NOLA in September?
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Cherrie, I'll be thinking of you sista! Wishing you a great outcome and a easy recovery. Take it easy and let that man of your take good care of you.......I know he will! (((hugs)))
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Well, I haven't been on here in a awhile. It took a lot of reading to catch up!
Cherrie, good luck tomorrow.
Mags - I sure hope you find some relief soon. Wish we could be near our doctors! Dealing with ignorance is so difficult.
Chelle, I know what you mean about the cording and pain. I have one side that is worse than the other. On both sides, I have pain in my thighs (I think where the drain tubes were in my hip/thigh). I suppose this is scar tissue. After stage 2, I am also going to seek out PT.
Well, I had a surprising call from NOLA this week. Jeanine called and said that my surgery would need to be rescheduled. I was scheduled for May 29th. They said that they needed to move it up. So, we ended up going with Friday, May 24th. Someone must be before me because I am scheduled for 11ish. Thank goodness that Southwest is easy when it comes to switching reservations. I was disappointed. We have a group of friends coming to NOLA that weekend. We had planned to play prior to surgery. So, I told them that the hubby could come out and play but I would likely be recuperating. I will be working right up until our flight on the 22nd so won't have too much time to worry. Went to the hospital today and did the local pre-op stuff. Getting real.
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It's been awhile since I've been here - so much happening.
Cherrie - I hope you are doing well. I am thinking and praying for you!
Mags - I remember going through a similar situation, doctors who had no idea what to do with the seroma and why I had it and yes, using the term "cleaning up the mess" of another surgeon. Then perplexed reactions when I would try to describe what I needed done. One doctor was downright nasty because I hadn't gone to him for my reconstruction. Some of their egos are beyond huge. The good news is, it doesn't hurt to have it drained so it'll be over before you know it.
Russell - on the implant, I was very interested in having one as well. I was always on the smaller side and thought, if I have to go through this, let me love the way I look afterward. Unfortunately Dr. D felt I'd be packed in too tight with an implant added to the flap - he said a little goes a long way when you already have the flap. However, it seems like they are always updating techniques, etc. so I may check in with Jeanine on this again. My Stage 2 was in February and I do like the way my breasts look, just wouldn't mind a little more oomph. I'll be curious to hear what you find out about the implant.
Question for anyone who has been through Stage 2: Did you experience any inexplicable weight gain post Stage 2? I have been the same weight for 10 years, very little change. Suddenly, since the surgery in January I am up 6.5 lbs. I know it's not a huge increase, but on my 5'6" frame, it's making a difference and it's a little shocking since my weight has been so steady prior to the surgery. I'm not eating differently, but did just sign on with a personal trainer to try to manage this weight. In the 2 weeks I've been working out I've gained another pound - yayy.....I'm not on any medications, nor did I have any post mastectomy treatments. Just curious if anyone else had a similar experience.
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Thinking/praying for you today, Cherrie.
Hope you had a good night Marsha. I like that dilaudid stuff although I like it because it doesn't make me feel whacko like the other narcotics.
That oophorectomy thing is a tough one. I'm considering it primarily because I'm afraid of 5 years of tamoxifen and what side effects I'll have from that. I don't know which is the lesser of the two evils and I know each person is different. I sure which we didnt have to make these tough decisions. Everything I've done to this point has been colored by what my best friend has gone through since she was diagnosed with breast cancer a year ago. Radiation and chemo almost killed her so my biggest goals have been to try to avoid that path if possible. Tamoxifen has been tough on her too, particularly with her joints.
I'll be meeting with my oncologist for the first time this week. If she says I need tamoxifen even if I take out my ovaries then I'll try to keep them. I agree - if I have to do it then stage 2 is a great time while I'm already under. I have no clue what they'll be doing at my stage 2. Plication??? My skin is so horrible tight right now that I don't know what the muscle is doing underneath. I will just put myself in Dr S' hands. Working on scheduling stage 2 for July or August. I need to be healthy by end of August when we move my daughter to college for her freshman year.0 -
Syd - I have not experienced a weight gain from surgery, but have you had your thyroid checked recently? If not, you really may want to consider doing that test. A full panel. One of the most common reasons for weight gain. I have been on medication since I was 40.
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Thanks MartyJ - I have had it checked but not since the surgery. Good call. I'm seeing my doctor today, so will get a script to get it checked out asap.
