NOLA in September?
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Maggie- we close on our house this week and will be down for 10 days starting on the 10th. Let me know if you have any consignment shop ideas. Looking for Headboards, drawers, end tables, coffee table, lamps, and kitchen stuff. Hope all is well.
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Cherrie - are you moving to Florida? Where? You are so gonna love being away from the snow, though the summer is a bit hot.
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we bought a place in Sebastian, FL for the winter months. I just don't like this cold weather. Hope to meet up with Maggie next winter. We are very close. (20miles)
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I think we will be less than 20 miles apart!! I live in Valkaria but work up in Melbourne. Cannot wait to see you and your hubs again Cherrie. There is a Space Coast Mommy Swap on FB that allows members to post stuff for sale...there has been so much furniture on there lately. You can ask to join that so you can see what is coming up. It is an info exchange too so if you can stand the mutterings to see the few nice furniture for sale posts it may be worth it for you.
Today I found out that my cousin in the UK has breast cancer...she is just beginning her fight but I know they are recommending a mastectomy of left breast with immediate diep, no chemo and just rads. I hate BC!!!! It sucks
Maggie
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Great Cherrie, but where will you be in the summer?
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Michigan is great from May to mid- October so we will be here or VA then.
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so...has anyone had shooting pains in their flaps over a year out? This week I have had those nerve "zingers" in my chest that sometimes even make it hard to breathe. I noticed a lump in the center of the two flaps right along the breast bone the could just be necrosis...which I have alot of in leftie or it could be something sinister brewing...let's go with necrosis!!! The pain radiates out from this area into the tummy and up into the chest area and down the left arm. It is not constant and seems to strike at different times everyday and has been going on since Saturday.
Maggie
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Maggie, I just had a month or so of zingers but they have subsided for now. My onc said it was probably post-mastectomy pain syndrome. Who knows -- we have a lot going on in there! There were also several of us with suspicious lumps about a year after Stage 2 and they all turned out to be oil cysts from necrosis. Mine are a little sore sometimes but generally don't hurt much. When I had the imaging done locally to check the lumps, the local docs didn't know how to interpret the images and suggested a biopsy. Dr. Stolier verified that they are oil cysts and saved me a lot of hassle. He said that this is why they suggest that we don't get imaging.
I'm sorry to hear that you have necrosis in leftie after having the flap replaced. I have a lot of necrosis in my leftie too. After seeing the MRI, Dr. Stolier told me that I basically have a failed flap that just took 3 or 4 weeks to fail. Dr. DellaCroce didn't look at the MRI and thought I could keep it if I don't mind the firmness, but I want it out! I'm probably having DIEP in January.
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Leigh Ann I had a lot on the left as well. On the outside of the breast for me. Dr D also said I could leave it but I wanted it out. So he removed it and did a tdap flap. I think you can really only get the tdap if it's a partial loss and probably doesn't need to go on the cleavage side as he rotates it around from the back. Also it's needing a little revision again. So after tdap I will have two revisions on it. Just food for thought.
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Unfortunately my necrosis is on the cleavage side of Lefty. Dr. D suggested a baby flap from DIEP. I was disappointed that we couldn't take care of it at Stage 2. That felt like a pointless surgery given that I will need another Stage 1.
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got word from Dr m that she wants me to have this checked....my stomach is in knots!!! I hate this all so much. This is in the cleavage area too right along the sternum. I only had 1 episode today of excruciating pain so perhaps this is muscular...happy thoughts happy thought happy thoughts! I did have to hold the boat at the dock the other day when we went out then rode on my son's jet ski and held on for dear life. It is all gonna b ok!!!
Maggie
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It will be good to have it checked out, Maggie!
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going to hold out for next week...getting my blood work done Monday and then have my 6 month ck with ONC on the 19th...if any levels are elevated she will do a scan to see what is up....will keep you all posted
Mags
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I had revision surgery a week ago yesterday to remove three very painful areas of fat
necrosis - one of which was around the left/cleavage side of my sternum. Over the past 4-5 days, I've felt a hard area that is right
where the worst one was removed, basically around the perimeter along the left of my sternum but now goes down and around most of the entire inside. I asked Laura today when she called to
check on me, and she said it's way too early to be necrosis again. Well
that's what she said last time, and yet it was. I'm trying to be patient
but I'm scared to have to keep going through the same thing, so I guess
I'm just wondering if it's possible it's something else - healing from
the necrosis removal that's somehow hard and tender? Dr. DellaCroce had said he put
in some internal stitches and had rotated the flap. Could this somehow
be related? Thanks in advance!0 -
Galia.... I think I posted a response somewhere about this... but I had a lot of necrosis and had it removed as well. I had a tdap flap put in to replace it. And although its much better, I think he must have left some necrosis or I would have lost too much volume. So I still feel firmness when I lay a certain way. It doesn't bother me, and after one more revision, will look much better. I have also had a flap rotated (the other side). This is not a major surgery, but will cause swelling and tenderness initially. Is it possible that that is what you are experiencing? And also I have some scar tissue that feels like thicker tissue, not hard, just thicker. Scar tissue is always a side effect of surgery, and the more revisions, you have the more likely. As a matter of fact on the cleavage side by the sternum on the left side, I can feel my scar tissue, and its a little firm. So maybe that's what you feel?
