continued Tissue expander pain!!

Happy Anniversary Sharon!!!! We've all come a very long way this past year! It's fun going back and reading some of the old post  we wrote going through the expansion process. I've had the implant for 10 months Saturday and some dropping and no fluffing for me. I still have almost as much pain with the implant as I did with the expander so I'll probably be deconstructed in December. Happy to see you around the board and that things are going well for you. Take care.

Margaret

Sheila,

On getting comfortable in bed:

 here is a great way to get good support:

http://www.contourliving.com/p-21-backmax-body-wedge-cushion-sets.aspx

the cushions fit anywhere, are detachable, and the covers are washable. It works great for me. Keeps my upper body upright. I just add pillows on each side to support my arms. Greatly reduces any pressure in the chest in the nighttime. No sliding off ... as is the case with pillows only. I bought mine on Amazon for $99.00

Cornelia

Hello, Ladies!

This is my first post here.  I wish I had found it sooner.  Mast. in January, Chemo started Mid Feb, Rad. started late April, over in July.  Had expander put in during mast. surgery, and finally, FINALLY, got my implant about 4 weeks ago.  

 The expander was hell on wheels.  It felt like a football sown into my chest, ribs hurt alot, and the thing would seize up off and on 24-hours a day.  Also, stress seemed to kick off the spasms.  When my husband had a stroke, they went way up in frequency, and when my Dad died, they were constant.  

So now I've had the implant 4 weeks.  It's settling in quite nicely.  I am pleased.  It's been hard the last 9 months, but I've met the most wonderful women (and a few men) during this process then I've my in my whole total other 63 years.   Christy -- I went down from a DD to a kinda big C.  It's a wonderful relief.  I'll probably get the other one trimmed down to the same size in about a year. I'm kinda sick of surgery just now.  Doing well, and hope to keep it that way.  Thank you all, Ladies.  So glad to know you are all here. 

Hi,

Just got back from an appt. with the med ass't. at the P.S. office.  She was checking and cleaning my tummy tuck wound, which does need some antibiotic.  Other than that, things went great and found out I no longer need to wear the stretchy latex tummy band.  What a relief!  She showed me what an expander looks like.  No wonder they hurt.  Like having miniature tents under your chest.  However, she said mine were filled to 650 and will be getting more next week.  I believe that the only reason this is going so fast for me is that I had already been wearing large implants for 25 years and they were placed under the muscle.  So, a lot of stretching was done during those years.  I still will be very happy once the final exchange is made.  Is this done at a hospital or the doctor's office?  Are both the expander and implant unfilled during removal and installation?  How are most people incised?  Right now, the incisions are under the breast in the crease.  Even though I want the nipple reconstruction done, I ordered the silicone nipples for in the meantime.  I am so impatient.    Just a few weeks ago, I was outgrowing a size 12 jean; and I was pretty depressed about that.  Today, I am wearing a size 8.  I am happy I made the decision to have a tummy tuck.

Hi ladies,

I had a double mastectomy with expanders 4 weeks ago and been having pain just about every minute, except when I am on prescription pain meds. My PS put 300cc's in each at the time of the surgery and another 100cc's 10 days ago. Today, he was going to put another 100cc's in; but, I told him that I was just in too much pain and felt too tight already. It feels as if I am wearing two empty, hard, tortus shells with rocks in them. I can hardly get out of the house and out of my pj's unless I've had pain pills. Still, I have to come home within a couple of hours and strip my clothes off.

It helps me to know that I am not being a baby about this. My doctor acts like I shouldn't be having this much pain.

I have already been through chemo for six months to shrink my tumors. Within the next two weeks, I will begin radiation. My PS says that it could cause complications and more pain.

After I shower, my skin gets tighter and even more uncomfortable. Any suggested on how to make the skin feel better?

Please write me at kathyesp@aol.com.

Good luck to all of you and God bless.

Kathy

Hi latticelady,

Welcome. Just a few answers to your questions. I will have my exchange this friday and it is scheduled in the hospital but I will go home afterwards. The  incision will be made right over the top of the mastectomy incision and the expander lifted out, inflated. The silicone implant will then be placed inside and everything sewn up. My PS said that he has tried to make the incision smaller but it is virtually impossible to roll up or squeeze a silicone implant through a small opening.  I will then wait 4-5 months for everything to settle and then go back for an office visit to have the nipple made. My PS makes a small "Z" shape in the skin and then twists and sutures, This way it is a small nipple and you don't have to go back into surgery to have it done. After that heals I will go back for the tattooing. Good Luck with everything.

Milli- I was finished being filled in August and am having the exchange this friday, Oct. 24th.

Jeanne

Just a reminder... this is next week. 

Pray for "Eve"

Please join the women of breastcancer.org in declaring November 1st, All Saint's Day, also  the International Day of Prayer for Breast Cancer. Breast Cancer awareness month will come and go, but the fight goes on for women all over the globe. Take some time this day to pray for all the women battling this horrible disease. Pray for our sisters, mothers, daughters, grandmothers, aunts and dear friends who continue to fight on. Pray for those who no one even thinks about with this awful disease, the men who become victims too. Pray for all the lives that are touched and forever changed by having, or knowing someone who has breast cancer. Pray for a cure, and pray that it will come soon. Pray that we will soon understand why there is so much cancer in this world, and that we will figure out how to stop it. Pray with us, throughout this day, that all our our prayers will be answered!

