NOLA in September?
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Dragon - this cyst had blood in it per the doppler, a normal cyst doesn't usually show blood. But I guess sometimes it can. Also, it was just the top of it that showed blood not all of it - so it was inconclusive.
My regular gyn is useless -that's why I am dumping him. Also, I don't have an oncologist. Was told I didn't need one per my BC (found super early, very small, stage 0).
I know NOLA can arrange to have the oophorectomy done there but I feel that if it turns out I have cancer like I'd like to get a team together here if I need one...and therefore have the surgery done here.
I did call back 10 minutes to 5PM and got a nurse and talked to her. The MD was in a meeting but she sent him a message. She felt that they wouldn't be doing any surgery without more tests. Don't know where that leaves me.
If the Dr S does a tummy tuck not sure how soon I could have laparscopic surgery afterwards. Anyone have any thoughts on that?
Also, I was thinking - is it just one PS in Stage 2 or do they team up? Seems like I'm going to need to be flipped (not sure if that makes a difference) from front to back (or back to front!) I was told they were planning on 4 hours.
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Awhile back I had a huge grapefruit sized cyst that enveloped one of my ovaries. I had to have it removed with the ovary. It did have some blood, hair and skin cells but no cancer. Over 10 years later I had BC Dx. The laproscopy surgery didn't affect being able to do the DIEP. This is just me but why don't you have ooph and stage 2 done at the same time? I'm sure they can do that at NOLA. They can do the pathology after the surgery and you can use your oncologist at home for any additional treatment if necessary.
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Kathryn, I wish I could say something to help calm you, but if you are at all like I am, there is not much that will do that, other than getting in to see the doctor. I can certainly understand what you are going through. My mom had ovarian cancer, and so every time there was anything remotely suspicious on my exam and ultrasound, I would be sick to my stomach for days. I had many cysts, but I cannot remember the descriptions, whether there was blood or not. I wish I could. Anyway, I was shocked that I got BC instead of ovarian, and as soon as I could after my chemo, I had my ovaries removed. It was done by a gyn oncologist, using a da Vinci robotic system. If possible, try to look into doing that, if you are going to do the ooph. Also, I do not see any reason that if you have to or want to have the ovaries out, that they could not do it in NOLA. In terms of teams, etc. Really, I wouldn't think that the onc gyn surgeon would play a big part on any treatment team other than to remove them. Or if he did, they could still do it in NOLA and then have your local gyn onc care for you. I do not know about how it would work in terms of timing with the tummy tuck, etc. Well, see, we are sort of getting ahead of ourselves here. I would definitely try again first thing tomorrow to get in to see that doc and find out what further tests they want to do. How was your CA-125, by the way? Ok, I am rambling now, I guess. Just worrying about you . . .
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Oh, actually, the reason I signed on - another quick question, what did y'all do re. wearing your wedding rings, if you are married? I haven't had mine off in years, it is going to be a struggle to take it off I think, if I have to. . .
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Hello all, am new to all this and just wanted to say that you all contribute to make this a very informative board and resource for anyone considering NOLA...which i am. I am wondering can someone just give me a real quick walk thru about what you all mean when you refer to stage 1 and stage 2? or point me to where i might find out..sorry to ask such a basic question! Rosemary0
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I'm BRCA+ too, and you're right to have a gyn-onc do your ooph if/when it comes that. You need someone who knows what to do if something suspicious is found. And someone to rule out anything suspicious in the first place.
Fingers crossed that it's nothing to worry about.
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Kaitsmom, Thank you for thinking of and asking all of these questions...tips, rings. The stuff that I make lists of in my head at night! For one of my previous surgeries they let me keep my wedding band on and wrapped a piece of tape around it so it couldn't come off. It was a comfort to me to keep it on as I'd never gone without it. Now I have LE on that side so have had it off lots of times lately. I'd still like to wear it into surgery, though. Finished up at work, almost, and now a zillion errands to take care of in the next few days.
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A little soap should help remove the ring. Best leave valuable jewelry at home. I had considerable swelling in my arms and hands post surgery for a few days. I don't think you want your rings on in case you have some swelling after.
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Jerusha, lol . . . I keep having all these random thoughts in my head now. Better than worrying about the big stuff I guess. Glad it helped. aargh It is getting so close! I leave for NOLA on Sunday and have a wedding to attend on Staurday. So tomorrow is it for me, really!
