June 2012 Mastectomy

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited July 2012

    Loriio - my lava cake boobs quiver when I'm cold. It seems like it is getting better, but it was really shocking at first.



    Curveball - I worked from home last week but started going into the office this week. It went much better than I even imagined. If people are looking, I haven't seen it. I have bought a lot of new tops that are more flowey or pleated to add some volume. The first day will be the toughest, but people will be happy to see you looking well.



    But, my first week back hit a low point today. They rolled out our summer event - a softball game. They ran a draft on the spot. I still don't have full extension in my arms so I can't imagine swinging a bat in 3 weeks. I am the only one at the home office not paticipating, and as the office was buzzing with ideas for team names and nicknames for shirts, I was feeling very left out.



    Hope everyone is well!

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  • Lisa143
    Lisa143 Member Posts: 19
    edited July 2012

    Hello June Bugs hope everyone is healing and getting those drains out!



    NanG- I always love your stories. The whole self conscious I totaly understand went out to lunch today and looked in the mirror and told my 17 year daughter I need to change my port shows. She said no Mom you look fine don't change so I took her advice and had a great a day shopping and lunch with my sister and Mom I can't remember the last time we a girls day. I have to say though with chemo and losing the hair I just did hats no wigs you forget about it and just put your head up high and just smile. We always laugh about how I get special treatment when I go to a store or restaurant.



    Faithhopenluv- sorry about the whole work thing and not being able to play softball. I still have not gone to work yet was going to go in Monday but BS said I need another week of hand in the pocket as she says. So had to call my boss which is a new one we had changes while I have been out. She was great I have to admit very concerned about me and said with radiation starting they would totally work with me. 😊



    HUGS TO ALL 💗

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  • Jinkala
    Jinkala Member Posts: 193
    edited July 2012

    Drain didn't get taken out today - very disappointed.  My numbers weren't quite good enough.  Probably will get the drain out on Monday.  Next Wednesday I am supposed to be going back to work.  I'm not even sure what I will be able to wear because my skin is still so sore/sensitive in that area.  I kind of don't want to go with nothing on under my shirt but that is the most comfortable for me.  I also didn't tell hardly anyone at work why I was taking sick time so I don't know if anyone will be looking at me trying to figure out what I had done. :/

    Working itself shouldn't be an issue really as I usually just sit quietly at my desk doing work but I also normally go out for walks during breaks and that would feel awkward without a fake boob to look normal.  I know it shouldn't bother me since I'm not out trying to meet people or make impressions but I'm kind of shy and don't like standing out either.  If it wasn't so terribly hot, I could just wear my hoodie and not be very obvious at all. *sighs*

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  • MMTOMH
    MMTOMH Member Posts: 127
    edited July 2012

    So...I got my second fill today-another 120mL each side.  Now I'm at a total of 380 in each foob.  I have one more fill next week and then I have to fly back down to meet with my radiation oncologist and have my simulation appt/treatment planning session.  Before I can see her, I have to see plastics to have the right side deflated.  I guess I'm wondering what the big hurry is to get me completly inflated, just to deflate me again.  How quickly do they re-inflate again after rads? Just seems to stink to go through all this to then be deflated and have to re-do it all...sigh.

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  • juneaubugg
    juneaubugg Member Posts: 951
    edited July 2012

    Bev49



    So glad I'm not alone on the EXTREME under are m burning/chaffin . I've had enough and to tired right now. maybe we can find a private chat room tomorrow mu,st sleep.just so much I identify with



    Try to get some rest ladies!!!

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  • wendy49
    wendy49 Member Posts: 45
    edited July 2012

    @Bev49:  I'm having the same burning/chaffin under my UBX side.  Makes me crazy!  I inquired as to how long this burning lasts, the answer I was provided was about 2 months.  Ugh ...

    Just had gallbladder surgery yesterday, so I'm behind in posts.  

    I hope everyone is healing, resting and calm nerves before surgery date. 

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  • NanG
    NanG Member Posts: 180
    edited July 2012

    loriio...i get weird shivers too. and it starts in my foob and that freaks me out so then i get goosebumps all over my body and my hairs stand on end. its soooooooo freaky!! its like seeing a ghost everytime....!

    Lisa...i TOTALLY heard a lady on youtube talking about going into stores and "playing the cancer card" LOL! She was doing a tutorial on how to pencil in eyebrows after hair loss.  She said that she goes into makeup stores to ask for help on how to do eyebrows and lashes and they give her free stuff. LOL. Not that i am a promoter of taking advantage of the compassion of others but...it was funny anyways.

    Jinkala...i know how you feel but those drains in right now are probably sparing you a lot of discomfort than if they were out.  I'll be praying for u!

