February 2010 Mastectomy

dangergirl

Tumor Boards:

At my hospital they meet every two weeks, pathology, med oncology, surgeons, radiation onc, and related staff.  Patients are not allowed to be there, they present challenging cases for a very detailed roundtable review.  My case went to tumor board after two lumpectomies.  For me it was a marvelous way to get the benefit of multiple opinions, AND doctors interacting REAL time about my case, rather than reading path reports and making judgments that way. It was the only benefit to being a challenging case 

CAKEISGREAT -hang in there girl, and take your stool softeners, and don't stop until you're off the pain meds.  Relief will come . . . .

SKIN SENSITIVITY  - I'm four weeks out today, and saw a huge improvement in that over the last week.  My PS (for those of us with tissue expanders) told me to start massaging my chest at week two, and I laughed my ass off!  Right!!  Anyway, a week after that I could at least lay my hands on my skin, and now I can actually massage.  It actually helps relieve the spasms, and those nervy sensations, and I believe helped my skin sensitivity too. 

GUARDIENANGEL- I'm still sleeping on my back, after a month.  I can't imagine that the tissue expanders will ever be comfortable enough to allow me to sleep on my side <sigh> 

cakeisgreat

Hi, guys!  Feeling a tad bit better today.  More clear headed.  I'm going to pop a Colace tonight.  Isnt this all so exciting?

Going to the city tomorrow to remove 3 out of 4 drains.  Yippee!

Vicodin...where are you my new love (ha ha!)

PS--We've got some awesome homemade chocolate cake here!  I'm to bleck to eat it but I'm thinking of y'all every time I see it!

LauraM

Good evening ladies!   I just wanted to stop in and tell you how wonderful you all are and how much I love this discussion group.   I doesn't matter how I am feeling, what kind of day I am having, what type of pain I am having, how sensitive my skin is to the touch, I log in here and find that  am not alone! 

Happy healing to you all!

olivia218

LauraM -

I could not agree with you more! This is a great group and am so thankful to have found each of you!!

Cake - I am glad you are a bit better - for me a clear head took a few weeks. I felt like I was in a fog.  Let us know when you do want to eat chocolate cake because I know I will join you!!!  I hope the drains come out tomorrow.  My BS only took one out at a time.  It was a pain but he said that is all he ever does.

Since I hit five weeks today I was a bit shocked the amount of pain I had last night and today. It woke me up and was pretty consistent all day, anyone else have that experience??

Olivia 

chalex

Hi Ladies,

I hope everyone is having a nice evening. The weather is improving in London and it's nice to get some fresh air. The snow is starting to melt.... YIPPEEE.

Cake- Nice to know you are coming along. Good luck getting the drains out tomorrow. Hope the colace helps too.

Olivia- I am also 5 weeks post op and I still have pain. I still must sleep on my back too. The pain is too much to go on my side or front. I still need the pain killers too most days. I find one day I feel like I have my energy back and the next day I am toast....

Chalex

dickisonmomma

Hey I was wondering if anyone else who has tissue expanders has pec muscle spasms for like 80 percent of the day?  Even taking Valium really doesn't help.  I think PS filled them just too much during surgery but then again I am at the like the 2 week mark and I would think they would be starting to get better not worse.  Haven't even had a fill yet.

 On another note everyone becareful getting up at night.  I went to bathroom tripped over a dog and fell flat on an expander. Like worse pain I have ever felt BS and PS say they look fine but the last drain was turning lighter in color is kinda dark again (even though its opposite side).

Anyway I am just tired of the spasm thing.  Anybody have that experience and can tell me when it stops? I am getting kinda depressed now.

 Karen

chalex

Hi Karen,

Sorry, to hear you are having pain from the TE's. Sounds like a rough ride. I can understand why you are feeling down b/c you are having spasm and then the fall over the dog sounds nasty too. I am sorry I don't have TE's but I just thought I would answer you back to tell you I am thinking of you and hope you feel better soon.

Take care,

Chalex

dangergirl

dickisonmomma-

Hope you're ok after your fall, I was petrified about that.  

Everyone is different I think, but at week two I was still miserable with spasms from my TEs.  I started fills at day 7, then one at day 14, 21, and 28th day was Weds.  Everytime I got a fill it would increase spasms for 1-2 days even more.  I felt really nasty most of those first two weeks, fill days or not.  Around day 21 was where I started to feel it really ease up (with the exception of the fill days).  Between day 21 and 28 was like a miracle.  I started to feel almost normal again -- tight yes, but not constant spasms everytime I moved my arms.  Hopefully it will improve for you soon.  Be sure to keep the pain meds handy tho for your first fill . . .

guardienangel

hey ladies!

