NOLA in September?
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I had to meet Erin back at the hospital yesterday so she could plug a leak in my left breast with more dermabond. That did the trick. It's a beautiful day in NOLA today, so we walked to the FQ for lunch at the Green Goddess. Amazing food. Stopped on the way back for some FroYo. Fitbit says 6,000 steps. The walk really loosened me up. Now for a nap...
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Good to hear you two ladies are doing well! Zen you got that engine roaring? Omgosh... that made me laugh... Dr. D and his car references... sounds just like him. When I would see him and he was all tuckered out after a surgery I would say... "Any day in the shop is a good day, right?"... and he would smile slyly and agree.... Oh how he loves doing surgery and making us "pretty".
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Oh... and an update. My girlfriend with triple negative. One confirmed biopsy in her left breast that measures 8-9mm on mammo and measures 1.9 on MRI. The two additional worrisome spots (one in each breast) were biopsied under MRI and came back as benign.
Ok... so she has had 4 or 5 opinions here in the Wash DC area (by highly rated docs)... and she finally had her surc onc visit at Hopkins yesterday. Hopkins threw us for a doozy!!!!! His suggestion was that he thought the tumor was closer to 1cm rather than 2. His advice was a lumpectomy, no chemo, and rads (check nodes, of course). HOLY SHIZZLE.
Every other doc here in Wash DC has said chemo is not an option... it's a must. Most docs have said surgery first but would be willing to do chemo first if that's what she preferred.
I am mind-blown. Everything I read seems to say chemo first... then surgery... and not one doc yet has preferred that regime.
I told her she needs to see a Hopkins MO asap... but seriously WTF?
She is started down the NOLA path also... I got all her paperwork in and we are waiting to hear back. I am guessing they consult with a SO down there, (Stolier, Furhman... or someone)... , right? I guess that would be another opinion for her.
I also found out from Hopkins today if she decided on double mastectomy at NOLA then rads would not be necessary (as long as nodes are good). I am sad there isn't more consensus for her.... but Hopkins saying no chemo... I'm shocked.
Any advice?
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motherandchild, If it were me, I would do chemo before surgery. I was TNBC, and did not have radiation because my nodes were negative. Most have radiation, some do not, but almost all have chemo. Everyone has their own approach, but I would want to know I killed it with chemo first.
I cried tears of joy today. It was one year ago today that I was diagnosed, and after my shower, I stood and admired the beautiful body Dr. D has given me. I couldn't be happier. He is definitely put on this earth to do exactly what he is doing. I am feeling very thankful for having found him and Dr. Stolier. I never even considered nipple sparing surgery, but they felt I was a good candidate, so I went with it. Who knew nipples were so important, but although my breasts changed shape a bit along the journey, they were always mine on the outside. Honestly, I don't feel as if I had a mastectomy or have lost anything to BC. I have gone through a lot, but not lost anything. Conversely, I feel as if I have gained so much from having gone through all of it. Call me crazy...
And a special thank you to all you ladies for all your wisdom and support. I am truly blessed. And my birthday was yesterday...who gets new boobs for their birthday?! My wish for each of you is to feel as complete as I do today.
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I hopefully should find out how much my insurance should cover at NOLA within the next week. They have had my medical records I think since the end of December/early January. This has been a longer process than I ever imagined. I am hopeful - but thinking it may not cover as much as I am hoping for... Wish me Luck! I need it- its been an awful 4 years... but like everything... nothing stays the same and better days ahead...
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Zen, happy birthday and cancerversary. I celebrate both myself with gratitude for what I have survived.
motherandchild5, if her cancer is not invasive (DCIS) there may be no need to do chemo if she is over 40. The staging at this point, before surgery, is just a guess. Imaging can be misleading. Doctors are going to recommend the least invasive surgery -- anything else would be unethical. I had a lumpectomy and he took more than I expected and it was disfiguring. But mastectomy with DIEP was way more invasive. Sure if I knew then what I know now I could of saved myself a lot of trouble, but what if it really was as small as it looked on MRI and that was the end of it? It's a hard, hard decision not made easier when you get different opinions.
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Mother... The thing about diagnosis and treatment, is that there isn't a cookie cutter answer. I think you collect opinions, and then choose the team and approach you most trust. I went to one MO, and listened and did my research and discussed my findings and ended up not doing what he suggested, but chose a more radical route. My MO wanted me to have 6tx of chemo, and I did this, while others in my situation had 4tx and others had none. I have no regrets with an aggressive approach. My MO suggested lumpectomy and radiation, but after my research I knew I had a better chance at no recurrence with MX, and I knew I'd sleep better at night.
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Good morning Ladies....
