Mastectomy Sept 2011
Comments
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Oh Sarah, just now seeing your other post. I have never seen the medical oncologist - doesn't appear they think I need to be referred since I am DCIS only post BMX...I will ask the BS next week when I meet with her Monday prior to my surgery Tuesday. Ugggh. I know she is getting irritated with me and all of my questions! Plus, I don't think she's too happy I went elsewhere to get my BMX (I only did it b/c of the plastic surgeon.) I think there may be some territoriality going on here...or maybe I'm just being paranoid!
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Odie, glad to hear you finished your final fill! And sending all you other TE-filling ladies best wishes for minimal discomfort and a final fill soon!
Olga, hope you are feelling better today. Chemo is "cumulative" so each cycle may hit you a little harder, and I remember being VERY frustrated after the last one, thinking I should be feeling good after about 3 weeks, but it took much longer. Sending prayers for patience and healing your way.
Jaysmommy, hope you are getting some answers.
Lorraine, hang in there and get the information you need from the rads folks. I know that the numbers I was given were "significant" but when put into perspective for ME as an INDIVIDUAL, that "significant" reduction in local recurrence was not associated with any "significant" survival advantage, and did have "significant" risk of adverse effects, both short- and long-term. So I got the numbers, and then looked at them as they applied to ME. I hope you can find someone who can do that with you, because this is a decision that you have to be at peace with once you make it.
I hope everyone has power by now - it IS Tuesday!!!
Greetings to Sarah, Caryn (I know Saturday can't come soon enough!), Margie, Silia, groovygirls, diana, and everyone else. Warmest wishes for a good Tuesday night and a good day tomorrow.
Today was a good day for me - had a great time doing guest lecture for 75 first-year pharmacy students, met with advisees, had a good PT session. My range of motion is back to normal, still have some strengthening to do, still have to work on the cording, but making progress!
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Lorraine,
That BS answer from the RO is so maddening! She/he should have just said 'I don't know" or 'I'm to busy to really give you an answer'. But what you are looking for is out there! I met with a fantastic RO before my BMX who gave me exactly the type of info I was looking for and what you are looking for, specifically the differences in % of recurrence with or without a particular treatment.
She ran a program from the Sloan-Kettering cancer institute called Breast Cancer Nomogram:DCIS Recurrence. She put in the factors for my case, then gave the probability of recurrence with no further tx, with both rads and hormones, hormones alone, and rads alone. This was exactly what I needed to make an informed decision, and this is what an RO should give you! Its out there, you just have to find someone who is up on research and is keeping up with these programs so they can give you info to make an intelligent decision! Don't give up!
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rk, thank you SO much!!!! Wow, it is so helpful to know there is a program like that out there. I'm on a mission to get some concrete numbers from SOMEBODY, d*mmit!
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rk, I found it...but the tool only predicts recurrence for pts s/p lumpectomy, not MX. I completed it anyways, just out of curiousity sake, but I don't think the results are valid. Chance of recurrence without rads or tamox in 5 yrs 25%, 10 yrs 38%. With rads or tamox 5 yrs 10%, 10 yrs 16%.
Here's the tool - it's really cool. Wish they had one for post MX.
http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspx
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The figures she gave me were also depressingly high for recurrence. When you factor in our young age, comedo necrosis and high(er) grade DCIS, the odds of recurrence are just not that good especially in the long term. This strenthened my decision to do the BMX. We need to find a similar tool for close margins post MX.
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Hey friends - only a minute to post now, need to feed myself, but just wanted to report I got the "all clear" from PS this a.m., so I can work my way back physically! Thrilled! I may choose to have things tweaked in 6 mos. or so (the implants are pushing skin up in that little spot between my armpit and my breasts, in the front of my chest, and she could also lift my right nipple up a bit so it's more in line w/the left - that's leftovers from my prior cancer, hard to correct initially but easy once swelling, etc. has gone down).
Anyway - blogged about it here http://betheweeble.blogspot.com/2011/11/cleared-for-take-off.html
Tired & hungry but happy to be moving in a foward direction . . . .
Sarah
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Sarah,
Such good news!!! Great blog! Shuffling your way back into exercising??.. Hilarious! Slow & steady wins the race and we are hear to cheer you on each step of the way!
Dancetrancer - I hope you can get the answers you deserve.
Finally feeling better today as the last few days post the final fill have been seriously uncomfortable. Excited to hopefully complete the surgical process next week (exchange surgery 11/17) and then return to work on 11/21. Can't wait to get back to some semblence of my normal life prior to BC...
