March 2014 Surgery

Juliecc

So true, Sandra.  There have been a few times that I have done things I shouldn't have and then I am in pain.  Yesterday,my left armpit was really sore.  I've been talking it easy and it's fine today.  Every once in a while, I am not aware of my expanders :-)

Franny, I never got back to you about you about Tamoxifen and vertigo.  I'm unsure if they are related since I had this issue back in October.  It is only happening when I lay down or sit up suddenly so it hasn't affected my driving or working.  The dizziness only lasts about 3 seconds.  So far I've noticed no other side effects.  I tire easily but that might be due to me returning to work 5 days ago.

linda505

Juliecc - are you drinking lots and lots of water?   I had a dizziness vertigo thing going on once for no known reason - turned out I was drinking TOO much water - it reduces your blood pressure and depletes your electrolytes.  My GP finally told me drink some gatorade or something else to keep the fluids that I needed but not strictly water.

Juliecc

Actually Linda, I don't drink enough water!  I think it's more of an inner ear bones thing since it's positional.  I do have low blood pressure and faint every few years.  I did that in public last year and slammed the back of my head on the pavement.  I took a trip in an ambulance and had a cat scan and all that.  I had concussion symptoms for a few months.  I thought my vertigo a few months ago was from that.  Franny, I did email my Onc about the vertigo and asked about the travel sickness pills my doc recommended a few months ago (Meclizine - over the counter) and she said  this:

Tamoxifen can make you feel lightheaded and dizzy in the beginning, but then you'd get used to it over time with less and then resolution of the symptoms usually. You can try to take it at night and see if the symptoms would improve in the morning. You can try Meclizine and see if it would work if the vertigo were to continue.

vlnmama

Wow, haven't had much time to check in here for a few days, and it's taken me some time to catch up! I've had a really crazy, busy week: my 9 year old son and I dove right back into homeschooling full time this week, and I started teaching again. I only have (had) 4 students, but acquired one new one this week, with at least 2 more starting in the next few weeks/months. I may have to stop accepting new students soon if I get more after that. I really can't do a whole lot of teaching; the homeschooling takes up so much of my time and energy as it is. The thing is that it's not only the school work that is time consuming, but he is really quite serious with his cello and practices at least 1.5 hours a day. But he's so young and gets distracted so easily, that that 1.5 hours can take up to 3 hours to get it done if I'm not with him, so I try to be with him as much as possible. And then I try to get my violin practice in too. I can finally play and practice at least 1.5 hours (haven't had the time to see if I can do more yet). I'm going to start playing in the kids' youth orchestra rehearsals again too; they have an adult player in each section to back up and help the kids, and I'm in the 2nd violins section. The director has been asking when I'll be back. There are also 2 final concerts left of the season, so I'm happy I'll be back in time for those, since I missed one concert already.

I'm also going to PT 3 times a week, and am getting more exercises each time, which I have to do twice a day at home too. I really have found them very helpful though, so it's worth the time and effort. I also had another vitamin infusion at my Naturopathic Oncologist yesterday, very early in the morning, and it was very needed. It had been 2 weeks (she was out of town), and I'd missed it. I am feeling an incredible jump in my healing process, and also in my range of motion. Suddenly I am catching myself reaching further and higher for things, and with a lot less pain. I was even able to help my son get his cello in and out of the car to his lesson this morning, and we took turns wheeling it. 

Oh, I have that "cording" too I think, assuming it's the same thing. I have a very tight, tendon type looking cord going from under my armpit to my under arm. That's one spot where I feel quite a bit tightness and stretching, and that my PT is working with. And yes, she does specialize in mastectomy and lymphedema rehabilitation. Makes all the difference I'd think.

I am hoping to regain full range of motion and strength back, but I am very happy that I can at least play my violin again!! That was the most important for me.

