NOLA in September?
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What do you need a local doc for, just incase?
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Hmm . . . Spring, did you have a local doc here as a helper doc? I have not had any luck so far with my internist or my breast surgeon. Am a little leery of asking my former PS as I feel like he will take it personally that I am not happy with his work. Which couldn't be further from the case - it looks good as far as implants go, but the implants themselves are the problem. Surely not his fault. If he did DIEP, I would go to him without hesitation. Anyway, I feel like I will get shot down again, and they haven't told me in NOLA that I should look for someone, though I take it that is the case.
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Dr. Massey is a little stricter with the helper doc requirement. It's a good idea to have someone, for anyone going out of town, but she insists that you have one. I don't think the other docs at NOLA require it.
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Today I saw Dr Allen in NYC and we talked about this exact thing... and he suggested asking the local BS.. but I would for sure ask the PS... He did work on you so you have some right to ask... and if you truley didn't like him or think he may feel insulted just point out that is the opposite and that is why you are asking for him as your back up ... and he should feel complimented.
So... went to NYC for a consult since it was easy to do... and I have my consult in NOLA in May, so I feel I am getting prepped and will then make a decision on which to do.... My ONLY concern about going to NOLA is the distance and I have Dr Allen around the corner... what to do... And Dr Allen proposed a one stage DIEP, nipple sparing on both sides and only Stage 2 if I wanted it... Comments?
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My understanding is that Dr Massey requires a helper doctor, but not the NOLA docs. I had my surgery there and was never asked to find one. They have women remove their own drains and I think Dr Massey has you go to your helper dr for that (I think).
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I used my GP for any issues I might have post surgery. I had him me out about 2 weeks post op just to make sure he didn't see anything I should worry about because I was going to travel out of town for a while. If all you need are drains removed a GP should be able to handle that. They can also recognize infection and other issues.
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You shouldn't be required, what if you can't find one? It should be up to the patient. Maybe for drains or what not you'd be forced to do urgent care?
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Amy, I didn't need a helper doc, though my BS offered to do it when I told her I was going out of state for recon. My husband took my drains out (very simple and they give you all the stuff you need, a little kit). I took my own out after the first time. If anything more concerning happens, the center will write a script for you to go to a hospital (like if you need ultrasound or whatever).
BDavis, how interesting. Did Dr. Allen think he could get enough for both breasts just from a DIEP? I have heard the NOLA docs also feel you don't necessarily need a stage 2 if you have nipple sparing, like in PBM. I think after you have your consult in NOLA you will have more information to make a decison. Go with your gut!
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As for pulling the drains - you don't feel a thing and the NOLA nurses will talk you through them. Anyone that's pulled their own will tell you that there are no regrets -- it was easy as pie. I needed someone in LA to drain my seromas (I had hip flaps and it's very common with them). I found a PS nearby who had no issues aspirating me. She was very curious about my breasts so I showed them to her...she seemed a bit disappointed and asked if I was happy. I think she felt they were too small...right now they're a large B but I'm going for a C (if I can) in stage 2. That said, the reason NOLA doesn't require a local back-up doctor is that MOST people don't need them.
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I called Dr Allens office, and was not impressed. I found them to be pretty rude and were not as accomodating with the billing, insurance, etc... I was also told I was too heavy and had to lose weight before he could perform the surgery. I know other PS make this demand. I was so glad with NOLA there were none of these hitches, everything was a breeze, I can't think of 1 problem I had going there.
Also people that worry about going the distance and traveling. It's so easy, Katie can make all the reservations for you. All you have to do is show up. I came from Oregon to NOLA, it does make for a long day. But they can have a wheelchair ready for you at the gate if need be. I did after stage 1 just incase but I didn't need it. The nurses are so great and call and follow up a lot after you get home to check on the drains and the output and advise on pulling them etc... A couple of times I did have to call the after hours with a question and was so impressed that Dr S called me back himself.