Healing hugs to all......
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Sarah!!!!!!!!! So excited for you!!!!!!!!!!!! OMG, what a glorious day to be DONE! You don't have to go back for 6 months???? So unbelievably AWESOME!!!
Odie, so glad you are feeling better - and your exchange surgery is next week - WOW - so much to celebrate on the board today! Very exciting!
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Hi Guys. Quick hello before I conk out. Been trying to keep up with all your posts but I'm still struggling with low energy and variable stamina. It's been more intense since I started up my freelance gig again. I'm just not moving at warp speed (hell, anything approaching any speed).
In addition to my renewed work pressure, I had to work with my brothers to move our mom, who has Altzheimer's, into the memory care ward at her assisted living facility place.
It does my heart good to hear of the progress you're making and the strength with which you're all facing the detours and rough patches that crop up along the way. Amazing to think that we September women are in November already!0 -
Lorraine - thinking of you . . . hoping the squishing wasn't too awful?!
Stephanie - no wonder you're fatigued - that's a big deal with your mother - takes a lot of energy, so that, working again, plus general recovery fatigue? Yeah, you must be pooped. Hang in there, and rest when you can.
All - in the spirit of being cleared, I did a very gentle, 20 minute mile walking workout this a.m. (Leslie Sansone DVD - if you don't know her, she's pretty good - I got these DVDs when I was rehabbing from arthritis and getting (literally) back on my feet). I did the arms, gently, and probably only 1/2 as many as she did. No weights for me today. I see my PS in a couple of hours and want her to tell me what might be good. But man, was it GREAT to move my arms?! Please say an anti-puff-Sarah prayer for me for tomorrow . . . it'd be so nice to be able to keep this up.
Hope you all can squeeze something good out of your day today!
Sarah
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Sarah -- yea to getting to start working out - that's one more step to a "normal" life.
Lorraine -- I hope the mamo/MRI were not too painful. Good luck with the 3rd opinion and getting some answers.
Odie -- yea to the last fill and exchange 11/17. I will be sending good thoughts your way. Getting back to work does help with getting back to "normal" life.
This week I had fill 3. I am now wearing my pre-surgery bras (large A-small
. I have two more fills. I am hoping for a small C. My PS overfills to give himself some room to work. Up untill this fill DH and I could see the edges of the TE. This fill has them more rounded shaped and wow the skin and muscle are streatching big time. I have had to move back to the recliner for the last couple of nights. I just keep telling myself keep your eye on the prize - exchange surgery and gooshy boobs rather then these rock hard things.Sending everyone gentle hugs...
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Thanks everyone. Mammo's this morning - total of about EIGHT. All were ok except the last 2 or 3 where they were trying to get in and see one spot closer. Uggh. I survived, though.
MRI tomorrow.
Ugggh. Ready for it all to be over.
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Margie - getting closer w/those fills, girl - keep your eyes on the prize . . . lovely, softies coming your way. Those tissue expanders remind me of tupperware lids - ouch! Sleep wherever you can right now . . . hope you get rest tonight.
Lorraine - happy to "hear" your voice, glad you made it thru 8 (8!?) views. That is nuts. I know you're dreading the MRI positioning tomorrow . . . use all your relaxation techniques and take it one minute at a time . . . hopefully it'll go smoothly and you'll be on to your weekend. Treat yourself to something good tomorrow when it's done?
Wishing everyone a peaceful evening - I'm off to bed - up so early today, plus the extra activity = fell asleep reading to my daughter. Time to put myself outa my misery. Night!
Sarah
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Good morning ladies. Hope you all rested well last night. I don't have classes today, so am taking a more leisurely approach to the morning, having tea and toast, looking out at this beautiful frosty morning with lots of birds at my feeder just outside my kitchen window. The sun is sending long shadows that contrast with the bright illumination of the red/orange/yellow treetops. Am finally feeling a bit more human and am so thankful for the support from all of you.
Question about physical therapy: anyone having myofascial release or scar release? anyone have axillary cording that they are working on? My PT sessions seem to kind of "take it out of me" and although I think in the long run, this is good, I am pretty uncomfortable the night after a session. My range of motion is 100% (with a little extra stretch effort!)
so I am beginning strengthening. And I seem to be getting mixed messages about getting a sleeve to prevent LE vs. I am "at low risk and don't worry about it." I am off to visit family for the weekend, will check in with you all on Monday. Gentle hugs and best wishes for a good weekend.
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Happy Friday ladies!
