continued Tissue expander pain!!

Hi Ladies,

Welcome LisaEllen to our little group of multi-talented and always right women. Gosh if we weren't consumed with breast cancer and expander pain who knows what we could accomplish. Some ladies say to take bigger fills on your first 2 fills because after that it might get more painful. I did not take anything over 60cc at a fill. I am a suck for pain so I would take 1mg of ativan if you can for the pain after or at the same time as the fill and have some pain pills on hand. I can usually take a ton of meds and still be walking and talking.Other ladies take 30cc every week or 50cc-60cc every 2 weeks. See what works for you.

Take Care,

KES

Hi Ladies,

Sharon,

Isn't this weather just the pits? Poor Easter Bunny, he had to come in the snow. I might just join you in Texas. At least it will be warm there.

Michelle,

There is a new thread started called "arm cording and pain". It might be helpful for your Mom. Hope that she is feeling a little bit better.

Take Care,

Kerry

Hi Ladies,

LisaEllen,

I also had trouble opening pill bottles with both my hands. One day I could not even push the toaster button down hard enough to make some toast.  I think that I tried about 7 times and then it finally stayed down, but then I had a new jar of jam to open, boy did that HURT. I can laugh about it now, but I think that I was crying about it at the time, being in pain and that useless. I was determined that I was going to make jam and toast even if it killed me. And I did. I think that was my big accomplishment for that day.

I also used the little heat packs that guys put in there mits if they are out in the cold. I asked my PS if I could do this and she said yes. I moved the little packet around a lot because I was afraid of a burn because my skin was numb. Another lady that I was talking to used warm wet washcloths right over the breast but this did not appeal to me. Check with your PS first as they are all different. I had no trouble sleeping as I could find a comfortable position only on my right side and I would curl my shoulders inward and this seemed to take the pressure off of my chest. I do wish that I had done some good abdomen exercises though as I found it very hard to get in and out of bed. Seemed like my whole chest would shift when I got up. And the same with lying down.

Hope your next fill goes O.K.

Kerry

I have  a recommendation for anyone with tissue expanders: get a referral to a physical therapist, preferably one who has worked with mastectomy patients.  I had to have PT because my right shoulder froze up after surgery (not uncommon), and my physical therapist has worked on my underarms and chest also.  My right underarm had a lymphectomy and was all puckered and dented in.  She did deep massage ("myofacsial release").  Now it looks almost normal--and I'm sure the more normal structure will be better for avoiding lymphedema.  Also she worked on the skin all around the edges of the expanders (you roll the skin between your fingers, pulling it up), which made them so much more comfortable.  And I had some hard ridges at the sides of my expanders, which are almost gone now.  Plus, the foobs look better, too!    Since I've had the PT, I really don't feel the expanders nearly as much, and when I do feel them, they aren't painful, just the "they are in there" feeling.  So if you're having problems, you might want to give it a try.

Hi Sharon,

I think that your photos look GREAT. Very symmetrical. I think that when they drop you will get the effect that you want. I can hardly wait to get out of expanders (sounds like some kind of diaper product) and graduate to implanters. Thanks for sharing the photos with us.

Don't shovel toooo much snow.Spring is coming sometime soon.

Kerry

Hi Lisa,

I am thinking about having my ovaries out to prevent from taking tamoxifen, I'm 45 and my doctor is trying to persuade me to leave the ovaries even though my cancer is estrogen positive. How are you doing without ovaries?

Rshat,

I think there's lots of info on other topics about life without ovaries. I had mine out at 45, took Femara, and have been blessed with minimal hot flashes. Vaginal dryness, though, has been a problem.

Good news, expander girls! After owning these things for 5 months, they are actually beginning to feel like a part of me! I am no longer struggling with the irradiated side, pushing it away from my armpit toward the center. It's finally behaving all on its own! And I am more comfortable without a bra now. It's still a weirdness to lie on my belly during a core class, but I just go on a do it.

32 days and counting till the exchange. They may be behaving, but they're still on their way OUT!!

Anne

LisaEllen, Rshat - If I were to do the fills again, I'd do the first two fills at 60cc and then I'd cut back to 30cc every week.  My third 60cc fill was a killer.  If your are already in a lot of pain following a fill, I'd definitely cut back on the next one and don't think you can just go back to full fills.  Stick to what is comfortable.  It's not worth that much pain just to be done a couple of weeks earlier.

My ob/gyn said if my genetic testing came back negative he suggested to keep my ovaries for the next 5 years and then have them taken out at 45.  I'm only 40 now and on tamoxifen.  Timing would seem to work out for me and then I could switch over to Femara.  Not having any problems on tamoxifen.

