June 2012 Mastectomy

curveball

@tweetyb422 and shirleysangels22, I have added you both to the list

@infobabe, I revised your surgery date

Keep those updates coming!

luckykitkat09

I noticed a little bubble under my incision, should I be worried??? It doesn't hurt. It looks white to me. It's very small and looks like an air bubble or water bubble right next to the incision.

C-squared

Hi tweetyb~  I can't help but share my experience because it is similar to yours.  I opted to have neoadjuvant chemo prior to mastectomy (MX because I am BRCA+) and it seemed that Taxol was not shrinking my tumor either after 7 rounds.  Since it appeared that the tumor was actually growing, we decided to do a lumpectomy mid-stream chemo - I still had another 5 Taxol followed by 4 DD AC to go.  According to the US, the surgeon was looking for a 6.5 cm tumor (it was originally 3.5 cm at time of diagnosis).  The path report came back with a 2.2 cm tumor!!! The ultrasound was grossly off in its measurements!  I'm just curious what method they are using to determine that yours is not shrinking. I hope that you are as pleasantly surprised as I!

NanG

KATHY I KNOW!!.... i have incision questions for u guys too. mine kind of irritate me.  they look like line shaped bellybuttons.  remember when your baby's nub was falling off. MAN....i wanted to pick it all the time but i didn't. and MAN do i want to pick at these incisions.  but im resisting.  HOWEVER...i keep a close eye on things so that i can be sure if there are any changes.

so here's my incision tale. i wish they were symmetrical but they aren't, ho hum...no biggies.  they were just doing the normal dark crusty thing, and every so often i would take a bottle of saline solution that the wound care nurses gave me, spray it on the incision lines and use an absorbent pad they gave me and just kind of rub gently to slough off any loose flakes that were hanging around.  so so so sooooo carefully though.  which is actually hard to gauge considering half of the incision line is numb! lol.

anyways today was my incision line cleaning day, so i noticed that at the "end" of the incision line, the respective outside of my breasts on each side..so the side closest to my arm...the ps left these little fishing line loops there. not sure why, if they are purposeful or what but they are there, and around those is where the healing is taking the longest.  its still quite open there, so i dabbed them clean and there was the teeniest bit of blood, but its just superficial stuff, like surface stuff.  but anyways, just to be safe i put a little bit of polysporin on some qtips and massaged it onto the incision lines which did two things. 1.  it roughed off any remaining flakes and 2.  obvi, cleans and treats the open areas to protect from infection.  i think this is a good thing because the open areas are still open doorways technically to interested germs...i just wanna be clean and careful.

im so interested in starting to run!  i used to run, but i tore a muscle in my leg...(which by the way was the most painful thing i have ever experienced....UNTIL i had a double mastectomy. LMAO) anyways, it healed up...then i was retraining and then my husbands brother and mother passed away suddenly and unexpectedly....so i just got distracted and was not really in the right frame of mind for a while to run.  now however, i really want to run.

im kind of scared to do it though...here's my thought process....if im bouncing around is the saline all swishing and swooshing inside of me....ewwwwwww.  i did a little test today.  picture this...im all alone, i put my two hands over each breast like a hand bra and did a little half-jump in the air to see if i could feel anything sloshing.  LOL.  im such a spaz. im also kind of paranoid and protective over my squareboobs since i banged the cart that time...so when i actually got up the guts to "run" across the living room to catch the phone i held my squareboobs the whole way, and was giggling as i "ran" the whole way thinking about how much of a dork i looked like. LMAO.

now i imagine myself running down the road, the mighty warrior, champion of mastectomy...running down my street holding my squareboobs....LOL! THAT would be really funny....for me....probably for passersby too. but anyways.  to make matters even funnier I live in a really close knit community.  its pretty small and because we're an indian reserve most people grow up here thier whole lives, know each other and thier kids..and usually live on the same property. AND we run a printing business...the only one in our area.  So, im totally known in the community.  so, it would actually be like..."Hey, is that Nan running down Mohawk Road?  Why is she holding her boobs?" LOL! 

Tweetyb422

C-squared,



On my ultrasound they thought my tumor was 7 cm, on the pet scan the "hot" cancer portion measured 3.5 cm, so originally they thought tumor was smaller but surrounded by scar tissue. I had 4 rounds dd a/c. Both my surgeon and oc said they felt after physical exam that my tumor had shrunk to about half it's size, but they wanted to try for lumpectomy and suggested I do 4 rounds taxol. After 2 rounds had repeat pet scan which shoud all my nodes were clear but tumor not shrinking. I was also offered taxatore but they decided it was best to just go ahead and remove the tumor. I hope I get god results .

