continued Tissue expander pain!!

Hi everyone!

I know I disappeared but just as you said Jani, I am wrapped up with Christmas, hubby being home and training for a new position at work and working the Christmas rush.  I work at 1800flowers and just trained for Cheryl & co...what a mess!  Anyway, Margaret I sure hope you feel better soon!  Glad to hear at least the expander discomfort is gone with your exchange!  Hope you are feeling better soon.  I did go to the dr and all is well, no infection and nothing out of place...but Jani, I do know what you are talking about with the sudden change in your expander situation.  I had that too and remember the exact moment it happened.  One side even changed shape and seemed smaller.  The nurse practitioner thought I was bonkers til she asked the PS and he showed her, and me...that as the expanders fill, they move around.  My port used to be right on top in the middle and now it is on my side almost under my arm!  So they MOVE as they fill!  That could explain your sudden relief!  I am about the size I want to be now and had the same trouble as you ladies are explaining, trying to fit these hard rocks into a bra!  Almost impossible.  I spent the afternoon trying on bras and it appears I am approx a 34 C cup.  That's pretty good, right?  I figure that size, I can dress 'em up or dress 'em down!  LOL  As I told you all I had a terrible time after that 100 fill...then a week later I did a 50 and still hurt just as bad.  I ended up taking more than 3 weeks off and what a difference that made!  We did 25 last week and I go back on the 27th and hubby might actually go with me.  They keep asking me if I am big enough and I told them I am so used to staring at them I an unaware if the size is right or not.  Does that make a bit of sense??  So my ps told me to try on bras, find the size I like and bring it in and he will just do his best to fill it for me!  I liked that idea and so I have been trying on bras for a few days. 

Well, off for more flowers and cookie orders.  Now that shopping is mostly done I will have a free minute here and there to write.  I hope you all have a great holiday if I don't talk to you sooner. 

Take care,

Teri

Margaret,

I am one of those quite readers of the group. I have however asked a couple of questions and you were very helpful to me. I am glad to hear that you have made it through the exchange. I am just curious was your exchange done in the hospital ? My ps will be doing it in his office . He has a separate surgical unit. My thoughts are with everyone on this site... Have a very happy and healthy holiday to all.

Denise, I'm not sure what the other ladies have been told but my ps likes to fill from 150-200 more than the size you want to be.  He said that way you get that nice slope that a natural breast has rather than the very ROUND fake boob look.  I like that idea as I didn't have that before bc!  LOL  Something good to come out of this diagnosis!  Cleavage and a slope?  Yay!

Jani, I hope you are done with fills soon!  I am hoping for me as well.  Where are you going on your holiday?  Lucky you!  I could certainly use a vacation with some down time. 

Hope Margaret writes soon and lets us know how she's doing.

Other than the normal "pains" from these hard expanders, I am doing okay the past week or so.  I actually don't have too many complaints!  LOL  Husband got his first look at them and was surprised to see that they actually looked good.  We did a lot of looking on the internet at what the reconstruction process looked like and some were scary indeed.  But he said compared to alot we seen mine are looking very good.  Scars are VERY thin and pink.  And they actually stayed pretty close to original location!  When I think back to last year at this time....I am shocked to realize what all I have been through this year...my best girlfriend and I have the same conversation every new years eve about what the past year had brought us and wondering what was in store for the new year.  Reflecting now....I never saw any of this coming...and can't believe I lived through it and am on to having reconstruction.  I too, would like to toast to all of my new friends here.  I wish you all nothing but the best for the upcoming year...and I value our new friendships.

Happy Holidays!

Heres to a relaxing and fun holiday to all.

Remember singing "all I want for christmas is my two front teeth", now its "all I want for christmas is my two new boobs!"

Cheers, Jani

Here is an article clip that I thought was very interesting. Only 33% of women informed of their option for immediate reconstruction? That is simply outrageous!

Breast reconstruction often not discussed

Last Updated: 2007-12-21 8:15:22 -0400 (Reuters Health)

By Megan Rauscher

NEW YORK (Reuters Health) - Women with breast cancer faced with treatment decisions are often not told by their surgeons about the possibility of breast reconstruction after a mastectomy, a study confirms. When these conversations do occur, many more women choose mastectomy, researchers found.

In a survey of 1,178 women who had breast cancer surgery, only 33 percent reported that their surgeon had discussed breast reconstruction with them during the surgical decision-making process.

"We found it surprising that very few patients were informed about their options for breast reconstruction, and that information regarding reconstruction was more likely to be given to younger women who were more educated," Dr. Amy K. Alderman of the University of Michigan Medical Center, Ann Arbor, told Reuters Health.

The survey, posted online Friday by the medical journal Cancer, also indicates that women who had these discussions with their surgeon were four times more likely to have a mastectomy compared to women who did not discuss reconstruction.

"Women need to be fully informed about all of their surgical options for breast cancer: lumpectomy, mastectomy and mastectomy with reconstruction," Alderman said. "All are great options with the same long-term survival."

Breast reconstruction, continued Alderman, "is a personal decision for each woman that is influenced by her body image, sexuality, fear of recurrence, etc. Women should be educated consumers of their healthcare."

