June 2012 Mastectomy

tightwadmomma

I am 200 ccs in each boob.  Get another fill tomorrow.

Drains are out, so life is good.

Helped throw an anniversary party for my parents yesterday, managed to survive through lots of lifting/cleaning/photographing...ALL IN HEELS!

I have like an extra boob under one of my arms...anyone share this weirdness?

Also, the skin under each boob (or where my boobs USED TO BE!) is sooooo sensitive/raw. Anyone share that?

xoxo to everyone, 2nd month boobectomy-friends!
Think PINK!

loriio

Good news! I met with the oncologist today and he said that even with the micro invasion of ILC, he doesn't believe that I need to do anything else. He felt in my case, the risks of tamoxifen far outweigh the benefits. The spot they found was only 1mm. Teeny tiny. I'm so glad I had the surgery when I did. I thought about postponing or even canceling. Who knows how long it would have been until they found it? So glad to finally have some good news!



And tightwad- I do have that raw sensitive feeling under the foob.



Lori

curveball

@ loriio, you're updated...no chemo, no rads, no hormone tx! Everybody give a great big woohooo for loriio!

Jinkala

The drain is finally out - felt so much better - went shopping wearing the cami and puffy foob without too much discomfort - still feeling better with nothing on under the shirt but being a "D" with my good boob, it's weird to go out without anything.  I think it was just the slight movements of the tubing that were bothering me so much.  I still feel a bit sore at the site but it's nothing like before.   I still have the sensitive chest skin above my incision but even that didn't seem to bother me as much though that part could be just psychological relief at being rid of the drain. Heheh

My next big step is going to work on Wednesday, Thursday and Friday of thise week.  I don't really feel ready but it's not like it's hard work or anything like that.  I just have gotten kind of used to sitting around in my comfy worn clothes with the bed nearby in case I feel like a nap.

Next Tuesday is my visit with the Oncologist - hopefully that goes uneventfully.

luckykitkat09

@Jinkala

YAY! I think the worst part is the drains so far. What is foob??

luckykitkat09

Ok so today I started driving. 21 days after surgery. Pain..but not so bad. I can't steer or turn with my right hand but controlling the shift is ok. It hurts right under my right armpit where the incision is. I think these 5inch incisions are finally sinking in. It's still..hard for me to digest when I look at them especially when I shower. Anyone feel the same? My tissue expanders are still somewhat hard. I don't exactly remember how much they filled me during surgery but my first fill will be on the 25th.

Lynn27

Haven't posted in about forever.  Thank you curveball for providing the June bugs status update.  You are a marvel at organization.

So my update is that I didn't need oncotyping because my HER2 came back extremely positive on the IHC test.  In fact all the markers came back extremely positive.  Apparently the cancer I had (is it gone?) is aggressive.  After spending a fair amount of time researching and talking with my MO, I am convinced that I went from DCIS to IDC during the two months between diagnosis and BMX.  Thank goodness the nodes were all clean.  I'm to start 6 sessions of TCH chemo, a year of herceptin alone, and then 5 years of whatever version of tamoxifen they give post-menopausals as soon as the BS and PS release me, which should be this week. 

Having spent the last two hours getting caught up on all these posts, I'm really glad I went with the free tissue reconstruction (although waiting for a surgery slot may have been what made the IDC appear).  All the stories about discomfort and fills, re-fills, etc with those TEs sound awful.  I'm walking around with Frankenstein breasts - which I would have had anyway - and unless I want nipples put on, I'm done.  A little stiffness still 5 weeks post surgery, but nothing significant.  I'll have lots of time to ponder the nipples, there's no way the PS will want to do anything while I'm having chemo.

Thank you everyone for being such a marvelously supportive group.  You all know how great you are, but I'm still impressed by how so many can reach through their emotional and physical pain to comfort others.  You are an inspiration.  I don't know if 7of9 intended this topic to continue past June, but I expect we'll keep the postings going until the last of us are NED and that's good for me.