As for my drains, the hip ones were a little tricky for me to reach and see with the big new girls
So I had a friend take them out, after stage 2 I had my grandma take the one out. It's totally painless and such a great feeling to get them out. I did go into my local BS, she wanted to see the goods. She loved them, and asked if she could just double check my incisions while I was there. One piece of stitches was still under the skin and sticking out a little, she pulled it out for me, no big deal though. 0 -
Springtime... Dr Allen said that even though I am a C+, with the right BS doing the MX, not all apparent tissue is removed... he said that some BS remove the subcutaneous layer which isn't necessary and makes the blood flow worse... so if your breasts are 650 is size, they may only remove 450 in breast tissue, making the DIEP easier if you don't have a ton of fat.
I am also meeting next week with my BS to discuss all of this... and the nipple sparing on both sides... so I was told I had enough fat for both breast and would take about 6 hours nipple sparing and no dog ears on belly... he said my belly would be a bit tighter than some because I don't have TONS of fat.
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bdavis--you might have trouble getting a subcutaneous mastectomy covered by your insurance, you should check your provider's policy on that.
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What do you mean??
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It leaves more tissue behind so it may be seen as not enough of a risk reduction to justify the mastectomy. I don't really know the exact reasoning, but I know my provider (BCBSIL) states that it's experimental and won't cover it. It's different than "skin-sparing simple mastectomy". It may just be a matter of semantics, but if you go that route you would want to get the procedure code approved by your insurance sooner rather than later.
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Yes... I see... Well... all I had was a consult... one more in NOLA so I will see hat they say and go from there... I am in favor of eliminating cancer risk first and foremost... and this is a big reason why I am eeing my BS who is all about cancer prevention as I am ... and I asked the doctor about the nipple on the cancer side and what he ould do if my local BS wants the nipple gone... and he said he would do it if that's what I want... but what he also explained was that many BS will take EVERYTHING including the fat, he has his BS NOT take the fat, only the breast tissue.
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bdavis, you sure are doing a lot of research. That's great. I guess I didn't. On some things I wish I had was the lymph node disection as I think it could have been done differently or hoped to have less of the LE, but who knows now I could of had it either way. I didn't ask hardly any questions before my MX or my recon, just trusted them and went with my gut. That and ALL the amazing ladies here that are so kind and helpful. You're going to NOLA just for a consult?
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Jaimie, I totally missed your offer of computer help and just came across it by accident--sorry! I've received lots of offers of help, but the site uses a proprietary language (not HTML) and most programmers aren't experienced with it. This design company is a recommended Yahoo partner, and I'm going to contact my rep at Yahoo and give her some feedback. I just want some sleep, and when I am stressed I stay up way too late.
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Dragonfly... Yes, I am going to NOLA in mid-May for a consult... I am a face to face person (or breast to face) Sounds bad, huh?? Anyway, yes, I am seeing Dr D on May 16.
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Well it's pretty reassuring to hear that NOLA won't require a helper doc here. I wondered why they hadn't said anything. I like the idea of having someone here just in case, so may go see my former PS, and as was suggested, if he thinks I didn't like his work, I will be sure to tell him that it is the reason I am there. He honestly was a kind and compassionate man. He really seemed to feel so bad when he told me I had cancer. It was so unexpected for both of us! And I literaly fell on the floor - I was a week out from my reduction surgery and wasn't feeling all that great to begin with. It was late in the day when he saw me for my re-check, and I was just beside myself. He called the breast surgeon's office, she had gone home for the day, and he called her pager and asked her to come back to her office to speak with me, which she did! She then called the onc that they often worked with (though ultimately I went with someone else) and asked him to see me first thing in the morning, though he had a full schedule. Without even consulting his office staff, he just agreed to see me. (By now it was nearly 7 in the evening - he was home as well) As you can see, I was fortunate to have very kind and compassionate doctors around me at the time. So anyway, I may go ahead and call the PS just in case. I can imagine that my husband will be fine helping me pull the drains, and I have a friend who was a doctor overseas - she is foreign and not licensed here. But she can certainly lend a hand.
