitely show in a tank without a bra or camisole without a lining...but then again my scars ridge shows through also. I was hoping getting perm implants would hide most of this. Guess not
0 -
Hi Ladies: So many posts...I feel so behind, and don't have much time, but wanted to jump on and say that what you look like pre-exchange is NOTHING like you will end up. Fat grafting will hide a lot as well. I'm fully comfortable with tank tops, although I do wear a sports bra because of my new nips, but they lay down, so I don't need much. Beverly, yes, I may need some pocket work, but the fat grafting took care of a pretty large divot I had on the top inside of my right implant.
All I can say horesmom, is to communicate and ask questions of your doctors. I just went back and looked at my photos from week 10 and then after my exchange...I can barely remember looking like that. My PS corrected some skin issues at the exchange and did fat grafting/nipple recon in a separate surgery, mostly due to a hematoma I had earlier that was still resolving.
I hadn't heard that tattoo's were painful, but I don't care...bring it on. I'm guessing that in February when I see my PS, I'll get my referral.
Linda: I wanted to tell you that after my knee surgery, I started to get small itchy sores like you were describing. They seem to be going away, but since I'm not on Tamoxifen, it must be something else...maybe stress? Anyway. Hope it has resolved for you.
Beverly. My exam at the BS was just a physical one. If she feels something, I'll get an US most likely, but I will have an MRI every 2 years to check the implants and make sure there are no ruptures. There just aren't any guarantees, but I personally plan to do what Mary said, stay vigilante, listen to the dr's instructions, and just live my life. If something happens, I'll deal with it.
AnnMarie: What a bummer. I hope the staff infection leaves you soon. I had one years ago, and it's not fun.
Mary - I guess we'll be celebrating our BMX anniversaries together next Tuesday. I'm going to a concert in SF with my cousin. Her daughter's band has been touring across the country from Maryland, and has one night in SF. I will raise a glass to you!
Love and hugs to all of you, my beautiful sisters!
Diane.
P.S. Feeling Soooo much better today!
0 -
Just to clarify - I'm sure that nipple tattooing doesn't hurt for most people. I had regained more feeling back to my foobs than expected. And my pain threshold is weak. And I was only wks out from nipple creation surgery, so they were tattooing right on top of a healing incision. Although it was PS approved, not recommended! I'd give myself more time between procedures had I known then what I do now. So, no tattooing fears. It's just me. Also, they did the tattooing right at my PS office. If it hadn't been so convenient, I'd have gone to Nipples by Vinnie. His work is great.
Hugs,
Katie
0 -
Katie - actually since you told us that, I've heard of another woman who had a similar problem - when she getting a tattoo it was so unbelievably and surprinsingly painful that she had to have the person stop. She was able to start again, but gosh, who knew?? At least I have forewarning now. Her results were so impressive there's no way I would not have it done because of the possibility of a little pain. If I can do breast cancer, I do can anything, lol!
Hey Everyone,
So..... HAPPY ANNIVERSARY to Diane and to me!!!!!
WHOOHOO!One year ago today I underwent a double mastectomy by the most amazing and wonderfully compassion surgeon who I'd recommend to anyone in a heartbeat. You're going to think this is crazy, but the night before I called my surgeon with a dumb question but really just wanted to tell her I was looking forward to my surgery and that I couldn't wait. It's true - it was a long time coming. I was diagnosed in June and didn't have my BMX until January. Check out my signature for more details on that. So yes ... big day! And it was a long one. I checked in at 6 am and they got started at 8 am with the double mastectomy which went until about 12 pm. My plastic surgeon took over with the reconstruction which lasted until around 3 pm, and then I was taken to recovery for about 2 hours. In recovery I remember waking up and looking at this nurse who had the biggest smile I've ever seen. At first I asked for my mom! Can you imagine? A grown woman asking for her mom, lol! When they wheeled me to the hospital room my DH was waiting for me. I almost cried when I saw how they were going to transfer me. I was in so much pain! But the nurse who hooked me up to the hoist was an expert. I only moaned a little bit as they wrapped me up and lifted me from the cart to the bed. Those nurses are amazing! Later that evening they told me the docs were doing their rounds. I remember my surgeon walking in trailed by all the interns who gathered around beside her. I felt very self conscious with them all lined up, nurses standing by, in what seemed like standing room only. Everyone was dressed up and I had managed to be upright in my chair to greet the entourage - in my gown, of course, trying not to look and feel like a crazy lady. I watched as the words came out of her mouth. I heard, but didn't hear....you're cancer free!! Such wonderful words!
