NOLA in September?
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SNB and taking 3-5 nodes....Hmmm. My local breast surgeon (who is the "best" locally) did the same thing as Dr. LaGuarde during SNB. There was ONE sentenal node but she took THREE. (and now I wonder if she took Five!!! Given all this talk of a clump! I hate this!!!) She said the same thing, "I took two more that were nearby", sort of thing. I never gave it a thought at the time, I was told by this surgeon that with a SNB I would not get lymphedema. WRONG. It is in my side/ trunk. It is not bad, but it is there. It is very bad after surgery which causes a lymphatic reaction. I also had rads and they fried my armpit (even though my SNB all three were clear!!). I was also told that having repeated surgeries could cause the lymphedema. But the bottom line, I believe, is that I had nodes removed and this is the cause. (This is what my lymphedema therapists say!) All this makes me crazy.
When I had the dye injected, they shot me in a couple of spots on my breast. My understanding is that all the time, cancer or not, your lymph system is "draining" from your body in that area (it's a huge area, from waist to chest, front and back on that half of your body) draining into your armpit. the dye goes in the day before the surgery, and is draining, and they use a gieger counter to locate the sentinel node. I HATE IT that my body has been damaged in this way!!!
However, I have been told my Lymphedema is very mild and also, I have been able to "control it" by using weight training (which is really good for your body anyway - so this keeps me a regular in the gym!). If anybody is interested in this, let me know. (there is also research apparently to support this).
I would not recommend SNB on a prophylactic side. My 2 cents. Keep your friggin nodes!
Oddball, I don't think i have your surgery listed above and if you want me to add it, give me your specs pls in the format that is above. (You don't have to do this, of course, just offering).
camiam - I added your Aug 6 date above. (Who is your Doc?) Can you explain more about this? "... but I'm also having a mini-flap taken from my abdomen to augment my left side so that it matches the beautiful new right-side reconstructed breast." I never heard of this!! That side has not had any surgery before? Your "regular" breast?
SANDY!!!! I remember you reporting on this recently!!!! I am in size 8 slacks from Jones New York!!!!! (I could not BELIEVE IT!!). I am 5'8" so tall, and always a 10 were my "slim slacks". But they were a bit loose, and I thought, what the heck, may as well see. AND 8 FIT!!!
Minn, What were you doing feeling Pam's butt anyway? Just sayin'!!!!
- Jul 15 - Melinda413 - Stage 2.
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Yea Minn...I really do not remember this. I know my butt is numb...How many people are feelign my butt & I dont even know it? LOL
I cant even put something in my back pockets anymore....I cant feel it & It take me about 5 trys to slip my phone or something in my back pocket..often I have to use my other hand to find the pocket so I can slide something in my pocket. I feel like a klutz not being able to do this simple task like I used to.
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Well, darn the luck, but my timing is good...
I talked to Celeste about pushing exercise and, in particular, stretching the area of my hip incisions. She said since I am over 15 weeks out from Stage 1 that I could basically go for it.
I have been swimming laps for over a month, walking about an hour every day with short forays into jogging and working with very light hand weights. Two days ago, I decided to start back into a very gentle15 minute yoga routine. It looks like the downward dog was not a good idea.
Although I did not feel any particular discomfort, the inframammary (sp?) fold under my left breast looks like it has started giving way between center and sternum this morning. I am so disappointed that I am not able to continue with stretches to that extent. It felt so good! Has anyone else had this problem? Should I have waited longer and how long next time? Should I even bother with exercising to this extent and be more respectful of the limitations of this reconstruction?
The good news is that I return to NOLA in 2 1/2 weeks and have been told that Dr. S can fix this glitch. (Hope to see both Sheridan & Minn!) Sure beats doing this after I have completed Stage 2! Besides this, my recovery has been, luckily, uneventful. I have not been able to lose the weight I had hoped, but have tightened up and gone from a tight 16 to a loose 14 pants size.
Will I really get a chance at a tummy tuck and lipo? Does insurance play a factor? Guess it would be smarter to email the Center, huh? I will do that tomorrow.
I have been in tears off and on for the last two weeks. I do not know if it is pre-surgery gitters, hormones or "run of the mill" cancer blues. What a roller-coaster this is.
Best of luck and a beautiful, painless Stage 2 next week, Melinda!
Sue
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Sue, I started yoga way earlier than that, after stage 1 and stage 2, at first very gentle, but I never had any issues with the intrmammary fold (or however you spell it!). I am so glad you will be down there for stage 2 and get it fixed up. Ask Dr S, but I am sure you are allowed to exercise before 15 weeks. I think it is good that if this was going to happen, it happened now right before phase 2.
