NOLA in September?
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Hey SurfaGirl - I will be there with you. My PBM and hip flap is on September 15, so I hope we can visit. I am nervous too but we will get through it like all the other warrior women on this board.
Dana, thanks for caring! It was an amazing relief. I feel so much better with that off my chest (har,har).
Following up on BrandyB's "Stupid Doctor Tricks" story above, here is one from my family. I am BRCA2+, which means that my brother, who hasn't been tested for the mutation, may have a moderately elevated risk of prostate, colon, pancreatic, and male breast cancer. He has some serious mental health issues, so I haven't told him about about my BRCA status (I think it would overwhelm and terrify without any good result) but have told him that because of our family cancer history, he needs to be screened for breast cancer and prostate cancer. He goes to his doctor with this info and asks for a breast exam and his silly doctor tells him there is no such thing as male breast cancer and refuses to do an exam. My brother won't switch doctors, so I have to try to educate this one. Arrgh!!! I may have to give my brother all the BRCA info but am afraid of scaring him. He doesn't process information very well (is afraid of the internet) so it is a hard choice. Stupid doc!
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Beverly... Can you add my stage 1b to the list for Aug 23 with Dr. D... Having a DIEP flap to supplement right side.
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Running... WOW. Unbelievable. My husband had a weird thing with his nipple - his family is loaded with breast and ovarian cancer, but never been tested. (yes, my poor girls! I hope they find a cure by the time they are grown!) Anyway, I called my local breast surgeon's office. They had him in for an US followed by an MD appt. the very NEXT morning (all was negative). Looks like you are going to have to pull up credible studies (such as the Mayo clinic, MD Anderson, Sloan/Kettering - just to name a few) on male BC, just to get his very uneducated/narrow minded doctor to look at it. And it sounds like you are going to have to be your brother's advocate!0
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OMG - Vinnie, I hope you don't mind... but has anyone seen this? It looks so incredibly real. Not that I would want my nipple pierced... or have the illusion of being pierced, but the fact that he can do it! Amazing.
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Hi all-
I'm good. Surgery went well, she only had to use on side, so no stacking. The flap seesm vvery healthy and a good match to the other side, at least for now. Dr. M said Dr. D was in awe of my other nipple, so that's kind of funny.
I've had trouble getting the nausea and pain under control, but they threw the book at me today and it seems be working. I haven't been out bed much because of the pain. Hard to believe I'll ever be able to stand up straight! Appetite is way gone, as usual. But the bf brought me a smoothie.
All the meds have made my head spin and it's hard to read and type, so I may not check in much. Thanks for thinking me!
-Brenda
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Healing thoughts to all in recovery. Thanks to all as following your stories is preparing me for December. I appreciate it. (c:
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Running for Sanity...
Here's one document on Prosate cancer risk for male BRCA carriers
http://www.nature.com/bjc/journal/v98/n2/full/6604132a.html
And another...
http://inthefamily.kartemquin.com/content/men-and-brca
( I just happen to be in this documentary:)!
Please log onto, www.facingourrisk.org for more studies specific to male BRCA carriers...
Let me know if you need some help with this!
Marcia (BRCA uniformative negative)0 -
Thanks so much, Marcia! I will bludgeon my brother's doctor into being better informed. I really appreciate all the information.
Here is a little irony - despite my screen name, I currently can't run because my MRI biopsy on Tuesday is still bleeding just a bit. I went back in today to get it checked to see if there is an infection or hematoma and there isn't, but no running till it heals. Maybe I will call myself "NoRunningNoSanity." Wishing good healing to all!
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My pleasure running!
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Brenda,so glad to hear that you are on the " other side" of surgery!! Just rest and heal and I'll keep my fingers crossed that this time is the charm!
Marcia0 -
Jeskachi, I have been checking here every day hoping for news from you. I am so happy you are on the other side and doing well!! Since this is your second time around, you already know this, but I was amazed at how much better I felt from one day to the next. I am hoping it is the same for you and this second time around is the charm for you. One the DIEP 2011 thread we ended up with a joke about joining the 2hotboobs.com club. I am glad you are part of the club too!
Susan
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@bdavis -- Must be a good omen -- the 23rd is also the day Dr. D does the number on me!!
@jeskachi -- give into the drugs -- sleep is the best healer!! And you need a lot of it the first few days after surgery ... to "burn" off the anesthesia and give your body "coping" time to the (medical term) "insult" it has received thru surgery. All worth it in the end.