I was hoping to have some time to rest this weekend, but it's already filled with things to do and go to. My husband is playing at some informal concert (he's a pianist) tomorrow afternoon, so of course I'm going to listen. This morning was cello lesson, now I need to go shopping for a color printer (our really old one finally broke, and I need that for our homeschooling). Tomorrow there's church and the concert, and then it's time to start the work week again. Back to business as usual I guess. I am grateful to be able to do it again though!

Big hugs to everyone, and have a great weekend. 

Ysr5761

Hi there!

I was wondering how long did you wait to have your surgery? I have stage zero DCIS, positive estrogen receptor and <2 cm. high nuclear grade: 3. Should I wait for my lumpectomy? I see you have both breasts removed? That seems very radical for a stage zero. I am concerned of I wait it could worsen:(

Ysr5761

Hi Julie,

I hope you are doing better. Are you still on Tamoxifen? If so does it work better if u take it at night? I'm curious...I'm a newbie!

Yolanda 

Juliecc

Hi Ysr, sorry you are here.  Yes I take Tamoxifen at night.  I set a daily reminder on my phone for 8 pm.  I still feel dizziness when I sit up or lay down but it's not bad.  

Choosing between lumpectomy/radiation and mastectomy is a very personal decision and you need to weigh in a lot of factors.  Go to this thread and read Bessie's post (I think it's post number 7):  http://community.breastcancer.org/forum/68/topic/806074?page=1

As for timing of surgery, I would want surgery as soon as possible if I were you.  For me, I felt the lumps in October but my doctor wasn't concerned.  Then I had my mammogram/ultrasound/biopsy in late January, officially diagnosed February 3rd, then had surgery on March 10th.  My surgery couldn't come fast enough.  I hated the thought of knowing I had breast cancer growing in my body.

sandra4611

Ysr,

Welcome to our group. Mastectomy isn't radical. It's one of two choices, neither of which are good. Cancer takes away most of our choices. What you choose depends on your diagnosis: your type of breast cancer, your stage & grade and ER/PR status is where you start. Just knowing the kind of cancer you have is not enough. Age makes a difference as well since the cancer in young women is more concerning. Some women are quite "attached" to their breasts and cannot deal with the thought of losing one or both. Others are willing to trade them for the peace of mind they hope will come from reduced worry of recurrence. There is no right or wrong decision, But decisions made without knowing all the facts can lead to "buyers remorse."  Sometimes you can get all of the info you need from your doctor. Sometimes doctors believe so strongly in one choice over the other and don't offer information about both.  

For me, DCIS was suspected in one breast only. The other looked fine on the first and second mammogram as well a an MRI with contrast. Stereotactic breast biopsy confirmed the cancer diagnosis in the right breast along with the stage and grade. After consultation with a breast surgeon, oncologist, and radiologist as well as research on the Mayo Clinic, MD Anderson, and Johns Hopkins websites, I made my decision. The pathology report after my double mastectomy showed the left breast had LCIS, which is more worrisome than DCIS, and is often missed with mammogram, ultrasound, and MRI. This is not an uncommon story. It validated my gut feeling. Even if nothing had been found, I still would have been happy with my decision because it was made with full understanding of the differences between lumpectomy and mastectomy, their possible complications, and the other treatments that would or would not be required depending on my decision.

Kitty62

Ysr, I was maybe a bit radical with my decision, but I did what was best for me. They told me I could do either a lumpectomy with rads or mastectomy. I did the lump first to get it out as soon as possible. I did not want rads as it scares the bejeezus out of me. I did not want the chance of the radiation hitting  lung or messing with my heart. I'm 52, and a worrier. I did not wish to have to deal with this EVER again. The lump. wasnt that big of a deal and was off work for about a week. They got all the cancer at that time, thank God. So then I had time to schedule with the best PS in town and his schedule was booked out til March. The waiting was very hard, but it allowed me time to get prepared. I realized this year will be long and hard, but for me it was the right choice for ME. Listen to your docs and if you don't trust them get another opinion. Good luck and don't be afraid to ask questions. 