Well, I think I should take off the ring, then, maybe, if I am going to have some swelling in my arms and hands. Then it will be a trick to get it back on. Probably should have had it sized up a fewyears ago. Gotta love the tamoxifen/post menopause weight gain
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Kathryn-I'm so sorry that you are having to deal with this stress.Try to take a deep breath. Sometimes normal follicular cysts can contain blood. You need more information and the waiting is horrible. Wherever and whenever you decide to have surgery, just be sure that you have a gyn oncologist perform it.Why don't you call the center just to see if they can perform the tubo-oophorectomy at the same time as Stage II. I had mine done at the same time as another surgery. I figured it would be one less time having anesthesia and the recovery was a breeze. I hope that the doctor can squeeze you in tomorrow and that he gives you good news!
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Jerusha, lol . . . I keep having all these random thoughts in my head now. Better than worrying about the big stuff I guess. Glad it helped. aargh It is getting so close! I leave for NOLA on Sunday and have a wedding to attend on Saturday. So tomorrow is it for me, really!
Well, I think I should take off the ring, then, maybe, if I am going to have some swelling in my arms and hands. Then it will be a trick to get it back on. Probably should have had it sized up a fewyears ago. Gotta love the tamoxifen/post menopause weight gain
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Thanks everyone for your support. First good news of the day - the gyn/onc's person called back. She got through to him and they're going to find some time for him to see me on Monday. That's the same day the CA-125 comes back. Hopefully we'll get the results before the exam. Not sure what he's going to do but maybe his trained eye will have a better idea if this is a serious situation or a wait and see situation. Fingers crossed for the later.
Kaitsmom - sorry to hear about your mom. I believe the gyn/onc does the da Vinci - it lists robotics as one of his areas of expertise. Is there a reason that one is preferable to the other? A local FORCE woman has recommended him - he's part of a women's cancer group at Cedars that deals with lots of genetic issues (like BRCA) and is supposedly a wonderful surgeon with a good bedside manner.
Snobird, Toomuch and Kaitsom - as for doing it at NOLA - I do have hesitations about it (especially if it looks cancerous). I think I would only do the oophorectomy now if there is an indication for it...otherwise I am still thinking of waiting until the fall...but of course this may all be out of my hands. I do worry a bit about things being divided across the country. I do not have an oncologist here and I heard a lot of the gyn/oncs only want to take you on if they did the surgery. So it may limit my choices here by going to NOLA and not staying here to do it. I'm not 100% sure of any of this but as usual everything seems to have to be done in a hurry with no time to really examine all of my options. If on Monday it looks bleak I may see what can be done in NOLA...or as a few of you suggested maybe the best thing is to all call the clinic tomorrow morning just to talk about my options. Honestly, my head is swimming right now (does this ever end?)
Toomuch - I think the GYN felt it was unclear and that's why he wanted me to see the gyn/onc. He did say if I wasn't BRCA positive he'd just wait and see (as you said, it could have blood and be fine) - but he didn't like the hot spots on the doppler. Hoping it's just a plain old cyst and nothing more.How old were you when you had your oophorectomy? How were the after effects?
I can't recall 100% but I believe my first CA125 was 17 (that's the number tha comes to mind - I have to look through my records to double check.)
Jeskachi - I've got my fingers and everything else crossed too. Did you do an oophorectomy? If so, how long ago?How did you do afterwards (meaning the months and years following?)
Thanks again for the replies and advice. I'll keep you all posted as news comes in!
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Kathryn- I had total hyst in Feb 2008, at age 41. Being that age and BRCA1 the hyst/ooph was a no-brainer. My gyn-onc has spoken at the FORCE conference the past few years, she treats a lot of high-risk women in Chicago. I'm still in the PBM process, started 11/09.
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I am 34 and just had my ovaries out in 2009, because I am BRCA +
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Kathryn, I am so sorry to check in and find that you are having to deal with this! I had my hyst/ooph in NOLA 2 1/2 years ago with Dr. Cheng. I was at high risk for uterine cancer because my mother developed it after her breast cancer. I had heard about Dr. Cheng on the FORCE board, and she is a wonderful gyn/onc. Celeste coordinated the surgery for me along with one of my revisions. Dr. D told her that she had to keep the incisions in my ab scar, so I had no new scars! I researched the various methods and learned that da Vinci is associated with less blood loss, but Dr. Cheng did laparascopic on me with no robot and it went perfectly. A gyn-onc will remove things in their entirety, rather than chopping them into pieces (which could potentially cause a cancer to spread). They also do a peritoneal wash to look for possible cancer cells there as well. A regular gyn does not do this.