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Thanks for the reply Betsy. I hope so, but I really don't know. It's more than "just" feeling firm, it's actually painful/uncomfortable and is reminiscent of how it felt right after my mastectomy (when they told me it was too early to be necrosis, and then at my stage 2, he tried to just break it up and that didn't do anything for it - which is why I had this 2nd stage 2 to actually remove it... well that and the fact that I still had asymmetry and had gotten concave in my butt/hip area again). I'm going to try (ha) to be patient since it's only been a week. At what point did you start talking to them about another revision and whether it was necessary or not? Is it just up to you as long as you want/your insurance will cover it?
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I realized today that it's been 1 year since my BMX and immediate DIEP. I'm feeling reflective and don't have anywhere to share that except here. I don't hang out here much anymore because cancer is not so much on my mind, and it think that's a good thing. Today I blew off the Komen race for the first time in 7 years. I'm just so over it. It doesn't make me feel empowered ... And I've finally admitted that to myself. No judgement for those who feel differently.
I've been feeling like my pants don't fit anymore, so I bought some new ones today. I am a size 6 in some styles, and 8 in others. WTH? 2 years ago I was a 16. I lost some weight due to a mysterious illness, some through surgery, and I've been trying to stay slim through diet and exercise and I've shrunk even more. I love my new figure but I feel like such a imposter. I feel sheepish when people compliment me on how great/different I look. I'm still not ready to own my new body. I have a hard time just smiling and saying thank you, but I know that's the right thing to do.
Good luck to all the new flappers and best wishes to everyone. This surgery was definitely the right choice.
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Maggie, I get the zingers and radiating sensations sometimes. I even went to the ER because once it felt like chest pain but after I was admitted it was clear it was post mastectomy pain. I had this in my axillary on and off for 7 years and I think the scar revision solved that problem. The pain is rare, and weird thst it happens now. I hope that means my nerves are regenerating.
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m1970, Happy Anniversary! I can relate to how you feel about the Komen race. I have a hard time with it because only 25% goes to research. If it is truly a "Race for a Cure", more should be devoted to research. I think they provide wonderful services to many women through various organizations, but they should be honest about their purpose and call it something else instead of capitalizing on the word "cure". Just my two cents.
You absolutely deserve the body you are in. When I read your profile and all that you have been through, you have worked very hard to get where you are. I wear my new body proudly. It's still me, just rearranged a bit in a way that makes me feel beautiful. Although these new bodies may always feel a little different than the originals, we have earned these bodies. Just keep telling yourself you deserve it, and eventually the mind will align with the body. Happy to hear you are doing so well!
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Galia... I had my first stage II in Nov 2011 and waited until January 2013 to have him remove the necrotic tissue, so I gave it 14 months. Then I had another revision last November because when he removed the necrosis and did the tdap flap, some of it adhered and looked flat. And I am having another small revision this June on the same breast. So in short, I gave the necrosis a long time to settle and resolve, and then I hatched a plan with Dr D. I continue with the revisions because I know it can be better, and he is willing to work at it. And yes, insurance continues to pay (sort of).
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Thanks so much Betsy, I really appreciate the extra info. I will definitely give it more time (obviously it's only been a week), I just hate to think of living with the painful areas for such a long time. I admit I am impatient and just want to be done with the whole thing.
Did you just email Jeanine at some point and send photos, or were you actually communicating with Dr. D or someone else about your concerns etc?Another question, I did nipple sparing - and even though I lost half of one - they, especially my right one, face outward. Do you (or someone) know if it's possible to move the areola/nipple without risking them being lost? If they faced forward, I think my results would look a lotttt better and I would be happier cosmetically (not taking into account the painful/hard areas). I feel like I should have just done areola sparing to begin with but Dr. Stolier said I was a good candidate for nipple sparing so I figured I should go with it.
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Galia... Yes, he can move your spared nipple... He has moved mine more than once. And as far as keeping them in the loop, I was always sending them pictures, emails etc. I would contact Laura or Jeanine and flew down in October 2012 so Dr D could get an idea of what he'd do in January. I am a hands-on kind of person, liking him to see me in the flesh (literally).
