TEs. A Beginner's Primer
Comments
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Hi there:
I am a newbie to TE's. I had a skin sparing mastectomy on March 8th with a TE placed on left side. I already had a mastectomy on the right side 13 years ago and had rads. I did not have any reconstruction then. So this time, the PS is doing fat grafting on the right side and will not place a TE until a few sessions of fat grafting.
Anyways, I had my first fill of my TE on Tuesday March 21. It is so numb that I did not feel anything while the PS filled it up. She said I may feel tightness. She instructed me to be sure to do my stretching exercises and not lift anything over 10 lbs and not to wear a bra. Well, I have pain now. Its been a few days, and I feel like I have a tight elastic underneath the breast area and soreness in the armpit area and near the breast bone. I need pain meds to relieve it. Is this normal? I did not expect to feel sore like this, kind of like an ache and sunburn feeling.
Thanks
wallan
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Hi Wallan, I described my TE pain as feeling like sunburn too. Pain under TE and armpit too. It is the tissue and skin stretching that causes the soreness. I used pain meds the 1st 4 to 5 weeks post BMX and found that when I was less aggressive with fill amounts I did much better. For me 50cc per week was my sweet spot, all I needed was Tylenol and occasional valium for muscle spasms. My PS told me I could have some saline removed if it was too unbearable. To answer your question if that type of pain is normal, I can only say that I think it is, since we both experienced it. Twice I had more than 50cc put in and I regretted it, I was miserable. As everyone is different, my advice is to listen to your body, it will let you know if you are doing too much.
Definitely do gentle stretches. Best wishes for a speedy recovery!
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Thanks Shoregirl!
I will talk to PS about it next fill in a few weeks too. Its relieving to know its "normal". Tylenol relieves it a bit and not overdoing it. Its only being just over two weeks since I had mx and TE placement too.
Good luck to you too.
wallan
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You are welcome, Wallan. I believe most of the pain you are feeling is due to the mastectomy. That should get better about the 4th week post-op. Once that subsided, the only discomfort I had with the fills was some muscle spasms. I was filled once per week and had spasms and needed Tylenol the first 3 to 4 days. I think I had 5 fills altogether.
Now that I am at capacity I have some discomfort because I am so tightly stretched and the TEs are rock hard. But the discomfort is totally manageable and I don't take anything for it unless I'm having a hard time falling asleep after a busy day and then I might take a Tylenol.
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Thanks again Shoregirl. I guess the pain is from mastectomy too, that is true. I am looking forward to feeling more pain free. 4-6 weeks is what I was told for full recovery from surgery.
Cheers
wallan
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Hi Wallan, I too had pain after fills but mine didn't start until a few days after each fill. My PS only does 50ccs per week so not to put an overdose of pressure on the TEs and my skin. I took Tylenol an hour before each fill and that seemed to work well for me. I'd have to agree with Shoregirl, some of your pain could be from your MX.
Shoregirl, my TEs are hard as rock too! When I went home to TX for a month I warned all my friends to go easy on the hugs due to rock hard TEs. A few didn't heed my warning and said they now have permanent dents in their chests. Listen to the one carting these TEs around, we know what we're talking about lol
Healing hugs to All
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Thanks WenchLori:
My pain was worse a few days after my first fill. How long before the pain with the Mx subsides I wonder? Do you think stretching exercises will help?
Its been not quite 3 weeks since surgery. I was hoping minimal pain. But I have burning pain under my TE in front and under my arm. I had SNB 4 weeks before mastectomy, - only 4 nodes removed, so its not from that. s
I am going to ask PS next week when I go for next fill what kind of pain to expect.
wallan.
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Wallan, it took me about 8 to 9 weeks for the pain from my DBMX to subside. The stretching exercises worked great for me, but we're all different, I still get a deep burning pain under my left TE. I think rads helpef push it to be worse the past month. My TEs have been free floating for months now, they broke loose a few weeks after placement. My PS teases me every time I see him as to where we'll find the ports?! He makes me laugh every time!
Healing hugs to All!!
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Hi WenchLori:
8 to 9 weeks? Holy macaroli!
At least you have a fun PS.