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Syd - if the test shows you need therapy, try to get the doc to give you Armour Thyroid instead of Synthroid. Armour is the original, old medication and works on both T-3 and T-4. I have been on both and far prefer the Armour.
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Surgery is coming up soon and I'm starting to get a little freaky. My kids are getting creative trying to keep me distracted. My daughter (11 y/o) helped by breaking her ankle, right through the growth plate, on the trampoline . So now she's hopping around in a pretty pink cast and I'm flitting around her like a the mother hen I am.
Thanks for your post Pam44. Your journey helped me feel more confident about all this. You had a DIEP correct? I'm also scheduled for Stage II, 12 weeks after and I was getting worried about it being enough time between. Any words of wisdom?
K-Sue - I should be passing you in the hallway. I think I get D/C'd on the 24th.
Smooth sailing Cherrie. And Marsha it sounds like you are doing just great, even with your marching horse heads!
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Kristen... With me being 99% ER positive, I was getting Tamoxifen no matter what other things I did... My MO said the ovaries are just one way we produce estrogen. Fat is another for example. And since my cancer loved estrogen and basically fed on it, I need the Tamoxifen to "cap" the receptors so if there were any remaining cancer cells anywhere in my body, they can't feed on the estrogen. So if you are like me, then you will need it regardless... And do note, that your friends path with chemo and Tamoxifen wouldn't necessarily be your path. I was fine on chemo, worked, traveled etc. And am fine on Tamoxifen. I did worry what the oofrectomy would do to me at my age - its a crap shoot, and we all have to make an educated guess for ourselves and what we are willing to risk.
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I will be on vacation through May 20. WhooHoo!
Please PM me with list updates or additions and I'll add when I can.
Please welcome newbies, as you always do!
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KSue, it's hard to beieve it's almost been a year since we met suring our stage 1's...crazy how time flies. Sorry they changed your date
That would throw me for a loop, but I guess we all kind of just go with the flow. You're going to do great!!!Cherrie, thinking about ya
Talked to a lymphedema therapist yesterday and she thinks she can get me some relief and get me through the next 6 months before my 2b (YAY). Her name is Jenna Migliore, MS, OT, CLT and her bio says lymphedema certified. I have to get an order from a Georgia doctor though. Apparently, it's Georgia law..UGH!! So, I called my primary care doctor who knows what I have gone through and asked him to write the order for me. So we will see. If I get this to work and I like her, hopefully she can help me after my surgery too. The lady listed on the LANA website is now the coordinator for this group of physical therapists. I wish I knew of more of what to look for, but she seemed very nice on the phone and she's from LA and has never heard of CRBS. I haven't found one doctor here that has, which is just a shame and I am thinking about what I can do to change that and spread the word.
Have fun on vacation Spring!!!!
Healing thoughts & prayers to all of you!!!
Happy "early" Mothers Day!!!Chelle
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Good luck today Cherrie~
I hope you get some relief soon Chelle.
I think I'm getting some feeling back on my left side. The problem is it's not pleasant, it's uncomfortable. I wouldn't go so far as to say it hurts, but it certainly is an odd feeling, more of a tenderness if that makes sense. It's right in the nipple area and my nipples (both reconstructed) are no longer even like they have been. Anyone have any experience with this?
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Cherrie.... good energy... prayers... good healing!!!! Keep us psoted.
Syd... if it's a thyroid issue you may have other things going on too... hairloss, brain fog, brittle nails... I'm a hypothyroid gal too (last 20 years) an I'm on Sythroid which is a t4 but also Cytomel which is a t3 supplement.... You need both to feel great at least for me... It took me awhile to get my meds set and so if I started from scratch I would begin with Armour since I'm more knowledgeable now but since I didn't I'm not really wanting to rock the boat and switch things up. Also not sure of your age but it could be hormonal things starting... est/progesterone balances...
Klanders since i'm a BRCA I did the ooperpherectomy thing last year... I found a great integrative doctor and met with 2 very excellent breast oncologists who all said bio-identical supplementation was just fine... even given my brca status... I imagine the oopherectomy would be easy... just get your hormones figured out before you make the decision. You have to figure out what will work for you and what you are at peace with. I would be a total fruitcake and fit to be tied without my bio-identicals... Some women don't need them... but that's very few in my opinion. My quality of life would be suckville if I didn't have hormones.
Have a great vaca Sprintime!!!
and Barb Barb Barbie babe... what's up with you're daughter's fracture... holy shizzle... you sound like you are handling it with ease... I would be totally spazy about that but I'm so glad she is ok and has given you a very legitamate distraction!!!
