continued Tissue expander pain!!

Sharon all i can say is holly smokes, you can survive anything!!!

Truly Wonder Woman!!!!

i was considering after several surgeries, family history, dr appt and meds that prophylactic mastectomy that my dr recommended sounds kind of scary.  would you ladies take one over the other.  would you continue with all of the uncertainty of when cancer may hit you or take the pain of the prophylactic surgery?  I thought who better to ask than you brave women that are going through it or have gone through it.

thanks for your time and comments they really help in this process.

heather 

Heather,

At my first BS consultation, the doc. told me to consider your breasts one organ.  That made sense to me, and stuck w/me thru the decision making process.  She also talked a lot @ QOL, for the rest of my life.  I, too, went w/bm bc I wanted to limit my risk of recurrence as much as possible.  I'm 40 w/ two small children. 

Denise, do you happen to know how much your alloderm cost, if you don't mind me asking.  Just received an itemized hosp. bill for my bm w/tissue expanders (I requested it), and the cost of my alloderm was $31,000!  Sounds VERY high to me.  I've been searching and searching and cannot find anything to give me an idea of patient cost for alloderm.  The hospital  & my ins. co. were NO help.  The hospital is reviewing the bill, and the ins. co. has already paid their portion.     

My PS and clinical nurse were out yesterday, so I'll call again.  Obviously, this amount greatly impacts my financial responsibility to the hospital, plus if a mistake, this is why people pay so much for health ins.!

Good luck, 

Teresa    

teresa,

my alloderm was also around $8000+

-Janelle

Hi Ladies-

Been away from the thread for awhile but I wanted to poke my head in and say hello. I was reading the latest postings and wanted to say congrats to all of the ladies who have recently completed their exchange. Way to go!

To the ladies who are now struggling through the discomfort of the expanders HANG IN THERE. I will tell you that I helplessly watched my mother writhe in pain for 7-8 weeks. Shortly thereafter things did start to improve. She didn't think she was going to be able to take the discomfort from the expanders but thanks to encouragement from the MOST amazing ladies EVER (on this thread), she will have her exchange on wednesday (6/18). Yes, there is a light at the end of this very long tunnel. Jani, Kerry, Sharon, Hanna, Suave, Ruby and everyone else who helped us get to this point....we're almost there! Thank you, thank you, thank you. I swear we couldn't have done it without you.

Much Love,

Michele and Donna (mom)

Michelle,

I am new to this thread but I followed you and your mom's story.  I am so glad things are better!  I am getting my exchange on 6/23 and cannot wait.  And thank heavens for the ladies on this site.  I started reading this thread a few weeks after my bilat in April and this is what helped me through the struggle.  Again, "bras" off to all of you wonderful ladies!

-Janelle 

I had my last drain out on Friday and while it was still putting out about 60cc's the PS said it should come out since it had been in for 3 weeks. They also were going to put in a 100cc fill but it started feeling quite full at 75cc's.

The question I have is now the bottom part of the breast has fluid build up in it and is quite strange when I touch it. I had an unpleasant experience with the lumpectomy developing a seroma and bursting the incision open so of course I am quite paranoid about that happening with the incision from the mastectomy and expander installation. I am wearing a sports bra per the recommendation of the PS and his nurse but well still concerned.

It does not hurt too badly due to the swelling other than my shoulder bothering me, which it did after the intitial surgery.

Hi all!

I'm new here.

Bilateral on May 23rd w/expanders.  No fills yet and two drain tubes still in.  My ribs are hurting really bad on the left side below/under the expander, and I feel a more pointed pressure straight back from the expander on the right side when I lie down.  I'm trying to keep my pain meds to just at night, but it's tough.  I'm scheduled to start chemo once the drains come ut and they can put my port in.

Sarah 

Michelle, thanks for the update. I am so glad your mom is better. Let us know how the exchange works out.

