Calling all Stage II Sisters!!!

Hi everyone, I've been following you for awhile. My name is Laura and I have had a BMX with an immediate recon so I have TE right now. I am currently in the middle of chemo A/C then Taxol. Thank you for sharing your thoughts so far it has helped me so much!

I don't post on this thread a lot but I do lurk. Quick welcome to the newbies

slousha, You crack me up. A little beer before bed. Granted I think I would prefer chocolate but if a little beer works for you then it sounds OK to me. (slousha and I go way back. We met on some other threads).

kmpod, my guess is that at 60 you are post-menopausal as I am at 52. My onc put me on arimidex for at least the next 5 years. So far my only complaint about this med is that it makes your body feel 80. Squatting and bending down are no longer easy tasks but you just work through it....better that than the consequences of not taking the meds. also, go to you home page and there you will find the way to add your diagnosis.

Hi everyone, got my stage 2 dx today. So now what. I dont know, had bmx with immediate 1 step alloderm reconstruction 6 days ago.  Really do not want to do anything further although EVERYONE is telling me I am crazy. I have osteopena so hormone therapy not an option. I keep reading that ILC only responds to chemo in a very very samll percentage of people. Just dont know. The one decision I am so glad I made was the bmx. At least I know one arm is preserved for IV's blood and blood pressures. Had I waited and had a reoccurance then both arms would be off limits and lymphedema has me scared especially since I fly every week for work!

Dixie - I  have Osteoperosis beginning stage.  I"m 53.  I take Arimidex.  My onc told me that Osteperosis is a small concern compared to the bigger concern of cancer returning and she was adament about me taking an anti hormone med.

I don't know what 1-step alloderm reconstruction is.  But don't let people talk you into something you're not really sure your want.  You are the one who has to live with it, not them. It's your body. I was unsure about  reconstruction but, went ahead with it anyway.  Turns out, I hated the implants, and the recon was extremely painful, and so last month I was deconstucted.  I feel much better now.  Feel more like myself.  I should have gone with my gut in the beginning.  Do what feels right for YOU.  That's hard because you don't know what recon feels like before you have it and it seems to feel different for each person.  But If you aren't completely sure you want to do it.  Wait, give yourself time to consider all your options.  Don't rush into a decision. 

I wear a prosthetic, right now it's just a prosthetic puff in a regular bra, but it looks great and feels weightless. I"m now so comfortable, I forget they aren't real!. 

Did you have an Oncotype test?  Hellpful information for making decisions. 

dixiebell - I am also osteopenic but am taking Femara.  More important to prevent a recurrence.  The osteopenia can be monitored and there are other meds to keep it at bay.  I would also recommend an oncotype if you are unsure about chemo.  It will help you make an informed decision.  If you are flying and had two nodes removed you really should be wearing sleeves as a preventive.  Did they take a node in the SNB from each side, or were all your nodes on one side?  I had a SNB on my prophy side as well.

faithroad - a one-step with alloderm is a BMX with the immediate placement of implants (not TE's) and alloderm slings to help hold them up.  Dixibell's recon is completely done - hence the name one-step.

kmpod - hello! Yes, using a sleeve preventively for flying on a permanent basis to prevent LE is my understanding.  I just went to my PT today for exercise and asked her about this again - she said it is rare to develop LE from flying without a sleeve but she does have one patient that it happened to.  I figure it is a small inconvenience and I will feel less anxious about it with the sleeves.  The reason I asked her about it today is that she has to refer me to a fitter, they don't do it at the PT place and I thought today was the last time I will see her, but she is having me come for 3 more weeks.  I don't fly very often (once or twice a year) but when I do it is cross-country, so a longer flight.

faithroad: It was my understanding that Tamoxifen increases bone density only if you are pre-menopause, but it actually decreases bone density if you are post-menopause?

Hello, all,

 Just wanted to add a few words about lymphedema risk. So much controversy, and it's hard to figure out what to do. For the record, though, there are lots of us trim gals on the Lymphedema board here who were told that because of being slight we didn't need to worry about lymphedema. It's true that being obese increases the risk, but being thin sure doesn't eliminate it!

Since I'm one of several women here who developed lymphedema after flying (and seeing as how it pretty well ruined that trip, not to mention complicating the rest of my life), I just wanted to say that a very well-fitted compression sleeve and glove or gauntlet (fingerless glove) might very well give you a whole lot more than simply peace of mind -- like protection from this chronic condition, for instance. Besides being useful for travel, compression garments can also help when you're exercising or doing any strenuous or unusual (for you) activity. 