Any word from K9Kim re. how her surgeries went?
amym - glutton for punishment, huh? Can't believe any doc would think or say that! But it did make me laugh! Do they think we just want to have surgery for the fun of it?! Like that woman in the news this week who had 52 elective cosmetic sugeries?? I can't even think of 52 things I would want to have done! I see that you went to Haiti. What kind of work did you do there? I hope it was a wonderful experience for you. I like what you said about how being happy with your reconstruction now has helped you to move on with things. I don't think I have been in the full swing of life since my diagnosis, that is my own doing/weakness, but I am very hopeful that this will help. It's reassuring to hear you are so pleased with the DIEP after having had implants. I will be so glad to have them gone. I was worried that having them would make the surgery harder, but Liz at NOLA assures me that they deal with this all the time. And just look at how many women on this thread have had implants first.
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kaitsmom - implants, no implants, ruptured implants, failed implants... it doesn't matter. The docs at NOLA have dealt with it all. Honestly. You are in the best of hands.
BDavis - I would question the subcutaneous mastectomy as well. I researched when I initially had my left (prophylactic nipple areola sparing) mastectomy. I wanted AS MUCH breast tissue as possible removed, and if that meant taking some of the fat with it, then so be it. I researched and the subcutaneous method, the research that I found anyway - showed that it left WAY too much breast tissue. My doc at the time (in Texas) assured me that she took as much as possible. The surgery was successful as far as the mastectomy went, but when my implants failed, I had the BS here finish off the mastectomy. Again, another surgery that could have been avoided if I had just gone to NOLA to begin with. I had also contacted Dr. Allen's office. I can't speak for him, at all... but the numbers they gave me for out of pocket were astronomical. There was NO WAY I could afford to go there. Please just wait until after you have consulted with Dr. D. The travel is really NOT a big deal. I am telling you... I traveled from Oregon as well - easy peasy. I wish I had done it instead of implants - I KNEW about them, I thought it was too much to travel... I had a small child... this time I had 2 small children, but I decided that last time I tried to take the easy route and it ended up being the wrong one. This time, I was determined to take the RIGHT route. Just saying... do not be intimidated by travel. And as far as having a stage 2... well, I believe that most of us really did not mind traveling for a stage 2 and the benefits certainly outweighed the inconvenience.
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PS - My oncologist DID ask if he could touch them!!! Now he touches them all the time... LOLOLOLOL! Just kidding - well, he touches them every 6 months when I go in for my follow ups - checks the scar lines and checks for lumps.
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I went to an oncologist for the first time in 10 years today and he called my reconstruction results 'exquisite...the symmetry and drape are outstanding and the areolas are so real looking". He wrote the down Dr. Sullivan's name and the name of the Center and I bringing them some pamphlets I have.
I had implants for 16 LONG and HORRIFIC years. It makes me laugh when I read about people discouraging someone from a DIEP or being worried about the 'long, painful recovery'. The expansion process after radiation was WAY MORE PAINFUL than my DIEP. And WAY MORE time consuming!!! OMG! Seriously. And I did it twice!!
Recovery from the DIEP was really not painful for me (except for that one damn drain site), but my energy level was shot for 4 weeks for sure. You just have to give your body time to rest. When I went to NOLA, I hated to fly. I have to take valium when I fly. But the travel wasn't as hard as I thought it would be. I had gone the 'easier' and 'local' route before. There was no way I was settling again due to convience. What's funny, is after 4 trips to NOLA in a year (I went down for a cruise and then saw Dr. S for a consult before my surgery), I don't hate to fly near as much any more. I still get nervous, but I don't have the dread I used to. I guess after flying with drain tubes and post surgical fatigue and discomfort, flying when you feel great is a piece of cake!!
As I've said many times before...going to NOLA was BY FAR the best decision I have ever made regarding my health and happiness. They truly restored me. Every singe day I am thankful for the gift they gave me....which is ME back.