Sharon - Ok, where is this photo site?

Anne - I still have to wear a bra 24-7.  Feels weird without one.

Ladies - Had my last fill yesterday! 30cc on my left and 55 cc on my right.  Right side was a little smaller so my ps evened it out.  Anyone else with different cc totals.  My final totals are 480cc on left and 505cc on right.  My ps doesn't overfill, said that he would put the biggest ones he could get in.  Looks like I'll probably get at least 500cc so I think I'll get that C cup I was aiming for.  Surgery is set for May 7th.  6 weeks from now.  Also has anyone done a tummy tuck?  Thinking about doing that at the same time as the exchange.  Just wanted to know what the pain or recovery is on that.  I had very large twins that has left me with a lot of excess baggage.

Sandy

I have been reading this message board daily as I also have had pain from the expanders.  I just had my third fill this week,  Each fill has been 60cc and I am not sure what I started with.  I am actually finding that although I feel pressure from the muscle stretching, I actually improve each time I get a fill.  My PS said I need two more fills to put me back to my B cup and then 2 months later replacement surgery.  My nights are horrible. I still (6 weeks since surgery) cannot lay in bed.  I sleep in the recliner but wake up many times during the night in such pain.  It feels like someone superglued two bricks to my chest.

I have seen messages about pictures under a few reconstruction topics.  Where are the pictures?  The only ones I have seen were in the PS office and I am actually pleased that the pictures were worse then I look.

Thanks Sharon.  I hope you make it to Florida.  The weather is beautiful down here!  Head down without your husband, he can meet up with you later in the week.  I am going to send Timtam a message, thanks for letting us know who to contact.

Hi all -

Well, I joined your club last Wednesday - unilateral mastectomy with expander reconstruction. So far, so good! My PS took off the bandage Monday and said it looks "really good." I guess THAT's a relative term, huh? My husband didn't puke, pass out, or pack his bags, so I guess I can deal with it.

I've been reading this thread since I decided on expander reconstructon, and I must tell you that you are definitely the funniest group on this site! (Well, the drinking thread is pretty good too.)

So far, so good, but I know I'll be back for advice and to vent.

Sue

Hi ladies,

I actually started with this group on the "pain with expanders" thread and was referred here for more information.

Debbie, like you, nights are the worst for me.  I've never been one to sleep on my back so this is definately a challenge. Sleeping on my side doesn't seem to be an option - the pressure and pain is way too intense.  

Has anyone found anything that works particularly well? 

...Pretty woman....walking down the street....Pretty woman....new boobs are really sweet...pretty woman!     

 Hanna 

ps - edit to my semi original karoke version! 

Hey Kerry!  You have a good night too....now I can't get the song outta my head!  

Rshat-I choose to have the oopherectomy in May 2007 when my port was installed.  My oncologist felt that we could oblate the ovaries medically during chemo but could not convince us that the medicine was 100% shut down.  We used Natural Family Planning before the Dx.  I sure didn't want to abstain or get pregnant during the sixteen weeks of chemo.  Having my ovaries out was the assurance that I needed.  If you can take the anti-hormone therapy, why do you need your ovaries out? It is a personal decision sometimes.  I also wanted to have my cervix and uterus out.  My oncologist and Gyn convinced me that I would take longer to heal, start chemo later, and could always go back to get them at a later date.  The uterus and the cervix are the innocent bystanders, they told me, not the hormone producing organ.  The whole body is implicated as far as I am concerned.  The whole thing has betrayed me deeply.  Luckily, I am learning to forgive.  I went to a cancer conference last May and saw the most wonderful performer.  Her show is called "Jonna's Body, Please Hold".  I laughed till I cried and boy did that hurt!  Now I am in Menopause.  Why call it a pause?  Gee, as if we needed a monicker that sounds like "time to stop."  I vow to be in better shape than ever soon and never take a day for granted.  The hot flashes are extreme for about three months then, they eased off for me.  It gives me that "I just exercised look" without trying.  I use a sleep aid or I can't sleep.  I prefer the anti-anxiety med. to the Lunesta-types.  Perhaps you will have to get to know me better to realize why.  I am on Arimedex for 5 years to stop the estimated 5% hormone production that comes from the fat cells.  I am dry from my nose to my toes and inbetween.  That's OK, lotion's cheap. Today is a new day, my friends.  I'm hoping that if you are hurting that it is physical only. Here's hoping the pain is soon a distant mammory!!lol, Lisa