Lynda - Glad you are feeling better and wish I had any witty input on the pt question but I havent had any experience with that. Hope someone else can chime in during the weekend for you. Have a great weekend with the family.
MarcieC - Hang in there girlfriend. As you said, eyes on the prize! I hear squishys are sooo much better and you will get there. I know I won't miss the bricks and promise not to gloat.
DT - Congrats on soldering thru the mammy yesterday and wish you well with the MRI today. Gentle hugs to you..
Sarah - So happy for you to get back to exercising. I know it makes you feel better physically and mentally as you get stronger each day.....
Theresa9 - So glad to hear from you and hope you can catch a break soon. Wishing you all the best with you mom and continued recovery.
Happy Veterans Day all! May we honor those who serve..
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Hi friends - school holiday today so I've been sucked under w/entertainment and food prep this a.m.!
Lorraine - thinking of you in that tube - hope it is going well . . . .
Linda - my PT does very gentle scar tissue release - I've had the other and right now I think that'd be too much for me to handle - clearly you're more woman than I am! Seriously though, my PT does always say "scar tissue is the enemy" here . . . so if you can stand it, it's great to break it up, no matter how it gets done. As for the sleeve issue - there are no clear answers. Back in '01, this very same PT hooked me up with a sleeve for my left arm, told me to wear it whenever I exercised and whenever I traveled (car or plane - car b/c your arm is down more of the time and might swell and plane b/c of pressure changes). 10 years later, the thinking has changed such that she doesn't think I need a sleeve for that side at all (I've grown lazy over the years, BTW, haven't worn a sleeve since '04) and that I can still get blood draws/BP taken on the right despite my one node being removed - the higher risk is for more nodes removed, plus rads makes the risk go up more (on left I had 3 nodes removed + rads).
Now, if you go to the lymphedema board here on BCO, you will, of course, find women who only had one node removed and have LE . . . no one knows why some women get it and some don't ('cause there are women who've had full AND and don't have LE, either). One school of thought is that some women go into this w/compromised lymph systems, so that when they take even one or two nodes, the works get fouled up enough to trigger LE.
Bottom line for me: I'm playing the odds. Going to ramp up my strength training gradually (everyone agrees with that one), watch for changes, stick to my right arm for sticks & BP and do a little praying to shore it all up. Getting blood draws from my ankles seems like too much for me - maybe I'll be eating my words one day, but if it's one thing I've learned in living w/this for 10 years already - you gotta LIVE your life, too . . . .
Just my $.02 - every woman has to make the choices she's comfortable with, of course!
Sarah
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Lorraine -- good luck with MRI today.
Linda -- I had the same quesitons about sleeve / no sleeve - Sarah makes a good point you gotta live your life. -- enjoy your time with the family
odie16 -- my TE has slowly settled down - Thankfully -- my next fill is Tues and if we stay on track it will be my 2nd to last one. DH wants me to take a week off, but I just want this part done and over - I know you all here can understand that.
Hope everyone has a good weekend...
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Linda - I've been doing my own scar release on my cords and initially it was quite sore in the armpit afterwards - felt bruised - even though I was very gentle with myself. Is that what you mean by being uncomfortable the night after PT? If so, mine definitely improved with each subsequent treatment. Maybe you could ask your PT to teach you how to release them yourself - if they don't tighten up as much between treatments, you may get rid of them faster. Also, check with your PT to make sure the amount of soreness you are having afterwards is normal. He/she may need to adjust the level of pressure down a bit. Also, ask if you are allowed to put ice in the area with padding.
Regarding the sleeve, my friend is LE PT, and she does not advise it as a preventative measure. And Sarah - yes....gotta live your life - I SO agree!
Well, I survived the MRI today without much difficulty at all. The arms were actually much lower than I recalled so no trouble with the shoulders. The worst discomfort was the needle...she warned me it was gonna be a big prick...I said "holy hell!" when she put it in, and we all had a good laugh! LOL You gotta keep a sense of humor. I'm pretty good with needles, so I think she hit something extra sensitive on this one. I also picked up a copy of my mammo report from yesterday. I was wrong. They didn't do 8 - they did 11. That is just crazy!
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Lorraine - you lost count of the mammo views - that is a BAD sign!? LOL - you have been scanned enough for one week. Glad MRI wasn't as bad as you'd anticipated, despite the needle!
Sarah
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Happy Sunday ladies.
Hope everyone is enjoying a healing day of rest...
MargieC - Good luck with the fill on Tuesday. I told understand wanting to just be done with the process. I am counting down to exchange surgery Thursday and return to work next week.