ucfmom

Linda, I requested a copy of my itemized hospital bill because I have an Aflac cancer policy and needed to submit it to them so I could receive my benefits.  Mine was over $132,000.  My max out of pocket is $1500 and I've already paid over half that so I only owe the hospital $724.  I haven't received any bills yet but have been checking my EOBs online to see what's been paid by insurance.  I have United HealthCare and was shocked to see the contracted amount they paid the hospital was less than $14,000 on that huge bill.  The hospital bill includes the implants, a whopping $59,000!!!  That's just crazy.

Juliecc

My bill for my double mastectomy and tissue expanders was $65,000.  But I went home that same evening so it was considered "outpatient."  My co-payment for outpatient surgery was only $250.  If I had spent the night, my co-payment would have been $500/day for hospital stay so $1000.  Luckily I was totally fine to go home that same night!

lynnlyre

Been a long weekend.  Thursday night my drain clogged and I had it removed on Friday.  The removal went better than I thought it would as I did not have a lot of time to think about it.  No real drainage after removal. 

Saturday was a long day with me out of the house from 12:30 to 8:30.  Result was my sleeping really well without pain meds Saturday night. Down side was I did not get out of bed till 12:00 today and after a shower my pain began to get to me again.  Finally broke down after dinner and took pills.  It is finally getting better this evening.  

I'm feeling a bit frustrated at this point.  I'm a suppose to return to work in less than two weeks now.  I probably won't be able to get a prosthetic until after I'm suppose to return to work and I cannot seem to put more than one day together at a time without needing pain meds and sleeping half a day.   

Sailon

lynnelyre -- take it one day at a time.  It is amazing the progress you make week by week.  It is hard to feel day by day.  I went back to work at 4 weeks post surgery and it was ok  -- I was exhausted by end of day -- but doable. -- Try to get lost of sleep and take it very easy for next two weeks.  don't do anything you don't have to do!

Sailon

Franny -- I am taking Arimidex (post menopausal)  I started on March 10th -- so only been on it for 1 month. I have experienced no side affects to date.  I think the side affect vary person to person -- per all the reading I have done.  The benefits definitely are a good thing over the long haul.  

linda505

thanks UCFMOM and JulieCC for sharing your hospital bills.   I haven't seen the itemized bill yet but I will as I have requested on - I can only see the amount online with AETNA - who has this bill in review.  I do not think it includes anything other than the surgery room, recovery room and overnight stay though as the BS surgeons bill covers the mastectomy and the PS bill covers the expanders and that surgery.  My deductable is $3000 so I have paid that already to everyone else involved lol - so I will not owe anything to the hospital.  Still waiting on clarification on what I will have as copays on the chemos.  I do know that I have a copay everytime I walk in the cancer center of 60 no matter who I see or what I am doing other than labs.  That means for the 12 doses of weekly taxol I have a minimum of 60 per week plus coinsurance for meds etc.  Oh well - it sure isn't cheap getting cancer.

linda505

So today I have an appt with my PS to look at the healing issue I have.  Friday, his office called me to remind me of the appt and I told the front desk girl that I would be there with "tassels on my Foobs"  she laughed and said "well that will be a first".  So I just showered and got dressed

Kazzy115

Linda - LOVE!  💖💖

VintageGal1111

hahahah Linda, love it!!!!!!!!!!!!!

Juliecc

Ha ha Linda.  Tassels on a surgical bra :-)

sandra4611

Linda, you've started a trend for sure with your tassels.

chknfeet

Hello all!  This is my first post to this board.  I had my bilateral mastectomy on 3/28, yet STILL have 2 drains.  First 2 were removed 6 days after surgery.  I was supposed to have one removed Friday since I had 48 hrs of less than 30ml output, but I couldn't make it in so scheduled for today.  Well, I started putting out more yesterday so had to cancel.  Is this normal?  Thinking I should have kept my mouth shut but wanted to avoid having to go in to get them drained manually.  I feel like a human octopus!!

linda505

Hi chknfeet and welcome to the thread.  I had drains that progressively got less each day but I also did not do anything that first week.  I heard in here from others that the more activity that you do with your arms the more draining that you will have - so I guess I would look at that and see did you do some more things this weekend?

