continued Tissue expander pain!!
Comments
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I had my second fill yesterday. I started using Bio-Oil a few days before the fill (Thanks M-star for the advice) After the fill this time I put it on the skin that was being streched and hurt and it made a HUGE difference with the pain! Just a helpful hint for those still getting fills!
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Hope~ im so glad it made a difference to you! i think its great stuff and it works for me. As does stretching straight after my fill. I did this last time and i got nearly no pain! just stretched it out across my chest every 15-20 mins all through the day,evening and even in the night if i woke,and when i released the stretch,it was like a warm,comfy feeling across my front. Instant relief!
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Hi m-star.
I have just been reading through this discussion finding out some info re the pain I am getting after my last expander fill. I noticed that you have had bilateral preventative after treatment in 1990 for Hodgkin's. I just wanted to say that I think you have definitely done the right thing. I had radiotherapy in 1989 for Hodgkin's, relapse in 2003. My docs down played the breast cancer risk and even though I was seen by a breast team for yearly mammograms-both lots of docs ignored two lumps in my right breast, even though I told them that I wasn't happy about them- for 5 years!!!!!! Turns out one of them was a primary breast cancer- I was diagnosed with stage 3, grade 3 breast cancer last year. I just wish that I had taken your route.
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Hey Ladies - On my 3rd fill today. Now I have 300 cc in the left and 290 in the right. Still no pain pills. I don't even take muscle relaxers (they don't work for me). The only thing I've notice now is that I no longer have the linebacker feeling under my arms. I also sleep the rest of the day and into the next after each fill. That's fine by me. The PA says that as I go progress the fills may become more uncomfortable. If I continue to follow what my body tells me and how I feel I believe I may be able to finish it out without taking any pain pills. So far everything that I put into place has worked.
Yahoo!!
Ciny
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Natalie~ i have PM'd you
Yes i have since heard from women in your situation who got treatment for HL that went on to develope BC.This comfirms to me that i made the right decision. Sorry you are having to go through all this. As if HL then a relapse wasn't enough. It really is a worry when we know the long term side effects of the mantle rads they gave us.
Are you aware that our risk of skin cancer is also increased? That another one we can kind of help prevent to an extent.Things like thyroid and lung though are out of our hands.well,unless you smoke!
I spent my late teens plus,staying away from smokey atmospheres so as not to inhale others smoke. I rarely went out clubbing (only twice in my life! lol) as you know how the pubs used to be for smoking in th UK! Thank goodness smoking is now banned in pubs/clubs!
We dont have enough access to UK cancer sites and info on long term effects.Not sure if you're a member of the American Cancer Societys CSN (cancer survivors network) but they have discussion forums for all types of cancers. I use the BC, HL and long term survivors sections.They are others like us that you can speak to about long term stuff. Its good to be in the know then you know what to look out for.
Our docs try and fob us off here in the UK by playing down the risks. I now know better.
Hugs,Kay
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Thank you all for your posts. I had mastectomy 2 1/2 weeks ago and I kept feeling like I should be back into the normal swing of life. Now I understand that it's not abnormal at all to be in this much pain. I've had one fill-up so far and will have my second this Thursday. Right now I do not have any pain medicine or muscle relaxers left and over the counter medication is doing nothing to help. I can't sit for more than 1/2 hour to 45 min without tearing up. The only comfortable position is to partially lay down. I don't know how I'm possibly going to go back to work in a week. I feel like a rib is broken and that the scar is going to open up every time I move. I could go on and on about how unpleasant this is but instead I have a couple of questions that you may be able to help answer:
1) Does Yoga help?
2) Will the pain go away when I have implants put in?
3) Any tricks to sitting comfortablly so I can return to work?
4) Does anyone ever get phantom nipple sensation?
5) Does ice or heat help after fill up.
Thank you for any help or advice
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Dear Kristin,
So sorry to hear of all your pain...and yet you are trying to be stoic...I admire that in you....
A couple of comments. If you are 2 1/2 weeks out and still experiencing pain...YOU ARE NORMAL! But being without pain meds is NOT normal! CALL YOUR doctor!! Insist on relief! Don't stop! If you don't get it there, go to you GP! Valium or some other muscle relaxant and a mild narcotic is totally acceptable! Insist upon help!
Additionally..yoga? Not sure. I tried it 6 months after mastectomy and felt worse! YUCK!
After implants you WILL get better! You will get better perhaps even before that! You will have intermittent periods of calm and less pain, and then times where you just want to cry! But it WILL GET BETTER!!