Lynn27

kathyhong:  fake boob.  You may also see "fipple".  On some board I saw "noob" or new boob.

curveball

@ Lynn27, you are updated! I am amazed, but I can still edit that comment, so keep the updates coming.

JenH13

Lynn- You can do it!!  I am triple positive too and did 6 sessions of TCH and still taking Herceptin and then yep you guessed it.. 5 yrs of tamoxifin.  I had chemo first then surgery.  The herceptin I thought was a piece of cake although going every week gets old :P We will be on these boards for years with each other lol

Thanks for all your work curveball!

MMTOMH

loriio - Congrats! What great, fantastic, excellent, amazing, wonderful, exceptional, perfect news for you!

Lynn -  I would say that if your nodes came back clear, margins were clear...you are cancer free!  Yeah!  Tough break on the tamoxifen AND herceptin, but you will do it all and be back to life soon!  

JenH - Can't you get your herceptin every 3 weeks now that you've finished the TC?  That's how my schedule is set up 

JenH13

MMtOMH-  My dr gave me the choice of a smaller dose every week, or a larger dose every 3 weeks.  He said there is no statistical proof from the company or any other drs. but in his own patients, the only ones who had heart failure or issues were the ones getting the 3 week one.  Soooo since my work is being accomodating,I choose the every week one... for now.

me_4givn

Hello Girls,

Sorry, I have been out of touch. I am in CO with family and doing really well. Still no leaking and showering again. I see my MO and PS when I get back to see if They will let me go back to work. I think they will. I am taking herceptin on the three week plan for the next year. I also did chemo up front with surgery on the back end.

I did want to say that I never had any gurgles in my TE when flying. I waited for it but it never came or I could no feel it. So.....That is good news

I have my second expansion next week and I am only having them filled in 60 ml's at a time (low and slow). I had a moment of normal while sitting in the movie theater with my daughter enjoying life and wasn't thinking about cancer. It was heaven! 

tighwadmom-my fullness is at the bend of my arm and arm pit. Yes, my foobs are sensitive (like chaffing feeling).

loriio- So happy for you!!

Jinkala- Isn't it great to have those drains out?! So much better!! Keep up the good heaing work

kathyhong- Get out and have fun. Do something wonderful for yourself. You have worked all and deserve to go have fun..congrats on driving!!

Lynn27- Hang in there girl! You can do this! Herceptin was easy for me (still on it). ((hugs)).

JenH13- I will ask MO about reduced dose on Herceptin. I start my Herceptin back up next week. Thanks for the tip

Big hugs to all you Junies

Jami <>< 

emilybrooke

Jen and Lynn - I am triple positive too. Thanks for the info on the Herceptin. I met with the oncologist yesterday and she has me on the following treatment:

Chemotherapy Treatment plan: start Monday 7/23 with 4 rounds of AC followed by 4 rounds of Taxol with Herceptin every week of the Taxol treatment. After the chemotherapy is over I would transition to Herceptin every three weeks.

After your post, I think I want to revisit that discussion with her.

Lori - amazing news Yay!

Jinkala - glad to hear that the drains are out

kathy - now that you are driving, definitely get out there and try to do something that you enjoy

I am off to check out the July Chemo thread. I'm trying to wear my big girl pants about this but I am nervous as hell about this next step. Suddenly, and it's easy to say it in retrospect, the surgery doesn't seem as bad as facing this next part. Thank you ladies for all of your support so far. Jen is right - we'll be here for years helping each other.

luckykitkat09

@Lynn27
thanks!

@emilybrooke
I definitly will, although hard since I have an online trig class ^_^"eh..hehe!
Chemo experience is going to be different for everyone so don't freak out!! There's a lot of factors like age, endurance, chemo dosage strength, how you're recieving the chemo (my mom had chemp through a port and then pills), etc. Good luck Emily!!!!

kane744

Update on me.  BMX surgery June 26. This was my second bc boob. First time in 2008 had right lumpectomy, chemo, rads. Am triple neg. Developed lymphedema, right hand, arm, breast one year out from that. When second cancer found in left breast, decided to hav BMX with no recon. I'm 68 and want to heal fast and get back to my life while I'm still healthy. lol.  

