Should I have my tissue expander removed?
My story is: I had breast cancer surgery may 6th 2015. I agreed to the expander thinking I would wake up from surgery with one or two nodes gone. My tumor was a little over 2cm. My ultrasounds at two different hospitals had revealed clear underarm nodes. The positive node was a sentinel .2-2mm micromet. The pathologist couldn't even be sure if she was seeing anything! You can imagine my distress of waking up to 17 nodes gone and the tissue expander, 650cc. Sixteen of these nodes were normal. Now, I have lymphedema in my arm, around the expander and starting in my hand, I am in pain constantly and taking pain and anxiety meds every 6 hrs. I got shingles and have complications from that. Every time I have a fill, the swelling gets worse. When I was coming down with shingles, I did not know what was wrong, I hurt all over and was sent to the in hospital ER by the plastic surgeon who had just removed 50cc of the 60 cc fill I had gotten before. The ER doctor failed to diagnose shingles although I showed her the five painful sores on my back! They did a CT scan of my right kidney. More radiation exposure! by the time I was diagnosed with shingles, at another doctor`s office, the medication they gave me for it did not work, so now I have post herpedic neuralgia in my back. Tamoxifen adds to the swelling and pain. I really wanted to keep the expander and I`m only up to 250 cc. My oncotype was a 7, so thank God I did not have chemo and radiation and the borders were clear. I have always been sensitive to medications. My doctor was not nice to me and I always was to her and thanked her. I went to Columbia Mo. Ellis Fishel Cancer treatment center. I feel like I was used to teach student doctors because it is a teaching hospital. I have read that the small micromet I had is now considered node negative and most doctors do not take a lot of extra nodes. After my surgery I saw my doctor minus the students. She was not interested in my swollen arm and I asked about my positive node. These are her exact words. "I don`t know"," I only have fourteen other patients!" very short and what I considered mean. Should she not care about all her patients? It made me wonder about their outcome with her. Did she know anything or care about them? I know exactly how a guinea pig or lab animal feels. I am not down on doctors, they save lives. But, some go too far and you can`t be too careful, ask questions and get second opinions. Back to my main problem, do any of you think I should go ahead with the reconstruction or have it removed? Can anyone relate to my story? Does anyone know how long you can safely have a TE. I am so tired of it. It goes through my armpit and feels bunched up. Also, please everyone, study before surgery, get all the facts and read everything before surgery. Thank you, if you answer this post and blessings to you! Thank you!
Comments
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Sorry for all you have experienced, and I wish you had a more sympathetic surgeon. I had my right TE in for 17 months, and developed right arm lymphedema while I had it. I did go on to exchange to a silicone implant without issue on that side, and I do think that I have a bit less swelling because the implant is softer, and I am definitely more comfortable with the implant than I was with the expander. I think sometimes the firmness of the expander can cause swelling to be worse. Have you had any treatment for your lymphedema by certified therapists? I was able to while I still had expanders and it was very helpful - I went twice a week.
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What you have experienced is not the norm. But you really need to see a physical therapist ASAP. They really do wonders!! I would also do some more research and networking for a plastic surgeon. A very specialize one. Not a cosmetic PS, which I'm sure you know. If you have the energy I would 'formally' complain to someone about how your doctor treated you. You are so important. Don't forget that! This is about you not the doctors. You have to use your voice--I wish you all the best and look forward to your updates! You're not alone!!
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To SpecialK, Thank you, did you slowly have fills? I was just wondering why you kept the one in so long. does the pain and tightness get any better as the expander enlarges? Thank you for replying and caring. Also, how are you doing with the swelling by now? I just saw you had 13 surgeries, oh my, you have been through a lot. Bless your heart. Prayers and hugs!
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pab , Thank you so much, I appreciate it that you understand and care. I have never had a doctor be so strange before. I never went to them much before this. I wanted to tell you and SpecialK that I did have a PT work on me for awhile until I could no longer afford it. It is out of this world expensive and I bet you both know that. $85-$95 for each 15 minutes they spend with you. My insurance only went so far to help me. I sent a longer message to both of you. SpecialK and pab. I don`t know if I sent it or not. I did not see it on here. I was very tired when I tried to send. If it did send, sorry for the repeat message. Thank you so much! It means a lot. God`s protection and blessings to one and all! Prayers and hugs.
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Hi, I have a quick question for you guys, what is the longest amount of time you can have the expanders in, without causing a problem? I had chemo 02/2015, surgery 06/2015, took a few months to get expanders to the right size, radiation finished in January. I was supposed to wait 6 mos and have reconstructive surgery and remove TE in June, but lost Insurance. Is it safe to have the TE in for so long? I will not be able to get affordable Insurance until the New year. At the moment, best quote is 500.00 a month with a 3 month waiting period, before I can go see anyone. Any info is greatly appreciated. Thanks
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You raise a good question, clown007. You may want to initiate a phone conversation with your surgeon, to see what they suggest as well. Let's see what others have to say.