Later on, with just the two of us in the room, I remember DH opening my gown to have a look at the new me and both of us being pleasantly surprised at the little "mounds" on my chest. Later when DH went back to his hotel room, I swear that was the longest and most lonely night of my life. I had brought a book and my tablet, but all I wanted to do was stare out the window or the TV - and take my pain meds! I'm still amazed that I was able to leave the next day. THey sure don't like to keep in the hospital afterwards. I think that is so wrong!
Just like I did a year ago, I've been looking forward to this day! There are lots of mixed emotions, as I'm sure you all know. Am I happy? YES! Words can't describe how grateful I am to able to say that I am (still) cancer-free. I just hope to be saying that for years to come. Do I still worry? Of course!! I've come a long way, but I look forward to the day when I don't think about breast cancer or surgeries or my foobs for days at a time. Needless to say it's been a long road, but I still have a ways to go before I'm okay. I realize you never really get over it. For now, I'm feeling very .... accomplished in "celebrating" this bittersweet milestone. Today I'm thinking about my team of care providers! They were and are simply amazing. Is it crazy to say I miss them? I thought about calling my breast surgeon today to thank her. Maybe I'll just send her a Thank You card instead, lol! But most of all, I want to thank all you ladies, my January Surgery Sisters - for being there when I needed you the most. Wish you were here so I could give each one of you a hug! You should know I have tears in my eyes and a lump in my throat as I type this!
xoxoxo
Mary
0 -
Hi Ladies...yes as someone said, so many posts and I just wanted to jump on real quick, staph infection is gone !!! Exchange is tomorrow at 2:30, Ive never been so excited in my life to have surgery lol. Seems to me that a lot of us have asshole PS's ! Mine is great at what he does but a complete tool ! Someone above said their PS wouldn't discuss exchange..mine wouldn't either until preop ..which sucks bc I had soo many questions. I also found out, after thinking since bmx that I could "pick out" my new boobs..but nope, not the case, ps said it's a gametime decision because he wont know until Im on the table what size will fill these pockets/slings. But I guess Im ok with that ...Im just glad Im alive and that I will have boobs again
Wish I had more time to read everyones updates but so much to do to get ready for tomorrow...and ANOTHER recovery. Hope everyone is doing well...ttys
AnnMarie
0 -
Mary - congratulations on your anniversary! Diane too! Mary, your story is a good one - to be happy for the surgery. Thank you for sharing. It puts a whole different perspective on things and really makes me think. And feel more grateful.
I think that the difference was that you had so much time after dx before mx. In that sense, mx surgery was a goal. And a great milestone to have gotten to after all the earlier procedures. Since my surgery happened so whirlwind after dx, I did not have time to process what was happening to me and felt like a victim, even though I was grateful for my BS and PS and their work. My chemo came after. Although I was terrified and had an out of body - I can't believe this is me - experience that I was actually going through chemo, I wonder and suppose that chemo was likely worse for neoadjuvants, given the timing would have been whirlwind with dx. It would make chemo scarier. If we were given a choice of which order - surgery then chemo or chemo then surgery - I wonder which we would pick. (Sounds like a Zobmondo game question - where you have to pick the lesser of two evils...) I had previous surgeries, so that seemed less scarey to me than chemo. But there was no measuring stick at the end declaring me cancer free, as with the neoadjuvents having a known treatment response. In the end, its all just an awful shock, regardless of order. But, Mary, thank you for sharing your upbeat attitude and gratitude. It is inspiring.
