NOLA in September?
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Looking forward to the update from Kathryn and the news from the 5 ladies going to NOLA this week--best of luck to everyone! Things continue to go well here, getting better every day, 5 days post op and still progressing!
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I just came back from the gyn/onc - who has an amazing bedside manner - really listens, doesn't rush, well-informed - and he says that because of my BRCA2 he wants the ovaries to come out sooner rather than later. He said the cyst wasn't that worrisome but that 8% of BRCA patients do end up with cancer when they have this type of cyst and 92% don't. He said I could go and have my NOLA Stage 2 surgery done but he wants to take out the ovaries 2 weeks post op and I'm not sure how the NOLA doctors will feel about that. I'm waiting for that call. This is the way I'd prefer to do it - breasts then ovaries, since it's easier to recuperate from the laprascopic surgery plus I have all of my flights in place (I'm going to my stepson's graduation this weekend then flying from there to NOLA)...but I have to hear back from NOLA if that is okay. He is also okay with me having my Stage 2 done 2 weeks post laproscopic surgery -- but I doubt I can get frequent flier miles to get to NOLA on such short notice (that's what we're using now.) So it's more wait and see. Pretty shaken up by all of the rush-rush on this and sudden change of plans. Wish it wasn't so.
Thanks for the support and hope to see everyone down in NOLA next Monday! If not have fun and recuperate quickly!
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Well Kathryn that sounds like great news to me! I opted for mine ovaries to come out as soon as I knew I was BRCA positive. The risks were to high for me personally to keep them in. The recovery was really nothing and normally my ob/gyn does it as a day surgery but because I had it when I had my MX I was over night a couple nights. I'd assume NOLA would be fine with it, unless they are opening your stomach incision back up at stage 2, but even then I'm sure it will be fine! keep us posted
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Kathryn, YAY!!!!!!!!!!!!!
xxx
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I would do your Stage 2 first. It's hard to gauge how surgical menopause will hit you and what your body will do to compensate. I think it would be easier to recover from stage 2 as healthy as you can be, then when you do the ooph you have all the time you need for your body to adjust to the new (lower) level of hormones. I had laparoscopic hyst/ooph, and I'd say it was a more difficult recovery for me in general. I think it took about 6 months for me to feel close to "normal" again. The surgical scars healed quickly, but the overnight menopause really f*#ks with your system.
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Kathryn - I was really glad to read the news from your gyn. Not that you are looking forward to yet another procedure, I am sure. I hope the docs at NOLA are on board with letting you do your stage 2 first. But, either way, I'm glad you will be okay.
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Kathryn glad to hear things went as well as they could at your appointment.
Yes party in nola. 5 of us in the hospital at the same time. see you all soon. i will have tigsun on my door.
I visited with denouement yesterday. She is doing great and helped me so much. I picked up some neosporin with pain relief for use when my drain care and i got a hoodie with inside pockets to hold my drains. she told me the tip that men's hoodies tend to have them but i found one today at the Gap that was a woman's hoodie and it had the inside pockets yeah!. today is my last day playing in new orleans. tomorrow are all of my pre op appts. i am having a grand time even though i wasnt prepared for 90 degree weather. yeah for a/c!
running out to explore more of the city. eating has been great. ate at mother's and luke's both near the hotel. i caught the trolley car past the hospital and it looks beautiful from the outside. cant wait to see inside.
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I think for me I didn't notice the effects of having the ooph because chemo shut down my system already.
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on hold with NOLA now to find out if I can do the Stage 2 first and then my ovaries. Also heard back from my GYN - CA125 is 9 YAY! Fingers crossed I can come for stage 2 next week. I'll update soon.
