February 2010 Mastectomy

Kayne

Debbie-- oh you poor thing, with all you had to go through--  But you did give me a chuckle regarding your son.  I can just imagine getting to that point of exhasperation.  It's just easier to show them.  I think my daughter is very curious, she's 16, I just don't want to scare her.  I haven't shown her yet.  When I was first diagnosed, my husband and I were very up front and honest with the kids, so they knew we weren't hiding anything.  Of course my daughter was very upset, my 14 yr old son,  takes in all the info,  and my 12 yr old son would giggle and smirk every time we said BREAST.   We just had to laugh as well.  He now can here the word without smirking!  But it did lighten things up. 

The meeting went ok.  Of course getting dressed was the issue.  I tried to stuff  a bra,  but the band was bothering me and I changed into the cami with the poofs and put a vest on.  the cami and poofs are very lumpy.  I didn't want to draw attention to them.  I am concerned with the warmer weather.  The cami's i have will not work as there are too many lines and lumps.  My husband said Bob wouldn't look at me and Bert, who is also a friend didn't come to kiss me. 

Take the pain meds if you need them.  I was not taking them and they do help.  I am 3 weeks out and still uncomfortable- sore really.  Also i am finding the incisions from the axillary and snb are sore.  Can only do so much then I need to rest.  I am in  awe of those that are back to work.

It's very interesting how each dr is different.  I was not bandaged, could shower as soon  as I got home, (48 hours later) and had my first fill with drains in.  Just FYI-  I live in NJ.

charua

Hey - sorry for the really late update.

I had my prophylactic bilateral mastectomy on Feb 3rd. My path was 100% clear so I am glad I did the mastectomy before anything could happen. I had one step recon with Alloderm and implants. The PS put in 600 cc's which I personally thing is too big for my frame. I ended up with one side being really high and swollen. The nipple ended up dying on that side.

I had another surgery on Feb 23rd to remove the nipple from one side and to replace both implants with 475 cc's which I feel a lot more comfortable with. I got my drains out this past Friday and have been cleared to drive. I don't really have much pain but am more tired than usual. I still have a lifting restriction which is a hard thing to explain to my 2 year old!

 In 6 months or so, I will get my new nipple through a skin flap and tattoo.

I am happy I went with the one-step even though I needed having a 2nd surgery. The month of Feb was rough but I am glad to be done (except the nipple).

Love reading everyone's updates! 

Faith316

charua, sorry you have had such a rough time.  Hopefully it will be smooth sailing from here on out.   I bet some chocolate cake on Tuesday will make you feel better! 

guardienangel

hey everyone! how was your day? mine was ok... while cleaning my drain .. the only one left YAH!... it looked painfully RED damn it! and oozy on the bandage.. I go to my PS on tuesday and am stilling my antibiotics, so hoping i am ok.

why is driving so hard?!?!??!? i can hold my coffee cup, and eat a bowl of cereal and whatnot... even play on my laptop.. so why not my driving? hmmm???

i hope and pray for all you gals out there, and wish the world would shine some luck on you all and make this time go faster and less painfull...

hugs to everyone

MNLinda

Chalex, I have a consult with a radiation oncologist on 3/10.  I'm working on a list of questions to ask.

My oncologist has some doubts about radiation, because, as he says, "You don't heal well when we do stuff to you."  But he wants me to talk to the radiation oncologist and weigh the pros and cons.

Wishing you a nice day too....

MNLinda

chalex

Hi MNLinda,

I am glad you are going to see a radiation oncologist. I agree with you that taking the questions is a good way to find out the information you need to make an informed decision.

Charua- I hope you feel better, sorry you are having a rough time. I hope things start looking up. I will think happy thoughts for you.

Faith- Looking forward to the cake.

Cake- Thinking of you and hope you are doing well.

Regards,

Chalex

guardienangel

well its the end of day 9 for me... and it was a hard one... the swelling is going down,, and when i went to have a bird bath! still cant have the one i really want! cause of the incisions and TUBE... damn it.hehehehe, anyhow

i looked at my ... remains! i mean really really looked at them! I am 48 and had two children, so i naturally had stretch marks... and omg! bruised stretched scar tissue of what used to be my breast.. i was so upset i cried in the bathroom for like a half hour! I cant show anyone! and not even my husband who is away working... PLEASE someone tell me, as I get my Fills,, the stretch marks wont look so bad, and fill out!!! cause, right now,, omg! i cant even look without getting upset..

