June 2012 Mastectomy

What's next for the Junebugs? Here's what I found in the thread about next treatment steps. There are a few new people since the earlier list, and a couple of others who posted in the thread but didn't mention a surgery date. One question mark next to a treatment means I couldn't tell for sure whether it would be included or not--three question marks after a name means I couldn't find any mention of future treatment. If I've made any mistakes or left someone out, please PM me so I can fix the mistake
5/1-
infobabe: hormone tx?

6/1-
7of9: radiation? TE fills

6/4-
ldianel: radiation, chemo, hormone?

6/5-
rosetx: TE fills
jenlee: DIEP revisions?

6/5-
rosetx: TE fills--no chemo, no rads, no hormone tx....woohooo!
jenlee: DIEP revisions

6/6-
Jacki2005: radiation
curveball: Oncotype (score=28), chemo (CMF 6 months), hormone, reconstruction
3kidsmom: no ALND, radiation, tamoxifen

6/7-
bevg49: TE's again?
Rckinrobin: TE fills
mariannm: TE fills, aromasin

6/8-
Lynn27: no Oncotype; chemo, herceptin & hormone; nipple reconstruction?
KimKay: radiation, TE's?
rhymeblue: tamoxifen

6/11-
hannah318: TE fills
my3sunz42: TE fills
kirwin524 (lumpectomy,Lymphoscintigraphy): re-excision 6/27
Ami1026: TE placement & fills
honeypotpie: TE fills
Sylndan: ALND 7/3

6/12-
Sandpiper1: (SNB) UMX w/ DIEP on 7/11
Iggy: ???

6/14-
faithhopenluv: Brava reconstruction
MissSissy: lat flap revisions?

6/15-
LastMango: implant revisions?
planetbananas: chemo, TE fills
cjanet: TE fills, chemo, radiation

6/18-
Lisa143: radiation, DIEP & PMX
25weeks: chemo, TE fills
NanG: TE fills (no chemo, no radiation, no nothing--woohoo!)
JenH13: herceptin, radiation?, hormone, DIEP?

6/19-
LAstar: hip flap revisions?
tellie_savalis: radiation?, DIEP

6/20
beata44: TE fills
Grateful33: TE fills, radiation
emerald424: ???
emilybrooke: TE fills, chemo, herceptin
kathyhong: TE fills
laurab69: radiation, reconstruction
queenbean84: TE fills, chemo, radiation?

6/22-
Ligrtt: radiation, TE fills
Taismommy: radiation?, chemo, reconstruction

6/25-
tightwadmomma: TE fills

6/26-
loriio: TE fills (no chemo, no rads, no hormone tx--woohooo!)
tlangston07: radiation
kane744: PT, port, chemo x 4, no reconstruction--get back to my life!
love mysamoyeds: ALND, chemo, radiation?
jinkala: bra/prosthesis fitting
me_4givn: TE fills, 1 yr herceptin
juneaubugg: TE fills

6/27-
MMTOMH: radiation, TE fills, DIEP
kirwin524: chemo then radiation
jazlaumir (MX & ALND): chemo then radiation

6/28-
GeorgiaRai: radiation
Phylmont: ???
Sparkysbrat (SNB): MX + TE placement 7/10
shirleysangels22: no chemo, no rads, tamoxifen discontinued

6/29-
tbc1222: TE fills

7/3-
Sylndan (ALDN): TRAM revisions?

7/10-
annievan: TE fills
25weeks: ALND
Sparkysbrat: TE fills

7/11-
sandpiper: UMX, DIEP

7/19-
lovemysamoeds: ALND

7/25?-
tweetyb422: chemo completed, possible BMX, reconstruction??

no date-
annie3310: ???

I thank each of you for sharing your experiences and helpful tips. And what most here understand that the rants are equally helpful. Gives us all a sense that our emotions will be different....some the same...but that they are our emotions, words, frustrations. I am having the day-before-surgery blues. I am feeling selfish today...Much like a child I want to kick and scream-full tantrum-mode.

Off to keep busy and perhaps enjoy the beautiful day sans my favorite red

I think I'll delay my tantrum til later

Continued healing and positive thoughts to all the Wallenda June bugs.......

See You all..............on the other side. 

good morning ladies laura here just wanted to say I have been reading all the posts I don't post much because I hate to type but I do think of you all everyday as I'm reading ., my surgery went well! I got clear margins in the breast tissue area but I do have 8 positive nodes boo !! just waiting to start rads soon .my bs told me I couldn't have reconstructions for 6 months because of the radiation but I see that some of you already have te and fills along with radiation ? my surgeon told me it was damaging to the implant if you had radiation right away is that true or should I push along for reconstruction ?

@laurab69,

it's my understanding that radiation and TE/implant reconstruction are not a good combination. Here's an article from the main bco site with a research study that says the same thing, and a search for radiation and implant in the Breast Reconstruction forum produced 883 hits just in the last year, so there is a lot of info and experience here for you to check out.

