TEs. A Beginner's Primer
Comments
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Remember that YOU are in charge of how often and how much to fill. If you want to get less- tell them. If you want to wait a week or two or however til your next fill- tell them!! I was ok with it til the last fill when one side moved over a nerve and I had alot of pain for about a week when it finally shifted. and I agree-- get PT and do excercises they prescribe and it will all help. There is light at the end of the tunnel!
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I highly recommend Flexeril (muscle relaxant) after a fill. It really helped me!
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Hummingbird, are you taking tamaxofen to shut down your ovaries? Did you get a recurrence % from the doctor?
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ladies, I have been googling and searching for pics of breast WITH the TE still in place. I can only find pics of the end result after exchange. Do any of you know where I might find some pics?
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SugarCakes--send a PM to nowheregirl. There is a picture forum that is not affiliated with BCO, they will respond with instruction on how to access their site.
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Feprincess, Yes, I had the recurrence conversation with MO. That was a rude awakening. I also has the oncotype test done since one of my tumors was a grade 3. He told me with no treatment, I was at about 18% chance and tamoxifen alone cut that in half to 9%. Chemo would have only taken another 2% off. It's not a fun conversation. Tamoxifen cuts off the hormone production which was feeding my cancer.
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I just started driving again and it induces chest and back muscle spasms. Anybody else out there with this problem?
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My MO told me that it's not usually done with Stage II, but that she would do it anyway if I wanted it. I have a phone appointment on Thursday and I will request it anyways. Thanks for your reply Hummingbird!
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oncotype dx testing is usually done with stage 2 ER/PR pos cancer. It is essential to determine whether or not chemo is useful. I would request it.
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Hi jhendricks, I am going to request it. She said she would do it for me if I wanted it. I wonder why she said that it could be inconclusive with Stage II. Thank you for your response. I am so conflicted about chemo.
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SugarCakes - I thought you were already a member on the picture forum? At least someone with that screen name is. There are hundreds of pictures of TEs in those threads. Of all shapes, sizes, styles, and brands. Send me a PM if you're having trouble finding them.... I know navigating in there can be a bit confusing at first - until you get the hang of it.
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I have done a lot of research on this stuff. You can get a lot of information from the Oncotype DX website. Your results look very similar to mine (I was stage 2 with a 2.1cm mass in my left breast, micromets in one lymphnode, bilateral mastectomy with TE, ER/PR +, HER2 neg). My Oncotype DX score was in the low range, therefore chemo would only give me. 1-2% decrease risk of recurrence. The risks associated with chemo make it not worthwhile. If I were in the high risk category I would have had a triple chemo cocktail. Depending on where I would have landed on the intermediate scale would have determined how aggressive my chemo would be. Have you talked to an oncologist yet?
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I had an oncotype dx score performed even though i only have stage 1 cancer. I guess it depends on your doctor and the hospitals policy.
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Hi jhendricks, all my nodes were negative! I am definitely going to do further research on this. I don't want to just do it because this one doctor is telling me to...I really appreciate your feedback.
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Fe Princess, I also had Oncotype DX for Stage 1 and Genetic testing as well. My score was in the low range so no chemo, but I MO said I'm very ER/PR+ so I'm on Tamox and Lupron (for OS). Ask for the testing.
Scottie
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Thanks for your reply Scottiemom!
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Hi Scottiemom, was your treatment only based on the results of you Oncotype results?
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Hey TE girls, just had mine replaced with silicone implants on May 1. The te's were terrible, but worth it for sure, and the new implants you receive will feel better for sure. FYI, the swelling will still cause the new implants to be tight, but that it slowly settling down. I am extremely happy with my outcome at this point. My PS is Dr. Joshua Lemmon in Dallas, TX, and I highly recommend him. I will say that he makes his fills a bit more than some of you have gotten, but got it over with sooner.....so yay! Hang in there!
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Thanks for the update kj123! Glad to hear it worked out well for you! My exchange is June 19th and I am so looking forward to getting rid of my iron bra!!
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Fe Princess, I think my treatment plan was a combo of Oncotype and other factors including history of stage 4 endometriosis and recurring ovarian cysts. Tamox apparently can cause both so MO put me into chemical menopause with the Lupron, which unfortunately makes SES from Tamox much worse. TGF Gabapentin which helps SES and nerve pain from TEs.