She concluded: "We, as physicians, need to make sure that all women, regardless of the patients' education and socioeconomic status, are fully informed of their surgical choices for breast cancer care."

SOURCE: Cancer, February 1, 2008, online December 21, 2007.

Copyright © 2007 Reuters Limited. All rights reserved. Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon. Reuters and the Reuters sphere logo are registered trademarks and trademarks of the Reuters group of companies around the world.

Hey Sandy, Sorry to hear about the pain but unfortunately for many of us, the pain from the expansion continues throughout the process (it did for me anyway). As far as the carpal tunnel arm...is it on the same side as the fills? If so, you should probably ask the doc about it because it could be from the compression of the expander against the nerves under the armpit area. I took flexeril for the pain throughout the expansion process and it definitly took the edge off things. There are many opinions as to whether fast or slow fills are best. You really have to make your decision based on how you feel. You can always ask the ps to go slower with less fill and a longer time between the process and it may ease some of the pain, just do what's best for you.

Susan, I went to see Dr. B. for the last time today! No more visits until February when I get a nipple! I'm leaning toward just getting the tatoo instead of having one built then tatooed. I'm also released from wearing a bra EVER AGAIN!!!!! I ended up a perfectly symetrical "C" which is the smallest my boobs have been since I was 12! I may be 51 but "the girls" look 15! Let me know about the date. I'll be keeping my fingers crossed for a Mardi Gras/Easter exchange for you!

Jani, I like the words to the new song! When my granddaughter told me my "boo-boo" boobie wasn't squishy like the other one I told her I was getting a new squishy one for Christmas. She looked at me and said "From Santa?" (she's turning 4 Friday). I almost peed myself laughing and said yes. She came by after the exchange and likes the new squishy one. 

Yall have a good night.

Margaret

Have fun and I wish you could take me with you too:<}

j

Shaz



Ask your PS to only fill 60cc and things will go much better. Mine also completes the fills every 3 weeks, I think I could take them every other week as you, as they only become annoying after 2 weeks. I do have a pacemaker which is the only thing that is really bothering me now. I fear the expanders may dislodge the wires on the pacemaker.

Katwig: Best check it out with your PS. A broken rib is not unheard of, but I expect that would be instantly painful - not delayed by 3 days. It is probably the intercostal muscle spasms (the muscles between the ribs). They really do feel like what I imagine a broken rib to feel like. Taking a deep breath or just inhaling quickly, even changing positions in bed is painful. The pectoralis muscle spasms are more general, not so localized and piercingly sharp. They can hang in there for a very long time too (like a week or more). I don't know this for sure, but I imagine that the intercostal muscle spasm is due to pressure pushing inward on the ribs and stetching their interconnective tissue.

 

Take a look at the past posts to see what helps. I think that many people find a muscle relaxer to be a critical defense against the muscle spasms (there is one that several women have mentioned - can't remember what it is called right now), or Voltarin (which is a potent anti inflammatory), and pain killers, and as most have found smaller fills with more time between each really is the way to go.

 

It’s a long hard road. It really helps to know that there are other women going through exactly what you are and are here to share the experience. I can't tell you how much this site helps me. I do have a supportive family, but there is a very special and necessary kind of support here that I don't find anywhere else. It is a great comfort and really stills the fears - other women are doing this step-by-step, there will be an end, we are all going to get through it, and things do work out okay -take a look at Margaret's posts for just one of many examples to gain inspiration for the day!

 

Good luck.

 

Shaz- Thanks for joining us!

 

Happy New Year everyone!!!!

Hi Katwig,

Sorry to hear about all your pain with the expanders. Unfortunately for many, this is part of the journey. I had similar issues with mine and toward the end, I went to the dr. and found i was compressing 2 of my ribs. It was one of the most miserable experiences I've ever gone through. I too wondered many a night whether or not I'd done the right thing. When I saw the ps last week after the exchange, we were discussing potential problems that could arise (again) from the implant. I told him that this was the last surgery I'd ever have for this stuff. He seemed shocked because I was at the end of this part of the journey. I don't think the docs truly understand how painful the expansion process can be for many of us. If I had it to do over again, I probably would not have had the reconstruction. Of course hindsight is always great but for me, I wasn't attached to my boobs that much before the mast and only changed my mind about recon 2 weeks before lefty was lopped off. I'd spoken to a few of my friends that had masts and they all said they'd wished they started recon at the time of surgery. Because I valued their opinions, I changed my mind about having the expander placed at the time of surgery. Of course, I didn't find this board until after I'd started the process. If I'd found it soon, I probably would have felt more secure in my decision to not have recon surgery.

With all that being said, I am happy with my result. I thought I'd end up a "C" but when I went to try bras on the other day (in case I ever decide to wear one again) I was a "B" which is fine (no more bra ever!).  I took flexeril every day to help with the muscle spasms (5mg during the day to function, 10mg at night so I could sleep) from the expander (this pain went away immediately after the exchange). Now I have a new pain from the implant (thank goodness it's not constant like the expander).