I did have cramping pain in my abdomen for two days from the gas used, but someone told me to curl up in a fetal position on my right side and that helped so much! The pain would start as soon as I changed position, so they kept me in the hospital for two extra nights, but then I had no further issues at all from the surgery. I was already having hot flashes, and they did not increase after the surgery---but experiences vary widely, of course. I just thought of something else---Celeste told me that da Vinci scars are larger, which I hadn't heard before.
I hope you can proceed as planned and this is just a false alarm. Please let us know what your doctor says on Monday!
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Kathryn just when you think you can breathe..... well I just wanted to ask for some advise..I had my ct scan & bone scan last week and all seems to be okay as far as mets..but it was noted that I have an ovarian cyst 3.8cm..... I never had the BRCa test as my onc said there was no history in my family to warrant it... Did everyone have this test done & should I?? I am trying to get in to ob/gyn tomorrow (honestly haven't been for few years) just so sick of bad news ..the weird part is no one called to tell me this info, I just happened to ask for a copy of my scans to bring to NOLA...it just makes you wonder what else falls through the cracks if we don't keep on top of it ourselves??!! Then after telling my mom ,she replies "its prob nothing" I told her to not say that to me as I'm the one they told the lump in your breast is prob b9...just feel like I need to concentrate on my upcoming surgery but not sure what this means..sorry to go on but had to vent....good night all
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HI SWEETIES: CHECKING IN! NOLA WAS LIFE-CHANGING AND AWESOME! I AM DOING GREAT AND JUST PULLED THE LAST TWO HIP DRAINS TODAY. I WILL GIVE MORE DETAILS THIS WEEKEND--BEEN BUSY WITH RECUPING AND MY GREAT KIDS: MICHAELA - 11 AND TOMMY- 3. I LOVE YOU ALL AND THANKS FOR ALL THE ADVICE AND ENCOURAGEMENT!
I GUESS I WAS TECHNICALLY A STAGE 3: BUT NOW I AM DONE ACCEPT FOR TATTOO'S-- GOING TO ASHEVILLE NC FOR THOSE!
LOVE TO ALL OF YOU--POST MORE THIS WEEKEND!
THANKS ERICA FOR THE KUDOS!
MEXXXOOO
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Kathryn-I was 48 when I had my surgery. I was in chemopause at the time. I had hot flashes during chemo and have an occassional mild hot flash now and then now. I didn't have problems with mood swings but do have vaginal dryness (hope this isn't TMI,) I tested BRCA negative but have a strong FH of hormonal cancers and I didn't want the constant worry. Like Sandy said, I had a full dissection and peritoneal washes and this was the reason I used a gyn oncologist. My surgery was outpatient and by 3 days post op, I was fine. Still hoping this is a regular cyst so you don't have to make rushed decisions.
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I have had bad back pain not resolving, found out it is some injury but freaked me out so had Xrays and bone scan to rule out mets. all Clear! Thank you God. Just old age and over exercising I guess!
I have an ONC appt on Monday 19th. Going to ask more about ovary removal. I am not BRCA pos. and last I asked (2.5 yrs ago) there was no data to indicate I should have them out. Want to check again on that. This bone/back scare has me all thinking about this again! ugh.
Louis13 way above on the last page asked about Stage 1 and 2. I wonder if this is outlined on the Center's Web site? check out www.breastcenter.com
Briefly: Stage 1 they move "flaps" of fat from either your belly (DIEP), or your butt (GAP), or both, (stacked DIEP/Lumbar or whatever other name they are using now, it keeps changing!) and make you new boobs.
Stage 2 is more cosmetic where they fix up the donor site areas, shape your boobies to make them even more beautiful, build nipples if you need that, Lipo everywhere to balance out your body since that is often needed. Hope this helps!!!
Some of us had had "Stage 2B" where we go back for more tweaking. Some of us have had several 2Bs! But not needed if you don't want.
Acutally, I saw Dr. D post once that even Stage 2 is not needed by some. Some women getting PBMs (prophylactic Bilateral Mx) keep their nipples and you're not required to go back. So many of us want the cosmetic updates from phase 2 we go back.
Hope this helps, Louis13, welcome to our list!
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HI HEATHER!!! GLAD YOU ARE GOOD DEAR GIRL!!!!