I have a love/hate relationship with my TEs. I like the way they look. Even found a new bikini top that does not show my scars. However, the constant nerve pain suxs. I'm going to try to enjoy pool/beach till exchange surgery and hope like heck that I'm happy with my squishies.
Scottie
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@Scottie, beach and pool sounds great. My PS restricted me from soaking in the pool and the beach:( . PS said that i can only get my TEs splashed on but not submerged due to potential infections lurking in the water.
Have an awesome time in the any body of water you choose until your exchange.
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Hi everyone. I hope that you are all well. This is my second week after having TE's plus alloderm placed last Tuesday. I still have drains which are putting out about 80 cc a day
I'm so ready for them to come OUT, but I know I need them. Something happened earlier this afternoon which is causing me to worry. When I drove to pick my son up from school, I ended up having to back up in the driveway. Without thinking I did the usual 'put your arm on opposite seat and twist to see what's behind you.' Immediately I felt a strong stretch at the bottom of my TE on the right side. No sharp pains or tears or anything like that. I am sore, however I've been sore....it is only the second week since they were put in.
What do you all think? Should I be worried that I moved the expander? Is it possible to move them??
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Hi Ruth, I wouldn't worry too much. My PS told me they are stitched in and fairly secure. I know I did too much that second week as well because I felt pretty good. If you're worried you might call your PS to ease your mind. I just finished with fills...PFEW..and will have exchange in August.
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Thank you hummingbird, I was wondering if they were sewn in. I knew they were placed behind muscle but wasn't sure if they sewed them there.
How exciting that you are so close to exchange! I can hardly wait. Even though it seems as though I've just started....I've actually been 'waiting' for going on 14 years. I had my BMX back in late 2001. I also had TE's put in immediately but they become infected and had to be removed....twice. The second time put me in the hospital for about a week and it just caused me to have so much anxiety. We decided to wait before trying again. The waiting went on and on until now. Praying that this time I heal with no issues.
I guess it's better that I'm doing it now with all the advances in technology. They didn't have alloderm back then and didn't do fat grafting. I have a ton of scar tissue and radiation damage so those will come in handy for me, my PS informs me.
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I'm on week 4 of bmx with TEs. My last fill was 50cc per breast. I just couldn't do more. It was about a week ago and was my second fill. I still feel like I'm having a lot of tightening in my chest that wraps around to my back almost like a muscle spasm or cramp. Is anybody else experiencing this? I feel like a wimp.
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I worked with a pt and it made all the difference for me. Ask your ps for a recommendation of someone who works with mastectomy patients. After two sessions I regained range of motion and the tightness diminished. She gave me daily exercises and I did them without fail as I was seeing great results.
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Hey Sunflowercat, how are your implants looking these days? I am three weeks post exchange and still looking awkward, but I got the green light to go running next week!
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Fe Princess . . .that's great if you can start running after only three weeks post exchange. I have been walking since Feb. (two months post BMx) and am up to hiking as much as 5+ miles a day but no running. . .too much impact. I really hope that the nerve pain goes away after I heal from my exchange. I should have had the surgery in April. Oh well.
Ruth7733 you're doing great just to be driving at this point.
Scottie
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Hi. This is my first post to this forum. I've spent the last three days reading through this entire thread. I had BMX with TE placement one week ago today, and found this thread when I googled whether my TEs should look symmetrical (or remotely like breasts). . . . It looks like they should not, which is a relief!
I'm taking my pain meds and taking it very easy, but am finding this recovery to be harder than I expected. Not harder than I was told to expect -- just harder than I expected it would actually be. I've had two c-sections, and this is much harder for me than either of those. Along with my exchange, I was planning on having a tummy tuck (I must have a hernia and muscle repair so I was going to finish it out with removing the loose skin -- I'd been planning on that before my diagnosis so thought doubling up on surgeries would be a good enough idea). I'm now seriously questioning that decision and may change my mind.
I'm looking forward to getting to know some of you going through the same thing as me.
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I think this has been hard. It does get better, but slowly. It took me 3 weeks to feel human. I am on week 4. Driving still causes muscle spasms but this morning I woke up uncomfortable and not in pain. I didn't take ibuprofen for a couple hours and really didn't start to feel pain until the mid afternoon. This definitely isn't easy but it will get better, I promise. Hang in there. This is a great thread for support.
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