NOLA in September?
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Hi.... hope everyone is doing well... I was reading along and I feel compelled to toss in my two cents... because it's hard not to when the discussion of "whether to have bilateral mx" comes up. Spring is right.. it's a very personal decision and to many the pathology supports not doing a bilateral.....and it works out just fine not doing one....... respect here for all decisions, even if they are different than mine...but having said that....
In 2006 I had DCIS, a lumpectomy and rads... was always told my breast tissue was dense.. and lots of monitoring and biopsies and I was on Tamoxifen (apparently I was a sucky metabolizer)... thought I was done but in 2008, they got around to doing a biopsy on another spot on the other side and it was invasive. After the bilateral mx and all the tissue was dissected, they found other spots of invasive cancer and scattered DCIS. Since my second bout, my mom was dx a second time and my sister was dx ....and guess what.. I tested NEG for BRCA1 and 2. Breast cancer is a sneaky beast and seriously the gene testing is helpful but I'm convinced there are other genes that have yet to be identified that are in play here. I think they do the best they can with the tools they have but well, if I had to do it over again, I would have had the bilateral in 2006... it probably would have saved me four rounds of chemo (not to mention 33 rads). Obviously, I'm just one person with a strong opinion but there are many many women who've had a second cancer. If doctors are constantly telling you your breast tissue is dense, it means they can't see sh*t. That's a red flag. The mammo the second time around didn't see the tumor at all and an MRI picked it up, finally. Dense tissue, breast cancer in the family, if you believe the stress of constant monitoring and worry will take it's toll on you... these are reasons that having a bilateral mx or a prophylactic mx might be a very good option... especially since we have found the surgeons who are capable of reconstructing a breast that you don't regret or may even be nicer than the one you have.
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Sorry that was so long. I hope not too strong or opinionated... if I could spare one person from the horrors of the 2nd cancer scenario, then I'd post it again. They are just boobs. Don't factor them in too much... that's all.
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I had a second cancer, but had no regrets about keeping my breasts the first time around. I was glad to spend an additional 5 years with them.
MY regret was going for implants first, thinking I would sail through. Shoulda gone straight for the flap surgery!
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Holtbolt... I hear you and believe it too... And for me, if I hadn't needed chemo this first time, I probably would be willing to make a different choice, but I can not go through this again...
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If I had known back in 2000 that I was BRCA+ and 11 years later would end up with DCIS I would have had a mastectomy back then. With the information I had at the time I made the best choice I could.
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Hi there! I just joined this board but I've been over on FORCE for a couple of months now. I'll be down in NOLA for my PBM and DIEP reconstuction. Marcia (soccermom) sent me this way and I've already chatted with Tigsun, but I wanted to know if anyone else would be down there while I am. My surgery is 5/4 (2 weeks from today--crazy!!!) with Dr. Dellacroce and Dr. Stolier. I'll be in NOLA for 5/2 to 5/12. Hoping to see some other people there during that time! Good luck everyone! ~dana
you can email me at dsbsub (at) gmail (dot) com
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Arriving the 14th... sorry.... good luck!!!!
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Hi Dana - Tigsun told me she was going to meet up with you in NOLA. It's great to have a NOLA buddy. I'm heading down on May 16th for my Stage 2 so unfortunately so we won't be overlapping. I'm also on the FORCE boards - I'm BRCA2 +.
Louis13 - I had a BMX because of my BRCA diagnosis. The odds were so high I'd get cancer in my other breast that it just wasn't worth the risk of worrying and waiting.
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denouement - I added your date and info above. You'll also be there with Katismom!! I am glad you will have buddies while down there.
Holtbolt, I had very dense breasts too. It's a friggin epidemic!! They need to find a way to identify and monitor dense breast tissue. I swear, slapping us under mammogram that sees nothing, and ultrasound that also sees nothing seems criminal to me.
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I was dense too... Oh, wait, I mean my breasts were dense... LOL...
I am so tired I can't keep track of anything I read even a few seconds ago.... I am off to try and get a good night's sleep. Tomorrow is 6 years from date of diagnosis... yeeeeeeehhhhhhaaaaaa!!!!
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Happy Cancerversary, Nordy!!
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My story is the same as Holtbolt...DD's extremely dense breast tissue ( like golf balls inside said Doc) multiple biopsies then tested BRCA - despite horrid family history dx 2 years later stage 2B triple +++ MRI wasn't covered back then
Welcome to our spot on the Web , Dana!!
Hugs,
Marcia0 -
Decades and decades of good health and joy to you Ms Nordy!!!
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ditto what Marcia said.. yay Nordy!! 0
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Way to go, Nordy! Wishing you many many years of good health and happiness!
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Awesome Nordy! Get a good night's sleep so you can celebrate tomorrow!!!
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Yay Nordy, may you have six million more years!!!
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Congratulations Nordy! Long may you (and all of us) live!
And one more for dense polycystic breasts!
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So I'm going to NOLA! My stage 1 BMX immediate DIEP w/Dr S is on May 10. I just talked to Liz tonight. I should talk to Katie tomorrow. I thought this was all out of my reach, but here I go... I don't know where I'm staying, but I figure Hope Lodge.