Thank you for your opinions.... Has anyone heard of Adjuvantonline.com ??? This is the website the Hopkins doctor pulled up and entered all my friends info.... 52, 8mm, triple neg. Etc..... It then calculates treatment and risk of reoccurrance... etc. I haven't checked it out yet.... but will.
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Hi ladies! I've only just discovered this group (unfortunately, after I've already had my phase 1 (PBM with hip flap recon 07/17/13) and phase 2 (11/20/13), but better late than never!). I was hoping to get some advice. I need to have a 2b surgery, because I have some very noticeable (with and without clothing) asymmetry issues, I still have some fat necrosis around my sternum that is quite painful and wasn't removed during phase 2 (as I'd hoped/expected), and it also looks like I'm starting to lose some of the fat in my donor sites (I'm getting concave in my butt/hip area again).
I work in television production and have a really hectic schedule, so I wanted to have my surgery in early April when it looks like it'll be semi-calm, which would be 19 weeks out from my phase 2. Dr. D had originally told me he suggested I wait 6 months. Would doing this at ~5 months be okay in your opinion? I don't really want to wait any longer than necessary, because I'd love to hopefully not have the pain issues anymore, not to mention, I'd love to be able to start working on my regaining my self-confidence if I'd like to maybe think about starting to date some day (especially since I'm in my late 30s and am supposed to have my BSO sooner than not). On the other hand, I'm worried the asymmetry will never be resolved, or at the very least, I'll need a 2c, and I also am worried that perhaps I should be waiting until November/December (which would be extremely difficult for me mentally, but it's the next semi-quiet time at work) to make sure that even more fat doesn't dissolve from my booty area or something.
Please feel free to PM me, as I'm still learning to navigate this site.
Sorry for such a long/rambling first post, and thank you in advance!0 -
Galiarific,
I think the longer you wait the better... I still had swelling when I was 5 months out from my first surgery... I am 4 months out from my 2nd surgery and I still get very swollen in one breast. Certainly, six months or greater seems to be Dr. D's preference. If you are really worried about asymmetry I would really want to make sure everything is healed and settled. If mentally you don't think you can wait that long, I think we all certainly understand those feelings.
I am certain somebody more knowledgeable than I will come along and comment.... I am sure they will be more helpful than what I have to offer. Good luck to you and so glad you found this forum. You will meet a lot of wonderful ladies!
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adjuvantonline.com
To run the model you have to be a doctor, or lie and say you are a doctor when you create the account. It's helpful when considering the risk vs. reward for doing hormonal treatment and chemotherapy if you are on the fence about doing treatment. Not every latest study is incorporated into the models, but it is updated regularly. Each individual has to consider what kinds of risks they are willing to take. Some will do chemo for a 1% reduction in survival risk. Some say that's not the worth the effort or other risks of treatment. I didn't like having a number -- only a 74% chance of surviving even with treatment. It just sounded dire. But still I HAD to know. Really it doesn't mean anything because you are either 100% alive or 100% dead, the model just helps you make decisions. I think chemo is a hard sell for some people. It sounds so dreadful and this helps justify the risks because when you compare the opportunity cost of not doing the treatment to the risks of doing the treatment it is usually a slam dunk. The really hard decisions are the ones where it is a toss up -- like surgery choices or the order in which to do things, and the model can't help you with that. I'm an analyst and needed all the data points I could get my hands on to feel right about my decisions. Just hearing the doctor say it's what I should do wasn't good enough for me and this was a great tool for me to get on board with the program.
Marsha
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hey ladies!! It's been a while since I've logged in. Considering going back to NOLA for a revision. I had wanted a C but my bra is a DD. I know when I went a couple years ago I received a grant for assistance with travel costs, but for the life of my I can't remember from who. Does any of this sound familiar? Also, what happened to Stacy and Katie at the center?
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Dragonfly... Katie got married and then moved a few months later... I think last fall she left. Who's Stacy? I was wondering what happened to Trish?
Galia... I know you are concerned with the symmetry, but I have to agree that Dr D likes a lot of time before a final revision so he knows exactly what he's dealing with , with no swelling.
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Stacy worked there when I was at the center in 2010-2011. She was who I sent pictures to, and helped in setting up surgeries I believe.
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MartyJ ...get those nipples!!! I'm so glad I did. Really look real and not too big!
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Melanie - thank you so much. I have been really torn as to weather to do nips and tats or just tats. Think I will do nips, but need to wait til August unless Dr. M has an opening in March. Hmmmmm!
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Dragon... I first contacted the Center in the Spring of 2011. I didn't send pictures, but had a consult instead. And worked with Liz on all of that. So Stacy may have been there, but I just didn't speak with her.