Hard to believe that in less that 36 hours I will be in NOLA!!! YES! Got all the office things tied up, got my laptop and research materials, got WAY too many clothes packed, but I am on my way and so ready ... see some of you VERY soon!
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Celtic...yes... See you soon. I am in 208, so stop by... And yes we are sharing Dr D on Tuesday...refresh my memory, are you getting a mx or did you already have that? What time are you at? I have not been told what time he is doing mine yet... Probably working me around you.
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Hi. I have been keeping up to date on all your posts:) I have been busy finalizing my trip to NOLA for my skin graft to cover the open wound where my implant was and in person exam for my flap in December and get the CT angiogram out of the way. I will be flying in on 8/28 with surgery 8/29 in Fairway. If no sign of infection when Dr. M gets in then the skin graft will happen. Worse case there is an infection and my graft will have to wait until later in the week. OPEN WOUNDS=blah. My hope is to be home by 9/4 but she has me staying until 9/7 for worst case scenerio. I hope to check out St. Charles while i am there so i can see this wonderful place i will be having my flap.
take care.!
Michelle
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Running- That's UNBELIEVABLE!!! Who doesn't know about male breast cancer? Has he been living under a rock??
Brenda- I had trouble with pain and pain meds as well. The nurses tried lots of different combos of drugs until they found something that worked. Things dramatically improved for me on day 3. I wish the same for you.
Michelle Celtic- I'm praying for you to have an easy surgery and a speedy recovery.0 -
Michelle... I too have an open wound... That is why they flew me bsck... I had a wound vac procedure thursday so i have a pump attached ro me as i type... And then tuesday i will have another flap surgery... This time diep... Last month i had bmx and hip flaps... And still have my hip drains... It will be an uncomfortable week or three, but i have faith it will all improve. My nurses are amazed at my hip scars... After only a month, they say they are hard to see.
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Bdavis---I HATED my wound vac. I carried it around for 2 1/2 weeks and my local ps told me that i could be done with it since Dr. M is going to do the skin graft on it. Plus it looks really good now...for an open wound. In the hospital at my final skin debrediment it was about the size of a small dinner plate now a month later is is about the size of my hand. I will be back on it for a short time after the graft. How long do you have to wear it? Hopefully a very short time too. Good luck to you!!!!
Michelle
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Just wanted to wish all you ladies smooth sailings and speedy recoveries from here on out! You are all amazingly strong and resilient!!
I had my annual skin check this past week. I had a new PA checking me out. We were talking about my scarring and the increased risk of squamous cell carcinoma with keloid/hypertrophic scarring (which I'm SO lucky to have!). Anyway, she looked at my breast scars and thought I had a reduction...LOL! I was like NO, read my file, I have had breast cancer, these are not reduced breasts, they are reconstructed breasts! Just another testament to the artistry of work these docs do!
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Michelle... My wound was the size of an egg, but after debredment, it is larger... I have the vac until tuesday and then will have the diep surgery... So when i go home on the 30th, with everything closed up and a tummy tuck to boot.
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A question for the pros here - what do you think about the mastectomy camisole tops? Are they necessary or useful? Has anyone bought one they liked, or are they unnecessary? I will have hip flap reconstruction, so will have drains for a scary long time. I will appreciate any advice on this.
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RunningforSanity- The hospital put me in one after my MX and Dr. S did my hip flaps and i have been sleeping in mine and wearing it alsoaround the house it gives me alot of support and doesn't smash them down. But I was flat or con cave for over a year, so my breast are heavy now and I like to keep them in place at night . So I like mine but i did't use it for the drains because boob drains got pulled before I left Nola.