Hi Kathy,

I had a bi-lateral on Sept 16th and had expanders put in.  I have yet to get a fill because I haven't been taking the news of needing chemo+herceptin very well so from an emotional standpoint I didn't want to add any pain.  However, now I have time since I can't get implants while doing the chemo.  I just thought I would add what my PS has told me over and over again.  He said that this phase (expanders) is just construction and I should view myself as "under construction".  The expanders aren't to make us look good but to stretch the skin.  So they keep reminding me this isn't what I will look like once the finished product is there.  Who knows.  I have seen their pics and believe them.  He is one of the top docs here in Houston.  I have pointed out things and he says to just wait for the finished product.  So that is what I have been told.  I don't feel great... tight and I hate the numbness in my chest.  Hang in there.

Hi Kathy,

I am so worried about the chemo and side effects.  Glad to hear your response.  From what I have heard and researched there is no reason to hurry through the expander process.  My PS told me to take it as slow or speed it up based on how I feel.  I talked to several ladies that said take it slow.  He as well as his nurses (who are awesome) have told me this isn't how it will look once the exchange is done and to wait till that point to see if there are things I want fixed.  I am going for my first fill which will be week 6 next week.  Maybe you should let yourself heal a bit and get use to all this before rushing the expansion.  There is no reason to keep yourseld in pain.  Like I said, I am definately NOT comfortable (tightness, numbess, sleeping) but I feel a heck of alot better and more prepared to get a fill next week.  I am thinking of doing it every other week or even every other three.  I might hurry more if I didn't have to wait for the chemo to end.  PM me if you want.

Cristl 

Crystl,

Please done't worry about the side effects. Everyone takes it differently. Personally, I would go through another five months of chemo, if I did not have to have this mastectomy and reconstruction. It's much worse than chemo.

My oncologist was wonderful and gave me medications to keep from getting nauseous, which is the worst part. Take the "emed" for three days and the fluids following the treatments that they recommend.

I knew that I was going to lose my hair; so, I went out right after my first session and got a wig that looked a lot like my real hair. It is a synthetic wig by Eva Gabor called "The Acclaim."
It is easily washed and you don't have to style it at all. I had to wear it through the hot summer here in the South. Actually, the hot weather was the worst part of my chemotherapy. When my
hair began to fall out, my husband shaved my entire head for me and I put my wig on. No one who knew me recognized that I was wearing a wig. I kept having cancer from my Mother from April 1st. until September 20th. I saw her almost every day and she never knew it. I just told her that I had a new hair style. But, with my neighbors and friends; I told them everything that I was going through. They were a  wonderful support for me and still are.

 When is your first session? Will you have a port for the chemo, instead of putting it in the arm?

Kathy

Hey KathyF,

By all means, don't rush the expansion.  I'm a relatively tough bird, but expansions of 60cc felt like a heart attack for the rest of the day.  I slowed to 45 cc and did just fine.  I've been at full expansion for about a month, and the only time I get rib pain is when I slouch (I think my mother conspired with the PS on that one).  My expanders are cashew shaped with a divot on the top.  They are not that flattering unless I wear a camisole that camouflages the divot.  I agree with CristiC that this is just a stretching phase.  Try not to worry about the current look.  It will change with each fill.  Best of luck to all.

Carol(AZ)

Kathy & Cristl

 It has been great reading your conversation.  I had a single mastectomy on October 7th.  I start chemo for 6 treatments beginning November 10th, every 3 weeks. Then 5 weeks of daily radiation.  I started with D's but only want C's because they are perky I understand.  It has been ages since they were perky.  My expander has been inflated once.  It didn't hurt when they did it but a day later it was really painful.  I feel like going back on the main meds....I hated them.  I don't know how I am going to handle all this filling?  I am little 5'6" and 125 lbs.  My back is killing me because they have pulled me so tight.  My ribs hurt.  I have to start chemo in two weeks and he wants to fill me one more time.  Maybe I could request a smaller fill amount? 

I also talked to my oncologist regarding the port.  I have only one arm they can use because of nodes in one arm, I still cannot life in above my waist.  I asked him if I could get it in my arm and he does not want to because he says it has more clotting issues.  My surgeon however had no problem with it, but she is not putting the port in.  I am still struggling with this, I do not want it in my chest wall because it is right above my heart and it leaves quite a scare.  We are going to try to use my veins...pray it works.

 Thanks for any advice..Kristi in San Diego

Hi Kristi,

I will pray for you that it works. If you can get by with no port, that would be best. I tried it in the vein the very first time, and, it put a huge bruise on my arm.....But, I bruise easily.

I'm glad that we have helped you feel better. This board has helped me feel better about the pain I am having with my expanders. My PS tries to make me think that this is not normal.

I've have 500cc in each breast and my mastectomy was Sept.15th, less than six weeks ago. And, my PS says I should not have this pain! I don't know what his motive is for trying to make me feel that I shouldn't be having any pain. I'm not letting him push me again. I think I'm going to stop at this and keep them at 500cc for my permanent implants. I was a teenager the last time mine were perky. LOL!

Kathy F.

Kathy F.

Hi Kirsten -

Have you tried any gentle stretching excercises?  That helped me a lot.  I did stay a small size because that is what I was previous to the bilat.   I had about 50cc each fill except for the last which was 100 - mistake for me because it was really painful for a few days.  But for me that is generally what it ended up - only a few days.  I was lucky that mine could be helped with OTC meds like ibuprofin.  Depending on how your PS schedules it - maybe you can ask for more time in between fills?  Mine were about 2-3 weeks apart.  

Warm showers, gentle stretching can help.  But always check with your doc first to see what is allowed. 

Best wishes - I hope you are painfree soon!

Amy

Kirsten -

Another tip like sbmolee's - if they won't let you use ice, I found these 'soft'  ice packs at the pharmacy - more like a pillow shape than those rigid blue ones.  My PS wasn't big on ice, but I kept them in the fridge and would rotate them as needed.  That way they are cold but not frozen. It did feel so good to have the cold.   Like above - definitely check with your doc first.  Mine had strong feelings about what could be used. 

Best wishes - hope you find relief