NOLA in September?
Comments
-
I'm reading thru all of these posts. I was diagnosed on Friday, July 29th with IDC...that's all I know at this time. So, looking for some friends that I might be able to relate with. I live in Mandeville and saw the "NOLA"...so need a friend right now.
0 -
Lucky sheri to live so close to the best docs..., but i am sorry you have had to join this crew.
Your signature says 3cm and mets... What tests have you had?0 -
Ladies thanks for all your good wishes. Surgery on Friday went well but I haven't been feeling great since last night. I don't want to scare any of the newbies looking into NOLA. It's a fabulous place and the nursing care post op has been wonderful. I have a bleeding disorder and Dr. S knew that my case would be a little complicated. I had a transfulsion last night and think that I'll be getting some more blood tonight. Hopefully, I'll feel better after that.
It seems really quiet here and I didn't realize that Brandy was still here. I walked the halls once today but didn't see another patient. I'm really, really tired so I'm off for another nap.
0 -
Ladies thanks for all your good wishes. Surgery on Friday went well but I haven't been feeling great since last night. I don't want to scare any of the newbies looking into NOLA. It's a fabulous place and the nursing care post op has been wonderful. I have a bleeding disorder and Dr. S knew that my case would be a little complicated. I had a transfulsion last night and think that I'll be getting some more blood tonight. Hopefully, I'll feel better after that.
It seems really quiet here and I didn't realize that Brandy was still here. I walked the halls once today but didn't see another patient. I'm really, really tired so I'm off for another nap.
0 -
bdavis...thank you, thank you, thank you for responding. I have only had a biopsy and just got my results this past Friday. To be honest...I'm scared. But, I'm usually a strong person. I'm so overwhelmed by all of the acronyms and the jargon on here. I know very little about bc...just starting my reading of all of those brochures that were given to me. Tomorrow, I have an appointment with a breast surgeon...then...???
0 -
We are all scared when we get our diagnosis and it is a lonely time.You are in the right place.I learned(and am learning) so much here.Everyone will be supportive and answer your questions,just let us know what you need right now.
0 -
SheriSimpson. The first 5 weeks after diagnosis were the absolute worst time for me. It is alright to feel overwhelmed and scared and lonely. That is just normal! If you didn't feel those things you wouldn't be human!
Betsy pointed out that your signature line has IDC and 3cm and mets. But you said you only had a biopsy -- so I would think you would not know yet what type it is or how big it is and certainly you would not yet know if you had mets, right? Hang in there.
0 -
Thanks, pandazankar...I'm surrounded by a healthy group of friends and family...so I know i'm more fortunate than others who face this alone. But, I have so many quesitons...and having very little knowledge about bc, I guess I was just looking for commonality with others. How long is the treatment??? this is my number one question...and I can guess the answer---it depends. Tomorrow, I have an appointment with a breast surgeon so I guess I will get more answers then. thanks again...
0 -
Springtime...thanks. I got part of the patho report back. It has the size of the tumor, also what the type is...but, the metastatic part--I'm guessing.
0 -
Hey Panda - I also spoke with Dr. Greenspun, met with him in person in CT and liked him a lot. I did a big tour and saw almost all the DIEP specialists: the NOLA docs, Greenspun, Allen, Levine and Keller. It's funny how they all say slightly different things, isn't it? I was told I was absolutely not a candidate for DIEP but the all the local SF surgeons, Dr. D in NOLA told me no stack necessary, Dr. Allen and Dr. Levine both thought I was "borderline" and might need stacked but might not, and Greenspun and Keller said I "should have enough" for just regular DIEP.
Obviously, I went with the NOLA docs as I like their assuredness that they could do this on me, no issue-and they were right! I also liked them for the sheer number of DIEP's they had done: Dr. D told me 3k, Greenspun, Allen and Levine said "a couple to a few hundred" and Keller said 1,200 - I didn't want to anyone's guinea pig! Very glad I went to see them all though, made me 100% sure I was doing the right thing going to NOLA. I do have some friends in NY and CT who don't want to travel and want DIEP so I have referred them to Greenspun (I really liked him!) and the breast surgeon he worked with in Greenwich Dr. Lazarus (who used to work at NOLA)
Oh I remember those nekkid pics - no fun at all! Definitely delete them as soon as you can!