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new update - the PA said 4 to 6 weeks after my Stage 2 because I'm having a tummy tuck and when they do the ooph they fill you up with air. BUT I didn't carry my kids so they probably aren't tightening muscles - so she's going to email Dr S and see what he says. I don't know...I may do the ooph 4 weeks post Stage 2 surgery. But I'll wait to hear what Dr S says first. Thanks for listening. Still on hold to come to NOLA
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You're having more of a tummy tuck than the rest of us have when we do DIEP? I know at stage 2 Dr S revised my stomach incision some but not nearly compared to stage 1 incision. Keeping my fingers crossed!
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Dragon - not sure if this is more or less of a tummy tuck than DIEP. The worry is that the ooph is laprascopic and they fill you up with air to do it...and that can disturb Dr S's beautiful work. Still waiting to hear back from the big man himself. Also, like your new picture
Jeskachi - I am worried about the aftermath of the surgery (not the surgery itself.) Thanks for sharing your experience. It is such a wildcard as to how you feel post surgery. Based on family history I'm still about 7 years out from menopause - so this surgery could hit me hard as it did you.
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Has anyone had sgap and from the abs I am having surgery June 15 and I don't know what to expect I have only spoken to liz only and Dr. S said he would have to take from both spots to build breast what is sgap and igap i know what diep is but not thr other two, how low on bottom can they take from? Where is the best rate you can get for hotel? to much to think of i need help my husband passed right before I got C so I'm pretty much on my own for this i could use all the advice i can get.
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Hi Everyone...well I'm in NOLA too!! Enjoyed some beinets and took the streetcar down st charles..and did alot of walking and it was hot!!! So me & dh are pooped and calling it a night!! been up since 4am and can't keep my eyes open. Pre op day tomorrow...I'm and very nervous and excited..Guess I'm nervous because it's surgery and excited because it is the beginning of my fight and road to beating it...see you all soon
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Ok ladies need advice... I am healing so very nicely but there is a spot under one breast on incision line and it has had a scab there and I thought nothing of it sort of mind set it will fall off.. well tonight I pulled it off.. did not hurt or bleed but it is gross underneath.. all white and pussy like ( Sorry for the TMI) I am on an antibiotic still waiting for an ultrasound for seroma and I am getting down right depressed.. So sick of not healing well and I am back to work so taking an time would constitute another absence occurance and I cant afford that. Not money wise but attendence record- wise. Ok What do I do. Laura is on me to get Ultrasound and possible utralsound guided aspiration for possible seroma but my MD seems to be dragging his feet because I dont know if he knows where to send me for it. What do I do remember I dont have Oncologist because I am BRCA 2 positive not cancer survivor. HELP
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My CA-125 was a 19 (20 being positive)... I think waiting 2 weeks or 3 weeks can't really make a difference.. and from what I have heard from my gyn is the oofrec is easy (w/o the hyster.)
Besides, we have plans Monday!!!
Please everyone tag your doors... who will still be in the hospital this weekend? I fly in Saturday am.0 -
hi Betsy, I should be getting discharged some time on saturday
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Kathryn great news that everything looks OK.
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Well... I arrive in NOLA at 9:30am (hopefully)... so I will try to stop by at lunchtime... no promises... I am at the mercy of my friend's son and husbnd to drive me around...but I am curious to see the hospital anyway... that is part of why I am coming down.
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Bdavis - the lab here has anything under 35 being normal. I am just happy mine went down since Dec - I think that's a good sign and it's giving me confidence to wait an extra two weeks to do the ooph.
NOLA said I need 4 weeks between Stage 2 and the oophorectomy -- so I am leaning towards coming for stage 2 (and hanging with the group!) and then doing the ooph in mid-June. I'll talk to my husband tonight and the gyn/onc tomorrow before finalizing but I'm feeling much more optimistic tonight (although already mourning the loss of my ovaries!)
Thanks for all of the wonderful, comforting support. It helps so much!
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No mourning... easy surgery, and no looking back... I am sure you will make a great decision!!! Glad to hear your score was so low...
Also my score was 19 (20 is positive) but also had US and all clear... so that CA 125 test is funky!