Are you having radiation treatment of your whole breast area or only of the armpit? That might make a difference in how much the RT affects your reconstruction options. Also, I am planning on a flap reconstruction and my PS also said that I'd need to wait for some time after chemo and/or RT if either or both were included in my treatment. Now that you know radiation is included in your treatment plan it might be a good idea to have a second talk with the plastic surgeon to clarify what is the best kind of reconstruction & best timing for a successful outcome.

I love the term "booblessversary"! Totally going to steal that one!



I am doing great but so tired of being sore. These expanders truly are turtle shells from hell. I had 150 ccs at surgery, and had my first fill of 100 ccs two weeks ago. Go for another tomorrow. These things actually became less painful after the first fill, I guess because the edges were not so sharp and more rounded out. I guess it is not really PAIN, just constant soreness. But I am thrilled to finally have cleavage after being an A cup! I actually had fun shopping for a swimsuit for the first time in my life. My friends that have always had large boobs just laugh and don't really understand. My friends that are A cups like I was...well they totally get it! Not an easy way to get cleavage, but it is a bright side anyway.



I hope all of the "June sisters" are well on the way to recovery by now!

Curveball: Thank you for listing everyone's upcoming next steps, lots of work, my next steps are chemo then rads.

Sandpiper: Big hugs your way! Best wishes on a successful surgery day!

Lorillo: Hugs your way as well, happy "boodlesversary"!

laurab, I think it's likely your surgeon said nix on implants because of the high probability that complications will occur with implant reconstruction after radiation treatment. But there are other kinds of flap reconstruction in addition to the TRAM, that you might want to investigate. The delay for your radiation treatment gives you a chance to study up on it. If your library has a copy of "The Breast Reconstruction Guidebook" by Kathy Steligo, there's a lot of info in it on the earlier types of flap reconstruction (TRAM and Latissumus Dorsi) and some about the microsurgerical kinds, like DIEP. And there are massive threads about DIEP, Latissumus Dorsi, and travelling out of town for flap surgeries over in the Reconstruction forum. Lots to think about.

Curveball-maybe " uniboobiversary"? Just trying to find laughter where I can. Not sure why because right now it hurts to laugh! But I love this group of ladies!

Went for a post op today and got my last drain out 😃😃 I was so excited! Left the office with 3 appt. 😔 I have to have port flushed yuck hate the tatste in mouth brings back bad memories of chemo. Need CT scan and sem for radiation on to the next step!



After my Appt. went to essential women's and got a cami for support on my right side it was hanging way to low for liking and put my foob in the leftside I actual looked normal felt so good! They billed my insurance for the cami wooohoo she said they count it as a bra that was nice.



Went to my sisters pampered chef party tonight in my new cami and had my self a couple glasses of wine first time out since surgery much needed outing.



Curveball you are awesome on the update on everyone and LOL on the universary I'm with you on that one 😃no punt intended.



Hugs to all my June Bugs we can do this!

Annievan- Good to hear from you.I had a similar issue. I did have a pain pump , but when they took it out I would have to cal them for pain meds. Sorry about the charley horses. Did they put one of those sock/leg massagers on you during surgery?

Laurab- my ps STRONGLY suggested no TEs too, so much that I really didn't have a choice. The reason was due to having rads after surgery. He said there was a higher % of complications with TEs when you had to have rads . Solo I had to wait on any recon until I was done with rads. Now it's a possibility I don't have to have rads. Each ps is different as I do know some ladies who did have TEs with rads. I personally didn't want to risk it after doing some research and my situation . Right now I am looking at getting the DIEP recon next year. Perfect boobs with a tummy tuck we will see.. Not sold on it yet cause the thought of all the surgeries right now freak me out. But there are a lot of options! Maybe get a second opinion?

Whew!

There is a lot of us here! Good and sad together ox! Here is my quick update. Last two drains pulled out yesterday (YEAH!). Had my first TE fill. The doc put 180 cc per breast during surgery and first fill was 60cc per breast. I was told to take Motrin for discomfort but had none (YEAH!!). I was a little tight but that's it. Ok, move to this morning, I woke up in a wet sports bra right drain site leaking with no signs of infection. Still on antibiotics. I was told I could shower today.

Here is some new information for those of you wanting to fly with TE's during recovery..........Expect gurgling and possible pressure. I was told this by doc. With the altitude change the air in the TE goes to the top and makes noises and there can be a little extra pressure. None of this is cause for concern but should be noted. I am taking off for CO this weekend.

Sandpiper-(((Hugs)))

laura69- I am not having rads because I had the life time amount in my early 20's with Hodgkin's Disease (another type of cancer). I was also in a clinical trial and had all treatment up front with my BMX in the rear. I will be taking herceptin for 1 year now too. Demand to know "why" for everything it's your right as a patient! If you are not comfortable with what is being told to you by any doc., get another opinion (said with love).

loriio-I too feel like things may be getting back to normal. Getting my drains out helped me to feel like, I am more normal (what ever that is!).