Sheri - welcome to the group and sorry you need to be here, however Betsy is right - you are fortunate to at least be so close to the best docs. And if you need to be in a crew, this is a good crew to be in - all the ladies here are so caring and so helpful. If you have any questions or just need to vent let us know...
Toomuch - great to hear from you! Glad things seem to be going well thus far, sounds like the transfusion was semi-expected. Rest up and check back in when you can - we're thinking about you!
Welcome Running! Glad to see you de-lurked :-)
Well ladies I'm about 2 weeks away from my stage 2 and my hysterectomy - just got my period today, as it turns out my LAST PERIOD EVER - none of this is any fun, but that is certainly something to celebrate! Trying to look on the bright side...
0 -
Thanks denoument, I really did like Dr.Greenspun,he was honest and told me he basically does DIEP.I have seen four PS,had phone consults with three.If anyone had told me I was a good candidate for DIEP,I would have had an in office consult with Dr.Greenspun.But if the other doctors are right and I can't have DIEP,it would have been another wasted trip..not that getting opinions is a waste.I am glad to hear you are happy with your results,I have yet to hear of anyone being displeased with NOLA or Dr.Marga....Are you having Stage 2 and hysterectomy at the same time?Seems like a good idea to only have one surgery.Yes, we all have to keep looking for that silver lining.Sheri,did you have a core biopsy?Or an excisional? You won't know if you have mets(which means it has spread beyond the breast)until you have a lymph node biopsy.Just take one step at a time,it can be overwhelming to try to think too far ahead.You are right,treatment is very individual.After you see the breast surgeon,you will be able to decide between lumpectomy and mastectomy.When they have those pathology results,you will know what kind of treatment you are looking at.Have you posted on the just diagnosed forum? Lots of info there,but no matter where you post,you will get support and answers.We will be thinking of you tonight and tomorrow,do let us know how your appointment goes.
0 -
Hey Panda - I hear you about wasting the trip--I used to live in NYC so I combined a trip to visit friends/family with all those consults, so it worked out well for me. No sense in going if they don't indicate you are a good candidate with the phone consult--I totally agree.
Yes, I'm combining my hysterectomy with my stage 2 in NOLA in 2 weeks. That was based on their suggestion and many of the other docs I saw said the same thing, that this is the best time to combine procedures. NOLA has a GYN with surgical privileges at SCSH for that purpose, Dr. Von Almen - hoping that also goes off without a hitch (it's prophylactic for me) but there is a dark cloud hanging since my cousin (who is also BRCA1+) just had what was supposed to be a preventative oopherectomy and during the surgery they found stage 3 ovarian cancer--I'm fairly certainly I'll be okay (gotta look on the bright side with this too!) but it's nerve wracking nonetheless.
0 -
Pandazankar,
You ask about reconstruction helping post mast. pain. I think I was problably the person you read about. I had pain on my entire left side. I had one little spot under my arm that was the trigger. Dr. D told me he thought he could help and boy was he right. I now have no pain at all. Also I think the tissue added where the breast was removed helped a lot. I had ribs about to poke through my skin and it was so super senstive I could not stand for anything to touch me. I certainly could not wear a bra. Goo luck to you!
Sherri, you are indeed lucky to be near NOLA. If you need a Mast. please go to the breast center for an opinion. I have a friend who had her mast and immediate reconstruction there and she looks so good. I mean really, really sexy good! She only has a tiny little scar from the nipple down. I had reconstruction 3 years after my mast and it does not look nearly that good. I am very happy with my results however. I would do it again in a minute.
If you have active cancer the NOLA Dr.'s will see you right away. Best of luck to you!
Bettye
0 -
Hi sheri... As spring said the beginning is the worst time because you don't know anything, about your diagnosis, about bc options, about bc treatment... We are have been on the bc learning curve and it makes your head spin... The best advice i can give, is have all the right tests, including mri, before making any treatment decisions... The tests might take 3 weeks or more, but better to have all your info before you go under the knife... And the cancer isn't going to grow overnight, as i felt... I knew it wasn't, but when the cancer is inside you, all you want is to get it out.... But it is a process, unfortunately.
