NOLA in September?
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bdavis, One would think that being at Sloan would guarantee good care...My presence on this thread speaks to the fact that I have found it otherwise! I have a wonderful and caring oncologist there but my surgical care was appalling... "soup to nuts", from the administrators to the docs to the nurses to the hospital. My overnight stay after my BMX was so horrific I can hardly stand to think about it. I was literally begging for help from the nurses- who were nasty and unskilled, ( and never washed their hands unless I demanded they do so). You will be a cog in the MSK wheel. As a teaching hospital it is crawling with trainees of various levels. (Under NO circumstances be a patient at any teaching hospital in July!!) Being one of 60 patients scheduled for the afternoon in the "clinic" where you see your docs is exactly as you would imagine. This is the setting for all pre-op and follow-up appointments. Trying to speak to the doctor on the phone in between appointments is virtually impossible -- they have so many people playing interference you will be lucky to get past the nurse. Once you have started with a PS you are "not allowed", as per MSK "rules" to switch docs -- even for a consultation. If there are problems after your reconstruction, forget about attention to your concerns. I know that I sound like a whacko with an axe to grind. I have high standards. I am a health care professional -- but I am not a whacko!!! I really wish that I had had the presence of mind, though I did not, to have explored my options more thoroughly when I began. I would have been a candidate for nipple and skin sparing mastectomies with immediate reconstruction - would have had one surgery in place of the two (BMX and expander to implant exchange), that I have had so far, and been spared all of the misery of the past 12 months that goes along with the implant process. MSK, or at least my PS, does not do iGAP,sGAP or stacked diep and told me that I would be an A-minus with a diep. The NOLA docs said I can be reconstructed to my current C-ish. Had my MSK PS not removed so much skin in what I had been told was "skin sparing", but was not, I could be reconstructed to my native D. Working in teams, as they do at NOLA also cuts the surgery time in half of what was projected at MSK. That I am unhappy with my implants and headed for fat flap surgery at NOLA is not my main point. Hope this helps. Didn't mean to go on a rant!!0
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no... i appreciate the input
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Hmmmm... I went for a consult to John Hopkins for reconstruction (just one of many places - but the most widely known of all the "big" teaching/university/cancer hospitals)... and I chose NOLA. SO, therefore, I concur with Minnesota - it is not the size of the hospital or city, or proximity (although both involved travel for me). It is the experience of the surgeons and ancillary staff, and the feedback from those who have been there. It was the feedback of a Hopkins patient that stopped me from going there... and it was the feedback of many, many women both here and on the Force website that influenced my decision to go to NOLA. And I have never regretted it since.0
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bdavis, it is a lot and it can be overwhelming. I remember how you are feeling now. You have time to figure this out. You are doing the research. Hopefully, at some point, it will hit you and feel "right" -- whatever it is for you. I got to that point and felt an enourmous peace. It is all so personal and a very personal journey. !!!
About nipples - I had the nipple removed from the cancer side (the onc surgeon recommended that in NOLA - so I went with it) but he left the areola on that side and the entire nipple/areola on the prophylactic side. Dr. D then rebuilt a nipple, and they match nearly perfectly. Rebuilding a nipple out of the areola skin is advantagous. Just wanted to add this to the mix!
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bdavis, I hope I did not overwhelm you with my negativity about Memorial. That was just my experience.. one patient, one BS, one PS and the staff on duty that day. But it really blindsided me, so I wanted you to hear about that end of the spectrum. I think that the "worst case scenario" can be helpful, sometimes, in thinking through your options. It might have gone some other way -- I know others have had different, better, experiences there. What you are going through is so hard -- the deciding what to do; trying to figure out what is best. Where. When. Who. In many ways it is the hardest time. I hope the moment of clarity comes soon!
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I did plenty of research in FL. Nothing sealed the deal for me. We flew to NOLA for a consult with Dr D and I knew I was in the right place.