Hugs to you.
wallan
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Wallan:
I've had TEs for a little over 4 weeks (BMS 2/27). I feel burning a lot on both breasts (which I've been told are nerves regenerating) -- and some shooting sharp pains -- sometimes with movement -- every now and then. Pain along ribs on inside of breast (not sure how to phrase this). Everything is "tender" I'd say.
I think the soreness is actually getting better, so maybe some is BMX related versus TE. I think TEs are generally uncomfortable but I'm either getting used to it or I'm healing or both.
Due to infection after surgery, I've yet to have a fill but had 50cc at surgery. (My TEs are the smallest on the planet -- only 200cc. I'm very petite.) Hope it's fine to wait on fills. I guess it is. Still about 10 days out from first one.0 -
wallan, my left TE hurt so bad from muscle spasms I wanted to rip it out of my chest. I only had 125 cc on the table and my PS won't do fills with drains in. Once my drain was out and he started fills my Spasms stopped and it became more annoying and sore than painful. PS thought I was hilarious because I looked forward to the fills. Mine migrated around too especially during radiation. It ended up high and in my armpit but still it was livable. My right TE never hurt at all. The right mx was such an easy surgery except for the ruptured hematoma after.
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Ladies - I am a believer in waiting for healing from BMX before starting fills, a number of weeks minimally and you should not be in post-surgical pain when you start fills - and in going "low and slow" on receiving fills. Remember that you are in the driver's seat, and there is no need to receive either large or frequent fills - the exception is if you are trying to achieve max fill before starting radiation. Otherwise, you can go weekly, every 10 days or two weeks, and get fills as small as 25ccs. A fill of 100ccs is quite large, even if you have an 800cc expander. Some PS like to do large fills as the fill appointments are tied to the surgery from a reimbursement standpoint and are not additional reimbursements as they occur. I never had to take pain meds after a fill, but if you need to for very long afterward your fill may be too large. Some have had good success with using a muscle relaxer - Soma, Flexiril, Skelaxin or Valium.
eastcoast - yes, it is fine to wait - I had my right expander, with surgical fill only, for 7 months before starting fills. The left one had been removed and was out for the duration of chemo, so we did not start fills on either until the left had been replaced and I was healed.
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On Feb 24th about 5 weeks now. Had the BMX, Alloderm and TE filled to 250cc.
3 weeks later had another 100cc, he would like to fill them up to max before my radiation,
there is discomfort the 1st day after the fill, but settles by the next day.
So far I am tolerating, and hopefully by 6 to 7 weeks will start radiation, and are anticipating 33
treatments. Range of motion is not too bad, the right had the cancer and lymph
nodes removed, so more time to come around. My left is great no problems at all.
So far all is doing well, and I am hoping it stays that way!
Good luck to the rest of my BC sisters.
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Bravenurse, I'll be praying that your journey continues to be smooth sailing. I was originally told 33 treatments also, then my RO realized I had DBMX and not lumpectomy and changed it to 28. I'm hoping your RO decided that 28 are enough as 5 additional days is a lot 🤞
Healing hugs to All 🤗🤗
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Yes WenchLori,
I had Inflammatory Breast Ca which was rather advanced, I suppose it is due to the diagnosis.
Doctors were surprised that my pathology report post op was as positive as it was. I am also Her2 + which
has driven my tumors. I will continue my Herceptin along with the Arimidex; so they want to cover all bases.
I am not looking forward to it, but have to keep positive outlook; I really have no choice!
What part of IN are you from? I moved to FL 28 yrs ago from NW IN (The Region).
I wish you continued luck WenchLori, as well as all here.
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Bravenurse, I wish you continued healing also. I didn't think to check your diagnosis... a big duh on my part! It's wonderful that your post op path report came back so positive! Everyone here will help keep your spirits and positive outlook going strong. I'm from Southern Indiana in Bloomfield an hour or so from Terre Haute.
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Molly50:
Thanks for that. Its also good to know it may not hurt because I do need to get it done on the other side still.
I am comforted that my pain is not unusual. It has subsided somewhat unless I am too active. My fills are every two weeks. The PS office called the other day and left a message that they want to change it to every three weeks but I have not been able to talk with anyone about it yet.