Binney4

NanG, good question about your lymphedema risk with a bilateral mastectomy. As Lynn27 notes, the risk with a prophylactic mastectomy is smaller than with SNB, and the risk with SNB is smaller than with ALND. But the risk is there, and it's for life. And if lymphedema happens to you, it's 100%.

Those of us with lymphedema -- and especially those like me who have it on both sides following a single node removed on the cancer side and no nodes purposely removed on the prophylactic side -- would encourage you to know and follow the simple lifestyle changes that can reduce your risk. Here's information about that:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

As our doctors typically don't know much about lymphedema and don't take active responsibility for diagnosing it, it to our advantage to educate ourselves and make our own decisions about how we'll deal with the risk.

Hoping you never join our Swell Sisterhood!
Binney

LAstar

Thanks for this link!

MMTOMH

Had my simulation appt today...sporting some fancy new black polka-dot tatts...nice!  Still don't have a go-date, but should be 1 1/2-2 weeks.  Excited to get the last phase of treatment over!!

Lynn27

NanG the "fishing line" at the end of your incision is the beginning or end of your doc's suture line.  The subcutaneous (absorbable, less scarring) sutures have to be started outside the body, run the length of the incision to sew together the tissue just below the skin (hence, subq), and then have to end outside the body so it can be tied off.  Then all that smelly glue is applied to the skin that is still separated (because the suture was drawing together the tissue below the skin) and it is all sealed with the steri-strips to help the skin grow together.  When the suture material dissolves and is absorbed, its connection with the piece still outside your body will be broken and the piece that is annoying you (and me) will drop off, rub off, could be gently gently tugged off.  If it was left long enough to poke through both a cami and a shirt until it begins scratching your arm (can you feel my frustration?), feel free to have DH use a nail clipper to cut it a bit shorter.

7of9

kathyhong: I had/have those too. They seem to be dissipating as I continue through the expansion process.

me_4givn

Hello Warriors!

I am going back to work this Tues. My PS says, "yes go." I am happy about this. My time here in CO is almost over and I know I will be in tears over leaving my family!!

emilybrook- I took Taxol and Herceptin. Here is some info I experienced. I was cold all the time. I also got nerve pain in my finger tips. I had no desire to eat and some nausea. I was very tired but worked during my chemo. I also am in the process of loosing my finger nails and one toe nail. I am tearful a lot (not sure if this is from chemo or because this whole thing has taken it's toil (I think a little of both). I was expecting it to be a lot worse than it was. I also lost all my hair (every where!). Hope this helps a bit and I hope you have a quick and easy ride through your chemo

kane744- I have a port and had one through all my chemo, it was wonderful and really didn't hurt at all. I was glad to have it.

NanG- most others have commented on LE. If all lymphs were taken then your chances go up on LE. You crack me up all the times reading your threads Thank you for your wonderful humor

LA star- You too are a crack up....thank you

Lynn27- Wigs are hot (not in the good term way). I found them to be itchy and I hated it! I wore nothing and was able to share an talk with others who were interested as to why I didn't have any hair. I did wear a hat at work because it was FREEZING with the ac on. The choice is yours some like it and other don't. No wrong answer

loriio- Your a wise crack too....thanks

Tweety422- ((Hugs))!! Praying for the medical staff caring for you to have wisdom in your care. There are many different types of medication combo's. I had DMX do to the location of my tumors. I didn't want it to come back again and go through the crazy again if I can reduce my risks. The choice is yours and not an easy one. Talk to as many people as it takes to feel good about your choice. Check out other threads for advise too Praying for us all!

I can't thank you all enough for your openness, humor, and closeness. Gosh.....you are all so wonderful

I started walking 3 mi. and feel really good.

oxoxox Jami <><

Lynn27

Had my chemo class today.  Port goes in on 8/1.  Chemo starts 8/2.  I'm already counting down to 11/15, the last one (before continuing herceptin). 

luckykitkat09

@7of9

Thanks



@Lynn27

I just read your question about wearing a wig or not.

Its not that bad after a while. I actually lost my hair from Alopecia universalis when I was 8. My hair has started to come back to some degree after 13years. To me I'm not personally comfortable without one unless I'm at home. I hated being asked questions because most people assumed I had cancer etc as a child. Since it is summer I can agree it is going to be hot. You don't need to wear a cap underneath the wig that might be better for your hair and scalp to breathe, it might be itchy for a day or so. After a while you'll forget about that though.