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I have a question for you knowledgeable NOLA women -- a friend of the family called tonight, she had heard that I was happy with my experience at NOLA (and was actually shocked and intrigued that I flew all the way to New Orleans for treatment. Anyway, she had a lumpectomy a few years back that left that breast significantly smaller than her other breast. She would prefer not to go the implant route. So, the question is - what do you think they'd do for her at NOLA?
Thanks for any input.
Kathryn
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Kathryn - they may be able to supplement that fat with a DIEP or maybe do fat grafting. I would have her call and ask Liz, and she can relay to Dr. D and Dr. S. Or she can also post a question to Dr. D's ask the doctor website where he can just give her general ideas on what might be done. I can't post the link on Mozilla - but maybe someone on here will be using a different browser and can do it for me (please!).
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Thanks Nordy. I passed on all of the info. She's revving to make an appt for a consult. Any idea how long the wait is for surgery for someone who no longer has cancer? Thanks again for the info!
Kathryn
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so if you go to NOLA, do you go for a consult and then return for the surgery or is it all done in the same visit?? Or do they do a consult long distance?? Or should I call them ans ask?
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I am planning to have Diep in NOLA soon. Just got the insurance stuff worked out and should be going for the consult soon. I have some questions:
How do they determine the hospital that will be used for your care?
How long is the stay?
I am having delayed bi-lat surgery how long can i expect to be in surgery?
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Hi everyone. I'm back home and starting to feel more like me again. I had bilateral sgap flaps on 1/25. I went back to surgery on 1/27 with a left flap failure and on 1/29 with a right flap failure. I came out of the last surgery with severe diarrhea from c. difficile colitis. I was in isolation for 6 days. My left flap is awesome. The right flap continued to struggle, but I was too sick to go back to surgery. They think that my low baseline heart rate and low blood pressure and possible hypercoagulability may have led to decrease perfusion to the flap during times of minor exertion. I received blood transfusions, volume expanders, and continuous IV fluids and heparin for most of my stay there. I was scheduled for surgery on 2/8, but the flap turned a corner over the few days prior (dopplers became progressively louder, pinked up, and felt warm). It's still pretty beat up compared to it's beautiful sister. Both Dr. Massey and Dr. Sullivan agreed that I could go home with the flap and was cleared to travel on 2/11.
I was hesitant to post all of this, because I didn't want to dissuade anyone in the future. The thing is that this was a completely elective procedure for me 10 years post mastectomy. This is not what I thought I was getting into, but knew that there was always the risk that it wouldn't go as I had hoped (4 nights in the hospital, 4 nights sightseeing
). But now that I'm passed all that, I'm very happy with the preliminary results and know that I'll be able to manage the rest. I'm fortunate in that Dr. Massey will be back in Utah in 2 weeks. I'm tentatively scheduled for OR wound debridement at that time. I'll have a better sense of how things look after I see her. Depending on how much of the flap survives, I may be returning to NOLA in May for a little diep. In the meantime, my hips are 3 weeks post surgery and coming along nicely, although I have an old lady butt, but I don't really care. I could not have made it through all of this without the support of my partner who stayed with me the entire 17 days that I was in the hospital. Dr. Massey is one of the most compassionate, generous people I have ever met. I felt that I was in very capable hands with both she and Dr. Sullivan, as well as Dr. Treen. The nursing staff are amazing. I have worked in hospitals over the past 30 years, and I've never seen the level of professionalism and dedication that I experienced at St. Charles. They took extraordinary care of me and my partner. I'm not looking forward to additional surgery, but I'm confidant in going back to St.Charles in the future.
Xfitgirl- It was so good to talk to you. Thanks for taking the time to see me before you left. I hope you're doing well.
Kathryn- Thanks for all of the supportive emails. This is the most I've typed since surgery. Hopefully in the days to come, I'll continue to come out of the fog I've been in.