Sitting? I LIVED on my recliner in a semi laid back position for months! I lost my job 2 months before my dx! Isn't it funny how sometimes our worst times actually turn into blessings?? Do you have a recliner? And pillows?? I still sleep with 2 pillows a full year after my exchange!
I never had phantom nipple pain....but that doesn't mean anything about what you feel!
I took warm showers after my fills. I don't think it helped the foobs...it just helped the rest of me!
Moral of the story...you are NOT crazy, it WILL get better, GET SOME DRUGS...and we are here for you!
God Bless!
Angel
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bashiakp,
I could not agree more with angel10 that you are just starting to heal, and it is totally normal to be using pain meds at this stage!! I sincerely hope you are not suffering still. You clearly were not give enough pain meds at discharge, and I have post mastectomy pain for awhile after surgery...then the fills started, and that was another story.
I would say NO to the yoga... it is too soon, and yoga is fabulous for most things, but you need to just heal now. I had tissue expanders placed at the time of surgery, and I was not allowed to lift for two weeks, OR raise my arms above shoulder height. I stayed at a friends house who became my arms....bless her heart.
Pain Management is a patient's Right...don't try and be a hero, and remember, when we are in pain, we tend to hold our muscles tight and take shallow breaths. Both are bad for healing. One part of yoga you CAN do is take nice deep breaths
Please let us know how you are doing...
Blessings,
traci
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I am so happy I found all of you on here. I too was thinking I was the only one going through this much pain. I had my mast on Aug 6, 2010, I am currently up to 500cc in each side. I am heading back in to my PS this Wednesday to hear what my exchange date is. I too still have to take pain pills, I too can not drive, I too can not sleep. I am currently at the point where sleeping in the chair is not working either.
Maybe I am not doing enough Stretching? Good Stretching suggestions?
Thank you in advance!!
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mmrichey:
Sorry you're having so much pain--I did too. I can't have my exchange surgery until I'm done with chemo, which I finished two weeks ago. I had a mastectomy and expander placed on the right side in February. Then I had 6 months of treatment. Now I'm waiting 6 weeks for my exchange surgery.
I was in a lot of pain for 3 or 4 months, but eventually it settled down. It's still uncomfortable--like having a baseball in my chest so it does make sleeping awkward and I still have discomfort, but I don't have to take pain meds for it so I consider it tolerable.
Have you told your surgeon that it's really painful--maybe your doctor needs to remove some of the fluid--that sometimes helps.
I'll be thinking good thoughts for you and hope you can have your exchange soon--that should make things better. My surgeon calls it 'baseballs to pillows!"
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Are you seeing a PT - if not, get a script from your PS. It works wonders - ask for a lymphodema specialist PT- even if u dont have lymphodema, they are trained to relieve the pain of a TE.
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Thank you Codavis and Claire.
Baseball to pillows- that sounds lovely!!! I dream of that day. My PS wants to put 50cc more in each side to make them a full C when all side and done. I think I might be happy with a B.
I am not seeing a PT. I think that is a great idea!! I do feel better after a hot bath and a little stretching in the tub. Issue is getting in and out.
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My PT gets angry at the PSs who dont order PT after expanders put in. I was pain free except the day or two after fills.
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I am sore for about a week after each fill. Then I am back in for another fill when that starts feeling better.
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mmrichey- I'm not sure how far back you read the posts on here so forgive if I'm repeating myself. I was miserable with the fills until my PS prescribed Flexeril. It is a muscle relaxant. Most of the pain comes from the pectoral muscles stretching and it really helped a lot. Some women get drowsy when taking it but I didn't have any problem at all whereas the pain meds totally wiped me out and I couldn't drive on them, either. The Flexeril is generic, too, so is usually pretty cheap. I would start taking it about two days before my fills until a few days afterwards.
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I've found these boards really helpful - it's nice to know you're not the only one going through all this pain. I had BMX on June 30 with TE insertion and I'm still in pain, although finally seeing the light at the end of the tunnel. I developed a staph infection a few weeks after the surgery and was in the hospital for five days on antibiotics, which delayed my recovery as well as my initial expansion. I just had my last expansion last week and have my exchange surgery scheduled for November 10. I can't wait to get these TEs removed - they are so heavy and uncomfortable.
Like many of the women on this forum, I was in bad pain the first couple days after each tissue expansion. My PS prescribed valium as a muscle relaxant and I take a lot of advil (I needed to take advil every day because even though I only had a couple days each week of bad pain, as soon as the pain started to become bearable, it was time for another expansion). I actually don't remember what it's like to be pain free. I had three lumpectomies in May before finally having my mastectomy in June (they couldn't get clean margins), so I've been in pain for months. I still have trouble sleeping. I'm a side and stomach sleeper, and although I've been able to sleep on my side for awhile now, I often roll over onto my stomach and wake up in terrible pain.