AnnMarie - best of luck with the swap out. I too did not know what implants I would have. They let me look at the options and I knew how many ccs we pumped in, but they said that PS would make the call on the table. After hearing about tear drop shaped implants being superior for look and feel, I didn't get them. But it turned out just fine, as it will for you. They should be so much more comfortable than the TEs. I noticed this right away, even during the post surgery pain. I wish a quick recovery for you.
Katie
0 -
Happy anniversary Mary. Your story was beautiful. So much has happened for all of us this year.
I started my day by catching the wheel of my walker on the carpet transition strip, as I was rushing toward the elevator door that they were holding for me, and falling right on my butt! I saw your post as I got into the office and realized that between my son being too sick to go to school and my humiliation in the lobby, I had completely forgotten what day it was.
Sometimes when I look back it seems as though the past year just flew by, and other times, I'm accurately aware of how much has happened, and the strength it took to get here.
Tonight I listened to my cousin's band play and the were amazing. I can't imagine a better way to my life after breast cancer
AnnMarie- good luck tomorrow. We'll be with you!
love and hugs,
Diane
0 -
Thank you ladies ! Im so nervous I want to throw up lol. Just popped on for a quick second, talk soon
0 -
AnnMarie - don't be nervous! I'm sure you're in good hands! Deep breaths! Here's a technique that works for me when I get nervous: Inhale as long as you can, counting, hold it for just a moment, then exhale. Whatever you counted to - 5 - or whatever number it was - continue to match counts for both inhaling and exhaling. Close your eyes, think of your happy place and hold that thought! Then click your heels together 3 times, smile and say FOOBIES!! Just kidding on that last part! You'll be fine! Good luck!
0 -
Hi everyone
AnnMarie- hope everything went well yesterday and you are already on the road to recovery.
Happy anniversary Mary and Diane. I hope there were no lasting effects from your fall, Diane. Talk about embarrassing falls- I have had my share but the worst was when we went to NY for my younger brothers wedding. My parents lived in a split level home and my brothers fiance's family was coming to meet us all and go to dinner. Their car pulling up on the driveway woke my then 3 year old son from his nap. I went up to get him while everyone else was greeting them. All was fine until I tripped on a step coming down, and slid all the way to the bottom, laning on my butt an the floor, just as my mom was saying, "and this is my daughter, Anne, from Fl. It did help break the ice, though between 2 families that has never met before.
I saw both my Onc and BS this week. Both were just check ups and all went well. My biggest issue is the pockets I have on my chest under the arms that I have to wear bras 24/7 to keep from being sore and painful. I thought they were excess skin the BS had left for possible recon. He explained they are lymphedema pockets, caused by radiation ( the one on the right where the cancer was is much worse) and I am almost, but not quite ready for him to fix. I am still reacting to the radiation. Besides being full and somewhat painful, it is still red, and warmer than the rest of the area around it. I finished radiation at the end of May. I will go back to him in April, for the repair surgery. He says it is out-patient, takes less than an hour, and should heal within a couple of weeks.
Hope everyone has a good day
Anne
0 -
Im home !!! Surgery went well but they kept me overnight because they were worried about infection. I feel like a million bucks !! Could be because Im on gabapentin and Percocet but I definitely don't feel like I did when I came home from the mastectomy. I have a little bit of pain but that's to be expected. I feel like I could run a marathon lol. So, ps said 6 months and I can get my nipples lol...I guess I have to wait that long because he wants to make sure Im totally healed. Thank you ladies for the encouraging words
0 -
Anne, that's a pretty funny story!
Just wondering .... if your pockets are from lymphedema, doesn't your Dr. recommend treatment? I always thought that it should be treated as soon as possible or it only gets worse. In addition to my arm and undearm, I had some truncal areas that were filled with fluid that no one seemed to notice or be concerned about, but I finally found a great therapist who helped a great deal to reduce the swelling. The hardest thing for me to come to terms with is that the swelling may go down with treatment, but lymphedema is forever.
AnneMarie - Yay! Glad to hear you're doing well. What kind of implants did you get?
0