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bdavis - you can do the consult as you wish I believe. I am in Oregon so the first time I went to NOLA was for my consult/pre-op 2 days before my stage 1. I had known it was where I wanted to go, and met with Nordy before hand so I knew what I was getting into, and felt very at ease. I met a lady there at stage 1 from FL that had made the trip to do her consult in person. So it's whatever you feel comfortable with.
ro- as far as the hospital I'm not sure, I made the arrangements with Liz in NOLA and she told me when and where I'd be going. I think the majority are at St Charles. As for the stay, for stage 1 I was in the hospital 4 nights, stage 2 - 1 night. My stage 1 surgery was 4 1/2 hours if I remember right?
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Tracee - so so sorry to hear of your experience, it is always a risk especially with a surgery this major. I'm glad to hear you're on the other side of it and home. I know for me it's nice to hear both sides of the experience.
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((((TRACEE)))) Dang honey, I'm so sorry you had to go through all of that. Please continue to keep us posted! Love and light surround you!
Okay...question for those of you ladies who have had lumps in flaps that turned out to be nothing. I had a small lump last year that was removed and found to be an inclusion cyst. Well my PT felt a 'lump, more flat than round along my scar line and in my pec area last Monday. Right about the same area as the inclusion cyst. I had my ultrasound today an there are several round nodules along my scar line that weren't there last year. They appear benign, as they are round and contained. The radiologist wasn't even sure what to do with me for follow up yet. I'm always such a weird case.
Anyway, what did your lumps look like on an ultrasound? Mine aren't white like fat would be. They are round and black on the inside...almost looking fluid filled, but without the movement when pushed on with the doppler. If that makes any sense.
I'm trying not to freak out. I should be used to this by now. Hell, I should just buy my own damn ultrasound machine.
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Trishia - My little fat lobules were black - they were not white on US. And the radiologist came in and talked to me about them. He said they were normal fat/oily filled cysts from what was once fat necrosis. No worries. I just found a web page and the picture shows fat lobules - totally dark on the inside with well defined borders. Hang in there!
Ro- I think which hospital totally depends on your insurance. I think some insurances won't cover at all at St. Charles, but will at Fairway or one of the other hospitals.
bdavis - The first time I met Dr. Sullivan was the day before my surgery. But I did send pictures prior to going and got feedback from both doctors (although I never new who said what). You can do whatever makes you feel more comfortable, I think.
Tracee... ((((((hugs)))))) I am glad to hear your flaps are coming along. I hope they all start to heal like they should! I am sorry for all you have gone through, but so glad that you were in a place that they could take good care of you!
Okay, so I saw my local PS today (follow up for some mole removals of my daughter's) and she just referred a patient with a failed implant to the Center! I don't know when she is going - and don't know who she is either - but told my PS to go ahead and give her my number and have her call me. That makes me so excited, because my results are just THAT GOOD. I think she is using Dr. D - so now my local PS will get to see first hand the works of both surgeons!
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Tracee, never be afraid to post about flap failures. They happen. They are not your fault. And though we all know it's a risk, we never believe it will happen to us. It is a reality check.
C. diff on top of everything else?? Yuck! I hope you get over that once and for all. I've seen it come back and need retreatment, so don't be surprised. They probably already told you that.
Glad you had amazing care in NOLA. Made a bad situation tolerable, I'm sure.
When will you be going in for surgery in Sandy? I'm there for Stage 2B on Mar 2. Staying overnight in the hospital. We probably will overlap. Anniese will be there briefly, too. Hope we can meet up.
Hang in there!!!
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Tracee, I am so sorry you had to go through all of that!!! If it had to happen I am glad you were in St. Charles as their patient care is so wonderful (as you indicated). This is going to sound a little weird but I feel sorry for Dr. Massey too. All us Marga patients know how compassionate she is and how she must have agonized over your issues. Glad you have turned the corner and feeling better. Oh and - we MUST post the bad and the ugly! Otherwise how can we honestly help other sisters? We all need the truth and the possibilities. (Wish I had more of that before I went down the implant road.)