You asked how long treatment is... There are some factors:
Lumpectomy vs mastectomy (lumpectomy is much shorter recovery)
Chemo or not.. Can last as little as 3 months or can be much longer if you are her2 pos
Radiation... Lasts 6 weeks
So shortest path could be lumpectomy and radiation only for a duration of 2.5 months, but that is usually just for stage 0 or 1... I am stage IIa (tumor was 1.9cm), but i also had a small amt of cancer in nodes so i got 6 rounds of chemo... Nodes are a big indicator of treatment, so until you have a biopsy, don't get ahead of yourself.
Hugs to you0 -
Sheri, I'm so sad you've joined the club, but you have found a great group of ladies here, and on the entire board. The first several weeks are indeed stressful and overwhelming. When I was first diagnosed my nurse navigator told me to only check out breastcancer.org so I wouldn't get too overwhelmed and would get accurate information. I spent some time on the pages so I could understand the jargon. My cancer center also gave me some booklets and handouts so I was able to spend a little time, at my pace, looking at the illustrations and reading. I found a support group through my cancer center that is run by our local Cancer Community Center. (so many Centers!)
You will find out more about your treatment once you meet with a breast surgeon. After my biopsy result, I met with a breast surgeon. Once she took a look at what she could see from mammogram and ultrasound, she wanted to see more. Then I got an MRI and she wanted more biopsies. It was only after she was satified with the testing that I knew what my plan would be: a bilateral (double) mastectomy. I think it took me about 2 weeks to decide I would get a mastectomy on the side cancer was found, and about 3 weeks that I decided on bilateral mastectomy when some precancer cells were found on the non-cancer side. I had my first plastic surgery consult 2 weeks after my initial diagnosis, before my final (MRI guided) biopsy was taken. After you meet with your breast surgeon tomorrow it will not be too soon to schedule plastic surgery consults. You may be able to see that we love our NOLA docs at CRBS (breastcenter.com). On their website you will find a wonderful audio by Dr D and video by Dr S that talk about your options for reconstructive surgery. The Center runs a BC support group that meets once a month, open to the public. The Center has also set up a Patient to Patient support where a list former patients are willing to talk to potential patients considering reconstructive surgery.
I had my bilateral mastectomy done by Dr Alan Stolier. I thought he was wonderful! For my immediate reconstruction I had Dr Sullivan. I believe he grew up in Mandeville and he lives there now. I may have given you more info that you need right now, but I just wanted to put it out there. Your breast surgeon will walk you through what he/she sees now and if he/she wants more tests so that you can know what your options are. At this point, you want to take it one day at a time. Try not to look so far ahead because, as you said, it depends. I found if I focused one day at a time I wasted less time imagining what was down the road. You will go through periods and waves of grief and that is OK. Feeling your feelings, whatever they are, is a sign of strength. You will be OK, no matter what.
0 -
Hi Sheri,
I second what all have said and especially BDavis. Try not to feel rushed about any of your decisions. We all feel like we want the cancer out immediately, but try to stop and take a deep breath and then do your homework. If it turns out mastectomy is necessary, don't be scared about how you'll look after. You are located right near the best breast recon surgeons in the world and you'd be amazed at their results. They can do immediate skin and nipple-sparing reconstruction. I do believe I have heard that Dr. Sullivan does live on the North Shore (where I'm from, that means the north shore of Lake Superior!). You're going to get thru all of this and be okay! If you have any questions about the jargon, just ask us for a translation.