On another happy note...the thigh lumps appear to be nothing more than lipomas. YAY!
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Hello Ladies
I had my Stage 2 and thyroidectomy yesterday and all went very well. It is 100 times easier than Stage 1!! I was told that before hand, but now have 1st hand knowledge of its truth!! ;-)
My thyroid surgeon is stopping by today & he will determine whether I can be discharged today or not. My calcium level is still a little low, so he may keep me until it comes up to normal range.
Bev, I asked Dr D about his shoes before surgery yesterday & he said which ones?! Lol He has quite a few designer ones. He did tell me a story about a pair he bought that were being shipped to him from Italy and they were caught up in customs for months. I'll take a pic of whatever he's wearing at my post op to share with you guys! ;-)
Warm thoughts & lots of prayers for a speedy recovery for all the upcoming ladies! As you've been told numerous times already... You are truly in the best of hands!! I don't think there are words enough to really explain it, until you experience it for yourself!
Love you guys!!!
Kim :-)0 -
Been a while since I have caught up with everyone. I always feel so much better about my journey when I read all the post.
I have been really busy with work and boob's.lol I had to have a sonogram last week and it ended up being fat necrosis. I felt quite sure that was the case but just wanted it checked out with my ONC. He seemed much more open to my new breast this time. He said he was very impressed with how good they look now. I am still dealing with nerve/scar tissue pain on the BC side. It is still better than when I had implants. No regrets on going to NOLA at all. My GP has put me on Cymbalta anti depressant in hopes that it will help with some of the nerve pain I am having. I told him I would try it as long as it did not make me gain weight. Don't want to mess up my new flat stomach.
Yesterday I finally got to put my new breast to the test. A friend stopped by work with her new baby and I got to hold it. With my implants being so hard and high I could not hold a baby comfortably before. This time it felt just wonderful. I had to laugh when she kept rooting around like she was wanting to nurse. I did send my son and his new wife a picture of me holding her to let them know my breast past the baby test so they could get going with the grandchild.
This weekend is A Taste of Spring Wine Tasting benefiting ACS. This is the third year I have chaired this event to raise money. This year I would like to dedicate this event to all of you wonderful, courageous women on this thread. You have been so important to my recovery and an inspiration to all.
Next week is my 6 month liver scan. Does it ever end?
My middle son is moving back to Florida this month and I thought for a going away gift I would have my implants covered with cloth so he can take them with him to play Corn Hole. He would have his own special bags to toss.
Good luck and speedy recovery to all getting ready for their surguries and decisions to be made. Is it a hard recovery. Yep! Is it worth it? Hell Yes!!!!!!
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Trishisa and mwlindastn - every time I read something like your posts, it just reaffirms my decision. Especially your's, Trishia, 16 years with implants!! NO WAY do I want to be a few more years down the road and look back and say, "Well, I wish I had done this in 2011 when all those wonderful ladies were so encouraging." 4 years is long enough with these buggers! Out, out damn implants! Now I am becoming convinced that, in addition to the pain they are causing in my chest and underarm, my body is just rebelling against them and telling me they need to go. Maybe all in my head, but something's not right . . .
melindastn - love the idea of having them covered and playing Corn Hole with them. My daughter and her friends play whenever she is home from England and we have a "keg" in the back yard. I wonder if her friends would freak a little though! (About the keg - we are long past the age of throwing keg parties, but my daughter's boyfriend is English, and they do not do kegs in England. We all thought it was a little sad that he went through university without ever going to a keg party! So when he first came for a visit, we had a keg party for him. He and his English friends are all a bit fascinated with the American style of drinking - different than the pub culture, for sure, and they especially like the red plastic cups! Go figure! Anyway, the keg party is now a tradition when they come to town!)
Sorry to digress - I often do . . .
Nordy - love that pic of you with the kids! How beautiful!