Sailon

chknfeet -- I think you are normal -- what is important is that you do not get the drains removed too early.  the PS knows -- so trust her/him.   Better to be cautious and wait till drainage is down than get them out and have more drainage than you body can absorb.  Welcome to the March Sisters!  

Frostecat

Linda so cute!  Chknfeet just had my drain removed this morning - I almost cried tears of joy. Was supposed to have removed last week but it kicked it up a notch so was unable to.  3 weeks with that thing, I could not stand it any longer and my PS would not let it stay in any longer than 3 weeks due to infection possibilities.  I feel like a new "free" woman!  Also got a 100 cc's fill, I hope I'm not speaking to soon but it actually feels better, of course I am on pain drugs.  :-)

Kitty62

Linda, that is too funny! I have to find some tassels! My PS is pretty dry, but I think he would bust out laughing if he saw that. 

I'm 3 wks post and tired of sitting around!! I have 2 friends coming at noon and am dying to clean my house. Resisting the urge to do the dishes, but I think I'll just throw them in the dishwasher(they need to be hand washed).  Have a few more seasons of Mad Men to watch. A book I SHOULD be reading. A friend gave me The Anti-Cancer Book. My hubby read it first and really enjoyed it.  I really really really wish I could drive. Just can't seem to get done with the Percocet. Down to 3 a day total.  Sorry ladies, but I'm bored and starting to get crabby. Glad to have company coming. What is everyone else up to today?

Kitty62

Yay, Frostcat! I know how happy you must feel. My PS said he won't start my fills til I'm at 6wks post op. Glad  to hear it didn't hurt. How do they look now?

chknfeet

Thanks all!  I have a feeling I did push myself too much.  My hubby took the week after my surgery off.  Him, coupled with siblings, parents popping in and out over the first 2 weeks bullied me to staying put.  Family all left Friday so I convinced hubby to go on a 2 mile walk and let me drive locally.  Thinking that may have pushed the drainage.  I'll be patient. I have an appointment Fri for my first fill and hopefully they will pull both at that time.  I will be exactly 3 weeks.

Linda - Love the sassy tassels!

Lakegirl1

Kitty362... I am with you...I AM BORED!!!   This only gives me time to sit and stew about chemo and losing my hair.  

Hopefully, PICC line comes out tomorrow.  Woo hoo!!!  I will finally have a day when I don't have some medical something hanging out of me, no drains or PICC. If so, we start appts for the next phase, MO, gen surgeon for port, PS for fills before chemo starts...I am so not ready for this part!!!

Kitty62

Awww Lakegirl, so much to deal with. What are your plans today? Movies? Book? My exercise for today will be a shower.Haha it poops me out, but gotta look good for my girlies coming over.  I love my Mad Men, but I think I need to watch something different. Something that my family wouldn't enjoy, but that I will. Going to scour Netfix...

VintageGal1111

Hi Kitty

 Oh I would be bored too! When I saw my bs five days post op he said I could drive! I waited a couple more days though. Seemed so soon. But I just had a bmx no recon. So only had pain meds the day after I came home from hospital. 

It is a very warm day here in NH, weirdly warm and windy. I hear it will be in the 20s when we wake up Wed morning crazy.

I went to the gym, did 45 min on the tread. One month post op I don't dare do any machines.  Hubby put up a closet pole shelf kit yesterday so I have been switching all my clothes from one closet to that one. umm I have too many clothes.....

We just finished watching al season 6 of MadMen, love that show.

Have fun with the girls!