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Hello friends, I was just diagnosed for the second time on May 1st. Today I found out that I'm positive for BRCA2. I had already decided to have a BMX, and was hoping to be a good candidate for the DIEP flap; the BRCA2 news just sealed the deal. Anyhoo, I went to see a local PS in Baton Rouge today and he immediately says "Oh, I don't do those. You have to see my associate." Soooo, I'm going back tomorrow to meet with his associate. Well, I'm now thinking about going to the Center in NOLA for a consult - they are the experts, and I live in between Baton Rouge and New Orleans, so that may be my best bet. But I have no idea how that would work. Would the doctor at the Center do both the BMX and the recon? If I were to have it done in Baton Rouge, my BS would do the BMX and the PS would do the recon. I'm so confused and don't know what to do, but I want this cancer out of my body ASAP. Is it hard to get surgery scheduled at the Center? And I'm also concerned about my out of pocket cost as well. I read one post on here where somebody said the bills just keep on coming and have exceeded what they were told they would have to pay. Any advice you can give would be great....
One love,
tp4ever
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TP - def get a consult at The Center or a consult with Dr. Marga (she operates at the Center, but schedules through her office). They hold time open for active cancer patients. You would have a BS and a PS at the Center. We have been having a conversation on bills on FB and most of the ladies say only pay what you agree to initially and that the Center doesn't balance bill. Dr. Marga is my doc and I have never paid for anything we didn't discuss.
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TP... Marty is correct. There have been posts about explanation of benefits, but the Center never bills you anything that wasn't agreed upon initially. You should definitely get a consult. I travel there from NJ, and you are very lucky to be so close. I believe they reserve Tuesdays for active cancer, so you could probably get an appt within 2-3 weeks. I too was concerned about how it would work with the BS and PS, but the surgeon's at the Center have their own very experienced hand picked breasts surgeons who perform the mastectomy.
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TP, yes, you should definitely contact The Center. They are the best. You are so very fortunate to live so close. I traveled from Ohio and so very happy I did. Active cancer cases take priority for scheduling.
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ThinkPink, you probably don't feel that lucky right now, but you are fortunate to live so close to these amazing microsurgeons and the wonderful St. Charles Surgical Hospital. I came from Oregon for my surgery! They can usually work active cancer patients in quickly (I think they reserve Tuesdays for this). The finance office will contact your insurance and let you know how things will work out. The Center is more likely to be in-network for you that most of us. They will get back to you within a few days and give you an idea of how this will go. They work with a great set of BS to do the MX. I felt a huge sense of relief when I set my date. Those huge decisions were made, and it gave me a lot of peace to know I was going to be treated by the best. Best wishes with all the details.
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I'm a Michigan girl. Since I had active cancer they got me in within two weeks - my local doc couldn't get me in that fast and was only willing to do implants. I was only billed what was agreed upon and was so thankful for my care/results that I worked with them to get the most that they could out of my insurance. It was worth every penny. My BMX was done at the same time as reconstruction with a breast surgeon and plastic surgeon (Dr Sullivan). You will be in excellent hands if you end up going to the Center or with Dr Massey. It was not an easy surgery for me but one year later I'm so thankful I chose the route that I did.
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It is not hard to get scheduled ASAP for active cancer. They hold spots for that very thing. You will get the best results if you can do immediate recon. Most breast surgeons will gloss over that because it's a hassle for them to coordinate with a plastic surgeon, but it just makes sense not to have to cut and do anesthesia twice. Also there will be 2 PS doing the recon, so that cuts the anesthesia down in half, which will reduce your recovery time.
I am also a 2X survivor. Having been through this once before I didn't want to drag this out any longer than necessary. I went to Nola because by far they had the best reputation and women come from all over to have them fix botched jobs. I decided I wanted to get it right on the first try.
If you are in a big hurry I would suggest working with Vickie to figure out the costs. Ask for the financial form and send that along ASAP. She will get back to you in a day or so. I went to Nola with no consult, just a photo review. I am not the kind of person that does things on a whim. I read this thread, but what really sealed it was talking to women on the phone about their experience and seeing the photos. The local doctor showed me his portfolio and there was no comparison. This should have been his BEST work.
Also, I know you want this thing out ASAP, but unless it is extremely aggressive (rare) you can probably take a month or 2 to work out these details, although it will not take that long.
Please look for my PM.
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Thanks MartyJ, I just emailed my documentation to the Center, and hope to get a consult scheduled soon. Any idea how long it will take for someone at the center to contact me? I will follow up tomorrow to make sure they received my info. Also, I will contact Dr. Marga. What's the FB page you're referring to? Is it private or can I join?
If they are able to use the tummy tissue for one flap, and hip, back or buttocks tissue for the oher flap, then life will be good. I really just would prefer not to have implants, if possible. I hate to feel as if I'm being picky. Of course, my first concern is to be cancer free again. But, next in line is the preference to use my own tissue.
One love,
tp4ever
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