Jinkala

Once I get through today, I will have survived my first week back to work (yeah, only three days this week but they seem like such long days!)

Wearing the cami with the puffy fake boob is uncomfortable.  The cami itself is actually nice and soft but it provides almost no support for my good boob.  I ended up having to take the puffy fake out of the pocket and pinned it inside the cami a bit lower down to try to balance with the saggy good boob.  There are still really sensitive skin areas that just don't like having anything rubbing against them though so moving around is super uncomfortable. 

On the plus side, my drain wound hasn't really been leaking much since the first day the drain was removed (last Monday) and I think it's closed or mostly closed.  I have been leaving it with just ointment at night and covering it with gauze for protection during the day.  I haven't noticed any increase in swelling right around it and I've noticed some reduction in the swollen areas along my incision.  It's nice to see progress even if it does seem so slow in coming.

bevg49

I wear the camis every day but without the puffy fake boob. My good one is not to big and really flabby so I'd never get the fake to match..... they don't make 'em in flabby lol..... I wear a shirt over the cami and while it's a bit noticable it's not extreme. I love the camis for the drain pockets.

In one hour I go to the ps.... He is going to take out 2 drains - one because it's ready and one because it doesn't work, keeps inflating - the air is coming out someplace. Problem being this drain puts out about 60 a day. The nurse practitioner says it has to come out since it's not working right anyway. I'm scared. Where will that 60 cc's go. Also, after 6 weeks, I fear they aren't going to come out very easily. Still, I will be happy to be rid of them....Monday my first appt. with MO... We will see where that leads.

Healing thought and good vibes being spread around to all you strong ladies 

curveball

@bevg49, I think the 60cc's won't go anywhere, so you may need fluid removed by the doctor via needle if there is too much for your body to re-absorb. Look for a "waterbed" appearance, that's what fluid collecting under the skin looks like. I had about 60cc's removed a few days after my drain came out. It didn't hurt a bit.

NanG

so i was cleaning things up last night and those little fishing line thingys fell off! ha...who knew. it sure was a relief though. those things were irritating me. today i went to the drugstore and bought some vitamin e oil to put on the scars.  i was looking at bio-oil but ever since my dx (and even before that) i try to avoid parabens and pthalates..(sp?) so i got the pure stuff.

i had a good day. a good couple of days but ive been screwing them over with doing too much on those good days which leads to bad evenings.  you know what i mean....

I SLEPT ON MY SIDE ALL NIGHT LAST NIGHT!!!! i don't know what it is...if it was prayers or just something turned in my healing but its like all of a sudden all the swelling has dissipated, i can move around again like normal, all the puffiness under my arm is vanishing and my right TE doesn't feel like its floating up toward my armpit anymore.  small victories are sometimes the sweetest! 

luckykitkat09

@NanG

YAY!!! I was able to sleep on my side somewhat but not directly on top of the incisions for now. My scabs have fallen off but a little bit on the right side. It looks really weird.  What fish line thingys?? LOL

bevg49

good for you Nan and Kathy, sleeping the way you like to finally !!! I am planning to sleep on my side all night because finally, on day 42, I got the two drains out today ! What an unbelievable relief. I was scared to death of the pain but believe me, anticipation is worse than the actual event. They slid right out, painless..... The problem is the drain that wasn't working and was still putting out 60 cc a day. Thank you so much, curveball, for telling me what to look for... my chest as a waterbed...what an appealing visual lol.... He told me it might happen but never said what to look for. Just said I might get a fever and to call him. Right now I feel fluid coming out of the 1/2 opening I still have in the surgical scar....Hopefully it will come out that way and get absorbed but we shall see. It is just a major relief to have those things out....

emilybrooke

Bev - I am so glad to hear that you had your drains taken out - what a relief!

Kathy and Nan - I tried side sleeping on my left side (less painful side) but it didn't work out. I will try again tonight and see how that goes

bevg49

Thanks Emily - you can't imagine what a relief it is after six weeks.... I don't even care if I get a seroma. You guys will never believe what happened last night though. I feel out of bed !!!! Don't ask how. It's a queens sized bed and I must have been turning since I haven't been able to in so long. Suddenly I found myself on my hands and knees at 4:30 a.m. Thank God I didnt' fall flat on my chest. Something must have told me to use my hands to protect my chest. Thank god for DH. He jumped up and got me back in bed.....It was actually kind of funny. I'm 63, not 4 lol.... I have a 1/2 inch opening in the surgical scar and A LOT of blood/fluid is coming out of there now that there are no drains. I have to change the bandaging (DH actually) twice a day. I am praying enough comes out so I don't have to get the fluid drained by needle aspiration but all in all, I'm just so glad I am drain free for the first time since June 7. Next hurdle is MO next Thursday. Tamoxifin is a definite. Chemo a maybe. We shall see. Then I have to decide if I want to revisit the TE's. (I had them placed in my original surg, then had the hematoma which caused two emergency surgeries and they were taken out. Since I only had the right breast removed, can I deal with being lopsided? On the other hand, can I deal with more surgeries after having 3 in a 2 week period... I have to think about that.

luckykitkat09

@bevg49
the drains are the worse part! after those are gone everything is soooooooooooooo much better!!