0 -
Sheri - what Betty said! What Betsy said! What Cider said! What Minnesota said! If I had to do it all over again, I would go right to the Center from the very start. It would have saved me countless surgeries! On another note - hang in there with all the testing. We all end up knowing way more about breast cancer than we ever thought we needed or wanted to know. Everyone here is more than happy to help explain things if you have any questions. And like Betsy said, treatment depends on your cancer properties. My sister and I both had breast cancer. Mine was more aggressive, but also triple negative (negative for estrogen, progesterone and Her2neu) where she was triple positive. Because of this, I was in treatment for less time than she was - even though my cancer was more advanced. Someone told me once that no two cancers are exactly alike, and I agree with that. Even if there are similar properties, each cancer may respond differently, doctors treat differently and we all react to treatments differently. Once you get all of your test results, your team of doctors will help walk you through your treatment options. The waiting in the beginning is always the hardest part. Once I got through that, I was really eager to start treatment - I didn't want to waste any time! Hang in there!
All the ladies that have had surgery - hurray! And to those coming up - hurray!
0 -
Help support those who have been touched by cancer and find others like you at www.ihadcancer.com, a new social support network for fighters, survivors and supporters! You can search for people by age, gender, location, and type of cancer on this site created by a breast cancer survivor!
0 -
I have a question.For those of you that had bilateral delayed recon,do you have input on what the new ones should look like? Or does it all depend on how they are able to work with the flaps?
0 -
Getting nervous ... see Dr. D on 22 August; surgery the 23rd. Scramble this week to get the pre-op tests done and sent in on time. Flights. Finding someone to be there for my exit from the hospital. Have family in Thibodaux, so will stay there, hopefully thru getting all the drains out. I am really loathe to fly with them in -- germs and discomfort (5+ hour flight IF I can get a non-stop!), and I just have this image of a TSA "pat down" with those grenade drains! Looks like there are issues with any family being there (husband has to be there with contractors -- turning our house into a B&B; daughter just moved to CA and is starting a new job; sister 1 just told me her husband has been diagnosed with dementia; sister 2 has a disabled husband and a son terminal with cycstic fibrosis; sister 3 is a maybe, but it is quite expensive for her on retirement and she has LOTS of pets; sister 4 is still working; mother is dead; most friends are starting back at the university for the fall semester). Is there by chance any nurses for hire? I suppose I can look at a car service. I should not be surprised, actually, that no one can be there for me at this time. I have felt all along that I am alone (except for finding you guys!), and now I REALLY feel alone. And, imagine trying to find an insurance company that will underwrite $100,000 in term life insurance on me, a requirement for the B&B bank loan. NOT good, not good at all. Cancer may take the dream and our future literally away! Ah, enough of this vintage whine ... got no cheese to go with. Just curious. Also, got my pre-op packet, but there is no mention, other than the "mark up" session with Dr. D, of other pre-op things and I have heard mention of MRIs and like that. Can anyone fill me in? Thanks ... and thanks for listening. Pity party done.
0 -
Oh I love a good pity party Celtic_Antique! They do help some times and some times they are just unavoidable. With all that you are going through I think you deserve a few! Any chance your family in Thibodaux could pick you up at the hospital? You still need someone with you for your flight home but that may be easier to come by??
I had to get a chest x-ray, blood test, EKG, and urinalysis at home before going to NOLA. I had already had a breast MRI and an ultrasound done when trying to pinpoint the location of my tumors for my biopsy. So those may have been required but since I had them NOLA didn't mention it to me.
Once in NOLA my pre-ops included a meeting with a physical therapist for Lymphodema avoidance. I was getting nodes removed, if you are not you may not need this one. Dr. Dellacroce for the meet-and-greet (since I had not met him before) and the mark-up. Dr Lagarde for a meet-and-greet and an ultrasound since she was doing my mastectomy. A meeting with the nursing staff for check-in and other miscellaneous items. And the CTA scan which was no big deal.
I hope that helps!
0 -
Thanks, JustLaura! That seemed to be what they were indicating, but ... hey, you never know! Um what's a CTA? I am only going for reconstruction (had I known then what I know now ... sigh 20/20 hindsight and that sound you hear is my kicking myself in the a--!). Was DCIS, all gone. No rads, no chemo, nada. Was thinking that perhaps they do vessel mapping with a MRI? Have e-mailed Liz. Hate to bother her, she is so busy. And, surgery 23rd, post-op 29th ... seems awfully close. I was 10 days post-hospital for mastectomy. Is that it? Family member is a single first cousin, both parents deceased. He's it down there with a huge house and beautiful gardens with a 700 yr old live oak in the middle of the garden. Just seeing that tree makes me at peace. Must be the Celtic roots ... And I have no idea who can afford to fly down to get me! Just go to the airport and pick someone up on the flight north, I guess!? LOL!
