2012 sisters

Anonymous

BetNY22 - not sure if you're going to the main facility in the City, or one of the satellites... I'm at the Commack facility for MSK and Julie Fasano is my MO. I love her. So sweet and caring. Truth about MSK is that they are all going to be good at their jobs and skilled at what they do. They likely wouldn't be there otherwise. But they'll all have different bedside manners. Feel free to PM me if you want to chat more. Sorry you have to join us, but welcome!

BetNY22

Thank you Ramols, I appreciate it. I am going to the main hospital in NYC although I wouldnt mind going to their facility in Basking Ridge NJ.

You are probably right about them all being good. Thanks!

Anonymous

I'll stick my nosy two cents in again, BetNY22 and say that you might want to really consider the Basking Ridge location if it is close to you. I don't know much about it - but I do know that not having to schelpp into the City for all my treatments and f/u appointments has been wonderful. I can't imagine the drain of having to do that. The Commack facility is about 15-20 minutes away from my home and I really feel like I've gotten super care there. I've only gone into the City for my actual surgery, as well as some appts with my plastic surgeon (I used Evan Matros - in case you're intersted in reconstruction at some point). Otherwise - the staff at Commack have been able to manage all my other care. Good luck - and stick around here, as you'll get loads of support and hopefully feel like you have a place to unload when you need to.

halfcan

I hope you ladies have a great weekend. It is a long weekend here in BC so we are off to Whistler for a change of scenery and a nice escape. Why not...I'm feeling good and may as well enjoy before dose 3 on Wednesday! Not sure of cell reception so will check back on Tuesday for sure to see how everyone is doing.

Hugs and feel good wishes to all of you!!_

marianelizabeth

halfcan that is great! We are going to Riefel Wildfowl Reserve tomorrow AM so at least a fun plan for Sat. 

Adagio off to Tofino and it is going to be a fine weekend!

I sure appreciate how better I feel the last days before the next cycle, both physically and emotionally.

Marian

Joanne_53

Jenjenl, great news

Liefie, I had really wild dreams at the beginning with tamoxifen but not anymore

jenjenl

The plan has been finalized.  On Monday I will be having the right breast removed and necessary nodes - have to have lymph nodes removed bc of the mammary node (no TE).  I will then start chemo for 4-5 months, rads I think he said 6-8 weeks.  Then about 4 months later remove the left breast and do reconstruction on both.  As long as that plan get's both breasts remove and cancer gone I am GOOD with it.

His thought is let's just get the cancer (critical path) taken care of and worry about reconstruction later.  I, to a certain degree, am rolling with the professionals.   I'm also thinking this will help with healing and can still snuggle on the left with the kiddos.

I just see everyone getting TE and immediate recon and it makes me feel like I am doing something wrong.  Thoughts??

MirandaSW

Jen, I dont think anything is WRONG, really. Every Doc is different. It seems easier to me to do both mastectomies at once and have TEs placed at that time. That way they can do your fills over the several months you have chemo. Then when you are ready the surgery to replace  the TEs with implants can be done...and you are done with surgeries.
Doing it the other way seems like a lot of surgeries. Too many times under general anesthesia, and way more money.  I got my bill awhile ago from my first surgery. It was the Bilateral mastectomy, anesthesia, OR, meds/supplies and hospital stay.  The bill was $42,500. All those charges for anesthesia and meds you will have to pay for 3 times by doing all the surgeries separately.

I wouldnt say its wrong, but just more work and more recovery periods. Especially with kids. I rather be down recovering and few times as possible.  Good luck Sister!

BetNY22

Thanks Ramols, I tried switching to 3 different MO's at Sloan, 2 in the city and 1 in Basking Ridge. Both in the city it was a longer wait then my December 10th appointment with Dr Dickler and the Doctor in basking ridge was only saving me a week. So December 10th with Dr. dickler it is. I just worry so much since it will be 7 weeks post mastectomy. I wonder how quickly they can get the port in and start me on Chemo. I work in manhattan so I definitely want to do radiation there but if I went with Chemo in Baskin Ridge it would be the same distance as Sloan from where I live (I don't plan on going to Work on chemo days but definitely on Radiation days).



Jen I Also just removed one breast and will do the other when I do a diep flap when I am done with all the treatment. I did do a TE in the one gone already. I really don't want to do temporary implant if I could help it, the less surgeries the better, we shall see!

Chrisrenee77

Mirandasw- I'm jealous with you totals for your surgery. My BMX and all ancillary charges were close to 70,000. Then for my TE placement was 145,000.00, just for the TE's only was 107,000.00 of that charge 25,000.00 was just for the TE's. I damn near died when I saw the invoice. Luckily, all I had to pay of that charge was 75.00. When I was looking at my claims since May, there is almost 750,000.00 that's been billed.

KarenZ0305

Hi BetNY,



I started with Dr. Theodoulou in NY but switched to Dr. Atieh-Graham in Basking Ridge since I live in NJ and love them both.