Sorry to hear that many of you are having a rough time! ouchy! five weeks and still painful! DANG,,its ss now,two weeks since my surgery  and omg! sometimes the pain on my left side is almost unbearable! and I still have one drain left, it was suppose to come out today,, but alas not!.. still draining to much... I am thinkin of naming it! hehhehehehehehehe,,,,

I wont be having a fill now till april 20th.. because of the travelling i have to do! 10 hours to my PS... so weather .. snow... and avalanches are not something i have the energy to go thru right now....

anyhow,,, i just wanted to pop in .. and say hi, and HANG in!!!! hugs to you all....

Faith316

dickisonmomma -- Oh my gosh!  I am so glad you are ok.  That can happen so easily. 

I hope you girls with TEs are feeling better soon.  OUCH!  I can just imagine how sore you must be.  I guess you'll be done with this part soon though.  I'm having delayed DIEP but not sure when.  I guess I'll be saying OUCH then and you guys with TE/Implants will be all done with pain by then!

What's going on with everybody else?  

My youngest son (14 yrs.) will be on spring break Mar. 22-26 and my hubby has also taken the week off.  Trying to think of something fun to do that isn't too far away.  Any of you have spring break plans?

chalex

Hi Faith,

We have March Break in Ontario next week. My 15 year old daughter is in Orlando, Florida with a friend and her family. She's missing a couple days of school. My son is 13 years old and he still has hockey playoffs so we will prob will. just have day trips going to visit his cousin in Toronto. I am not sure where you live but does your son like sports. What about a sporting event?

Question: How is everyone else's teens dealing with your mx and BC? I find my 15 year old daughter is very quiet about it all and can actually say inappropriate comments to me. I wonder if it's a defense mechanism b/c she's scared. Honestly, sometimes dealing with both my teens is more stressful than the BC..... just looking for some feedback on the subject......

Chalex

hereandnow

OMG dickisonmomma, I can only imagine the swearing that would have come from me if I fell on my TE side. I'm not a big swearer, but when they took my drains out, I swore like a sailor, they were these big flat drains called Jackson Pratt drains, and they hurt like hell.

It's 2 weeks today for me, and it's starting to settle a bit. I had my first fill on Wednesday - the PS had left 100ml at theatre, then he put in 50ml on Wednesday -said he's going to start slow and see how it goes. It felt a little tight but settled within 24hrs, and no big spasms. I was all ready to march down to my GP and get some valium, but lucky this time I guess. Next fill one week. I haven't decided whether to have a DIEP or silicone for reconstruction yet.

I'm taking less oxycodone, and more paracetamol now, and when I'm sure my wounds have all healed, I'm going to start back on gentle swimming. Seeing the oncologist for the first time today, it's a bit scary wondering what's ahead, but I just want to get it started, so I can get it finished.

We're heading into Autumn here in Australia, and the trees are starting to turn, it's a beautiful time of year.

dbdaze

Cake -- good to see your posts!  Hugs and quick recovery to ya.

Lisa -- thanks for stopping by and sharing with us "newbies".  Congrats on your last day of chemo!!!

Had my 2nd week post op visit this week -- healing is going fine and bandages came off.  I just have butterflies covering my incision now so can finally take a proper shower.  Boy, did that ever feel great.  Decided to do my morning stretches (arm exercises) in the shower with the hot water -- felt good but later I decided I probably pushed myself more than was necessary.  Ewwwweeee -- sore!  My husband asked if I was going to show him my "non-boob" but I wasn't ready to have anyone see.  I've always been flat chested so I'm not missing much but I always liked my little titties and I need time to get used to my new "look".  Is there anyone else out there who isn't sure they will go the reconstruction route?   

To all of you who are still experiencing pain, I vote to continue your pain meds -- there is no reason to suffer more than you are.  The pain meds help your body to relax and allow healing to take place -- that's a good thing.  

Sending positive thoughts to all,

Debbie 

dickisonmomma

Thanks everyone for the support!!

 Dangergirl - I will look forward to around that 21 day mark than and hope the spasms settle down. I noticed even opening the door to let the dogs outside the cold air hits them and there they go again.

Hereandnow - Yeah I think if they could have recorded that scream they could have used it in a horror film or something.  I still think that expander looks different than the other but doc says no it's fine.

 Hugs to everyone!!!

cornellalum

Debbie - I am not reconstructing by choice.  I had a bilateral mx, and I was a C cup, so it is quite a change in my profile.  I'm four weeks out now, and have been going flat since an infection is postponing my fitting for protheses.  I'm fine with my decision - no second thoughts at all.  PM me if you'd like to talk.

chalex

cornellalum- I sent you a PM.