Wishing everyone a good week and continued progress.
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Hi friends - hope the week is off to a good start.
Lorraine - now I've fouled up and I can't remember what's next for you . . . fill us in when you get time. Been thinking of you, despite my brain farting.
Caryn - been thinking of you and that tube, how're you doing?
Week 8 for me, and I have to say, the leaps are higher now than ever. Did a full-on 30 minute cardio session this a.m., then went out to lunch, then took my daughter to dance for the first time since surgery (it was observation day, so I got lucky that I could watch), then came home and heated up dinner that I made last night . . . and I'm still standing. Tired, but not wiped - hooray! We'll see what tomorrow brings, but it's so nice to be able to do stuff again.
Question - today when I was showering I noticed a little blister-like thingy toward the end of my scar on my left breast (the scar is on the top of the breast there b/c they went in thru my old scar) - anyone seen anything like this? It's sorta red around it too . . . was out most of the day today, but if it's still there in the a.m. I'll call PS's office - just wondered if anyone has seen anything like this. I put some Bactriban on it, just in case it's infected or something.
I'm off to read junky magazines and fall asleep early . . . hope you all are doing well - and that it's a good sign that the thread is quiet . . . .
Sarah
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Hi all,
Went to doc on Saturday . Lung is fully inflated but still seems to have a tiny leak into chest cavity so tube is still in. I go back on Thursday and it will hopefully come out.PET scan also discovered odd spot on top of left femur. MRI didn't provide any conclusive idea as to what it was. Today, I had a CAT scan guided biopsy. Prevailing opinion is that it is nothing but will have to wait for path report. At this point, I looking forward to starting chemo! Hope you are all well and happy.
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Oh, Caryn, I am so sorry that you did not get that tube out yet! Special prayers for you tonight for lung and leg, as well as rest and peace for you. When do you start chemo? What will you be having?
Thanks for the PT suggestions all. I had a break over the weekend, but was pretty active with family etc., so pain was up quite a bit last night. Have PT tomorrow, so will discuss with her.
Sarah, you make me feel like such a slug, but I am still a couple weeks behind you, so hoping to catch up to your activity level sometime sooner rather than later! I am DEFINITELY doing better now than I was 2 weeks ago!
Loraine, glad you survived the MRI! I just imagined myself at a STOMP concert, lots of percussion rhythms, used it for a little rest & meditation. And I can certainly understand the losing track of the number of mammo views.... they seem to say "just one more..... just one more..... etc." and by the time they are done, it's tough to get a final count!
I had a great time with my family. My 3 sisters had lots of questions regarding using tamoxifen as a preventive. My mother had UMX 18 years ago, had her regular mammogram last week, and they found something that needs to have "additional imaging." But they didn't say anything more, so I am hoping today went well for her. We don't need any more of this BC crap in the family right now. So we had a great visit, lots of food, lots of kids around, and lots of love. Sharing the love with all of you tonight.
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Ladies! I finally got power restored on Wednesday last week and have been cleaning like a fiend ever since and today started back to work (although I am working from home this week). 900 emails so I was quite cross-eyed at the end of the day.
So Caryn - Praying for you and that TUBE!! Oh my gosh - you seem to be handling it pretty well - considering how much it must suck - stay tough girl - and come here to cry and vent - we will send you love from wherever we are!
Linda - You are doing great - we are women - we want to jump up and run and we just can't but we can make improvements each and every day and it sounds like that is exactly what you are doing! Regarding your PT questions -according to my " angel"
the sleeve is really not necessary for low risk - but she gave me everything to read about risks -- the importance is awareness - and doing the right thing if anything should develop. The thing that my PT stresses about the session is really there should not be PAIN involved ... stretching, tired, sore... but PAIN is not good - anything that hurts for more than 10 minutes after you finish is too much... So she is always stressing this to me with all my exercises and sessions with her. Sarah - don't know about the blister thingy - but I do know that anything red is bad... so get it checked! And DANG when you got the GO light - you WENT!!! Good for you - but please don't overdo - we all know how you can be!!!
But good for you for taking full advantage of what you CAN do! Now that the power is back and we have heat upstairs I am trying the bed again and I am doing much better.... still on my back - side sleeping is painful - but I am finally making it through the night up there. (now I have to listen to husband snore!)
I have my second fill on Thursday this week - hopefully my right side will start to look more "normal" and less squished. NOT looking forward to the pain again though - just when I have adjusted to the changes from the first fill! Oh well - this will pass...