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farm - sorry I missed your question from your earlier post. I had bi-lat expanders placed Nov 2010, waited 5 weeks for ALND surgery as my BS was out of the country. About a week later my left TE ruptured through the necrotic skin near the nipple. I had three repair surgeries over the following 6 weeks, the last also removed the TE. For the next 6 months I had chemo, then 6 weeks later I had the TE replaced. I filled slowly over the following six months and exchanged in Feb of 2012. So, my right TE was in for 16 months.
clown - moon, over on the TE threads had her TE longer than I did, and it was not an issue. While expanders are meant to be temporary I have not seen anything specific indicating it is mandatory to remove them by a certain deadline. Good luck
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SpecialK - Are you saying the necrotic tissue area opened and exposed the TE? Did you just suddenly discover it that way? I have an area of necrotic tissue that I am keeping a close eye on. The PS seems to think it looks okay, but I am so nervous about it as I had a friend who had an experience similar to yours. Since I am about to start my chemo this week, I am in no rush to get expansion done. I will have one session the day before I begin, but I think I want to put further ones off until my 12 weeks of Taxol are done. At least postpone it until I know what kind of SEs I might have. Would love to hear thoughts.
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fireheart - I was moving laundry from the washer to the dryer and felt the front of my shirt was quite wet. I thought it was from the laundry but then I realized it wasn't. The expander was exposed and there was serum pumping from the wound, which soaked the shirt. I personally would not expand with necrosis, and I would be very careful during chemo as the drugs will inhibit healing
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Clown, Although I am losing this one. My PS told me they can stay in a long time. I hope this helps you. Best of luck!
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Bless your heart, Special K. I'm so sorry you went through that! I have made two 4 1/2 hour trips to get fills. This time I as I asked for the doctor instead of doctor students. After examining my armpit, he did not think it was the expander so far under my arm. There is also lumps where it is bunched up and swollen around the area, really sore too. He mentioned cording and the C word. The second trip I had an ultrasound, and the whole thing is the expander!! I'm so glad that is all it was. He now says it has to come out and it may be aggravating the area where the lymph needs to drain. I don't know why or how it got into my armpit. That's when they told me they can stay in for years. I have had so many complications that I don't know what the future holds. No wonder it has been hurting so bad for over a year. I have had bad experiences at this hospital and I am scared.
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I put off my expansion and will do so until I am comfortable with my healing. Thanks for your advice, SpecialK. I know my doctor is the expert, but we ladies definitely have to take control of our health care choices. They are not in our bodies. With chemo starting today and my plastic surgeon being 1 1/2 hrs away, I definitely decided it was best to wait. Don't regret my choice one single bit.
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Hi Special k, I had to have my TE out Oct. 4th 2016. Today is Nov. 23th and I am still having pain. The tissue expander had leaked out completely. I thought something was wrong when they refused to fill the expander twice. Two 4 1/2 hour trips to see the doctor. The expander had somehow migrated into my armpit but they wouldn't believe me until I had an ultrasound. I already had moderate lymphedema from the mastectomy and lymph node removal. I got a bad deal at that hospital all the way around.
I will never, ever, go to another " teaching" hospital. I don't believe any surgeon should remove 16 perfectly HEALTHY nodes, if the pathologist isn't sure she is seeing anything in the sentinel node. They just went ahead and removed my armpit and now I am living on pain and anxiety medications. A student doctor had put my last fill of 35cc in. I think this is when the expander was punctured. I also have scar tissue left behind that they couldn't remove for fear of damage to my lungs. I hope my story helps someone else. Don't be overly trusting. If your doctor is sarcastic and uninformed about you and tells you "I don't know"! "I only have 14 other patients"! Please get a second opinion! Don't walk, run away from there. She was not concerned nor did she offer any help about my swollen arm! This is our lives they are practicing on!! I think I had told you before, that I also had ultrasounds at two hospitals on my axillary nodes and both reports stated they were clearly clean. I just had to get these feelings out! There is much more I could say about my treatment at this place. Happy Thanksgiving, to one and all and may God bless each and everyone!!
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farm - so sorry for your experience, are you getting treatment for your lymphedema, and what is your plan going forward from here?
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Do lymphatic drainage on your arm. A massage therapist or physical therapist can help assist you and show you how or YouTube or Google it. Prayers for you 🙏😇
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Chell - this thread has not been active since 2016 - over 3 years.
I know for a fact that several of the posters have in fact had treatment with a trained, certified Lymphadema PT. Conventional wisdom says you should NOT get your initial treatment from google or you tube, but should be correctly diagnosed & measured by a professional. And personally trained in MLD.
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