Chalex

cornellalum

Chalex - back at ya! 

Cornellalum

MNLinda

hbowser, Karen, and anybody else with the painful skin problem -

When you have nerves severed during surgery and they regenerate, it's not unusual to have hypersensitive skin, often in places not very close to the incision, just like you have some numbness that is not right at the incision.  It feels sort of like a bad sunburn, right?  There's nothing actually wrong with the skin itself, it's just nerve signals zinging around.   The nerves will eventually settle down.

hereandnow

Saw the oncologist this evening, she was great. Will be having FEC x 3 plus taxotere x3. Start next Friday ( 1 week) yoiks!!

One part of me wants to deny this is happening at all. another wants to put off treatment for a while to let it settle in, and another just wants to get it started so it"s finished sooner. shit

Kayne

Hi All -- Haven't written in awhile-- Had been feeling blah!!

Cake- glad to hear from you and each day will get better!  I had my cake Tuesday night.  yum

dickisonmomma- You poor thing for falling on them!  OUCH!  I can tell you that I was misserable with my TE.  even went back to my PS thinking something was wrong, like too much fluid build up.  But that was not the case.  I was having spasms and my ribs hurt soooo much.  I had had one small fill at week 2.  I don't think that had anything to do with it, though.  My PS said it is just part of the healing process and TO TAKE THE PAIN MEDS.  I found my vicodin worked better than valium, but she said the valium is a muscle relaxer.  And OMG if I got cold, forget it. But it will get better, the last 3 days I felt so much better.  Which put me at 3 1/2 weeks post-op.  Now I feel like sh*t again, as I had a fill (not so bad though) but I also had my port put in yesterday as well.   I am soo sore.  And so sick of feeling sore!!!!!  The port is what is bothering me. Once again I can't drive because I can't really move my good arm!!

Dreary here in Princeton, NJ -- suppose to rain all week end.  Doesn't help my mood.  Going for a wig tomorrow!  Hopefully we'll have a few laughs.  Is that possible???

cakeisgreat

Hello, All!  Thanks for all the cyber hugs!  I love cyber hugs!  I'm sorry to all of you who are experiencing continued pain...I truly hope you feel better!  It's a good reminder to me that this is a  longer road than I wish it to be.  I hate being incompacitated!

Three of my drains came out yesterday, and the docs are very pleased with healing process (tho' I still feel like poop!).  Colace is helping YIPPEE tho my "hemmies" from my 4 sweet kids are a mess now, LOL!  Hard to walk, but less pain meds, so maybe things are looking up a bit?

ReginaR PM'd me...she needs are thoughts and prayers...she developed an infection and has been in the hospital since March 5!  She asked me to let you guys know cuz she's too depressed to post right now...here's what she wrote:

"I have been in Hospital since March 5th with infection. had to put in picc line & give me strong antibotics. They had to take me surgery on Tues & removed the tissues expander & infection too bad to replace, so I am so depressed my breast in suck in & deform. I got home this evening & can't stop crying."

Feel better ReginaR!

Edited because I forgot to say, the docs got my pathology report and...NO NEW or additional cancer found!  Woohoo!  So the original lumpectomy/rads took care of the cancer (unless of course we all know if it just pops up somewhere but no control over that, so oh well!)

olivia218

ReginaR

I am so sorry to hear you had to go back into the hospital!!! Big Cyber HUG, gently of course. 

Olivia

Faith316

Regina - So sorry to hear you have been having a really hard time.  Wish there was something we could do that would help, but hopefully just knowing that we care will help in some way. 

Cake- Congrats on the good pathology reports.  Also, thanks for letting us know about Regina.  Please keep us posted if she PMs you again.

Jen112263

Hi all- Thank God to hear Gina is home.  I had been emailing her and just opened an email from her that she is finally home.  {HUGS TO YOU GINA} 

I on the other hand went to the doc yesterday and they informed me I had a tumor under my armpit area.  Just lovely.....  Docs are haiving a meeting to see exactly how to handle it.  SInce I have my expanders in I am worried that I will lose them since they are so close to where tumor is. 

I was having such a good energy day yesterday and up until then it was as if someone just literally sucked the life right out of me.  I haven't had the best of attitude with anyone that has been close to me.  Like my wonderful husband and kids.  I am not sure they really understand.  Nor will they ever. 

I am going to TRY and clean my room today and put some clothes away to keep my mind off things.

Talk to you sisiters later.  {{Oh so gentle Hugs}}

cakeisgreat

Oh, cool!  Glad to heare Gina is home!  I read her PM to me a day late, so she must've gone home in the meantime.  Hugs to Gina!