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RUNNING: you will "wake up" after your surgery in a stretchy black bra and a drain pouch on an elastic band around your waist. (And not anything else, as I recall! I was a little surprised when I looked under my sheets. Maybe they forgot my hospital gown, but I assume it was so they could easily peek at my tummy!!) You will be in the bra 24/7 for several weeks. They'll give you at least two and they dry quickly overnight. They are actually pretty comfy, tho high cut with wide straps and show under anything skimpy. You will also get a few drain pouches and, personally, I have always preferred having my drains down around my waist/hips than in a cami. If you don't like the pouches you can hang your drains directly on the elastic band from the little loop each has on top. That's how I wore mine in the shower. I never liked the idea of stringing them around my neck as is often recommended, as then you have yukky drain bulbs very close to your breast incisions. If you've got a few you can switch to a dry one after you shower. They also sell a variety of pouches/ belts on the Internet, but the Center really provides everything you need. Even after you get home, if you need more garments or dressings or WHATEVER, they send them right out. Dr. D's DIEP patients start wearing an abdominal binder or DOM ( above waist and down to knee, black, crotchless compression garment) right after surgery, I believe. Dr. S doesn't have you start wearing compression until all of your drains are out. I had a DIEP, but I'm thinking that with hip flaps, no compression. If you wear a top that is longish -- hip length-- it will cover the drains fine. Hope this helps:)
TRICIA: where are your scars? That's amazing that she couldn't tell!!
Hello to all recovering tonight at SCSH and beyond... Denouement, Betsy, Jeskachi ....thinking of you all.0 -
Oops, I thought everyone got that black bra! Interesting you got a cami, Lesliet... wonder why...
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With hip flaps you wake up in the black compression garment... You get two and wear them 24/7 until one week past drains... So like 7 weeks. You do get used to it, but it was tight and hot at first.
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Running... Also, i bought long loose yoga shorts at target, so soft wide waist band and down to knees and they have been perfect over the black compression... In addition, i don't use the drain pouch except for sleeping, and prefer a fanny pack or over the shoulder pouch... It makes my clothes fit better than the pouch under my shirt...
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Betsy-Sorry I didn't make it back to the center to see you again but it was nice meeting you on Thursday. I hope that your surgery on Tuesday goes smoothly and that the recovery is easy! You are due for a break!
I finally arrived home today after 3 1/2 weeks in NOLA. My daughter left for college while I was gone and oh my, what a mess. I will have to shut the door for now but I have a lot of organizing/cleaning ahead of me. Just unpacking was a challenge. It seems my closet bar is higher then what I had in NOLA. I really had to stretch to hang something up. I wasn't given any limitations about stretching my arms over my head but it didn't feel quite right. Does anyone know if there are any recommendations or rules about this?
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Jerusha - I got my cami aftermy MX not after hip flaps I was in a bra also but my cami holds things better than the bra so at night now i sleep in the cami. I went year and half with no breast.So the cami is like a sleep bra built in and it doesn't twist at night. Dr S also puts you in the black girdle.
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TOOMUCH, we are in the throes of packing here at my house. My twin daughters leave Wednesday for a pre-orientation wilderness trip, the next week for college, and everything remaining(after 18 years in their rooms) into boxes since we are moving to a new house shortly after they go. Three different packing projects, times two. It is packing MADNESS here. You said it perfectly...OH MY, WHAT A MESS!
I was told that I could and should lift my arms over my head for washing my hair, stuff like that, starting right away -- but not to reach up high into cupboards, closets, etc. -- time frame not very specific for that, but weeks, as I recall. It was more than a month before I felt comfortable with a big stretch, but when I was ready I realized my range of motion had gotten very restricted on one side, and then I needed PT! Kind of a fine line, but I was definitely told not to stretch at first.0 -
Thanks so much for all the advice on camis, bras, and drains. I love the expertise and generousity of your wisdom! I think I will forgo buying the cami and shop for yoga pants and bring along a fanny pack instead. I am a little afraid of the compression garment, mainly because I had an oophorectomy in May and am having warm/hot flashes, so I am sure that will be tons of fun. It is all temporary, however!
Betsy, your spirits are amazing. I hope they are taking fabulous care of you and cooking you the most wonderful food. Thanks for sharing your hip flap expertise.
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Hey, gang, in Newark (from Buffalo) and heading into NOLA in about an hour. Am dog-tired from preparations, but looking forward to this next step in healing. Especially since I will LOSE this rock hard tissue expander!!!
@Bdavis. Had mastectomy TE inserted ... then oroginal surgeon in NYC booked! I am REALLY glad the SOB did, because NOW I get to be in NOLA!. My call on Tuesday is 6 AM for 7AM surgery. Will be at the Hospital and Center tomorrow for pre-ops, so will be sure to get to room 208!
@Running. I did get 2 mastectomy camis -- one zipped up the front and the other pulled up from your feet. LOVED the zipper one -- nice enough to be a top in hot NOLA! Other was a little tough to pull up one-armed!
Calling for my flight ... be among you sooon!!!
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