BAD night.. deb

Anonymous

I had my unilateral mastectormy with diep at CPMC.  It was not as bad as I thought it would be and the pain was very manageable.  I never went over a 2 on a  1 to 10 pain scale.  There were no ICU rooms left after my surgery so I got to stay in a suite for 2 days that Sharon Stone stayed in. The bad news is that I was too gorked out on pain meds to appreciate it.  I have 2 drains left and hope to get them out on Monday.  I was readmitted for ateclactasis, low potassium and iron. I really felt rotton and fell better now. I am alone and staying at the Kabuki Hotel near by.  They have shuttles that run to the hospitals so I dont have to worry about driving.

 My path report came back as clear borders and 3 of 7 nodes were positive.  I have had chemo and am now being referred back to the original doc to decide if I should do more chemo or rads next.  I just cant wait until it's all over.

badger

Hey everyone, just a little encouragement, I'm five weeks out and it does get better. 

My incisions are healing pretty well, tho my body does remind me that the insides are healing apace with the outsides.  Still get the zaps and have the chest skin sensitivity.  Plus there are pockets of fluid at the ends of both mast incisions that make for a tiny jounce that was amusing at first (ooh I still jiggle a little) but got old fast when driving over bumpy roads.

Went flat to work and no one really noticed.  I hadn't told many people so they didn't know to look or ask about it.  I was a B cup and dressed conservatively so the outward change wasn't dramatic, but in my experience, people are far less observant than we give them credit for. :-)

Underarms still a little sore from snb.  I can almost raise my arms over my head but then feel the chest muscle or scar tissue *or maybe both* stretching to the limit of comfort, and that's as far as I push.  Faith, thinking of you and your axilla, hope it's getting better.

Kayne, we have a good group going in the March 2010 chemo thread, of course you (and any others) are welcome to join us.

Deb, I didn't have recon so can't answer your question about TE's and stretch marks but maybe someone else can. 

{{hugs}} to all, hope you are resting and recuperating this weekend!

dangergirl

guardienangel-

First, regarding driving.  It's harder than you think.  I'm approaching four weeks and really only started driving this past week, VERY short distances, only a couple of trips.  BE careful.  Turning the wheel is harder than you think (I have expanders too).  I tried right at day 11 and failed miserably.

I started the fills right at the one week mark, everyone is different though.  I could shower from day one with my drains in place.  Different PS do things differently.  Anyway, I can't personally speak to the subject of stretch marks, but I can tell you, now that I have had 3 fills, and the incisions are starting to smooth out *slightly*, and I've got little bumps now, it's much easier to look at, and I'm used to it already.  The first time I looked, I was a little stunned. Logic tells me that stretch marks should smooth as you expand.

Believe me, it should get easier in the coming weeks. Have some ice cream, and smile.  It will help!!

toughtitties

Hello,

I had a double mastectomy on Feb 12. Please add me to the list!! These expanders are SO uncomfortable.... can't wait for the real... uh... silicon implants. I am trying to do exercises to get range of motion back in my arms especially my right arm. Proving painful!! I am starting to feel little electrical impulses in both breasts- hopefully this means my nerve endings are reconnecting.  

Best of luck to everyone! 

Happiness and Peace,

Bridget 

dbdaze

Good morning everyone!

Deb, be gentle on yourself.  It's still early in the game -- I think we need to adust slowly to our "new" bodies.  It's also totally okay to grieve your losses.  So sorry you (us all) are having to go through all this, but reality is what it is, so keep positive thoughts.

Kayne, I agree with your "poof" troubles -- try as I do, I just can't get an equal look that's pleasing to MY eye.  I think Groundhog is right though -- most folks aren't as observant as we think.  

Here's to good health and pleasant thoughts,

Debbie 

cornellalum

Kayne and Debbie - yup, the poofs just don't make it.  I went out to dinner last night, and tried the poofs for the first time beforehand.  After about an hour of adjusting and presenting myself to dh and dd for inspection, I gave up, and went flat.  Guess what, groundhog, you're right!  No one looked, noticed or cared.  I'm not sure if I will have the same experience when I go back to work, as most of my immediate co-workers know why I'm out.  The problem I have is that I can't get the "official" foobs until this infection finishes clearing up, which won't be for another week or two.  And I think I'll be back at work before that.  Oh well.  Not gonna worry about it.  It is what it is (or isn't what it isn't, in this case!).  It will be amusing to see who looks, and for how long, and if anyone has the guts to say something.

Cakeisgreat - I'm thinking of you, and hoping everything went well.