I don't understand how so many of you were able to go back to work full-time so soon. I still don't have enough energy and have too much pain to make it through a whole day without lying down every 4-5 hours. Do others of you have issues with your energy level in addition to pain?
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Hi all, I've searched everywhere for this forum and at last I found it! I am 3.5 weeks after BMX (09/29) with TEs in place and I too started wondering if the pain would ever go away. When I read some of these posts my heart goes out to you, but now I know I am not the only one who has these issues. The best (the very best) thing I bought was a "boomerang" shaped pillow in Bed,Bath&Beyond. In the UK these are used as 'nursing" pillows and they are very comfortable in a chair or in bed. I couldn't be without mine. ($20!) I am still taking Ibuprofen and 1/2 Valium at night, but trying to get by during the day without it. My first fill is Nov 3rd and I am dreading it. The nurse there says it wont hurt at all, but I'm not sure I can believe that as I am still so uncomfortable after the BMX anyway! I am having my first physio appointment this week and have tried to be very good up until now, but I am driving (very carefully and not all confidently) when I have to. I keep thinking the pain should be better than it is (maybe not). But we have to get through it and get through it we will. Today I went to the gym and cycled 6.5miles on the stationary bike, so I know I am getting stronger. I also did the Dallas Susan G Komen Race for the Cure (3.1miles) 17 days after my BMX - yep, that tired me out! I go back to work next Monday after 1 month off and even before my first fill........ not sure about that but will chat to the Dr before we decide. Still waiting Oncotype results and dont know what's next for me until these come through, except physio and fills!
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scubacat- Sounds like you are doing everything right- exercise, physical therapy, etc. I know for me the Valium didn't really help with the TE pain although it did help me sleep at night. I found I was too "doped up" to take it during the day. Has your PS tried prescribing a muscle relaxant? The pain is usually from your pectoral muscles being stretched.
The fill itself shouldn't hurt. Your breast skin is still pretty numb so you shouldn't feel the needle going in. After they start "filling" though you'll start to feel some pressure. Once you start feeling that it's a good time to say stop. (Remember, you get to say how many cc's you want- not the PS.) You will usually feel some discomfort about 2 hours after you've had your fill so maybe time it to be home by then? This is when the muscle relaxants help the most. Also warm showers and gentle stretching.
If anyone ever realizes they have put too many cc's in during a fill do you know the PS can actually remove some of it? Some women have gotten home and have had so much pain they went back and had some taken out. Try not to get in that position in the first place, though. The slower you do the fills the better it is for your skin and for your results later.
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Like everyone else I am experiencing the same pains. I had my BMX/auxillary node and TE on Oct. 5th. I was a very small A and actually came out of surgery bigger than i went in. I had my first fill last Wed. and will have another on Thurs. I have an appt for lymph PT next week also. I can say that the fill didnt really hurt at all. I could feel a small pinch on one breast, but didnt even know he was done with the other because it was totally numb. I have been taking Scolaxin(?) a muscle relaxer and percocet around the clock up till last thurs. I really need to drive so I try and just take Ibprofin and the scolaxin during the day and the percocet at night once I know Im in for the night. Although I do find myself in so much pain during the day that I cry and put ice on it to numb the feelings. I say Feelings because Its not always an intense pain but a pain/shocking/pins and needles feeling. I was actually told it might be the nerves under the skin trying to reconect again after the surgery. Whatever it is, I cant take it at all! And until now, I thought I was being a baby about the pain and guilty for wanting to ask for a refill on the pain meds. But I guess not. I already have stretch marks too! I like the idea of using Bio-Oil so I will pick some up tomorrow. Also, have any of you had a suture from inside your breast break through the skin to the outside? 1 1/2 wks ago I notice a bump on the bottom right of my right breast. It looked on the outside like a pimple. My PS said it was a suture holding my TE in place on the inside that would dissolve. Well on Saturday it popped through the skin and now I have a black thing poking out depending on how I move. It doesnt seem to heal because it keeps poking back out. I am scared this might cause an infection. And now that breast seems more pink/purple than the other breast. But that might be because the other breast is much smaller, or maybe Im just imaging it.
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tammy- Not to worry! I had those same sutures coming to the surface in a line around both breasts. My PS said they are supposed to dissolve but don't in some people. The best thing to do is pull slightly with tweezers and snip off the ends as they come to the surface. If concerned about infection just clean the area with soap and water afterwards. My PS ended up removing all the undissolved sutures during exchange and I'm sure yours will do the same but you may want to confirm that. If your fills become too painful you can always do them 2 weeks apart like I did. Remember, the amount and timing of fills is your decision- not your PS's.
