NOLA in September?
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I have a question about weight loss after Stage 1. I'm keen to lose about 25lb that have crept on during the last few years and I've managed to lose weight in the past with exercise and healthy eating. I understand that my new DIEP breast will shrink too if I lose weight. Or maybe with my breasts being made of tummy fat they will stubbornly hang in there as I diet and exercise. I never seemed to be able to get rid of the spare tire before. Anyway, when is the best time to try an lose the weight. Should I try to slim down before stage 2 or after?
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Mine are cold…not cold feeling on my chest but cold to the touch. It's more of a thing for my husband than me. Although truth be told, after I stopped breastfeeding for almost 3 solid years, I didn't let him near them much anymore. Two different babies, btw.
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Ok, I have been reading Ask the Doctor and I am getting interested in this NOLA thing. Can I ask you some questions? Is this considered one of the top breast reconstruction centers in the US? Are most people having a mx first and then traveling there for recon? Can you ladies tell me where you are traveling from? I have been struggling to find a PS I feel comfortable with in the Chicago area. Before anyone tells me Dr. Massey works in Chicago, just know she isn't here until December. Did any of you have implants after the mx and then have the flap?
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Trvler... I traveled from NJ to NOLA for my surgery. Most people, and for best results, have the MX and recon all in one surgery. Some people who have had a MX already, and perhaps implants that then had issues, go to NOLA just for the flap surgery. But the docs in NOLA do it all in one surgery. First the BS does the MX and then 2 PS come in and harvest the flaps. The CRBS is considered the top (or one of the top) facilities and doctors for this type of reconstruction. And most importantly have a ton of experience. Thus if there is a problem, which can happen anywhere, they have a bag of tricks up their sleeves to make it all right.
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Neta.... Always best to try and lose weight before stage II... not always possible. I have had a few stage II surgeries, and lost a little more weight after each... And have lost about 15 pounds since my last revision... Yes, boobs shrunk, but its ok.
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Ok, so MX and recon at the same time? How is aftercare handled? How long before you can return home, etc?
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You can go home one week post surgery. So let's say you have surgery on a Thursday, you'll be in the hospital for 4-5 days, then to a local hotel for a couple of days. Your final post op appt would be the following Thursday, so you could leave Thursday pm or anytime after. Once home, you'll need help with some things as you won't be able to lift more than 10 pounds for 6 weeks... so cooking, cleaning etc is a chore. But I spent my days at home with no one here... You will also be EXHAUSTED for a couple of weeks... Just showering is an event. But it passes.
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I was there about 10 days I think - I know it was not more than 2 weeks, I think only 10 days. They will tell you how long as soon as they decide on the procedure they will be doing. My sister came with me, and we stayed at Hope Lodge which was a Godsend (american Cancer Society) and free. I did it during the summer when she was off from school since she teaches and it was the only time she was free. My sister was incredible and helped get us food from the local grocery which we cooked at the Hope Lodge (nothing major since I got meals in the hospital and wasn't in the Lodge for long after the hospital stay), and my husband took vacation time at home with the kids, so they all made it work.
The flight was long from Boston but I was well enough going home (though I made sure I got a direct flight home to get home asap). The doctors will give you a note to get you through the security at the airport since you may have drains attached (sounds awful, but the nurses do a great job giving you instructions on using beta dine swabs to prevent infection). Some drains were taken out down there, I think, and the others are taken out soon after you return home. I had no infections. And they didn't use steri strips, so I had no rash like I had up here after biopsies (apparently I, like lots of people, am allergic to Steri strips). Really there were no complications, I was so grateful for those wonderful nurses!
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how long does it take to get on the schedule and do you need a separate pre op visit?
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Those with active cancer get first priority. You should contact the Center and see what they say. They are very helpful and will answer all your questions. I traveled from Ohio, and I am thankful every day that I found them and chose to travel to get the best care and a wonderful outcome.
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The pre-op visit did not involve a separate trip, it was done at the beginning of the one trip. I only made one trip there - if it involved more trips, I could not have done it since I have kids at home. I agree, the Center is very helpful answering questions, as well as this site - I had lots of questions since it is a huge decision, but it was the best decision I ever made. They will let you know their schedule. The biggest thing was getting my insurance questions answered to make sure everything was covered since there are tests down there, appointments, and surgery. Just make sure you know what your coverage is, and this involved many phone calls with the insurance company and a few to Louisianna prior to scheduling the trip.
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Trvler, I came all the way from WA. My husband and I both feel it was the best decision we made to go to NOLA. They were amazing through the whole process and made everything so easy. I truly believe they are the best.
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Surgery on 9/24/14 and swelly belly continues! I wear Spanx every day. A Pilates Barre class on Thursday set it off. Ab is hard as a rock but in a bad way. Help!!! please
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Mary - swelly belly can take a year or more to go away. Patience! If ab is rock hard and not in a good way - call your PS. When will you do Stage 2. Things change after that.
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I'm still working on scheduling Stage II. Nothing really urgent for the Stage II. How will the swelly belly go away at that time?
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It won't go away at Stage 2, but you may figure out why your ab is rock hard in a bad way. Swelly belly took me more than a year to get rid of on a daily basis.