    MMTOMH- i think that the muscles/skin are suppossedly more supple after the initial surgery than when they heal in a certain shape.  I have my next fill on the 24th and am looking forward to trying to get another 120 in there. I can't wait to be busty again!

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  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012

    Good afternoon all -

    I had my second fill this morning. I am up to 240 cc's in each breast. The PS asked me what size I'd like to be in the end. I asked him what size they were now and he said with next week's fill I will be a full "B" cup post-exchange surgery. Pre-surgery I was a "lower case C cup" I explained that it is kind of difficulyt to gauge if I am happy with this size right now - since as Lori said - They're square boobs. Ladies with TE's thoughts on this?

    Nan - good story... I too have had two run-ins with the foobs - both involving a chair - one in my own home and the other out to dinner. My natural reaction, I grabbed them and then (in a rather loud voice) asked my husband "Are they leaking?" Needless to say, the two guys at the table next to us got a good chuckle out it.

    Lori - I get the shivers in my chest at least a few times each day. It's a strange sensation. I also have had a cool almost dripping water sensation, equally as strange.

    Curve - thank you for putting together such a terrific and informative list.

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012
    @emilybrooke, have you checked out the thread about sizing implants on the reconstruction forum? It's huge, with lots of information about picking a size and profile.
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  • MMTOMH
    MMTOMH Member Posts: 127
    edited July 2012

    spasming chest muscles gives new meaning to the phrase "heaving bosoms!" haha

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  • loriio
    loriio Member Posts: 247
    edited July 2012

    NOTE TO SELF: Wear sweater at grocery store-even in July. I got so cold that the muscles clenched and the bosoms were heaving uncontrollably.

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  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012

    Thanks Curve! I posted on the board over there =)

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  • 7of9
    7of9 Member Posts: 833
    edited July 2012

    emily...going to check out the reconstruction board myself. I'm marveled at my 3rd expansion b cups....they are smaller than the old girls but defying gravity...I know they are hard and not natural but I honestly like them 75% of the time....which is probably more than I liked the old set. Am all for the new me, no going back to worn out and deadly boobs. I'm going slowly and not even bothering to ask how much, I'm letting the nurse practioner just fill me til she thinks I get snug and stop each time. The plastics office does one day a week closer to home by a nice outdoor shopping mall and I have my Mother in law watching the little one so it's actually a nice afternoon outing/off...  :)

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012
    My Oncotype test results finally came back....28 Surprised So I went back and updated myself in the list. It's still possible to make changes and it's been more than two days I think. Incredible!

    That test result puts me out of the RXSponder study, because the highest eligible score was 25, and means I'll be starting chemo next week. I had to stop reading the chemo threads before. They were making me too nervous and I didn't know for sure that I would be having chemo. Now I do know chemo is in my future and I'm getting the butterflies in my stomach again like I did before surgery. Maybe chemo will turn out to be another "not as bad as I was afraid it would be". I sure hope so. Now I'm off to sign up in the July Chemo thread and then to see if I can find out what's going on with these helicopters hovering over the house. They've been there for about ten minutes already, but I looked at the websites of all 3 local stations and didn't see any breaking story. The local evening news just started so maybe it will be on TV.

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  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012

    Curve - if you can still update, I found out today that I will be meeting with an oncologist on Monday to discuss my treatment plan. I will be joining you on the July chemo thread. I like your attitude and agree maybe it will not be as bad as I think it is. We've already been strong enough to tackle one obstacle - stay strong!

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    I'm late. I'm still new to the site. How is everyone?

    I had my bilateral double mastectomy with tissue exoanders on June 20th, stayed in the hospital for 2days and 1 night. Had 4 drains total. Two removed a week after surgery and remaining two removed the following week (2 wks total). My first fill is on July 25th.

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    @emilybrooke & kathyhong, I have added your updates. Keep 'em coming. I'll update 'til I cain't update no more!

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @curveball

    How are you? May I ask how old you are? The reason i ask is because the older you are the harder it is to endure it. My mom had gone through radiation and chemo. Although she did not have breast cancer. I can tell you she hated it. She was very tired (she was 60 at the time and its been 2yrs now). All I can say is that mentally you have to endure it and stay positive. My mom felt weak and exhausted. She had the port and so she had to carry the chemo machine on and off. Then had taken chemo pills. Nowshes ofgically done but needs regular checkups to make sure the cancer never returns. One day it WILL be over. Good luck! Keep updating us!

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  • loriio
    loriio Member Posts: 247
    edited July 2012

    Thanks for all of the updates Curveball. I am meeting with the MO on Monday to find out if I need any additional treatment. I dont have the details from pathology yet. Only that they got clean margins, extensive LCIS and micro invasion of ILC on left, and the right was clean. The ILC was so small, there is a possibility I won't need any additional treatment. Fingers and Toes crossed!