So like I said, BMX June 26. Concerned about my LE, had both arms wrapped prior to surgery, IV in foot and BP from leg. Next morning my LE therapist was there bright and early to unwrap me, do some MLD and rewrap. Went home that afternoon. Should have stayed one more night in hospital but... Sat in chair for 2 nights then my dh made me a pillow nest in bed and he rearranged until I found comfortable spot. Ahhhhh.  Sleep.  Drains out in 6 days. Aren't they a bitch????? Felt much much better after that.

Now I've developed something called myofascial restriction which will be taken care of through PT and me. So far, lymphedema nicely managed on right and no sign of it on left.  Yea!!  Am diligent with my MLD and compression.  

Next Friday have port surgically implanted and begin chemo on Aug. 1.  Four treatments.

Pain is not bad. Off prescribed pain meds. Every day mid to late afternoon have burning sensation across chest and can barely stand anything clothing touching me. It's fairly intense. Then I take Tylenol. I figure it's nerve endings or some such and will go away with time.

My surgeon took me seriously when I said no recon and did a very nice job on me. No complaints at all. Am still taking it fairly easy. Drive for nearby things but wouldn't want to go far. I do my exercises and stretches, deep breathing, and have started on treadmill cause it's too hot and humid to walk outside with my LE. I am really amazed at how quickly my body bounced back. Am no spring chicken, ya know!

It's a journey, for sure.

curveball

@kane744, your next steps have been added. I'm amazed that it's still possible to edit the list, but it is, so keep those updates coming!

NanG

i have some questions....

1.  Can i run with tissue expanders in? I want to start running, but im not sure if i can now.

2.  Are you at risk for lymphedema in both arms from a DMx?  Or is it just from SNB>?  doesnt a mast. remove lymph nodes with the tissue anyhoo?

3.  If a tree falls in the forest...lol....just kidding.

LAstar

My PT said there is a tiny tiny risk of lymphedema in the side where no lymph nodes are taken, maybe 0.5%? Maybe this is just the probability that a lymph node is accidentally taken.



If a tree falls in the forest, wait 4 to 6 weeks after bmx before attempting to pick it up!

Lynn27

NanG:  if only sentinel node(s) were taken, your risk for lymphedema is extremely small.  It is not uncommon for a few nodes to be taken as part of any mastectomy just because of the way the nodes can be intertwined in the breast tissue.  Again, extremely small risk.  The problem comes with radical or modified radical mastectomy.  Those folks are at risk.

Off to be measured for a wig this afternoon.  Does anyone have thoughts on wearing a wig versus going "commando"?  I'm a CFO at work and wear a stuffy suit, etc.  Everyone knows I was out for BC surgery and most know that I'll be starting chemo soon.  I hear wigs can be annoying but I just don't have the panache to carry off a scarf/turban.  At home and around town, it'll be bare or wear a cap, but I'm unsure about work.

my3sunz42

NanG - I'm 5 weeks out from my surgery & my PS gave me the all clear/restrictions removed and that I can begin running again. I have TEs in and ran 3 miles yesterday & today ... all is good. Just remember, slow & steady wins the race :-) 

JenH13

Lynn- I have a wig that I wear only for work, or anytime I went to something important where I didnt know the people. Other than that I never wear the wig but a scarf or hat.  I found the wig to be hot and annoying but you do get used to it.  I wanted to try to keep work as same ol same ol so went on with the professional look.  Each person is different on how they feel about the hair loss.  I thought I would be just fine but then fell apart when it actually happened.  Just go with whatever makes you feel comfortable at the time since that is one stress you dont need   Good luck!!