Jinkala-Super funny post (made me laugh, thank you Maybe a barrier between you and your new prosthetic (perhaps, something silky?)

curveball-Thank you for all your hard work! Love the play on words! I end up holding myself when I sneeze, cough, or laugh. Felt like a total dork at the pizza place doing this action, while onlookers watched. It made me laugh more (terrible!)

Lisa413- Your post made me smile, your living your life. Here's to doing things un-cancer....Hip, Hip, hurray!!

annivan- The nurses have to be asked to give you your medication. Medication is written out by the doc and is up to you to ask for it (ask the nurse what the doc wrote for the time inbetween meds is). I know this sounds terrible (it is) but they need to see how your pain is being controlled and what is working and how well. Also, for those spasms.......ask the nurse for valuim (muscle relaxer) or, if you don't have an order for one, ask the nurse to call the doc for an order. The nurse is there to help you. I hope you are feeling better soon ((Hug)).

Bev49-I am so sorry you still have the drains (Ahhhh!) Are you doing a lot of activities with your fingers and arms?? That may be adding to the large output. I was told that typing and texting can increase output (maybe that is why I am leaking). I am so sorry again, those darn drains suck!

Big-huge-hugs to all of you here and thank you for sharing it really helps so much!! Happy healing!!

Jami <><

So great of you, curveball, to keep track of everyone's status!  For me, all that's left is radiation which will begin in August (no reconstruction).  

I'm sending my sincerest "sympathy face" to those who still have drains.  Those things were horrid, inconvenient and painful.  Luckily as of yesterday, I'm drain free (tomorrow is my 2-week surgeversary).  I hope the rest of you dry up and get unplugged ASAP.

My hospital sent me home with a stack of individually wrapped small alcohol pads to use for milking the drain tubes.  It worked great (but didn't make me hate those drains any less).

thanks curve for doing that update on all our treatments!! that was awesome!

today i had a blooper at the grocery store. having sponge bob square boobs is kind of disorienting, because i still don't have a feel for where my foobs begin and end. with normal tissue u can kind of sense the nerve endings and skin but with the nerves cut and the TE in...you just have no real sensation of what size you are on top anymore. 

so im standing in line for my groceries and i literally walked right into the shopping cart and it jammed me in the right foob. I yelped really hard and said a fake swear....(i think it was fudge...and i said it realllly loud...) everyone in line just looked at me as i was there hopping around clutching my chest. the kids were looking at me in horror and my littlest one even goes..."sorry mommy....!" like it was her fault...;o(

the lady beside me goes..."did u get yourself in the breast?"  and i kind of stopped in my agony and didn't know how to answer her.  i just stopped leaping and stared her in the face and was drawing a blank!  My inner monologue was going..."no, i had breast cancer...i jammed my right tissue expander and am experiencing a weird combination between pain, worry, and strange unfelt sensation all at the same time..."

What actually came out of my mouth was..."yeaahhhhh..."

I really wanted to say the inner monologue part but as i stood there looking her in the eye and the delay grew and grew....the whole schpiel seemed invalid, and agreeing with her seemed more for her than for me.

 What do you guys say when you have a public faux pas or incident like that?  Do you openly say you had cancer, have cancer, or reconstruction or what?

Its a new thing in this journey...how to relate to people who are on the other side of it.  I also met up with a family friend later in the day at the pharmacy.  She saw me and ran to me to hug me...but she very obviously avoided looking at my chest.  Which to me seemed unnatural but im sure in her sweet mind she thought it was more respectful.  It was a funny moment too because I went into the pharmacy realizing that i'd left my scarf at home...but decided that if I was brave enough to go through the mastectomy and all the tests...(and if you all are brave enough to face chemo and rads everyday) than the least i could do is walk into the pharmacy brave.....with my head held high and my squareboobs forward!!  So, it was funny that she made special effort to not notice! lol....

My foob is fine after jamming it into the cart.  Truth be told i probably didn't jam it THAT hard...but it scared and startled me more than it hurt.  Keeping an eye on it though just in case i did bruise it or something.

@NanG, I think having people "not-look" at me is one reason I feel so leery of going back in to my office. Physically, I'm recovered enough to do it, but I just don't want to. I got approved for telecommuting before my surgery, so I've been doing that half-time, and I think I'll go in on Saturdays when there's nobody there, and have my "weekend" Sunday & Monday, or Sunday & Tuesday (I'm in a support group on Tuesday afternoons). I went last Saturday for a couple of hours and got a bunch done because there were no distractions. 

I haven't had any incident like running into the back of a grocery cart, but before surgery, I kept imagining someone turning around on the bus and smacking me right in the chest with a big ol' purse or backpack. The idea of that happening still makes me cringe just thinking about it, although I don't know if it would really hurt or not if it did. I think if something like that did happen and I was doubled over in pain or crying and someone asked me what was wrong, I'd probably say something non-specific like "I had surgery and it's still really sore right there", or in your case, what you wrote would work just fine ..."I had surgery there, but I'm really more startled than hurt."