Kudos to your partner as well. We often forget how hard all this crap is on those who are closest to us.
Cheers and here's to a great week for us all!
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Springtime I'll be at St Chas for stage 2 next week, Feb 23--
if its not too late to add me to your list. I haven't been on this site for awhile so don't know anyone else who will be there at the same time as me, but I'll keep looking. I LOVE my stage I results! I had Dr Massey and De La Croce and received wonderful care.
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Thanks for all of the encouraging words. I'm feeling better and better each day. Technically, I have not had a flap failure yet. So, in most ways, I'm almost where I would have been had I not had all of the complications. I'd love to fast forward the next 3 weeks and really get back to normal.
AnneW- I will be at Alta View on 2/28 to see Dr. Massey and then I'm scheduled for surgery 3/1. She said it would be a 23 hour admission, although I would hope to be able to go home sooner. It sounds like we may overlap. Hopefully, we'll have a chance to meet.
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Tracee - It was so great to meet you too! I'm so sorry for all you are having to go through. As you you know I had a right flap failure. It made this reconstruction journey longer than I had expected but one week after stage 2 now the end of the road seems a little closer. Please take your time healing from all your body has been through before you go back into the OR. I found it took me a long time to get my mojo back after the two surgeries but with good nutrition, rest and time it did.
I feel the same way you do. The situation sucked but the care at St Charles was First class and I knew I was in the right place to deal with unexpected incidents. I fainted in the shower after my stage 2 last week and again everyone was quick to respond to my weird bod doing it's thing again. Low blood pressure seems to be a theme with you and I?
Rest, eat, drink, eat, eat, heal.... A little extra fat won't hurt you so that Dr Massey can do her magic when you are ready to tackle that flap again. I never expected to have DIEP when I signed up for SGAP but I thank God for my weight gain before surgery to be able to replace my flap with a good size new belly one. Old lady butt will be gone and you will have a nice lifted round one and a flat belly to rival any 20 year old :-)
My new bod is now emerging after stage 2. The feeling of bringing cancer full circle and regaining what it took from me is something that has been a little more difficult to achieve than for many but I know worth it in the end.
Take care and please keep us posted. Liz xox.
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Bdavis, there is a "getting started" area on the CRBS web site. And they have an education coordinator, Liz. I think once you submit all the stuff, you can get an appt with her and chat. I just sent in pictures pre surgery, and had phone calls where we went back and forth on what I wanted and could get given I wanted both boobs done and didn't have an enormous amount of fat, plus I had RADS looming.... Some women actually go there ahead of time for a consult to decide. For me, after Mx, Dr. D put in "one step implants with alloderm" to get me through Rads - he didn't want Rads to shink the fat. Then 6 mo after rads done, I went back for Stage 1, and he removed the implants and did the flaps. I think this is not an issue if you have enough fat. They can put more in the "rads side" sort of accounting for shinkage from rads. Hope this helps. Is your head spinning? ha. Mine was. They have seen every scenario there and have encountered them multiple times, so they are great with all your options.
Tracee, HUGS GIRL!!! You hang on to your new boobs! I hope you are past the "danger" point. The longer you can hang on, the more vessles and stuff that develop to support the new girls. Hang in there!!
Rogam, They will work with your insurance to determine the hospital. Call them up and ask!! That will be determined before you go. My Stage 1 stay was 10-11 days. My surgery was 11 hours but I had 4 flaps (2 belly, 2 butt - not enough fat in either one place to do both sides!) Katy will send you an itinerary which shows you getting picked up at the airport, brought to your hotel, picked up for surgery, brough to hospital, etc. You are taken to all your appts and surgeries in a lovely limo. Enjoy the Queen Treatment!
Rogam, call them up and ask these Q's. !! very reasonable Q's to ask about.Foobs, welcome to our little list, glad you are here! I will add you now!