They don't know about my pain because I haven't complained, so the every three weeks thing is not tied to my discomfort. I will find out why.
I may need radiation now; I see the radiologist on Friday and the oncologist on Wednesday. In fact, as I type this, they just received my pathology report (which I have not seen yet) so maybe that has something to do with the change in the fill schedule.
Questions, questions.
wallan
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Oh, blessings to you Wallan for more pain free days. I have heard that low and slow is better for reduced muscle spasms. I took prescription chelated Magnesium which lessened the frequency I had to take muscle relaxers.
I have not had a fill since March 17, about 3 week ago, I am finished. Have not had pain the last 2 weeks. I hope all goes well for you and pray for continued healing for all!!
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Thanks Shoregirl.
Good luck to you too. All finished... that is wonderful! When is your exchange surgery?
wallan
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I'm hoping my upcoming appointment with my MO leads to an appointment with my PS. I've had my TEs 9 months now so I'm hoping my skin heals fast! I know, I just finished radiation lol
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Wallan, my exchange is now set for April 25 yay!!!
WenchLori, you are a trooper!! I know you managed because you had to, but I feel for you!! The best description I have heard of these tissue expanders was "turtle shells stitched to my chest". Are you finished with radiation? Hopefully you get cleared to get your squishys soon!!
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I had my exchange surgery on Thursday. So glad to be rid of the expanders and anxious to heal from this latest surgery. Everything seemed to go well. Had BMX with nipple sparing last June. The PS did not put expanders in at that time because he was concerned about blood flow to the nipples. I had the expanders placed in December. I did not do radiation. So impressed with my PS, fills were slow and steady, 50 cc's at each fil. As soon as I started feeling too uncomfortable after my fills he said my body was telling me it was time to stop and we did. He also did a little fat grafting, was wishing he could have take some extra fat from my belly since I have gained around 10 pounds since christmas!
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congrats on your exchange lollipop! What general time frame did they give you on returning to activity after exchange? My dr. doesn't want to get very specific, but I would like to know how to plan to get back to work/school and lifting by end of August.TIA
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Shoregirl: April 25th for your exchange? Thats exciting....!!
Lollipop: congrats on your exchange. What a long ordeal, huh? But anyways, it must be wonderful to be moving forward. I hope your recovery time is not too long and you can lift soon.
wallan
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Lori, you need to wait at least six months after radiation for exchange. I was 15 months post rads.
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2fun- most doctors differ in their feelings so you'll get a bunch of advice. I swapped my TEs 3 weeks ago and went back to work approximately 10 days post op. However, I am a HS English teacher and don't have a physically demanding job. I would talk to your doc about your concerns for the very reasons you said you have to plan for work.
As for lifting that will very but my doctor recommended waiting 6 weeks and then starting slowly and working gradually. I'm going to work with a trainer to help work me back up.
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2fun, I am scheduled to go back to work tomorrow, 5 days since my surgery. I sit at a desk and have no physical demands. I'm thinking about taking another day, I am still tender and the thought of wearing anything but yoga pants right now is not very appealing. I will see my PS again on Friday.
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Molly, and that 6 months will be forever to get here... if my skin heals in that time lol
Shoregirl, April 25th? YAY! That is super duper fantastic! I have you on my calendar and I'll be in your pocket on your big day!
Lollipop, it's awesome to hear you are on your way to your new squishy life. Congratulations! I'll be praying your healing will be speedy and uneventful 🙏
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Good morning -
I would really appreciate hearing from all of you that have had your exchanges, how long did your doctor recommend you were off work?
Mine said I could get the exchange on a Friday and be back to work on Monday, that doesn't seem realistic to me.
It seems two weeks is pretty normal...I have to submit for short term disability if I am out over 5 days.
I just want to make sure I have enough time to heal, I also maintained feeling in my breast area so I am concerned about pain after surgery.
I have a desk job but have to drive 40 miles each way to work, in NJ traffic :-(
I was out two months for my BMX
Thanks for your for sharing your experiences.
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I haven't had my exchange yet, but from nearly a year of following this thread, I see the average as half the time it took after the MX. The range has been from days to a week to two weeks or a month...but for most individuals it seems like half the time.
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