K9Kim - so happy to hear your surgery went well. I hope they only keep you in as long as you want to be! And then I hope you can get out and enjoy some time in NOLA. I am new to this thread . . . what's this about Dr. D's shoes??? Oh wow, I love when men wear good shoes . . . My hubby just does not get it. Thinks it's fine to wear white sneakers everywhere! At age 53! Drives me mad . . . but I am working on him. Have upgraded him to a pair of boots, and a pair of suede walking shoes that look sort of European (he only agreed because they were actually New Balance).
Wishing everyone a beautiful day!
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Dr. D's shoes are SEXY!!!
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bdavis - Dr. Allen is a short car ride away from me, but I went to NOLA. The traveling was a breeze--don't let that influence your decision. Go to the place that will give you the best results. It's good that you are able to have a face-to-face consult. You will love NOLA and Dr. D. He is THE BEST!
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Re: the issue of "subcutaneous mastectomy." I checked into this a bit because when I went for my consult with Dr D last year he told me that the reason I had DD breasts with not too big implants was because my surgeon had left behind a nice layer of subcutaneous tissue (ie fat:). This sounded concerning when he said it but he reassured me that the important part if taking out all the BREAST tissue, in other words the ducts and lobules. I later read a post on his "ask the doctor site" that I thought explained this well. What was earlier called a subcutaneous mastectomy has morphed into nipple sparing amd skin sparing mastectomy, and these are different. But my take on it is this is separate from whether or not the surgeon leaves behind a layer of fat during the mastectomy. I'd be really interested to hear what anyone knows about this. Here is the link to that post:
http://members.boardhost.com/plastic/msg/1266595432.html
Kaitsmom, I am a midwife and so did midwifery when I volunteered in Haiti. It was a great trip for many reasons ( and I am already planning to go again) but was particularly significant for me because I had to cancel an earlier planned trip when I was diagnosed with BC. One of the many things they so get in NOLA is how much getting your body back, so to speak, helps in moving on from the cancer.
Oh, and one other thing -- Compared to many others I didn't have big problems with the implants (besides hating how they looked and felt!) but an unexpected benefit was almost complete relief from numbness I would get in both hands and forearms whenever my arms were bent. None of the doctors had a clue about what cause this, but i am now convinced it was the implants under the pectoral muscles messing things up!
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I am going to separate the subcutaneous layer of fat and the nipple sparing... Dr Allen explained to me that for better results (blood flow) leaving a layer of fat was better and requires less tissue to be transplanted as well... The nipple sparing was a separae conversation... Of course I will discuss all this again with Dr D in May.
Nordy... just to restate, I am very much leaning toward surgery in NOLA in July and have my date... I went to Dr Allen for a consult and liked him and what he said, and he is a viable option, but I haven't decided on anything 100%. I am fortuante that both Dr Allen and NOLA are both 100% covered with no out of pocket expenses. A couple of things he said I didn't care for so much, like he really wants nipple sparing.. not sure how I feel about that... and that he can do it all in stage I... I kind of want revisions and want my doctor to want perfection... I have decided to go this route which I know will be a bigger effort, recovery and committment than just getting rads and calling it a day... and I am choosing this route for the long term benefit, so I want it done right now and am willing to dedicated the time.
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Uh oh, melindastn, am I going to fall in love?? lol I love men's shoes! And women's shoes, too, thought sadly my feet have not aged well, and usually all I can do is look at the pretty ones, or buy them for my daughter, which helps a little!
amym, doing the midwifery there must have been amazing! I worked in women's health care for 16 years, and have often thought about going down there to do some volunteer work. I have no idea why I have lost so much of my sense of adventure since my DX and MX. I love to travel, and still have done alot these past few years, but have been wanting to backpack and travel a little more rough, and have felt like I couldn't do that. I know it's weird, but I never used to be modest about my body, and now I don't even feel comfortable having a massage, even though I know a good massage therapist is used to seeing this kind of thing. And I surely haven't felt like I would sleep in a hostel with strangers. . . I miss that "me" . . . So glad you finally got to make your trip. I can see why it meant so much to you.
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