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    @loriio, let me know what you find out at your onc appointment on Monday and I will update the list if I still can.

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    @kathyhong, I'm 56, and no radiation for me, so maybe I won't have as tough a time as your mom did. I think she must have gotten a different group of drugs than I will, because I asked Dr F if I would need a port, and he said I wouldn't. It sounds as if altogether her type of cancer called for a more aggressive treatment than mine. I hope her health and energy level are getting back to normal now.

    I just hope I can get through this without reverting into a whiney pre-schooler. I tend to do that when I feel really sick and miserable, and from what I hear about chemo I will be feeling sick and miserable a considerable amount of the time during the next few months. My poor mom! I hope she doesn't want to put my suitcases on the porch and change all the locks before this is over and done with. Maybe there is a funny side to chemo like it turned out there was a funny side to being one- (can't get my fiber-fill small enough) or un-boobed (heaving bosom incidents).

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @curveball

    well my moms hair grew back mostly black but still has that salt and pepper deal LOL my dad is 65 right now and has never dyed his hair and its mostly black and he still has his full head of hair LOL so we still joke about that haha

    I would advise a lot of protein to get you through because my moms appetite was weird..in the sense she would get cravings or had no appetite some times. She would prefer sleep over food. She lost about 25lbs. No idea what the cancer is called or even what the term is in English. She had surgery on her bladder and colon. Had a urinary cathether for 2months. She said that was worse than chemo itself. Radiation made her sensitive to the sun and made her felt like she was burning and chemo made her exhausted. My mom was never really active so it was hard for her. Rest is advise of course but also try to even walk around the house for at least 10 or even 5 minutes a day. It sounds like you might do chemo pills then? That would be much better than having the port.

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    @kathyhong,

    I am pretty sure the chemotherapy I will be getting is intravenous, but I guess they will just hook me up to an IV every time. It is four treatments spaced three weeks apart. Maybe a port is only used if there are more treatments or they are closer together.

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @curveball My mom had chemo for months after. Every 2 weeks she had the chemo machine to take home for about 3 days and it was hooked to her port. Rest for a week. Her chemo was way more extensive. Seems like you will do just fine. :) 4 treatments? Thats good though isn't it? But that's very surprising to me though..

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  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012

    My surgeon and I have been exchanging emails in an effort to get my oncologist appt. moved up.  In her last email she shared that she received the final report on the receptior and the Her-2-neu test came back positive.  What does this mean? I have read some things online but I am hoping that you ladies will provide more insight. Thank you!

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    Her2 is a genetic marker, and if present in your tumor means affects what treatment options are available to you. There's more about it in the main bco website here.

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  • loriio
    loriio Member Posts: 247
    edited July 2012

    Y'all say a prayer for 25weeks. She posted in the July thread if you want to check it ou, but she is really having some struggles.

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  • me_4givn
    me_4givn Member Posts: 43
    edited July 2012
    PrayingInnocent
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  • taismommy
    taismommy Member Posts: 31
    edited July 2012

    Hi Junebugs,

    I went to the doctor on July 10 to get my pathology from the surgery. My doctor told me to my cancer was 3cm, 1 of 16 nodes positive, left breast is totally cancer free(happy I had it removed anyway), chemo should start in August, im going to need PT because I still can not lift my right arm(cancer side).

    Ever since I left her office I have been seriously depressed! I cant stop crying, i just stay in my bed to avoid everyone. All anyone can say is dont feel that way. WTH is that suppose to mean? Im pissed and scared to start chemotherapy! I dont know how to make anyone understand what im feeling??

    I looked at my chest for the first time with my visiting nurse and I was surprised at how it looked. I thought i would look more disfigured but its pretty neat. I felt tears coming but i held them in, I have had enough crying.  I know that i should just let the tears come whenever they need to but i just cant.

    However, the TE are very hard and uncomfortable without wearing the compression bra and padding. It almost feels like its going to separate at the scar line when im naked. Does anyone else have this problem? I keep reading some of you are braless already, i cant imagine that.

    So sorry this post is all over the place but i am so scatter brained lately...forgive me.

    @NanG, I am so happy for you being FREE!!! Even though i havent been very active on this site ,more of a lurker, I thank you for being so positive and inspirational to me and many others im sure.

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited July 2012

    taismommy - so sorry to hear you didn't get the best pathology report.  Chemo is scary and emotionally draining, it is hard for people to know what to say, especially if they haven't gone through it.  Even those of us that have can only relay our own thoughts and experiences.  As much as chemo sucked, it was liberating in a way after that first infusion.  Kind of like we all were worried about surgery and then once we woke up we could focus on healing.  The days leading up to chemo were much harder for me than chemo.  Once you start chemo you can shift your focus - you mark your calendar, put your head down and then plow on through.  As for your arm, it will take time before you can raise fully but it does get better.

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