And hugs hugs hugs to Jen11226.  I am hoping and praying for you that it's nothing, and that you can keep your mind off it.  What a pain.  I hate BC!  When is your appointment?  

guardienangel

Cakeisgreat - oh please let regina know we are all thinking of her!!! goodnees,, i am sure we all know the feeling of the fear of infection!!!! i know I do every day when I am clean!!!ing my one remaining drain and its redness around it.....

all in all,,, i hope you gals will feel better soon! I too am still very uncomfortable and still having issues sleeping... damn it...

mostly cause my chest is so TIGHT!!!! and I havent had a fill since surgery date, on Feb 24? so why am i still so tight??? and the one stupid DRAIN! lol...

my thoughts and prayers to all of you .. who are having a rough time!!!!

hugs

ReginaR

Hey, Thank you all for my posts & hugs,I am finally awake enough to post. Been In Hospital since march 5th (1 week) . I woke up so sick last Friday on My sweet Sarah Birthday, I really didn't want to go to the Doctor,( cause of Sarah b-day) but I knew something was wrong.  They put me in  Hospital Rt breast infection &  started me on Strong  Iv antibiotics  WBC (white blood count) was  4 times higher  than normal, After 2 days Iv blew all veins in left( I can't have any stick rt arm because of mastectomy) They put a Picc line in & cont. antibotices, My WBC count came down slowly. Tues They took back to surgery. The infection was so bad that they could not replace The tissue expander & surgeon could only clean out all infection & close me back up. I am so depreseed. The breast looks awful &  Cocaved & deformed & That why I wanted reconstruction so it would look normal. I can even look at it with out crying. Now I have another drain from this surgery! Lots of pain!  Please  pray I can get thur this because I am not sure I have any strength left in me! Have a good weekend! Love Gina

Thank again For all your support! Hugs

MNLinda

ReginaR, so sorry about the setback you're having.  Let's hope it's only a bump in the road and you'll feel better soon.  I know what you mean about wanting to look "normal" - I never considered my breasts my best feature, but I can't get used to not having them!

All the best to you.

caltex_catlady

 Yesterday, I went in for additional left node removal, as they found more ILC in my sentinel node at the time of mx. Coming out of anesthesia in the recovery room and a lot of the time since I've been at home, it in some ways feels worse than after the bilateral mx. How can that be? I feel like my arm is sticking to my side, and it's so sore that I don't dare try to move it much. I'm taking my vicodin, but that one area still hurts. I'd love to do a little sponge bath, but I may just have to be stinky a little longer. Boy, that day and a half when my first drains were out and I could both shower and sleep in bed were great. I'm back to being propped up in my BedLounge.

dbdaze: I had a bilateral mx and couldn't do reconstruction at the time and now must wait until after chemo. My original plan was for TEs then implants, but I've had a lot of discomfort just with this first stage so that I've wondered if I want to go through reconstruction.

cornellalum: It's quite a change going from C to flat, isn't it? I had the skin sparing mx because the plan has been for reconstruction, so it's not really flat, though. Someone else described it as the shar-pei look, which is about right. I'm sure it will flatten out (I'm just 2 weeks out), but I'm not sure I'd want to keep the look.

MNLinda: It definitely feels like nerves zinging. I'll try to keep in mind that it's all part of the process.

ReginaR: We're all sending your our best wishes, Gina. You're having a rough time. I hope it helps a little to know that these women all over are thinking of you. I know it helps me.

Jen112263: I'm sorry to hear about your new report. It sucks. We're here for you.

Cyber hugs to all!

Karen (caltex_catlady)

olivia218

Yesterday I went to the oncologist to find out they would like to remove the right breast.  So why was this not discussed before??? I feel like I am listening to the Monday morning QuarterBack telling me what I should have done -- where were you a month ago.  

She told me that I can not do radiation because I have lupus and it will severely impact that condition. The microinvasions are something that the oncologist did not address because she said she needed more information from the pathology report.  She said the margins being less than 1mm is not ideal and not considered "clean" and since radiation is out she was stumped about what to do next.  To tell you the truth I have no idea what to do.  

ReginaR - I am so sorry about the severe infection. I know it has to be so painful for you, gentle hug!!

Karen - I think the pain under the arm is painful, the other day I felt like I could barely lift my arm and I have not been through anything like you.  Gentle hugs to you!!

Guardienangel - so sorry you are not getting fills and still have drains. I know how good it felt to have them removed.  Gentle Hugs to you too

Jen - UGH!!!! I am so sorry! This is not an easy disease, not for any of us!!

Olivia