Sue, you will also likely drop more pants sizes after phase 2. Lipo will happen, ask for what you want, though they will be very generous. But it takes a long time (seemingly) for you to unswell from stage 2 and lipo. I am now 7 months out from stage 2 and really starting to see some pants size dropping. I remember at 4 months my old pants still did not fit right (I had the ab plication and there was a lot of poofyness and it took a long time to heal up!)
Pam, my butt is also numb. the numb area is really large too!! feels really weird. I wonder if people are groping my butt and I don't know it either!! ha!!!!
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Sue, hang in there. I think I had some days like that prior to stage 2. And I agree w/Spring - my, if anything were to happen, what good timing!
Jen - The Intercontinental!!! That was the other hotel that was available through my points rewards. I ALMOST booked there! That would have been fun. Well, either way, we won't be all that far from each other. You will probably kick my behind on the half! I am back in training for another tri the end of this month, then hopefully another century (biking) again next month, then either one more century or another tri in Sept. Maybe I ought to dedicate some of this time to training for long distance running... Now there is a novel idea...
I agree w/MackSix - rubbing your incisions will help a ton. I rub my butt everyday...LOLOLOL... Okay, w/scar cream, but still I am massaging the scars. In PT we always instruct people to start massaging the scars once all the scabs had fallen off and everything has closed up to help w/scar mobility, so I have been taking my own advice and diligently doing this daily. Too bad I didn't take my own advice on the LE. Spring, I am so happy that your LE is controlled w/exercise. I have tried every remedy possible w/the exception of accupuncture (which I think I will try, just not on my arm) and surgery (which I will wait until more studies are done). For some reason I have a LE that does not respond well to any of the conventional treatments... but on a good note, it hasn't gone too crazy out of control either (knock wood). Its not great, but it could always be worse...
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It's so bizarre and funny to me but this time I have so much faith in NOLA and the Drs there and know they will take awesome care of me that I really am not freaking out about the surgery at all. I'm the type that researches ewverything down to the T and knows whats going to happen- at stage 1 I knew exactly what was going on. But now when people ask me what i am getting done at stage II I keep saying whatever Dr S decides!
So I'm choosing instead to freak out about the small window of time i have to get tothe airport on Tuesday morning. We can't leave until my hubby gets off of work so I'm slightly panicking about that. THink good no traffic, no construction and NO speeding ticket thoughts for me that day!
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Spring- thanks for adding my info! Dr S is my surgeon, sorry!
To answer your question, I have two reconstructed breasts now (both are GAP flaps). My left side I had done in 2001 by Dr. S. At that time I was a very, very thin young woman who had not had children yet, so my recon breast was a size A cup to match my right side. I was so thin that the outer right quadrant of that flap "failed", and at the time, Dr S couldn't fix it b/c I had NO body fat...none...he was very frustrated. So 8.5 yrs, two kids, and 30 lbs later, this year, when I had my right side mastectomy, he made my right side a nice, beautiful C cup, and injected fat into my left side to try to fix that outer right quadrant that had failed. It helped, but it is still "deficient" (his words). So the plan for stage 2 is he will take a "slice" of fat from my abdomen, along with one vessel (vein? I can't remember now what he said, but it is just one this time, not two like a full flap), and put it in that deficient area in my left recon breast...and he thinks with that, it will fix the deficiency and give me two lovely matching breasts. We'll see. He said it won't be as rough as a stage 1, but will be sore. I HOPE that after he takes the slice of fat from my tummy that he'll tighten up the skin nicely as well...and lipo any extra fat...:) I guess I'll also be getting my nipple done on my right side, and the dog ears/dents fixed on my butt. I should be nice and sore, but it's worth it!Sue, whoah, that's crazy! I'm glad that's able to be fixed. I don't think it's the norm. I started back (slowly) to full weight training at 7 weeks post stage-1, and have had no issues at all. Hopefully once it's fixed, it will stay put.
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Haven't posted for awhile and a lot has happened here. I am scheduled to have stage 1 with DR D. Aug 3rd. 2 weeks ago, my husband had a heart attack at work and died (he was 54). Not feeling up to such a surgery I decided to postpone for now. My insurance was through his job and when I talked to human resources at my job I found out my insurance would only pay 10% for any procedure done out of network (I work at a big hospital so basically if you don't have stuff done there, they don't pay). So, I think I will be paying COBRA through his insurance through the end of the year (to get stage 2 in too) and proceeding with the surgery.
I had canceled my hotels but talked to Katie and she helped me set things up as I am bringing my oldest daughter as caregiver, My younger kids are coming as well because I don't feel I can leave them at this time. Katie was GREAT! She promised they would take good care of us. Now to call my oncologist to get all the pre-op stuff done. I am so emotionally exhausted, but not sure how else to get this done. I am taking time off work now, so more after the surgery will be unpaid. It will all work out I think but GEEZZZZ.