@emilybrooke
good luck!

NanG

bev! congrats on the drains being finally removed....and what the heck...falling out of bed? awwww. im not even gonna lol  because u've been through so much.  here's a big *HUG* for falling out of bed....enough already!! this lady needs some relaxation!!!!! *another hug*

bevg49

NanG, I give you permission to lol about me falling out of bed. I actually laughed myself, after my heart stopped pounding out of my chest. For a second I wasn't sure where I was, just knew I was on my hands and knees for some reason...... It's always something.

loriio

My 12 year old daughter asked the question I knew she would eventually ask. First, she asked me if I am now I a breast cancer survivor. I told her yes. Then came the question, "Does this mean I'm going to get it?". Luckily, I had thought about it before and we had a talk about how my mom didn't have breast cancer so the fact that I do doesn't automatically mean my daughter will. We also talked about how at 12, I ate mostly junk food and no fruits and veggies. My daughter is a vegetarian and eats healthier than most adults. She's been that way since she first started eating. And we talked about how far treating breast cancer has come in the past 30 years (and yes, I know we have a long way to go) but by the time she's my age, there will be even better treatments. Has anyone else had to have this conversation? Any advice?



I hope everyone is doing well. I have my first fills tomorrow. Bev, please don't fall out of any more beds! Good job to your hubby for jumping to your aid so quickly. Pretty sure my hubby would have slept through it. And congrats on the drain removal.

LAstar

Good answers, loriio!  My daughter is only 4 but I am also waiting for that question.  

loriio

I finally had my first fills today.  I had 100ccs during the initial surgery, but today was the first day I was awake for it.  It wasn't nearly as bad as I was expecting.  I am feeling pretty sore today though.  But the pain is more sore muscle pain vs. surgical pain (if that makes any sense).  I think I'm already bigger than I was before the BMX.  I even have cleavage.  The square boobs are looking better and better.

Jinkala

Heading to my first visit with the Oncologist later this morning.  I wasn't worried until I started reading this weekend to try to anticipate what he'd recommend.  I'm really afraid that he might recommend chemo and I really don't want to do that.  I think my biggest fear on the chemo would be that I wouldn't be able to keep hiding my cancer from my mom and I know it would upset her greatly and in her condition (age plus some dementia plus some bad cancer related past experiences) it wouldn't be good.

Recovery-wise - swelling is gradually disappearing - hyper sensitive skin is becoming slowly more tolerable - no issues at the drain removal site - arm range of motion is good though not quite to pre-surgery levels.

luckykitkat09

Loriio:

That's great! Lol square boobs

I have my first fill tomorrow!



Jinkala:

I don't know what to say to that but I think either way your mom will find out. Its good that you're getting this over with early in life vs later. Everyone has different experiences with chemo. I hope you don't need it. Good luck!!

NanG

second fill today! im at 540 now.  and im looking less square.  ;o)

i am however getting this thing which i think is mondors chords. i googled it based on a bit of digging on bco....and that is what i felt earlier tonight. gross....SORE...sore since surgery actually. i thought all this time it was my drains but now im pretty sure its this modors thing. i asked the ps today at my appt and he said it might be scar tissue...but that was before i felt these two strings under my foob.

anyways. what a day! a long long long day!!! but cool news, i got blessed by a friend of mine who owns an online business. she sells purses and shades and scarves, and on her facebook group she secretly started a donation drive for me for after my surgery.  i asked her before if she could get me a light scarf for the summer to cover my chest and she got all her customers to donate and buy me stuff. i met with her today and she surprised me with a bag FULL of beautiful pashmina scarves and a pair of CUTE sunglasses!! PLUS they rallied together and gave me a cheque.  !! As Yoda would say..."Floored, was I!"

I was hoping today after my fill I would come out really busty and huge.  to me 120cc seems like a lot of juice, but no...less busty....more pectoral-y.  which is a bummer because im kind of sick of looking like a jersey shore gorilla....looking forward to when they are a bit rounder....