Had my herceptin today. Saw my dr. too and she said I have a bit of cording so time to move that arm a bit more!



Have a good weekend ladies with nary a SE!



Karen

Cindi74

Those questioning the different taxol schedules:

http://www.cancer.gov/clinicaltrials/results/summary/2008/weekly-paclitaxel0408

min937

Jenjenl - I am brand new to this forum, but since I just had a bilateral mastectomy two weeks ago, I thought I could give you a fresh perspective on what to expect . I also had tissue expanders put in, so that may alter things a bit. BTW, I'm 40 with kids ages 10, 8, and 5.



Clothes - For the past two weeks I have worn button down shirts, although I think I could actually start wearing t-shirts, etc. again now, but haven't felt the need to try. I have heard about women not being able to lift their arms after surgery, but I didn't experience that. I have shampooed, blow dried, etc. my hair myself since two days after surgery.



Sleeping - my sister-in-law bought me an awesome body pillow that I have used, and I've slept in my bed every night since coming home from surgery. I had to get used to sleeping on my back, but the pillow makes it pretty easy. I was able to sleep on my side a couple nights ago (exactly two weeks out), with the support of the pillow.



Activity - the drains were a pain, and on days when I maybe did too much or was too active, I would be in more discomfort at night. Easier said than done with young kids, but accept whatever help you can so that you can rest those first couple of weeks. I was given a camisole to wear to hold the drains, but I actually ended up just pinning them to my surgical bra. Someone did give me a pouch with a long strap to wear around my neck in the shower to hold the drains, and that worked well.



Now that my drains are out, my discomfort is mainly just with my tissue expanders and the related muscle spasms/stretching. As I just told my husband today, can you believe that it was only two weeks ago that I had surgery? Time does go by quickly, and I found that each day after surgery got a little better. I hope everything goes well for you on Monday!



Mindy

Tazzy

Huh… reason I have missed you all was you were removed from my favs… darn it. So be warned, likely to be a long winded post.

Juneau: glad the snow didn’t hit you – saw your governor say that on the tv – and really, like enough already.

Miranda: gentle hugs for minimal SE’s

Scottie: I thought you ladies would appreciate the message. Yes I am getting excited about going home. Not quite as excited as my Mum… but yes – will be good to have a Mum hug.

Unowhoandwhy: crap you have to be here and join the club no one wants to be in, but as you are you’ve found a great bunch of women, with great advice, comfort, laughs, rants… whatever you feel you can let it out here. Sending you positive mojo for good results

Marian: I am sure I knew lots before chemo seem to make my brain mush, but thanks for the confidence. When I was dx’d and informed the chemo protocol I would be on, I didn’t know one taxane from another – I mean why would I? From what I can gather is that taxol (although very similar to taxotere) is not as hard on you. Taxotere I believe is more aggressive and how I understand it, what you are given depends on your grade, size and type of cancer. All I know is that taxotere finished of my cancer – I had 4 infusions. I’d be really interested to hear what your MO say though as this is IMHO.

MrsCich: hope your time in the BGC was bearable.

Ramols: glad all is OK with you – hugs

Liefie: so that’s what I have to look forward to on tamox eh? Oh! well back to my youth I go

Jenjen: that is wonderful news and make sure you grab every little positive with all your might. I had mx to rightie – no reconstruction for a year due to high % of recurrence for me. And now, I am OK with that. I don’t think there is a right or wrong… there just is !!

Ann: your camping trip sounds like a lot of fun.

Halfcan: have fun in Whistler – safe driving. We had our first snow flurries today… more coming I guess.

sorry if I have missed anyone but am thinking of you all ((hugs))

As all Canadians have mentioned, long weekend here. So wherever you are, whatever you are doing, stay safe, stay warm, be happy and lots of hugs to you all xxxx

marianelizabeth

Tazzy - IMHO???

juneaubugg

Jenjenl; male drs might consider reconstruction less important then getting the cancer out. For me they were BOTH important. I would just confirm and reconstruction and tissue expansion on the side that's gotten Rads is possible. I hear if makes things a lot more difficult.



The other ladies are right... There is not wrong way, but if reconstruction is something that's important to you; you should let them know this now.

Chrisrenee77

Marian- IMHO in my honest opinion.

allurbaddayswillend

Tazzy, I'll chalk it up to chemo brain for not remembering this but reading your post, it's SO GREAT to hear that when you had chemo the Taxotere "finished off" your tumor. There's a woman in the Sept chemo thread whose tumor didn't really shrink on AC but the Taxol is reducing it. It's so good to hear (rehear?) these things as I'm wrapping up my Taxol treatments! It helps drive away the little evil doubts that creep in in the late, dark hours...

BetNY22

Thanks Karen, I may just call and ask about the availability of those docs.

How many of you have had your drains in as long as me?, I am on my 17th day! still 60mm a day.

I hope everyone has a great weekend!