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thank you so much springtime! i read all these posts and it gets very confusing. ok well, all things going well i should be a stage one by end of july after finishing my chemo...i am so encouraged reading so many good things here about the NOLA team that the horror and heartbreak of what is really an amputation, is replaced by some optimism how it is not going to be so bad...Rosemary
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Kathryn, so sorry to hear you are going through this worry. I experienced a similar thing several years before BC related to a gene mutation called HNPCC and the worry was excrucuating. I hope you hear very soon that all is fine. I had a hyst/ooph and it was really a breeze.
Spring, I am going to tell you about the miracle balls here instead of FB in case some of the other ladies might want the info. They are smallish air filled balls that you lay on, and they come with a little booklet with lots of suggestions for how to use them. The basic idea is it helps very tight muscles relax (and that is what causes the pain much of the time). I have have chronic back pain for years and have done lots of different things, and I think using these has been maybe the most helpful.
Good to hear from you Heather!
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Ok ladies.... hotel suggestions? I plan on staying at the hope lodge after surgery, but really want to spend our 2 nights before surgery in the french quarter with my friend since she's never been there. I am on a super tight budget as my friend and I are both being laid off. I know of a few from the site, trying to keep it as close to 100.00 a night as possible.
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Hi Dragon. We stayed at the Bieneville (sp?) and it was lovely...I think $99/night - but I do know there are cheaper ones. The Center lists hotels that they have deals with on their website. You might want to check there too. Staying in the French Quarter is lovely.
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I am looking at the center's site right now, just having never stayed in any it's hard to know. I've heard the Bieneville is good, and the Place D' Armes or something but it's a little more than I want to spend I believe.
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Amy - Thanks for the support. I know an oophorectomy is in my future but the timing couldn't be worse! I should have waited until after my stage 2 was done to make an appt. What was I thinking?
Still waiting to hear from the gyn onc. The nurse told me yesterday that they're going to try and fit me in on Monday. Also spoke to Celeste - seems they no longer have a gyn onc with priveledges at SCSH. They have a gyn who will do the surgery but I need to have the washings done etc. so it won't do. Looks like I won't know anything until Monday (and even then it may involve more tests.) I'm hoping I get the all clear to do Stage 2 and don't have to push that back. Not sure what's going to happen. If it's OC then I guess I'll have the surgery and then chemo...so Stage 2 is going to be a long way off. I was supposed to go to Barcelona in July to give a talk -- that may not happen either. This morning when I dropped my kids off at school one of the moms asked if I was okay -- I burst into tears. That said, I found out what great hugs she gives
Feel very down and scared. It sucks.0 -
Oh Kathryn, I wish I could give you a big hug now, or say something to make you feel less scared
I'm so sorry, we all know how hard and long that waiting game is!!! XOXO0 -
Dragonfly-The Bienville is in a great location in the Quarter and is a lovely hotel. I've been going to NOLA for more then 20 years and have stayed at the Royal Sonesta and the Windsor Court. I learned of the Bienville from the Centers website. We wanted to go to NOLA on a budget when we went for our consultation because I wasn't working. Our stay there was perfect!
Kathryn-I wish that there was something we could do to make the waiting easier. I needed medication for anxiety when I was first diagnosed and waiting for a plan. I wouldn't hesitate to ask my PMD for something. We all know that waiting is the hardest part. Sending you cyber hugs!
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Rosemary... You will need to wait one month after chemo to have surgery... so build that into your schedule... When I first was told all that I needed, i assumed I could go from one thing to the next with no time in between, but the docs want you to heal a bit before moving on... you'll have a window of sometime between 1-2 months post chemo (at least one, less than 2)
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Rosemary, BDavis is right. I finished chemo on Nov 11 and had my stage 1 on Dec 3. They seemed to think that was okay. But I ended up not haivng a proper stage 1. They did the Mx and put in implants with alloderm as a "placeholder" to get me through rads. he was concerned that I did not have enough fat to go through rads, even with 4 flaps. So all of you probably think I am as skinny as Eve, not true, but I guess my fat was in all the wrong places or something!!
Dragon, here is an idea. Call the Hotel Mentelone (Royal Street, great location) and see what rate you can get. Trisha called them once and got a better rate. Tell them you're with the center and a BC survivor, maybe they'll cut you a deal? They also have a roof top pool that is divine...
Kathryn hugs hugs hugs. I am glad you found a compassionate lady who was channeling all our hugs to you!!!
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