Okay - ladies - I am sorry I have been missing for so long - thinking of you always!!!
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Sarah - thank you for thinking about me! My surgery is 5:30 a.m. tomorrow morning. It is only supposed to be about an hour; I'll have anesthesia, but no intubation, so this should go very smoothly and be nothing compared to the BMX, LOL! I'm feeling really good about it; I know it needs to be done due to the dirty margins, so areola be gone! You sound like you are doing WONDERFUL! Yay!!! So happy for you! You sure did have to be patient, but now it is really paying off! Regarding the blister at the end of the scar - no blister for me, but the end of my SNB scar did get red and sore - and it was just an internal stitch coming out. So hopefully that is all it is! Still, better get a phone call in to be sure.
Caryn - wow, so bummed you haven't been able to get that *?!*!! chest tube out! And, also, sending lots of postive energy and thoughts to you regarding the femur biopsy! How are you holding up emotionally with all of this? It would be so much to handle. We are here for you and please let us know as soon as you find out something!
Linda, sounds like an absolutely wonderful time with family! Good for the spirit to be around loved ones!
Tina - 900 emails???? Good grief!!! Glad you power is back and that you are starting to sleep better...despite the snoring! LOL Good luck with the fill - hope it is less painful!
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Good morning, all!
Lorraine - hope you are done by now, feeling decent, and thinking about when they'll release you to go home . . . I had a feeling you had something today, but again, could not remember - needless to say, you've been in my thoughts anyway as you nail down all these final details. You sound like you're in a great place about it all, and that, as we know, is more than 1/2 the battle with this garbage.
Caryn - really? really? I am so ready for your to move forward too . . . it's a sick, sick thing when you look forward to starting chemo, but I would be the same way - let's make progress, darnit!
Linda - your family time sounds restorative and great - makes up for some of the fatigue & pain, at least. Here's hoping your mom's stuff turns out to be just a firedrill . . . they never let things go when you've had BC, so hopefully they're being cautious and she will be in the clear 'til next year.
Tina - 900 emails?! Yikes. Excited for you in the bed again - the side sleeping will come at some point, this is a gain, at least! Funny you mention snoring, Dave was going at it last night and I practically had to shake him awake to get it to stop. I even had my earplugs in!? Here's hoping this week's fill is easier. What's going on with starting work again? I imagine you're feeling like you're just getting back on track again after the power outage. Hope this week is MUCH less eventful than the past two.
Well, I'm tired this a.m., but not flattened, so considering all that I did yesterday, I'm chalking this up to a win. Taking it easy today, don't worry, Tina! Have PT at 11:15 but other than that, a gentle walk this a.m. and my stretching routine and then getting my DD after school (little walk there too). You gotta remember, I did NOTHING while you guys were walking, outing, etc. . . . so the pump was primed!
Here's to a good day for all.
Sarah
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God morning ladies..
Caryn - I am so sorry to hear you still have that blasted chest tube but am glad you are making progress. Hope you continue to make progress by leaps and bounds via one foot in front of the other. We're here for you.
Tina - Welcome back to the 21st century. That power outage was incredible and way to long. Nice to see your technology (900 emails, ugh! ) was patiently waiting for you.
DT - Hope you are now home snug in your own bed resting and doing well postoperatively. As Sarah said, you have the right attitude and sometimes that seems to be half the battle.. Gentle hugs...
Olgah - Haven't heard from you lately and just wanted you to know I am thinking of you & wishing you well.
Sarah - You had a full day yesterday and I am glad to see you weren't overly tired. See we told you it would take you no time to catch up...
Lynda3 - Glad to see you had such a good time with the family. Family is a wonderful thing. Sure hope your Mom's test is just overcautious and no big deal. Enough is enough, right?
I am counting down to hopefully my final surgery on Thursday but have a stupid question.I keep hearing about how the implants will "drop & fluff" over the next few months after surgery. What does that mean? I am assuming it means they will settle into the pockets, right?
Hope it is a Terrific Tuesday for all.....
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Odie - I asked my PS about "drop and fluff" and she looked at me like I was a lunatic! So I'll tell you about my experience - I didn't have TE's, so it may be a little different, but mine have changed a bit over the last 2 months - gotten more naturally breast-like. In fact, on the right side, there is really no way at all you'd know anything was going on there (left side is a little high and tight b/c that's the one that had all the junk done on it previously). It's pretty freakin' amazing. Two days 'til squishies!!
S.
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Thanks for the info Sarah!! You are the breastest friend EVAH!!! Hugs!!
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