continued Tissue expander pain!!

Kmccraw423 and Jean,

I had my BM with expanders placed 12/2. You can read my story from past entries. I just pulled some string with the help of friends and received a 2nd opinion today with another PS. He tells me that expansion takes along time for some people and feels I was filled to fast. He told me to slow down on the fills and wait a month until I try that again. A second opinion is always a good idea and it gave me a little more confidence that things will be ok. I'm still experiencing pain and he gave me some exercises that will help with the pain and decrease my muscle spasms.

As for you being asymmetrical that will be fixed when your implants are placed. They will be able to place more Allograft tissue and position the implants better. This look is only temp. and the final results will look better. My PS did show me pictures and discussed that issue prior to surgery.

Hang in there and take one day at a time. One thing that I have learned over the last week is to allow others to help me. I was giving up and was getting tired of fighting, but this week has been my best week so far. I have been talking to some friends and asking for help with child care and taking better care of myself. I made arrangements to give myself 2 hours in the afternoon to just rest and rebuild my energy. My evenings are now better and my pain is getting better too.

Jackie

Hi to everyone, I have just read the last few pages and I am sorry everyone is having TE pain.  I had my BM in May 08 and just had my exchage surgery 1/5/09.  I had continued pain during the expansion process, my upper arms, upper back and sides were numb and sore from the expanders.  I was unable to completely sleep on my sides.  I can tell you that the new girls are a blessing.  I am still a little sore, but that can be expected since I only had surgery a week ago.

Please be happy that you do not have the nips done when you have the exchange.  My ps had drawn nips on my girls in the OR.  When he removed the bandages 4 days later, he began laughing and grabed a miror to show me the nips he had drawn.  He was quite pleased woth the placement.  I will let you in on a little secret, they were definitly a matched set.  One was higher than the other.  He did however give us all a good laugh.  My nipple recon. is scheduled for April 20, when the swelling will be gone.

I want to wish everyone a pain free life.  Please know that it will get better and the implants will be soft and comfortable.  I am sending everyone (((((HUGS))))).  You are all in my thoughts and prayers.  If you have any questions, just pm if you would like.

Cheryl

I am very interested in hearing responses to your question Jackie.  I had DCIS, am 46 years old. 

My surgeon never mentioned anything about genetic screening.

Jackie, do you have a familial history of cancer - any sisters, mother, aunts?  I'm wondering if this recommendation from your surgeon is specific to your whole medical picture, or a general recommendation for anyone with DCIS under 50?!

Look forward to hearing what others have heard on this topic....

 Sue

I did all the genetic testing.  I was BRAC negative for 1 and 2.  Honestly I don't know how I feel about it.  My mom died of BC at 38 and my Dad has Stage IV Kidney cancer.  My dad's sister and father died of cancer also.  So, I believe I am genetically dispositioned for it regardless of what those tests showed.  I personally think there is probably a 3,4,5 etc.  Who knows.  I went ahead with a bilateral mastectomy for DCIS despite the negative I decided to do both.  My pathology came back that is wasn't only DCIS there was a small tumor of IDC.  Now I am finishing up chemo and will be on herceptin for a year.

Sue,

I don't have a family hx of breast CA. This is why the testing needs to be done. I do have a maternal grandmother and grandfather with colon and lung. The surgeon and oncologist stressed by age and of course the dx is the main reason. I am scheduled for the cancer genetic interview on 1-27 and then I will have more answers for you. The surgeon did say this isn't anything I have to have done immediately, first heal from this experience first.

I was diagnosed with DCIS at 50 (pre-menopausal) and had genetic testing.  My mother had bc (around 65) and her mother's sister had bc late in life.  There's also a history of lung, liver, pancreatic cancer in my family.  I tested negative for BRAC 1 and 2.  

I had a total of six biopsies prior to BM, with only the original DCIS confirmed.  I chose BM because the biopsies were by needle vs. excised, and I felt there was a chance that bc could have been missed.  Turns out three additional areas were found -- a small area of microinvasion in breast with DCIS and two small sites of DCIS in other breast.  These areas weren't even the places that were biopsied, and they didn't show up under mammo, ultrasound or MRI.  I definitely made the right decision, and oncologist said I didn't have to do tamox or arimidex (I was close to the menopausal mark by then) unless I wanted to.  He said my personal risk of recurrence/new cancer vs. the risk of the drugs cancelled each other out.