I've been grieving about losing my breasts. At first I was simply grateful the cancer was in my breasts and not an organ or bones or blood. Now I just can't believe my own breasts will be gone. I am grateful to have breastfed my 2 daughters. I think I'm so lucky to have found out about NOLA on this board. I've been going back in this thread, making my own notes. Probiotics! Stool softener! Arnica! I've never had surgery, though I did push out a couple babies. It does scare me to have my body shocked into such a change. I feel like a pioneer going to NOLA to have an immediate DIEP. My med onc said I shouldn't need chemo or rads, unless there is a big surprise. My feelings are all over the place and I'm trying to honor them all.
I'm have a bilateral mastectomy because of my dense breasts and I have 3 suspicious 'spots' (one having high risk irregular growth cells) on my non-cancer side. I had to have MRI guided biopsy to get a good biopsy result. I seriously can't see going through regular biopsies and then going through a cancer diagnosis again.
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Wow! It is shaping up to be a busy week in NOLA! cider8 - see the schedule for everyone's surgery at the top of the page. Spring can add you to the list if you ask her to. I am scheduled for May 11, and will be arriving in NOLA on May 9 at the latest. I will be at Hope Lodge for at least the 9th and 10th, so we will meet up! Feel free to send me a PM if you want to share contact info!
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Hu everyone, Swelling has gone down some but now is primarily on my left side from my waist down. Otherwise doing well, I dont know if I had mentioned but I had the breast reduced some during this surgery and I LOVE them. I never realized how " big" I was until I tried buying new bras. Still wearing the DOM outfit 24/7. I can't remember how long we needed to wear it. Someone please chip in. To all the ladies coming up... try to relax and enjoy the ride. You will feel amazing after a few weeks. Hugs and Prayers to all
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I thought after stage 2 the DOM was 2 weeks full time, then you could wear it just at day or night? I loved mine and still wear it on occasion a few months out! Glad to hear the swelling is going down, now just get the left side to go down too huh?
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Nordy Just read your post. I know you will have a good many years to enjoy those beautiful girls. I am so honored and privileged to have met you and had many good times. I know it has been a journey but you have made it easier for me Thanks and congrats on the anniversary
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Nordy~ Wishing you MANY, MANY more years.
Sally~ Now why are you not taking your PC to the toilet...lol... I hope you are getting rid of the fluid.
Cider~ Mourn the loss of your girls, I think it is normal. You are VERY lucky that you are starting in NOLA and I think after the initial surgery shock you will be happy again. I am thrilled with my girls and I have feet of scars.
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Boy, you miss a lot if you're away from here just a couple days! Thank God you're okay, Sally! I feel terrible for not being on here and adding my concern and advice (to call the Center!). But everyone took care of you. Really, I was so worried reading, afraid something was going to happen to you. So relieved when you finally chimed back in!
Cider - I think you will be pleasantly surprised when you wake up and you still have your breasts. Really, they are only removing the bad stuffing and putting safe stuff back in. Of course the sensation will be different, but I have regained a lot over the 4 plus years since my side one recon. My second side was a year ago. Me, too - Dense breasts. I escaped chemo and rads at the very last hour, due to them finally figuring out what kind of cancer I had (kind of). Coming that close to chemo and getting a reprieve was part of my decision to go with the second mast 3 years later. Plus, the kind of cancer I had put my other breast at high risk for getting cancer, too. And I didn't want that worry any more. No regrets! Really, I don't feel like I had mastectomies. This is soooo different than how it used to be. They do a beautiful job in NOLA, and my guess is that your body will look better after all this than it did before. Mine sure does! And it was pretty good starting out, if I do say so myself!
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cider 8 - i am having the same surgery with the same physician the day after you. See you there!0
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Cider, I added your info to the listing above, and as you can see, there will be other ladies there at the same time, great for you all! Welcome to our little list.
Cider, this may sound funny, and is a reiteration of what Minn said above. I never felt like I lost my boobs! The skin and nipples on the outside were the same, just the insides were swapped out with new "stuffing". The sensation is different, but it's not totally numb. And the best part --Fat from your belly and butt does not get cancer! It is a big surgery, but you will get to the other side like we all did.
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Nordy - congrats!!!
Heather - you are up next week!
Congrats and much excitement to the ladies who are signed up for later this spring and summer - for first timers you are in great hands!
Anyway, can I ask about everyones tattoos? Did you get them from Donn? Are you happy with Donn's work? Or did you stay local, or go to Vinnie Myers, Judy, Earleen? (I know Jamie went to Vinnie Myers and I really have to say I loved the color/shading etc that I saw on the picture forum). I am just nervous about coming this far and then having to deal another issue so am just looking to hear experiences.
thanks
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And while we are at it, can we have a review of nipples, please? haha I have not even had my Stage 1, but am already curious about that. I have read most every page of this topic, but then was reading some stuff last night as well. Where did you all have the skin taken from? Is that part of Stage 2 or is it Stage 3? (I'm thinking 3)
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I am curious about nipples too.. I heard its stage II... Even though I am a candidate for NS, I will opt for removal... don't want to chance anything.
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