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ladybug, oh my goodness, what a horrible thing to go through. I can't even put into words how I ache for you and your family! Please know that you're in my thoughts as you progress through the surgeries, as well as adjusting to your loss.
NOLA will pamper you and make sure all is well.
Anne
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Nordy, I rub stuff into my scars every day too.
Melinda, you will get there! It will be fine!
Cam, that is just fascinating! My rads side is deficient, but nobody ever mentioned a teensy flap, ha! Thank you for that info...
LadyBug, I am so so so sorry to hear your news. My goodness - glad you looked into it and are managing to go forward with your surgery. I am sorry for your loss.
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LadyBug,
I can't image how you can manage all this at one time. I am so sorry for your loss. You will be in my prayers.
I am so glad that you are able to go ahead with the surgery. You will be so happy with the results. It just gave me hope for a future.
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LadyBug,
I am so sorry for your and your children's loss.
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Ladybug, I'm so sorry to hear about the loss of your husband. Keeping you and your family in my thoughts and prayers.
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LadyBug - I am thinking of you and praying for you too.
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((((ladybug)))) Love and light surround you and your family.
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(((ladybug))) I am so sorry for your loss.
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ladybug I can not Imagine what you are going through. I am very sorry to hear about the loss of your Husband. My Thoughts are with you & your family
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Ladybug, I am so sorry for your loss and what you are having to deal with right now. I wanted to let you know that I had Dr. D for stage 1 on June 15. He will be wonderful for you, so that is one thing that you don't have to worry about.
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Oh Ladybug, I am so sorry.. Where will you be staying while you are at NOLA? Maybe I can come and see you. I have stage 1 on 07/29 and will leave on 08/05. Hugs to you and your children.
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Thanks everyone. This is really a tough time, but got COBRA info today and I really think this is the best way to go forward...
Sheridangirl, I'm not sure yet where I am staying. Was going to be at Homewood suites but they are full. Katie (from NOLA) is working on it for me so it is one less thing I have to deal with...it may end up being Staybridge Suites, but we do want something with a little kitchen area. I will let you know as soon as katie figures it out.
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Ladybug 50 I am so deeply sorry for your loss.
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Dear Ladybug,
Please accept my sincerest condolences...I am so very sorry for your familys' loss.
Marcia
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Ladybug - I am so, so sorry about your husband. No one should have to go thru as much as you have. You're a brave woman to be moving forward like this. My stage 2 is on July 30th and I have my post-op visit on Aug 2nd. Maybe I'll see you there on your pre-op? If so, a hug will be waiting for you...
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Ladybug - I am so, so very sorry for your loss. You are exhibiting such strength and perserverence right now. I am sending ((((hugs)))) and thoughts and prayers your way.
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LadyBug.....I am so sorry. You have my number.... I am nearby... fyi...except...I am out of town until the 17th but will be back in Indy then...if I can help or if you want to go have a drink or dinner or coffee or whatever.....0
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Sheridangirl - how is your shoulder doing? I've been thinking about you. My stage 2 is the day before yours.
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LadyBug: Big hugs as you go through this. Can't imagine how you feel, but sense that you have an amazing strength - and family - that will pull you through.
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(((((((ladybug)))))))))) there are no words to comfort you in your loss, but there are lots of warm hugs and prayers from everyone here! Good luck, and hang in there!
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Ladybug, I can't express in words how sorry I am for your loss. I know NOLA will take care of you. We, ladies on this thread, are here for you. Sending Hugs and Prayers to you and your kids. I truely believe God does not give us more than we can handle. So stay strong Sally
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Gosh, way too much! Ladybug feel the love.......YOu were on before? Somehow I remember your name? Or am I nuts?(Oh well we all know the answer to that!). You will be so well taken care of. I am glad you have family going w/ you but I can't go on enough about how well I was treated- all the love and support I rec'd at the center when I went solo for stage 1. I'm single, no kids and honestly having my own siblings/extended fam there would have made it worse.......Do what will make your healing process best and KNOW they are committed to helping you make this happen in the best way possible. It's gonna be good!
Nordy I am so excited!
Oddball-I sent you a pm
Lastly-got an e-mail this pm my cousin(maternal) was diagnosed w/ BC has 1 lymph node involved and will need mastectomy.......she also has had cardiomyopathy for MANY years....They couldn't do an MRI because she has a pacemaker but apparenty her petscan showed no mets and they said her CA had probably been growing for yrs.......uggggh...she's in pacific NW area WA state or Portland. Yikes nothing good sounding about it....we're not terribly close but after I get off I'm e-mailing her...Please add her to your prayer list!
Ok, stay cool!
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