I was talking with the nurse from the breast center recently, and I inquired about the oncotype test.  The way I understand it, they don't usually do this for DCIS, only if it's an invasive form of bc.  One of the areas "discovered" by the pathologist after my breasts were removed was a small area of microinvasion.  My breast surgeon and my oncologist never recommended this and considered me cancer free from my BM.   Has anyone had this?

By the way Cheryl, congrats on your exchange surgery and your freedom from TE pain!   

Jeanie - I am so psyched for you. I am only four weeks into these crochet balls on my chest and I am ready to toss them out. Best wishes for a wonderful surgery and success.

Tina - Sorry, I don't know too much about the oncotype test, but hopefully others can address your question.

Kmccraw - You raised a good question. There are so many ladies posting that have had infections and other problems w/ their reconstruciton. I do know that my PS gave me a ten page pre-surgical document listed all the possible complications. I have no idea what the percentage of complications is. And I don't know whether there are fewer complications if ladies don't have the reconstruction at the same time as the BM. I look forward to hearing from others on this. I hope that your healing moves along from this point forward. Best wishes. - Jean

Deen - Best wishes for your upcoming surgeries. I am so sorry that you have to go through them, but you have come to the right place. Feel free to post questions as they come up. Take care. - Jean

Hi Jacie300 -

I had the BRCA testing done following a DX of DCIS & lumpectomy that left me with dirty margins.  I had extensive family history including a mom & 2 aunts with Ovarian, and 3 other aunts with breast cancer, and Grandpa/Uncle with prostate.  When the testing came back positive for BRCA 1 I wasn't surprised...on the bright side it made my treatment decisions very easy - BLM, TE, HYS & BSO.  So I had the whole enchilada on 10/13 and will have implant exchange on 2/4.   I think the genetic testing is a personal decision.  Since my DX - 5 family members have initiated testing.  

I do believe (so do all of the docs I've talke to) there is another gene in our genome somewhere that causes breast cancer and I know it must be a real struggle for folks who have family history and test negative for the BRCA gene.  

My PS did inform me of the possible complications of surgery and I did extensive personal research on the topic prior to making my decision.  

msvicki,

I have just found that every PS does things differently. The solid feeling are you muscles that are in a constant spasm. The expanders are placed under you muscles. Taking a muscle relaxer prior to exercising should help. My PS made me take a muscle relaxer every 6 hours. If your PS didn't start expanding you the day of surgery it maybe a blessing. I woke up with 240cc in each expander and I had horrible pain and spasms. I wasn't allowed to exercise until my drains came out. The first couple of weeks are hard....just hang in there. I found talking on the discussion board has helped me a lot.

My surgeon had PT see me in the hospital and I started stretching as I was told the day of but there was only certain ones I could do at first and then after 3-4 days I could do others. I had 350cc put in post op too! Maybe your surgeon needs to know your expanders are that hard. Maybe you are reacting to your expanders.

Karen,

I'm just wondering how you felt with being filled with 350cc. I am still having a lot of discomfort on one side. I had my surgery on 12/2 and filled with 240cc each. I have been stretching and lifting, but today I tried to lift something that was heavy and instantly had spasms and pain on the one side. Also, can you tell me when you went back to work. I need to do a lot of lifting with my job and I just don't feel that I am ready. I need to go back the first week of Feb. the PS will not give me anymore time.

Thanks,

Jackie

I had a Bi Lateral Mastectomy on Dec 5, 2008.  Immediate Recon w/ Alloderm & Tissue Expanders.  Permanent implant Exchange in 4-6 Months.

Overall I am feeling good.  Since my Fill last week I am having terrible pain on my right side, at the top of my rib cage.  Should I be worried?

Agreed ~ These Expanders are like Bricks!

Thank You Fairy49!  Sorry to hear you had pain too, but at least I know I'm not alone!!

Congrats on the last fill this week!!

Warrior - I assume you did not have a BM at the same time as the expanders, right? I had a BM w/ TE on 12/16 and had three fills over the following weeks - 60 cc or 50 cc each time. The fills were not much fun, but they were not horrible either. I took pain medicine before I went (generally x-tra strength tylenow). I was driven to and from the PS the first two times and drove myself for the third time. I also took a narcotic at bed time after each fill. I found that the muscle tension was uncomfortable, but that soaking in a tub (after I was well enough healed) helped a lot. How big are your expanders and how much do you expect your PS is going to put in each time? Best wishes! - Jean