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Does anyone know what an alloderm sleeve is and how it differs from an alloderm hammock?
thanks
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Aww, is Trish gone too? Stacey was one of Dr S's nurses I worked with for a while.
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I went for my stage 2 revision in August and I asked about Trish. I was told that she was no longer working there. She was really nice when I was there for my first surgery. Katie was extremely helpful and I emailed her before she left.
I am almost 6 months out from stage 2. I feel great but am I completely healed? Should my swelling be gone by now or does it take much longer?
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Bailey... swelling can take a super long time. I remember when I asked Dr D about a stage IIb, he wanted me to wait 10 months so that all swelling would be gone. In the end, I waited 14 months.
I don't know when Trish left, I just know she wasn't there in November. Can't remember if she was there in July when I had an appt... She was very sweet. I don't know Stacy, but I have Dr D, so I never worked with her. And I loved Katie. She was super helpful and sweet also.
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I just had my Stage 2 last week, and Dr. D said things will look nicer in about 4 months, but it could take up to 18 months to see the final results.
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completely not NOLA related but I had to post somewhere. I did have stage 1, 2 and nipples done with Dr Sullivan in 2011.
Freaking out here... I feel like I may throw up. I worked out most nights this last week. Weights and the treadmill. Friday after I got home I did a few things around the house then showered. I took my sports bra off and saw about an inch or so down from my new nipple this section that was inflamed. Almost looked blistered, red, very bruised etc.. It's still there! I've been watching it all weekend and drew black lines on all 4 sides. It hasn't got any larger or worse. It came on over night! No sensation so don't know if it's itchy or burning etc.. Last time I had something on my breast it was a lump and look what happened. It's not gotten worse, it appeared over night, it's on the opposite side as the cancer and on my abdominal tissue. But I still can't shake this.... I sat on my ass most of the weekend and watched tv. I couldn't think or do anything else. I've been putting anti fungal cream on it since last night. Right in the middle is a red dot or something, so it makes me think it could be a bite or something.
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dragonfly, gosh cancer does such when things like this have you afraid for your life. I hope you can relax soon. I find that sometimes my fear feeds pain.
Marsha
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hmmm... Odd. Does sound like a bite, but perhaps you should see the doctor.
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Dragonfly, did you call a dermatologist yet? I would if I was you. Find out what it is and get the right stuff to treat it. Who knows if it's a fungus or not!!
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Ladies,
Some good news to report- after a couple weeks of waiting my sister going to be treating in NOLA (May 28th). Vickie has been wonderful and worked very closely with us on the financial end. My family is pulling together and we are going to make it work. Liz also called to tell her that Dr. D got his team together and reviewed her photos again and believes they can do the nipple sparing procedure. She will not be treating with Dr Stolier due to insurance reasons- so I am not familiar with the other breast surgeons but I am assured if Dr D works with them- I feel my sister is in good hands.
Seeing my little sister go through after just being there 2 years ago I feel is going to be a bit of an emotional journey. Maybe healing into some ways that I can help her though it after being there myself, however I can't deny all the emotions that I know she will be going through as well. Fortunately I will be able to be with her during the entire stay. I have a greater peace of mind knowing she will be receiving the best care possible with the best doctors! My husband is going to fly down with us and show her (us) the city for a few days. She is a single mom and never gets to go away on vacation so I want her to have a few days to decompress before her surgery. I can see myself getting very protective over her. Many friends have commented on how it will be so hard for her to leave her 3 yr son and wondering how he will be cared for. I get very defensive and tell my sister that she is entitled to getting the best care and that our family will be here to help out with her son. I know people mean well I just don't think they always realize how it come across when you are dealing with a lot of other emotions around the situation. So the planning is now in full swing. I can only continue to say wonderful things about the Center!
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KerryA, I am so happy for you and your sister. We sure have to ignore a lot of comments from others don't we? No one really understands what it means to have found these wonderful doctors. We all do it knowing in our hearts it is the right choice. That's why supporting each other through this group is so special. I will keep your sister in my prayers. Between your family and the best doctors, she is in great hands!
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Hi all. I'm newly scheduled for delayed diep + gap in April. It's great to read your stories. I was diagnosed 1/4/13 and have spent a year fighting. I am so very excited and afraid for the next step.
motherandchild5 You won't know the size until you have the surgery. Radiology is not an exact science where breasts are concerned. I live every day wondering if the (post-surgery) chemo worked. What I do know is that I did all that I could. You have to go with the doctor that you trust and proceed with the recommendation 100%. It's never wrong to get more opinions from trusted sources until you settle on the one you believe in.
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yahoo!!!!!
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