faithhopenluv

Lynn - to wig or not to wig is truly a personal preference.  My company is pretty small and eveyone knows what's going on with me, but I have worn a wig throughout. Usually I forget it's on (until the second i walk in the door at home and then it is off), and in time I suspect most people forget it's a wig.  It can also be kind of cold in the AC without one.  It will also be then very hot if you have hot flashes, but they pass quickly.  My wig is very different that my hairstyle for the past decade in color and cut.  It gave me the kick in the butt to experiment and do something differet.  As my hair grows I don't think i will be so stuck in a rut.  I also have gotten more compliments on it than I have with my real hair.  If you do go for a wig, I recommend considering bangs - I haven't had them in a really long time but truly appreciated them when I lost my eyelashes and brows.  Not everyone will lose their lashes and brows, but it is something to think about just in case.  BTW they came back first and quickly - I was able to wear mascara by week 6 post chemo.  All of this is about what you want to do - it is not your responsibility to make others comfortable with your dx

loriio

NanG and my3sunz42-So impressed you're already thinking of running. I am 3 weeks out and I felt pretty good yesterday so I swept the floors, took the kids shoe shopping and then I drove for the first time since surgery. My chesticles are very angry with me. Maybe in another couple of weeks my pec muscles won't hate me so much.



Prayers and blessings to all!

emilybrooke

Lori  "chesticles" hilarious I'm laughing out loud!

Good for you ladies that are running already. It has been so hot out that I haven't mustered up the energy to go out walking. I really need to get on that. Before BMX I was quite the workout junkie - walking, weight lifting, circuit training, zumba - I need to stop feeling sorry for myself and get out there.

Today is the day - I am going to drive when my hubby gets home from work. He made me promise to wait for him because he's a little nervous since I haven't driven in nearly a month.

Hope everyone is having a good day!

Infobabe

 NanG

If a man offers an opinion in the forest but there is no one there to hear him, is he still wrong? 

loriio

Hey, I keep forgetting to ask. Does the pain medication/muscle relaxers give anyone else weird dreams? I had a bunch of weird ones last night but the weirdest so far was that I pushed a couple of the neighbor kids down and stole their pixie stix. (At least I hope it was a dream.)

Tweetyb422

Hi, this is my first post on this thread. I just found out today I will be getting a mastectomy, probably next Thursday....I am a little overwhelmed. I have completed 6 rounds of chemo, apparently my tumor is not responding to taxol, so dr decided to just go ahead and remove tumor, we had been hoping to shrink enough for lumpectomy...now I need to decide if I should do both sides...looking in reconstruction options, just so much to process...

shirleysangels22

Hi my sister's in pink,

I had a double mastectomy July 28th 2011 without recon. The nerves across my chest are just starting to use their inside voice. I'm 68 years young. I go camando. I have every type of form you can think of and every single one hurts or rides up to my chin. I have read on this forum that some sisters are 3 years out and are still having nerve and muscle pain. I'm just happy to be alive for sure. I'll deal with the little bit of pain. I was really really lucky. No chemo or rad. My oncotype was lucky #13. I stopped taking Tamoxifen 6 months ago due to some really bad side effects. I'm so happy to say one year out and counting.

God bless all the sisters in pink.

Shirley in Scottsdale AZ

Lynn27

Tweetyb:  welcome to the club no one wants to join.  The final decision must be between you and your docs and, yes, you have much to process.  My surgery bias is strong because of my history:  if a mastectomy is indicated, don't dink around with another lumpectomy, have the mastectomy and do both sides.  My rationale is that whatever combination of conditions caused cancer to occur in one breast still exists for the other breast.  Why go through this twice?  From personal experience, my "real" mastectomy found IDC that hadn't appeared on the mammograms and wasn't close to the DCIS everyone thought they were going after.  A lumpectomy (at least in my case with messy DCIS) would have missed that.  My "prophylactic" mastectomy found LCIS that had not appeared on any pre-op testing.  You know there are lots of reconstruction options, one being that you don't have to decide right now.  You can wait.  I recommend checking some of the reconstruction topics for more specific information.  I think we've had just about all kinds of reconstruction on this topic so we're still a source of information, but all of us are still in the beginning of the process and won't be able to give you valid long-term feedback.  Good luck!