Have a great Friday ladies... I'm trying to get back on track.... I think a trip to the store and get back on my fruit and veggies and working in harmony with my Blendtec will help me get my mental game back on..... My boobies still look ugly but I'm trying to let go.... They still have some pitting edema and I think once that works it's way out I'll be feeling better. My drains are getting down there in output... but I know still not time to pull... I'm at 23 on one at 30 on the other.... I hoping by the end of the weekend... maybe monday will be a day to get down to one at least.
Waiting to here from My Cherrie'..... surgery really is a sucka and I'm in no real rush for Stage Deux.
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Oh also wanted to mention.... Even given my high risk for bone health issues.... 20 year thyroid medicated.... hysterectomy... and limited hormone supplementation... a couple weeks ago my bone scan was killer. I can't remember the details but they measure the bone density in a few areas and I was ready for bad news but came back with super excellent results of having the bone health of an early 20 something.... (I'm 41)... So there is the one time in my life that I've been super above average on anything health related.... Go figure.
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Mother - we are pictures of amazing bones. I have been on both Synthroid and Armour. For years on Synthroid alone and watched the handfuls of hair drop. Then there was an Armour shortage and I had to go to Synthroid and Cytomel for a couple of years. At least the hair loss stopped. We were able to change me back to Armour with little problems. My cardiologist is also board cert in Integrative Health and my GYN is all about bio-identicals. They have made life so much better. During the premarin scare several years ago, some doctor yanked me off estradiol (which the old gyn gave me after my hyster/ooph). Spent 5 years schivtzing (lots of hot flashes and night sweats). Love these docs!
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I had a very rough night. The nurse was looking at me and she said I looked miserable. I don't know how I was supposed to feel but I had a migraine for 2 days and it would not let up. Dr Sullivan said I had a hematoma and offered to go back to the OR to drain it. He left it up to me and I said ok. The cause of the hematoma was there was a small vein that had not closed off and was leaking, he closed the leak and the swelling went down. Afterwards I still had the headache and they finally gave me something for it. They also changed my pan meds and I feel sooooo much better. I did a lap around the floor. I can go to the bathroom by myself. Small victories.
Now that my breast is not swollen I can see that they look beautiful. Truly. As rough has this has been when I see that I know it was worth it.
I haven't read the thread, too blurry for that. Just wanted to share with people who understand.0 -
Barb so sorry to hear about your daughters ankle!! I was crazy when my son broke his wrist last year...
I am also BRCA+ and I have had a complete hysterectomy. I have to say that now I am on the right hormone things are much better. I agree my life would be hell without my hormones and my doctors also agrees that having hormones eventhough I am BRCA+ is ok. My symptoms are MASSIVE and it becomes a QOL issue for me.
I need to some help ladies....I found out today that my FMLA for work will start over the first day I took it last year which was June 1st. I thought our company worked with it a year after the day you return from it. So, I scheduled my surgery 6 months out on false info. I didn't want another surgery to begin with, but I have to do this and I was already wrapping my brain around a November surgery (mentally, financially and physically) and hoping to get some relief from pain with the lympedema therapist. Now it turns out I don't have to wait until then....
I know this sounds odd, my I feel like my world just got flipped upside down. I know I don't have to change anything, but then I know I am continuing like this for no reason
I know don't know what advice anyone can give, but I feel like I was just hit in the chest with "good and bad" news if that makes sense...Sorry for the ramble, but I know you ladies understand right?
Chelle
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Sorry for the hiccup Marsha, but so glad you are doing better & that your breasts are beautiful!! It is the small victories and there will be more down the road. Take it easy and rest!!
Hugs!!
Chelle
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Chelle... Anyway to get your surgery in in the next couple of weeks and do the tats later? That would be what I would try.
About the oofrectomy and hormones... this is why I didn't do it. For me, first and foremost I can't add hormones. That would be the WORST thing for my heavily ER positive diagnosis... And I am unsure about the bio-identicals. For me, it just wasn't a straight shot to an easy answer. I am glad you all have figured it out, and perhaps someday I will do it, but not now.
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Chelle...If it were me, I would get it done asap:) Seems like we all get something thrown at us when we have it all planned out! ugh!!
Marsha...Great to hear about the beautiful breasts..but sorry to hear you had to go back in. I love that they take care of things so fast!!!