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Wow Tracee, you have certainly been through the wringer. I completely agree with what everyone is saying about that fact that we should definitely post info aboutl complications. Personally, I think this is where the rubber meets the road in terms of showing how good various doctors are at these procedures. Flap failures and other complications HAPPEN. When I was preparing for stage one I found it reassuring to read about how these things were handled.
I hope you can rest a ton and take the time you need to heal.
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Tracee, I'll be in Sandy till Friday the 5th. I have a post-op with Marga at 8:30, then we will fly home. Hope we can meet. I love meeting women who've been through the same surgeries--so much to compare. I'm hoping to see Glostagirl, too, if she's free.
Rest. Heal. Indulge.
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Hi. First, I must thank you for keeping this thread so active and for the wealth of information. I have a question about the realistic amount of time I should take off from work after my Stage I, bilateral mastectomy and HIP flap reconstruction. I work in an emergency department, which means 9-10 hour shifts on my feet at a time. I'm just getting ready to return to work after 7 months off for surgery, chemo and radiation and I'm dreading telling them that I'll be out for surgery this summer but it must be done! So, if you were me, what would you tell them 6 weeks, 8 weeks, longer? I want to be sure that I give myself time to heal and, hopefully, be drain free when I return.
Thanks for your help!
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Toomuch - this is hard to say as we are all so different and our surgery issues can be different as well. My experience was that I was able to return to work in a sit down office environment 3 weeks after for about 3 hours a day. Then over Christmas / New Years I was able to rest more. There was no way that I could have stood for 9+ hours in a highly stressful environment for weeks after that. (Not sure I could do that before!!) It would have been well into the 3rd month for me to feel like I could go that strong for that long. Going into surgery I was in good health and relatively good shape. My surgery and recovery was pretty standard. Anesthesia is a b**tch on the brain too! Hopefully others will chime in but that's my take. Good luck!
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thanks for all the answers
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Journey-thanks for your honest reply. I want to be realistic when speaking with the director. There is nothing harder for scrambling for ED coverage so I would rather ask for too much time off then not enough. I hope some others give me feedback but from what you've said it sounds like I should err on the long side.
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Trishia - I had MRI, not ultrasound so don't know what my lump looked like exactly. It sure sounds like yours is likely to be fat necrosis though. I am praying for that!
Tracee - What a rough time you've had. I hope the worst is over now. I agree that it's good to post your experience here so everyone can be aware of all the possible ways things can go. Good luck with the next surgery!
toomuch - I had bilateral HIP Flap (delayed). I was feeling pretty good three weeks out, but I would say 6 weeks would be the minium time to take off before returning to a job like yours with physical demands. 9 hours is a long shift when you're still regaining strength.
Nordy - love your puppy!!!
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Toomuch - This coming Thursday I will be 4 weeks out from my stage 1 double mastectomy/immediate hip flap reconstruction. Everyone has commented how well I have been doing since the day after surgery. I am in pretty good shape and eat well so I think that helps. Also, my surgery was "only" 7 1/2 hours. I know that's a long time but I think 9 hours seems to be more of the average and some people are under for over 12 hours.
I work for myself and am back to work parttime as of last week - but that is mostly phone calls and computers. Tomorrow I actually have a meeting! Have to find a good shirt to hide the drains. But that said, I have good days and not as good days. Most days I don't take a nap, but some days I doze off at 10AM for an hour. I started driving at the end of last week, but I could have done so a week earlier when I got off the pain meds.
As others have said, it is an individual experience. In a million years I couldn't see standing for 9 hours. Also, having the drains in is also a drain on you physically (they ache and can be cumbersome) and psychologically. I hear the average for drains is 6-8 weeks...although I'm almost down to 30cc a day and then there will be an end in sight!
So, if I were you I'd ask for more time off and then see how you are doing. Can you tell them that if you are feeling better sooner that you'd like to come back at that time? I know it's a hassle to keep taking time off from work and hoping for understanding, but you really do want to nurse yourself back to health and not feel stressed that you have to rush to get better fast.
I hope this helps.
Kathryn
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