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Hi all! So tired, and surgery tomorrow. Pre-op day was great, NOLA is great Dr. D is great! I am now excited more than scared. Tomorrow may be another story! Surgery is at 10 am. My husband Wil will be with me, so y'all look for him, and I will have a sign on my door. After surgery will be at the Homewood Suites, hopefully by Friday. Looking forward to meeting all of you.
Kathryn I am glad for the mostly good news. Really better than what it could have been. I look forward to an update, and yes, you had better get your butt down here to join us! Really too tired so I won't write more, but know that you have been in my thoughts and prayers with all of this. Will write more when I am "on the other side".
Love, and prayers for strength and healing for us all.
Amy xoxo
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lesliet - i am not really sure about the other two either. i did most of my research on diep. the hotel rates are on the link katie gives you. also i believe if you had/have cancer you can stay at hope lodge for free. katie can explain more.
bdavis - i will still be at the hospital on saturday
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Yes... Hope Lodge is free... not forever, but couple of days before and thru post op visit
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Amy and Cider - today is the big day! I'll be thinking of you. Sleep tight and let us know how you are doing when you're up to it. Hoping to see you next week!
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Well I have just unpacked the BIG duffle and moved everything to the REALLY BIG duffle! And I still have most of the day tomorrow (Tues) to obsess further, as my flight is at 6 pm. Amy and Cider, hope you are in dreamland and having good sweet sleeps with visions of new boobies dancing in your heads. So excited for you and for dsyndawn and Tigsun. My preop is Wednesday, DIEP on Thursday. Looking forward to meeting up!
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Yeah!!!
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Kathryn - Normal lab results for CA125 is anything under 35. (BD - I am not sure which test your md's were using... but all the ones that I am familiar with are considered in normal range from 0 - 35). And 9 is awesome! It is normal to mourn the loss of your ovaries - you have had them all your life! I agree that surgical menopause is difficult - I felt okay for about a week and a half, then all of a sudden, the crying, yelling, out of control behavior started. I finally went against my oncologist's wishes and started using a phytoestrogen cream. It has saved most of my sanity (I don't know that it was always there to begin with anyway...
). I am glad you have some time to sort through all this and that things do not look concerning to your gyn/onc. Hang in there!Sally - First of all, my friend, stop picking!!! You need to let it heal and of course there may be some oozing once you removed the scab - it needs to heal. I would be mostly concerned if there was redness, increased temperature in the area and/or lots of swelling - all signs of infection. Or if there was a funky smell coming from your wounds. Please give yourself time to heal. I think it just may take you longer - are you up on your vitamins? You need to have adequate vitamin C to help build collagen - which will help your connective tissues and skin. Vitamin A also helps with skin healing. Zinc helps keep your immune system up (as well as vitamin D) and that will help prevent infection. Also, vitamin E helps in healing... although it does have some blood thinning properties, so if you have any issues with bleeding, I wouldn't add any supplements of vit E more than what you would get in a good daily multi vit. Hang in there Sally! Drink lots of orange juice and eat some carrots!!! Maybe blend some carrot/orange juice together and sip on it all day at work! ((((hugs))))
WOW. Look at all of you coming up! Positive thoughts for uneventful surgeries and speedy recoveries to all of you!!!
May 10 - Cider8 -.
May 10- Kaitsmom -
May 11 - DsynDawn
May 11 - Tigsun
May 12 - Jerusha
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lesliet, sounds like they may be doing a stcked flap for you--where they take the tissue from two different sites, pancake them together, and create the breasts.
SGAP is tissue from the upper butt. IGAP is from the lower butt. Often they'll use hip flaps, too, for stacking.
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a question for you 50/50 360* gals: if you gain or lose weight, do your DIEP and GAP breasts change size at different rates? I tend to lose from my stomach before I lose from my butt, and my good GAP breast is pretty dense. Wondering what that means for future symmetry.
*one GAP/hip side, one DIEP side... scar all the way around. we should start a club
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