0 -
I'm 6 days out from stage 1 and my post op is tomorrow. Things I've learned
1. The surgeons are really stellar. My right side was a nipple sparring reconstruction and it looks exactly the same as is did pre-surgery. It's like magic.
2. Muumuus from Kmart are THE BOMB. You look like a complete moron, but it's soooo easy to take care of your drains when your clothes snap all the way down the front. I can even add humor to my husbands day by ripping the muumuu off like im a sexy mama. He thinks it's quite funny if I do say so myself.
3. I'm a little sad today about what cancer has forced me to live thru. I mourn the loss of my pre cancer body. Most days I'm ok and glad to be a survivor, but some days are hard.
Sheri-this IS the most terrifying thing you may ever experience. The first weeks are he'll and you just have to take things one step or breath at a time. I don't know if it's feasible for you, but you may consider going to MD Anderson for your testing and treatment protocol. In 5 days they can do all of the testing you'll need. At the end of 5 days you'll know what type of breast cancer you have, what stage, and a recommended course of treatment. You can come home and do your treatments. I did my chemo at home but had radiation and surgery at MDA. The peace that you feelwalking into that institution is indescribable. For instance, the radiologist does your ultrasound, if she sees something suspicious they biopsy immediately, then a pathologist looks at your slide and you know if it's cancer in 15 minutes! I had to wait weeks at home just for the appt for the biopsy, then weeks for the results. After 5 days I started on my first dose of chemo and I got a little of my power back and a little of the fear left.0 -
BrandyB -- Thanks for the huge laugh!!! I was wondering what I was going to wear in the NO heat and humidity that was cool and still had front closure. Mastectomy in March was easy -- hoodies with zip fronts and sweats! Those dusters are very handy and easy to wash and all ... and who knows? SOMEONE has to find them sexy! I nearly went to MDA so I could get it all done at once, but insurance wanted me to do Sloan-Kettering first. Onc surgeon with questionable ethics and then the plastic surgeon who promised to do the recon backed out. MDA, even when I was calling for info, seemed to GET it right from the first. Ah, 20/20 hindsight! SO glad to be heading to Nawlins!
0 -
Brandy B, WOW, the way you describe MDAnderson. AMAZING. And, I am still cracking up about the MooMoos and looking like a moron. HA!
Panda, generally, your new ones look like your old ones! Especially if you are doing skin and nipple sparing. If you go the the NOLA website, there are before and after photos. www.breastcenter.com Check it out, you'll see what I mean.
0 -
Sheri, as you can see, we are all very happy with our results and the care at the Center on St. Charles Ave. I just wanted to agree with all of the ladies and add to the information...the surgery you have for mastectomy, if that is what you end up doing, will greatly affect the appearance of your reconstruction.
Drs. DellaCroce and Sullivan work very closely with a couple of breast surgeons who would do the mastectomy exactly the right way to optimize the reconstruction of the breast (basically just removing the inside tissue and replacing with your own fat if you have flap reconstruction). A flap breast is warm and soft, and will gain and lose weight along with the rest of your body (including the other breast) for a lifetime, while an implant cannot do so. Implants can be troublesome and can rupture at any time, can cause capsular contraction (hard and possibly painful scarring) and can be quite uncomfortable. Those of us who have traveled to NOLA from other states and countries have done so for flap reconstruction in probably 99% of cases. They do implant reconstruction as well, but are known world-wide for their flap procedures and even invented the hip (love handle) flaps.
A recent study showed that 70% of women are not given all of their options for reconstruction when diagnosed, and beyond that, many (including myself) are not told that they have options for removing the cancer (lumpectomy vs. mastectomy). You have to be your own advocate and do reseach, whether online or possibly by reading Kathy Steligo's Breast Reconstruction Guidebook, available on Amazon and in libraries. With the results the Center is obtaining doing mastectomy and immediate recon, I would not hesitate to go that route if I had to go through this again. Lumpectomies can be very disfiguring and may also make reconstruction necessary. I was able to avoid radiation by choosing mastectomy rather than lumpectomy, but had to discover that option for myself because my doctors did not give me any alternatives.