Bet

lostinmo

Wow there are a lot of new people on this thread since I was here last. Stupid lack of internet has kept me from keeping up with everyone.

I finished rads on Oct. 3rd and flew to join my family in CA for a few months. I am done with active treatment now and go for a checkup in Jan.  I don't get to post as often but I am cheering everyone on!

lisa2012

Hi all, been super busy at work. All going ok( aug 7 exchange surgery healed, smaller than expected but who cares and look great in clothes, no infections or lumps. )

My issue now is the AI they put me on, Arimedex. After 3 mos they took me off to see how I felt. Achey, hurts getting out of bed, back stiff all day, could function but talking fair amount of ibuprofen. Spirits low, could be from AI or just because of it all...

plus why more problems.???See MO next week. Body dies feel bettter niw on day 9 no AI. Doc suggested lexapro. I am considering but want to see what AI they put me back on. Drugs to cope with side effects of drugs? I am 30% ER positive so I doubt he'll drop it yet. Discouraged, thought I was done feeling bad. Sorry to whine.

Outdamnedspot

That's what we are here for, so whine away!

 I have been wondering what AI I'm going to get on Tuesday, that is if my Oncotype results say no chemo. I'm 100% Estrogen +...probably take a truckful to work. The waiting and wondering is sure getting to me.  Trying not to worry about SEs, but reality is, everything has SEs.

Hope everyone has a decent weekend, minimal SEs and some good times. 

Tazzy

Marian: IMHO – In my humble opinion.  Or as chrisrenee said ‘honest’

Allurbaddays:  It is wonderful to have things reinforced in our brains – we always know, but sometimes nasty thoughts creep to the front.

Lostinmo: great to hear from you and that your treatment is all done – woo hoo!   I finish rads on Nov 14 – see my MO December 27 and RO sometime in December.  Hope CA is treating you well.

Lisa: glad to see you posting again – busy is good.  As outdamspot said – whine away, that’s why we’re here.

Off out to meet friends for lunch and then a walk afterwards. Will be wrapping up warm against the cold.

Wishing you all wonderful weekends, with minimal SE’s and happiness in your days.

llr010200

Jenjenl,



I agree with juneaubugg, I would look into the mastectomy without te if you are having radiation. In my case I had chemo first because my case was so aggressive, had mammary node involvement and blood invasion so stopping the cancer was foremost. I then had a BMX with te's to keep the skin stretched and muscle envelope for later reconstruction. I recently completed radiation and my skin definitely feels tighter. Seems like without the te's it would be difficult for the skin to stretch enough for my upcoming reconstruction. My ps said that the te's are really needed for the best reconstruction outcome after radiation. I know that everyone has a unique situation though so just wanted to share some of my experience to give you something to possibly explore if you choose. Good luck and God bless! :-)

Jennie93

This cancer thing sucks.

I mean, it really really really sucks big time.

That is all.

gonzard222

Hi ladies!! Its been a while since I was on here.....sorry just have a min..will have to come back tomorrow to check up on you all but I just wanted to see if you had this info. When I met with the nurse navigator (the one time, useless) she was going over alot of info and giving me resources to read up on. Well she gave me a small magazine called Cure. Its free to cancer patients, survivors, care givers and healthcare professionals in the U.S. www.curetoday.com Just wanted to share that with you. If you didnt already know. Sure hope your all having a good weekend! You are all such strong women and I admire all of you!! Talk to you again soon!!

Hugs to you all!!!!! XOXOXOXO

Robin

Chrisrenee77

Question for you ladies. For those that have had TE's a while, do you sleep with a sports bra on or not? I slept last night without a sports bra on and I found it to be downright uncomfortable. I don't know if I've trained myself to only be able to sleep in something holding the bowling balls together or not. Just curious.

Kj2430

Hi Chrisrenee77, I have had TE's since 9/7/12. I was told by my PS not to wear anything that is tight under my breasts. So, right now , I go without anything or wear just a tank top, without the elastic. At first when I tried to sleep on my side, it was very uncomfortable. I had all kind of pillows under, in the middle and top of my breasts. I finally went on line and found a site called mycomfortquest.com. They have a side sleeper pillow made especially for those of us that have had mastectomies. A little spendy, but well worth it for me. I love mine!!! I am about to start my chemo and then my final implants down the road so, I will get a lot of use out of my side sleeper pillow. I wish you the best of luck.

llr010200

Betny22,

I actually had 2 of my drains in for 24 days so I understand what you're going through. It really sucked but boy was I ecstatic when they were removed. Hang in there!

KarenZ0305

Jennie93 - I agree! This cancer thing sucks the big one!!!



I am kind of in the home stretch (10 more rads and herceptin every 3 wks until April) but I still have moments where I think holy shit has this really happened and it was bad enough that I needed chemo?! And I worry ALOT that it will either A) come back or will develop leukemia in 5 years. I think when I get past that point I will worry a little less. But will never not worry.