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Almost two years out and at some point swelly belly finally went away. NOLA is amazing in all ways - from the staff, doctors, hospital and the towncar or limo that will take you from airport to hotel to hospital. I had BMX with immediate reconstruction and I recommend that for everyone if possible. I'm from Michigan - no one here would do DIEP for me because they said I was too thin, but Dr. Sullivan managed to find enough fat to give me nice breasts. Dr. Stolier wasn't available so Dr. Gray did the mastectomy. I had cancer in both breasts. I thought doing the BMX would take care of the cancer but unfortunately the cancer is back in my left breast. It's impossible to get every last cell so I guess the wrong cell was left behind. So I'm going to be one of the few women who have a mastectomy and THEN a lumpectomy. Never dreamed that would happen.
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klanders, I'm so sorry you are going through this again. Are you having the Lx done locally or are you going back to NOLA? Was it in the same area or in an area where it might have been difficult to remove all of the breast tissue? When is your surgery? I will be thinking of you and I'm sending you gentle hugs.
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Hi LA, I've sent all my images to NOLA but I'm having trouble getting a response back. NOLA is the top at what they do - particularly the reconstruction and every time my oncologist looks at me she is just in awe because you really can't tell from looking that I've had a BMX. I won't be able to have reconstruction right away this time because I'll need radiation, so I might end up back there at some point to fix this latest mess, but I'll have to figure out the financial end first since they are out of network.
When I had my BMX Dr. Gray did not get clean margins in the left breast. I had to have an additional surgery before I left NOLA and the 2nd time it came back with clean margins. However, my 2 new tumors are close to the incision that Dr. Gray made when he went back in.
I consulted with two local (Michigan) docs and their approaches to this recurrence were very different from each other. And neither had ever done a lumpectomy on a DIEP mastectomy. Last time I had consulted with MD Anderson before ending up at NOLA, so I've decided to go back to Houston for my surgery. I'm just waiting to hear the dates. I hate having the cost of flights/hotels to add to the stress but I'm feeling better about it. I really don't want a 3rd recurrence. I'm very fortunate and thankful that it does not appear to have metastasized.
We just can't ever let our guard down. I've read forums that have said no more breast rechecks are necessary after BMX and that's just not true. We need to be continuing to do breast exams and follow up. I found these two lumps myself. And they are both still very small - under 1cm.
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Kladers- they are probably not responding (nola) because you have not had your lumpectomy- they don't know what they need to fix.0 -
Klanders, I hear from a lot of ladies on this thread that it takes longer to hear from Nola these days. They are probably very busy. If it's possible, see if you can get Dr Stolier to weigh in. He's been at this a long time.
I hate that you have these extra costs, but it's so worth it to be treated by the best. Bravo to you for self-exam! The lack of post-flap monitoring is so concerning. I hope that your reconstruction soldiers through this treatment, but more than anything I send the best hopes that this treatment is effective and the last needed! Big hugs to you!
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klanders I had hip flap done and then needed a lumpectomy due to a recurrence. I would be happy to tell you about my experience if you want. I didn't loose my flap band I had radiation after chemo and the lumpectomy. My flap so far knocking hard on wood needs no repairs.
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Also having a long wait hearing from nola.
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You kind of have to bug them. I called today and they didn't call me back. But I called again and they came to the phone. I had a long talk with one of them today about my newly diagnosed results today they imply my cancer is significantly bigger and in more places than originally thought.
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I'm so sorry to hear that, trvler. Have you made any progress on setting a surgery date?
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KLanders, I'm sorry to hear your news. Trvlr, find the best breast surgeon, get the best treatment. That has to be the number one priority. If coordinating with NOLA takes to long maybe get your Mxsurgery and treatment done locally and have them put expanders in during your mastectomy to burn no bridges for reconstructio even if you end up needing radiation
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I have been in touch with NOLA today. Dr Stolier wants me to have chemo before surgery. So I made an appointment with an oncologist for Monday mooring.
I am also trying to get the lastest imaging sent to NOLA. God, getting medical records sent to another place is a nightmare. They are always really cold to you when you first call and then they warm up. They first tried to say it would take 7-14 business days. ARE YOU F-ING KIDDING ME? I said NO WAY. I have CANCER. I asked for the supervisor and she said she would overnight it tonight. God, people are unbelievable, both bad and good.
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Oh, and the first idiot I spoke with who said it would take 7-14 days to send it out told me she needed the last 4 of my social. I said no. I don't give it out. She gave me a hard time at first and then gave up. I just got the form. In NO place does it even ASK for SSN.
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klanders, as you may remember I have had three different kinds of flaps. Depending on where your cancer is, you may be a candidate for a rotational flap to replace what they remove with the lumpectomy. If it were me, I would consult with Dr Stolier, and inquire about having Dr Sullivan do a small flap at the time of lumpectomy.
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Having phase 2 in one week. I had a bi-lateral DIEP 12 weeks ago to remove implants and make new Breast.
Healing went well. I want to make this my last operation and hopefully a fairly easy recovery. I had a long time getting strength and energy back from 1st stage.
I have small breast, which I knew I would and want just the minimal amount of fat grafting to even them out. I am not doing nipples.
I have an area of hardness above my abdominal scar that they tell me they think is scar tissue they will remove. Maybe a slight dog ear too.
I don't really want lipo, is that how they fat graft? If so what area hurts the least to have lipo on? And what can I expect after, type of binder I will have to wear? How long? Getting back energy? Working out again?
I fly in a day before surgery, will see my doctor on day three post-op and then fly home. He hasn't seen me since a week after Stage 1 so not sure what his recommendations for this second stage will be.
Would love some shared experience.
Thank you so much,
Julieho
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