As far as hormones..I was told to take out my ovaries because my ilc tends to travel there and because I was estrogen and progestrogen positve. I would like to check into bio-identicals but scared. I have noticed that my skin has become very dry since being thrown into menopause at 44:(
Sydgrace..I'll keep you posted on the implant status. I'm on the fence. Waiting for someone to chime in if they have them with a flap:)0 -
Marsha...horray for pretty boobs!!
Jennifer...hang in there yours are gonna be so pretty too (so will mine someday
)Well my friends...looks like I am headed to the Windy City in only 10 days to have my VLNTx....I am in absolute panic/overwhelmed mode right now. The details are not completely worked out but this is what Dr M wants to happen! I would have the scan day before surgery around the 21st or 23rd and surgery either the 22nd or 24th...Should know Sunday. I cannnot breathe. She will also take care of my behind with a much needed aspiration unless I explode before then. No one here wants to do anything for me so I will go to her! Thinking we may drive the 20 hours...2 days and split it up wowowowowow No LE by 2014 OMG!
Maggie-2
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I am at 3 1/2 weeks and I have been wearing the garment and bra 24/7, my question is this....
I had a uni sgap and the bra irritates the upper corner by my armpit and everything looks good except extra swelling (similar to truncal lymphadema). It feel MUCH better when I take the bra off. Any suggestions?? Can I just wear a cami instead of the bra? What is the pros/cons of wearing the bra 24/7??
I appreciate any input)0 -
Well I made it! My surgery was only 2.5 hours along. However, my pain was worse, out of surgery, than either of my times before. Still is. On two Dilaudids every 4 hours. Quite nauseous. Nibbling on crackers and chicken noodle soup.this too shall pass!!
My scar was revised and lowered, hooha pulled up, and a necrosis area in my right breast jet washed.
Can't think. "Talk" to you later.0 -
Marcie.. At 3.5 weeks, you do not need to wear a bra I believe... I would ask, but I think thats right.
Mags... What is VLNTx? Too bad you have to go to Chicago... Thats a long way from FL. Will she not be in SC or NOLA?
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Cherrie...sorry for pain..hooray for success...you did it
Vlntx is the lymph node transfer surgery. I have a date for june 24th in nola but she would like it done in Chicago as she prefers to do this surgery there. Still waiting to hear if she will surgically fix the bum on the June date. Maybe as the are not close to each other on the body
Maggie-20 -
Cherrie hope the pain meds kick in soon!
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Thanks Betsy, took it off and hoping the swelling is better tomorrow
Cherrie, happy you are out, you'll feel better soon.
Mags, hope you are able to get all that you want done in your next surgery.
Hope everybody has a great weekend))0 -
Maggie, the trip is no fun but I hope you will be feeling much better afterwards.
I am rocking out with India.Arie on my ipad tonight. Girl power! Going to get a shower tonight.
The dillaudid makes me trippy, so when I close my eyes I can lucidly dream. I've downloaded some hemisync music for tonight...hope I can have fun with it.0 -
Marcie - I was told by NOLA this week that after 2 weeks of 24/7 I don't have to wear a bra at all. It was nice to be "free" last night. I tend to get funny indentations in my breasts from the pads I wear between my incisions and the bra. Thankfully the dents always pop back out.
Good to hear from you Cherrie. Sorry to hear about the pain. Hope you are comfortable in your hotel room.
Marsha - sorry it's been tough. Glad they were able to get things fixed. Do you have problems frequently with migraines or is it medicine induced? Hopefully they will get you some relief soon.
Mother - swelling should start to go down soon. Mine has in the past couple days.
I was stupid today and went grocery shopping for my daughter's 18th birthday which is Sunday. I should have used one of the riding carts but walked slowly behind a shopping cart instead. It took me 2 hours to get $40 of groceries. Came home and crashed/slept. Won't be doing that again anytime soon. Too hard being bent over.0 -
Kristen.... you are swollen... hence the indentations...That will continue for a while. Oh... rest there girlfriend.
Mags.. I was just yesterday talking about node transfer with my lymphemdema specialist. She said any surgery, including node transfer, messes with the lymph system, and says that to undergo that surgery you should have no other choices, last resort to LE treatment. I said to her (and I don't have LE), that I can see where if my QOL were compromised daily and I had exhausted all other treatments (massage by more than one specialist), then I can see doing it. IMO, I don't think she knew much about the procedure.
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