Everyone else - keep heading in the right direction!  Good vibes heading out to you all!

dickisonmomma

My pathology came back.  Right breast completely clean of anything.  Left breast was full of PLCIS and LCIS.  BS said that she was glad we kept nipples as the margins were clean.  The bummer couldn't get a completely clean margin on pec muscle and couldn't take anymore or PS wouldn't have enough to work with.  She wants me to go to Radiation Oncologist now and get his opinion.  BS says if it was her she would not radiate for LCIS since its precancer just keep doing check ups every 6 months.  I hope radiologist agrees I really thought I would be done with this whole thing.  I mean wasnt whole point of mastectomy to not have to think of all this. Yikes so confusing sometimes.

Deb - When the PS put in my expanders he filled each one to make me like a full A cup (which I think has made it a little more painful experience) but I have also breastfed 3 kids and my stretch marks look filled out the same as they did before surgery.  So don't let that stress you, they will look so much better with each fill.  The thing that freaks me out is that they are kind of lumpy and you can fell the spaces that aren't full yet also my brusing is pretty severe. Plus I still feel like a truck is parked on my chest or that I have a really tight bra that I would like to take off.  I am on day 9 today.

 xoxo to everyone,

Karen

hereandnow

Hi, I had a right mastectomy and level 1 & 2 axillary clearance on 26th Feb and TE. 10 days later, it's still a bit sore, and I am doing exercises every day to try to get back some range of motion. I still have numbness over half of my upper arm, and under axilla, and half the right chest. Hopefully this will improve a bit as the swelling goes down.

I'm seeing my oncologist for the first time next Friday, but I can't help but worry because I haven't had any staging done, apart from an MRI looking at something suspicious in the left side (clear). I won't sleep well until I know the staging radiology has come back clear. With a 3cm IDC of grade 3, even though it's node negative, it's scaring me.

I got one of those amoena bras on the week-end - with the little foam insert for the pocket, I only wore it home from the shop, it looks good, but my chest is still a little tender to wear it for too long. I have noticed people in shops staring at my chest though, which is really disconcerting, because they never looked before. Oh well, another weird thing on this crazy trip.

Faith316

Welcome toughtitties and hereandnow!  I added both of you to the group list at the top.

guardienangel

thank you all so much for your kind words! i am feeling so much better today,,, and actually put on one of my sports bras... a very loose one, smile... but it actually made me feel somewhat normal... as normal as i can be right now.. but anyhow...

its my birthday on tuesday and PS appt!!! i kinda want some fill.. but at the same time.. how long after the fill when will it make me uncomfortable?and or those of you who have had fills how much should I keep it at.. and when does the discomfort begin??? just so i have a heads up!

dickisonmomma - i hope for you,, that you will not have to have rads... and a folllow in six months.

welcome... hereandnow and toughtitties

have a great night ladies

dangergirl

guardienangel - 

my first fill was 7 days post surgery and got 30cc.  I had spasms for at least 24 hrs, but it didn't start until several hours after the injection, and the injection itself I didn't really feel.  At 14 days we tried 50 cc and it killed me for 48 hrs, so at 21 days we went back to 30 cc, this week at 28 days we'll do 30 again.  I'm petite, and fit, relatively muscular for 49 yrs old.  Don't know if that makes my spasms worse than others or not, but be sure to have the pain meds handy.  Some women say they don't really feel anything.  Good luck and happy birthday!!

toughtitties

Good morning ladies -

Do you think the pain I was feeling were spasms from a fill I had on Wednesday? I had 30cc too but it was my first fill at about 3 weeks after surgery. Its funny how different all doctors are.

I do hope all fills are not that painful for two days afterwards. My God it was awful!

dangergirl - can I ask what treatment you are going to get now? did you have the oncotype dx test?

my oncotype came back with a score of 3. while that was great news... I am also worried that if i don't have chemo it will come back. I don't want chemo believe me - I guess I am just scared.  

dangergirl

toughtitties: 

My first two fills were really hard on me, the one last week better.  For me, the feeling is hard to describe, tons of pressure, twinges, really uncomfortable.  It comes in waves, and then subsides.  My PS has encouraged me to massage my chest, and that was AWFUL in the beginning, but for me, now it helps calm the spasms now that I can actually put my hands on that area -- at first, it seemed impossible, I couldn't stand anything touching my chest, but got easier.