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Today was physio, and shocker, she said I was doing great, so perhaps I just expect too much of myself. I will ask the Dr about something other than Valium but that is what they perscribed as muscle/spasm relaxant for me, I'm nearly out anyway. PT says range of movement is good (4 weeks out) but I want it to be more so now I have the tools/exercises to move forward. She was concerned with some scar tissue and showed me how to massage it with lotion but I will use Arnica cream. Apart from that all is good and I can work on getting the full range of motion back and still go to the gym and work on lower body lightly. So I'm happier today. Agreed to physio 2 times/week to measure improvements, plus fills start next week. Hope everyone is having a good day. Best wishes.
Kate - I love your quote, and received a really sassy T-Shirt from a great friend with this quote on it last week. I promised him I would be wearing it to Superbowl Party 2011 on Feb 6th (my 52nd birthday)!!!
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scubacat- Glad you are having a good week. And I know you'll rock that t-shirt in February!!!
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scubacat:
I had my mastectomy (right side only) on February 23. I stopped getting fills in May or June.
I just want to warn you that it's still uncomfortable and sometimes painful even 7 months later--after all, you basically have a baseball in your chest. It's tolerable, though. I don't take any pain meds and have found that shifting postitions helps. You are doing everything right and will get through this--4 weeks out isn't really that long in terms of healing.
I have my exchange surgery in two weeks and, though I'm nervous about another surgery, I can't wait. As my PS says, "It's like going from baseballs to pillows!"
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Tammy, I have the same TE pain and I have had vicoden for it. I can't take motrin right now because I am headed for the exchange next week..but I need something to help because tylenol doesn't do the job! These things are so ******* painful and hard it isn't even funny! It hurts more when I do things to where my arms move more pushing the TE around. Not easy NOT to do when you have 3 kids...10, 6, and a 2 year old!
I had a suture poke out on my Lat Flap side..it did get pussy, but my PS said that I have healthy tissue and that she wasn't worried about it at all..I cleaned it up with alcohol and then put antibiotic ointment on top of it with a band aid and the PS said that is exactly what she would have done.
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codavis: In some ways I cant wait for the fills because I want to get on with it, and know what to expect each time. The not knowing and waiting is the worst. My next big surgery will be the DIEP but I have no idea when that will be, based on fills and other treatment (if required). Still waiting on Oncotype DX test results tomorrow, then I can hopefully make some sort of timing plan! Again, it's the waiting, oh the damn waiting. Just 2 weeks for you until exchange, that's great..... so many good wishes for that, and the light at the end of this tunnel is starting to shine brighter.
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THanks gals. My PS was able to cut the suture back some and told me to put a bandaid and neosporin on it till it disolves. And as for the pain, he told me that its normal for some women to be in this much pain. He changed the pain med from Percocet to Vicoden. Not sure why but it seems to be working very good! I find that I really needed it tonight after a crazy day with 3 kids Halloween parades at 3 different schools, then a night at Chuck e cheese. Colette37- Our kids are around the same ages (4, 6, 9 with high functioning autisim) so I totally understand what you are coming from.
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Codavis & to all ladies in waiting~
Been there & done that.....there is light at the end of this journey & you're almost there! I am nearly one year post from exchange & what a difference. I'm a uni and both of my "girls" are a great match & "feel" wonderful!
Good luck & bless you all!
NAE
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Tammy...My PS changed my pain meds the same way. Vicoden is easier to come off of than Percocet...had withdrawals from Percocets just before last Christmas as I was coming off of treatment from Rads and had Percs regular because of chemo/surgical/rads pain. I was physically addicted, but not mentally. I hate those things with a passion, but realize that if I want to live at all while they are doing these things I need the pain pills. Vicoden doesn't give you the physical side affects and is not as strong as Percs are (vics are for mild pain). Percs are for moderate to severe pain.
It is amazing how tired you can get when you have kids! It seems like things to do never end! LOL
Nedeza...Thank you for commenting! It makes me feel as if I can get to the light when I read stories like yours!
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I am six weeks post BMX and when I lay down at night-I get alot of pain just below the expander-it's kind of a burning, sore ribs feeling. Anyone else having this? I am 3 days into my first chemo tx, but this started happening before tx.
Thanks Tiffany C.
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Today was my first fill (120cc) and it really was OK. Uncomfortable on the left side, but didn't feel anything on the right side. 2 more to go (maybe one). Still waiting on Oncotype DX results to know about chemo or not, otherwise we can move on with DIEP end of this year. Yeh.
Pain is getting better each day, helped by exercises and weeks that go by!
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