The earlier fills are the easiest ones to deal with; the pain for me did increase with each fill and continued to the next one (I went every 2 weeks; got 120 each time). I began the fills in late August and continued until October 7. I had the exchange December 18th. Second guessing yourself is very common with the expansion process. Many of us here have probably done that at least 100 times a day! Coming here and posting was very good for me because I found people that knew exactly what I was going through and that's really what got me through this whole process. POst whenever you need to and rant as often as you must about the pain! That's what this is all about. You will find unconditional support here and it's definitly a type of support others that love us can't give us because they aren't goiing through the physical part of bc as we are.

Good luck and I hope you begin feeling better soon!

Margaret

HI, Katwig,



I had radiation in 2002 to my left breast. And reconstruction with expanders done in Oct 2007. My left breast has done well, but it's definitely slower to stretch the muscles. I'm always more "aware" of that side than the other, but for expanders, it looks good. The skin is in good shape, and my ps is thrilled with the results were getting.



If I were doing things over, though, I'd fill a bit more slowly than we did. We filled the right breast first, to my pain tolerance, then filled the left. And it hurt more, sooner. I would have done it the other way around, in retrospect.



So, anyway, my radiated breast had a few years longer than yours to recover from any effects. Just be patient, and go super slow with the fills. Slower than you think you need to.



Anne

Dear Margaret ,

You have given me goose bumps today with your message. So glad to hear that you are feeling better. You and everyone else inspire me to move forward. Getting to be towards the end of my fills and it seems to be more painful . Tomorrow i will ask for 40cc instead of the usual 60cc that i recieve weekly. I am at 500 cc's and not sure how much more to achieve that b cup. Ps in on vacation. I want to wish everyone a Happy and Healthy BC free year... CHEERS TO ALL !!!!!

Denise

Katwig,

You can find timtam in the Member List on this site.  Private Message her and ask for access.  She will give you the password and URL.  She may want to verify that you are a cancer patient.  She does this to protect those who have posted.  Good luck; the site is invaluable.  I do pray that things work out for you; just go slow.  I did well during the first couple of fills; my skin looked good, but the muscle was like trying to stretch a piece of beef jerky.  It just didn't want to stretch.

Try contacting Timtam; the site is invaluable.

God bless,

Chris

Anne,

I had a love-hate relationship with the bra I wore post-op. It was a special post-recon bra, and someone here dubbed it "the Iron Maiden"--and that's what it felt and looked like.

I wore it 24/7 for a few weeks. I didn't know how much I needed the support and compression till I had it off! Now, almost 3 months out, if I go braless too long, my chest burns and the muscles feel tired. Usually a good support or jog bra works. But today, after climbing in the gym for an hour and a half, and a workout session with my trainer for an hour, I put the "Maiden" back on. Ahh, sweet relief.

Everyone's different on wearing support-type bras after reconstruction. All I know is that my body dictates when I need to wear it--which is still most of the time. I did make recovery a bit easier.

Anne

Hi all. I'm new, and very relieved to see you are talking about this.

I had BC last year, 8 cycles of chemo, 33 rads, and eventually two mastectomies. I had the second mastectomy and tissue expanders put in on Nov. 30 (the first tissue expander that was placed when I had my first mastectomy failed) and have only one fill scheduled to go.  But I am in so much pain, I can barely focus my eyes! I have been taking darvocet like tic-tacs (with xanax at night) because Vicodin stopped working. (Plus I had developed a problem with Vicodin, where I was drunk-dialing QVC and ordering all kinds of crap...)

I am 70 ccs away from being done on my right side, and 60 ccs away on my left. But I am in so much pain, I've been projectile crying for three days. I don't know if I can do it. I'm torn between wanting this to be over with, and being scared of reliving this week. I know I could break it up over the next two weeks, but I so want this to be done.  I miss my life.  I have been having visions of jamming a knife in my right "breast" just to have the relief of draining it.  I am usually a very pro-active person but I honestly don't know what to do here. Are there better meds I should be asking about?

Hi Teri,

I thought the pain stuff would be over as well but no such luck. This pain isn't constant like the expander (which I'm soooo happy to be rid of) but occurs when I move my arm to get out of a chair or roll over in bed, trying to do my hair, etc. The nurse said it's probably due to the muscle adjusting to the implant and it should ease up over time (I thought that's what the expander was doing...). I can tell you now, if this doesn't ease up by the beginning of the summer, it's coming out!!! I'm tired of being in pain but at least ibuprofen touches this. I can't deal with waking up in the middle of the night every time I have to move because of the searing pain under my boob (so glad I'm doing a reduced teaching schedule this semester!).

Cassie-I like the drunk dialing analogy; for me it's HSN!!! Boy did UPS love me sending stuff back every few days! I think I bought every type of makeup they sell over the last 6 months. I took 5mg of flexeril during the day and 10mg at night so I could get 3-4 hours of sleep during the fill process (I don't miss that in the least!). Hopefully you will find some relief because it really sucks especially toward the end of your fills and the waiting for the exchange surgery. The relief from the expander went away almost immediately with the exchange (but I have new issues with that). Hopefully you can find something that works for you til then.

Yall have a good one!

Margaret