I really need to hear from those of you who have gone through the expander process.  I am in terrible pain from my last one (which was on Friday and I still hurt a lot today, on Monday).   The first 5 fills were fine, but the last two have been intolerable.  I just called my ps to ask if I should go every other week instead of weekly, and the answer was that it would make no difference--that it would hurt just as much no matter how long I waited in between fills.  I have 2 more to go until I match the other side.  For those of you who have already gone through this, do you agree with the ps?  Will it still hurt as much even if I lengthen out the times between fills? 

Christianne, I totally disagree with your PS.  The pain is caused by your muscle trying to stretch and it needs time to do that otherwise it is fighting the expander.  I say wait an extra week and see how you feel. It's worth a shot IMO.  My fills were usually 60cc every 2 weeks and I never had a problem at all.  Best wishes!

Christianne, I'm w/rubytuesday.  The whole point of expansion is to stretch your muscles (and also allow for tissue/blood vessels, etc. to strengthen and heal).  So, anytime you really stretch a muscle you will be sore.  Waiting for a fill everyother week should allow your body some time to bounce back from the last fill. 

Are you taking a muscle relaxer, too?  My clinical nurse explained that a muscle relaxer (I had valium) is sometimes better than pain meds.  In saying that, I had very little pain thru the whole process.  I was very sore in the beginning, but after about wk.2 I was fine. I took pain meds w/valium for the first week or so, and then only OTC pain meds and valium the day of and night of a fill.  I only woke up one time after a fill in pain.  The next fill my PS okayed me taking 10 mg of valium at bedtime instead of the prescribed 5 mg.  No problems after that. 

Also, how much is he filling you?  My PS explained it would get more uncomfortable as I was expanded more.  Makes sense, bc I was being stretched more and more.  And are you wearing a sports bra all the time, even to sleep?  That can help as well.

Hope this helps and good luck.

Teresa

test results came from the dr himself at 9 pm from home.  The call came across number unknown, so i hadn't answered it all day and finally picked up the phone after he had called numerous times.  I of course didn't know  that it was him.  If the conversation starts with i didn't want to call you at work and please sit down,,,,you know it is not a good outcome.  I have cancer in the left breast and now need to make an appt for a plastic surgeon and oncologist.  I go tomorrow for another surgery to be set up and for radiation . They are planning on taking nodes, nipple and possible whole breast.  I have to make some big decisions tomorrow. what i thought was my prophlactic mastectomy just turned into the dr making the decision for me.  Please remember me and my family in your prayers.  I don't know what to tell my three little ones. This is Pagets cancer and is very rare he said.  Notify me if you have this form of cancer....i need all the help i can get.

thanks

heather 

Heather,

I am so sorry to hear of your news. Sorry I don't have any info on Pagets disease, but I am sure that someone has a thread here about it . Check the active conversations topic. You might be able to find it.

Christianne and mnatiell,

I agree with Ruby. Don't let the PS fill you too fast and too soon. Waiting 2 weeks might be better and go for smaller fills. Take the pain pills and give your body time to heal. The PS might have put some saline in the expanders at the time of surgery.

Kerry

Hello to all, I've been reading for a few weeks but this is the first time posting. My bilat mast with tissue expanders was 3/6/08. 

Heather: I'll be praying for you, your family and the doctors to make the right decision for you. I had 2 lumpectomies (rt side) in '03 and radiation and then 2 lumpectomies on the left side the fall of '07.  When another re-excision was needed, I opted for the bilat mast. to be followed by chemo.  It was an easy decision for me.  I'm older, the kids are grown and out of the house and there wasn't much left of my chest anyhow.  I'm very happy I had it done although I can't wait to have the expanders exchanged.  I just wanted to do what I could to have bc behind me.  Although it hasn't been fun, I was never miserable with the surgery and the fills. The chemo has made it more difficult but that's almost over too.  How old are your children?  My grandchildren are 5 (twins) and 2.  They know Nana's sick and had medicine that made me lose my hair.  They've been fine with that but I just read that the word cancer should be used so they know it's only certain sicknesses that cause hair loss etc.  You don't want them to think their illnesses are the same.  Hope this helps a little.  It must be so hard to face these uncertainties at your age with young ones but they'll be such a comfort.  I know how much my grandchildren cheer me all the time.

Love and prayers, Sandy