I do not have to have chemo or radiation, I'm 100% DCIS, stage 0, clear margins (finally!).  One of the lucky ones in this regard.  I didn't need the oncotype dx test, what has your onc advised?  

thibaultm

Well  I am almost 2 weeks post op.  Surgery went well.  Margins were good, they removed 35 lymph nodes from the right, only 1 positive.  They removed 3 from the left, they were all clean. I have been stretching everyday and it seems to help with pain.  The next day feels better.  I had 2 of the 4 drains removed last week.  The PS was very impressed with the amount of movement I had in both arms and my healing process.  I also have used ice and heat to help move and stretch.  I meet with OS tomorrow for a f/u.  The surgery wasn't as bad as I thought it would be. I am still on my meds for anxiety and don't plan on giving them up any time soon.  I fell better and better as each day goes by.   

Faith316

I hate hearing about all you girls with TEs having pain.  I wish that wasn't a necessary part of having implants.  Hope the fills get easier as you go. 

Thibaultm -- 35 nodes??!!  That is a lot.  I'm glad only 1 was positive.  Sounds like you are recovering pretty well.  Glad for that.

Did I miss it or have we still not heard from cakeisgreat?

Chocolate cake tomorrow, girls??

guardienangel

hey everyone,, no one has heard from cakeisgreat yet eh.. i sure hope she is doing ok... mind you it took me a few days till i was up and felt like doing anything...

i am wondering if the emerg doc took out one of my three drains to soon! cause, my left side,, and i still have one there .. is hard and very uncomfortable... mind you i am going to the a ps tomorrow.. i am still taking light meds,, but not the strong ones i was on last week...

Kinds hopin for some fills tomorrow. but dont know... cause its not my regular ps..

take care eceryone,, hugs deb

caltex_catlady

What does it feel like if your drain is taken out too soon? Or if it's blocked and you're getting a buildup? When I went for my 1 week follow-up, my right drain was blocked, so she cleared it and the left while she was at it. I need to have additional node dissection on the left because the sentinel node was positive, so that drain will stay in anyway. I was hoping to have the right one removed, but maybe it will be done on Thursday when I'm in for the nodes.

I was asking about the feeling because I tried to lie flat yesterday for the first time is bilater mx on 2/23. (I've been using a BedLounge and sleeping while sort of reclining because I knew I wouldn't be able to get up and down from a flat surface by myself.) When I tried lying down yesterday, I felt a lot of uncomfortable pulling or pressure on both sides that I hadn't noticed while being upright. I'm paranoid about pulling stitches or dislodging or drains.

I so crave being able to lie down like a normal person and be able to get up by myself.

Karen (caltex_catlady)

PS I couldn't remember if chocolate cake started on 3/6 or 3/9 so I hedged my bets and started on 3/6 with leftovers. I hope cakeisgreat is doing well, but I know how tough the first few days are.

olivia218

guardienangel -

Happy Birthday tomorrow!!! I hope the PS appt goes well so you can enjoy your day!! 

If we do not hear from cakeisgreat, what is our plan?? 

badger

Hi all - I'm with Karen, I bought a small choc cake and have been nibbling on it since Sat.  I figured 1) there's never a bad time to eat choc cake, and 2) I start chemo tomorrow and don't know if my taste buds will be up for it.  May have choc cake with my coffee before I go in...

Kidding aside, cakeisgreat I hope you're doing well !! {{hugs}} all around

olivia218

Groundhog - 

Hugs to you )))) I hope tomorrow goes as well as possible! I will eat cake for you and cake again whenever we need to!!

Fondly

Olivia 

chalex

Hi Ladies,

I hope those of you with TE are feeling better. Sounds like it could be rough at times.

I also think my drain was out too early b/c I am still draining and there is yucky thick stuff coming out. It's been checked for infection so far so good. The drain site also is red and sore too.

Groundhog- Best of luck with chemo tomorrow. What chemo are you starting?

Cakeisgreat- I hope you are doing well. Thinking of you.

Chalex

Faith316

Groundhog --- how ya feeling about chemo tomorrow?  It really isn't all that bad for most people but I know it sure feels scary right about now.  The fear of the unknown is usually worse than what it turns out to be.  Good luck.  You're gonna do fine!

hereandnow

I saw my surgeon today - she is happy with my healing and range of motion (11 days post op), I trimmed the hedges on the week-end, and my mum helped me with planting some seedlings for the autumn in my vege patch.

I have the plastics appt tomorrow for the first TE fill- reading here makes me a little scared. I might ask him for some diazepam for the muscle spasm. Has anyone else tried this, or what else worked?

I love the idea of all this chocolate cake- I'm sure that will help the most of anything