I had a single node removed on my cancer side and no nodes purposely removed on my prophylactic side, and I now have lymphedema on both sides and in my chest and back, and everybody told me I was not at risk and not to bother with any precautions. I wish I'd know better! Just so you can make your own informed decisions about these issues, here's some information that might help:

Proper fitting of sleeves and gloves/gauntlets:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Why you need hand protection, not just a sleeve (the author of this brief article is one of the leading lymphologists and lymphedema researchers in the U.S.):
http://lymphedivas.com/lymphedema/gauntletandsleeve/

Two sites with suggestions for lymphedema risk reduction:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

http://www.lymphnet.org  (see their Position Papers on Breast Cancer/LE Screening, Air Travel, Exercise, and Risk Reduction)

Wishing you all no "swell" days, ever!
Binney

I posted this in another forum, but since I am now an official Stage II sister, I feel I should hang out here a bit :-).  I've looked at my posts going back to my first dx in June and it's still so strange to be discussing all these personal things.  I do appreciate all the information from everyone and this website has been invaluable.  I've gotten better info. here then at some doctor's offices :-)

Anyway, I'm hurting, I'm sore and I'm tired! It's one week and a day since my 2 surgeries and this has been an emotional week to say the least.  Now that I'm all patched up, drains are out, etc., it's time to heal.  My first MO appointment didn't go as I had imagined. I had to use the internet and MY OWN RESOURCES to figure out my true final path!

Seems my SNB was negative, but my BS still found positive axillary nodes with micromets.  I suppose there was a good chance of this since my tumor was almost under my arm.  My breast still looks nice (although black and blue), but MO just jumped into the chemo discussion saying pre-menopausal node positive women get chemo.  I'm the one who had to bring up the Oncotype test to him!  They do the test with pre-menopausal women who are both node neg. and women who are 1-3 node positive.  For sure they do it with post-menopausal node positive women and he initially made it sound like it wasn't an important test for me.  Heck, I even mentioned that perhaps I should have my RO order this test.  After that, his nurse explained more about chemo and ordered the Oncotype test.

Anyway, the MO said I was Grade 2 and I have since found out I am Grade 1.   Maybe he was thinking I was asking about stage, but who knows.  THESE STATS ARE IMPORTANT when it comes to making decisions that can affect the rest of your life! Time for a 2nd opinion!   It may be the same, but at least I'll be dealing with a different personality.  I do know the various choices I have, but a fresher, more vibrant MO may be best for me.   It's a relationship that will be for 5 years or so and I say that you should like the doctor and their office.  Location is also important as no one wants to be driving all over the place if you don't have to.

On the other hand, my RO yesterday was great!   She said to just hang in there until the Oncotype test comes back and we can talk again.   She mentioned it was time to talk to my 9 year old daughter and she also answered a lot of my husband's questions.

KT66 - Thank you sooooo much for correcting me regarding the Tamoxifen and bone density.  I had no idea it was different for premenapausal women.  I took it before and after my hysterectomy.  My Onc recommended the hysterectomy so she must have just told me about postmenapausal SEs.  I very much apologize for my error in information, and thank you for .sharing your experience.

SpecialK - thanks for the info on one-step Alloderm. 

I started Arimidex a week and half ago.  My feet and calves are swelling if I sit too long at my computer at work.  I get backaches at night now.  My joints are getting more stiff/sore.  I am already at the beginning stages of Osteoperosis.  I don't imagine this will help any, but my Onc said she felt it was the best thing for me to take regardless of the osteo...another choice was famera.  Don't know much about that drug.  At least I'm not as tired as I was when I was taking Tamox.

Special K - Does Femara increase osteoperosis?

I'm sorry to be so clueless...what is a TAH/BSO?

(I've changed my user name- KT66 sounded like a shouty 66 yr old, & I'm a quieter 45 yr old!)

SpecialK & Faithroad, I'm on femara too- it does deplete bone density as well as it totally gets rid of all estrogen. Hence I'm on the zoledronic acid to stop further bone loss and allow the bones to rebuild. (if you start it ask to have anti-nausea meds the first time as the SE's are worse for those who haven't had bisphosphonates before- each time you have it SE's get less)

My SE's from femara (I've been on it for nearly a month) are stiffness too. Sometimes I think I'm going to have a hot flash, but then the feeling goes away- phew... 

This is my first post. I am almost two weeks post lumpectomy, meeting medical oncologist monday to discuss/set up chemo. I of course am scared and unhappy.I am new at this cancer thing, and some days I don't handle it very well. So glad to find a place where I can talk about it without getting the "I'm so sorry for you but please don't talk about it" look. I have tried to convey to my family and friends that I am not going to die anytime soon, but they are scared too.  The bad news is that the cancer center is a 120 mile drive, that's what I get for living in the boonies.