View the Center's online photos. The most recent ones will be in the nipple-sparing section. After the scars fade, it can be difficult to tell that a mastectomy was done. It's really amazing what Dr. D and Dr. S are doing. Whatever you do, please have a consult with them before having any surgery! Multiple consults are highly recommended.
Sandy
0 -
am way behind on reading posts, but just wanted to say that i am sorry for the reason you are here but a big welcome to all the newcomers to this board..as you will quickly learn, there are some truly awesome women on here who will selflessly guide you and share their experience...brandy b, you keep cracking me up about those muumuus, and like celtic, i too have been wondering about what to wear in NOLA ..and NEXT WEEK..because YIKES, its, my turn next tuesday!!! .I have been awol of late cos i have been sick..can you believe that? , plain old sick, got thru chemo fine but a household full of young adults ( 6!!) staying here coming from all four corners of the world and they have brought some new foreign viruses with them and i have succumbed. been in denial for first days cos i really DONT WANT To be sick right now, but am hoping i am over it in next day or so and all will be ok. have to admit to being a little scared by this, this is chesty stomach virus, really not what you want to have going into surgery....last week was reading someone else on other board and their concern about only having completed chemo few months ago and not feeling well, and then betsy your experience too unnerved me somewhat and then i start sneezing, nose starts running, chest pain, stomach ache blahh almost felt like a relapse to some chemo symptoms with fatigue and just feeling unwell. if am not better in next day or so will talk to center, but i hope am thru the worst of it and all will be good by next tuesday..anybody else get sick the week before???
0 -
Hi Sheri - Welcome to the board that got me through the surgery to reconstruct my reconstruction. I am sorry to hear of your diagnosis, but glad you found a great bunch of women at bc.org. I will second what others have said and urge you to really take your time in making your decisions as you move through this process. If I could go back to my diagnosis 4 years ago, there are a number of things I would do differently, including going to NOLA for my original surgery and reconstruction. I just wasn't aware of my options. Anyway, being on the board here, you will be leaps and bounds ahead of many women in finding out what you need to know to make informed choices.
Spring - Please put my date for stage 2 on the calendar! I feel queasy even writing that. I am scheduled for Sept 9 for whatever Dr. D. feels needs to be done, plus nipples. It is hard to imagine that I am having another surgery already, but I am! And as much as I dread the surgery itself, I am soo looking forward to going back to NOLA and St. Charles, because I know I will be well cared for.
I am 12 weeks out tomorrow. Can that be right? My recovery has been slow, but then again, I am no spring chicken. I know many of you have talked about that tight feeling lasting for quite a while. Still pretty normal at 12 weeks? I notice it even more this week as I am swimming, and boy, do I feel it even more then. But I guess it is good that it is stretching me! Paula, was it you that was swimming really early on? I can barely imagine it!! I am seeing a PT, and will continue to work on the stretching and scar massage myself as well.
Celtic - you mentioned being on pain meds a loonnngg time after your tummy tuck. Do you mind if I ask how long? I am still needing some for pain relief, but then again, I think my case was a bit different and it is likely I have a stitch that is still in the process of dissolving, that seems to irritate a muscle or nerve, or cause it to spasm. Knock wood I seem to have had a lot of improvement in the past couple of weeks though, and I have not been on the meds continuously, just had to start them back up again a few weeks ago.
Kathryn - how are you???
0 -
So amy... What is tight? Your belly or your breasts?
And OMG... Flew home today on flight nightmare... Plane couldn't flight in a straight line due to weather and so flight was longer, with a major screaming child behind me... Could not wait to get off that plane.
Security was a breeze... I told them i had medical drains... They didn't bother me, so asked me to touch my drain bag and they barely rubbed my hand with a cloth... That's it.0 -
What was the name of the compression garment people rave about? Starts with an M?
0