continued Tissue expander pain!!
Comments
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AM I STUBBORN?
I have been reading this post since I had my BL mast. From everything I have read AND heard from other women; all of us experience things DIFFERENTLY and our treatments are all different.Many women say that their PS did not push them to get large fills rapidly; but, mine pushing me.. He is, supposedly, the best PS in this area and has been doing this for over 35 years. I'm 56 years old and have been hearing about him since I was 25 and never heard negative thing about him.
I had chemo to shrink my tumors first. On Sept.15th, I had the double mastectomy with expanders placed. My PS put 300cc's of saline in right away because I had some extra skin and I was a size 36D naturally.
Since my mastectomy, I've had 3 fills of 100cc in each breast: the 3rd. being today. I'm also getting 25 treatments of radiation. Today, was my 3rd. treatment. My expanders will hold 800cc each.
Today, I told my PS that I was in too much pain and did not want a fill, and, that I had just come from radiation. He became a little upset with me and said that, "I definitely needed 100cc's today because the radiation will begin to shrink my right expander and he will not be able to obtain the amount of skin that I need for a size C. As you already know, I gave in and took the fill.
I also told him about my pain, tightness, and, itching behind my right expander. He has been giving me muscle relaxants and loratab for pain. He acts as if I'm just being a complainer and should not be experiencing these things. He says the itching may be just from a "little allergic reaction from the alloderm that he put in." OR, it could just be a nerve bothering me.
I respect each and every lady on this board and it has helped me tremendously to read that I am not alone.
I talked with my husband about all of this. He has been wonderful and taking care of me all during my cancer. He says that I should, "do what the doctors tells me I should do." And, he knows me and says that "I can be stubborn and may keep the doctor from doing the best job that he can do.....And, then, I will not be pleased with the outcome."
Just wondering......What do the other ladies here think about this?
Kathyesp
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Kathy, I am not sure re: your situation ,being that you are also receiving radiation. I'm not sure if that in fact does change things with how the PS needs to progress. I'll look forward to hearing what other ladies say.
It sounds like most women's PS will "back off" on injections if they've become too painful.
I'm 8 weeks out from bil. mastectomies with Tissue expanders. My first 3 fills (50 cc, 75cc, 75cc) went absolutely fine. This last fill of 75cc's was a killer. I had the fill on Friday and am STILL hurting! I've been loading up on muscle relaxers, Vicodin, Motrin, and stretches, and still very uncomfortable sharp crampy feeling, particularly on my left breast. It feels like there is some kind of pain that shoots right to my rib. I haven't tried the ace wrap that scasey said helped her, because any binding pressure on my "breasts" makes it very uncomfortable. I am supposed to see the PS this Friday for another fill, but I seriously doubt I will accept any injection that day.
I was hoping to progress right along so I can get my exchange in before the New Year (when my out of pocket deductible goes back to 5,000.00! - Yikes!) I'm still hoping that God will enable things to work out that way.
Well, ladies....thanks for letting my ramble. It really has brought comfort to know that I am not alone, and I am sad to hear all of you are having pain, but it helps to know that I'm not a "wimp", and that pain with the tissue expanders is sadly experienced by many....
God bless you all. I pray that each and everyone feels encouraged in their heart to know that they will make it through this, and that there are bright days ahead!
Sue
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Hi Kathy! I think you have a handle on it ,I think the fact that you are having radiation, is why he is filling you. I also think that makes it hurt because you are stretching that radiated tissue, and the bigger it gets the more it stretches. Are you taking meds before you go to see him?that is what helps me! Maybe you shouldn't go to see him after radiation, how about before or see him on a day with no radiation. These are just suggestions I am a RN and sometimes just juggling things around help. I hope it does, Good luck, Dawn
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OnEaglesWings,
Ouch! is right.
I pray that you can get your exchange in December. I want my nipples and areolas done before the end of the year so I won't have to pay a $400 !!! deduct come January. But if my foobs are not ready then I will wait and pay. I was never in pain with my fills. Just discomfort. I did have some pain like you described in one side that hurt when I would take a deep breath but it soon went away. By Friday you may feel better and can receive a very small fill and see how it goes. How long does your PS wait for the exchange after your final fill? I had my exchange on Oct 20th, that was 18 weeks since my last fill. I have done fine with all of this and I am so thankful for that. God gave me the strength and a fine group of sisters to help me get through all the surgeries. I give Him all the glory.We have a new Prez Obama and not by my choosing but we have our same God and he will be with His children and we have that to bring us comfort.
((((hugs)))) I love your name, wish I had thought of it !!
Linda
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Dawn and Linda, thank you for your replies!
I am taking pain meds right before the fills: but, that is not the time that bothers me the most. It's all of the time after....During the times I am out of the house and trying to sleep at night.
The worst part right now is the itching behind the expander where my breast cancer was.My radation is every week day, for 25 days. My PS does not work on the weekends: so, I have to see him on a day when I have the radiation.
So far, I am looking pretty good....There is no sign of shrinkage; but, I've only had 3 radiation treatments. I agree and think that I am going to try my best to do what my PS and radiation doctor tells me to do. It's tough!!!
HUGS
Kathy -
Hi Kathy! Keep up the good work! Your good attitude will help you through this. Just think of all that is behind you that you don't have to face anymore, and hopefully you will start to feel better. Tomorrow may be my last fill, I hope. I am not having radiation, but it still stretches and pulls afterward. I wish you well with your treatment! Good luck, Dawn
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Sue - so sorry you are still in pain from your last fill. How may more do you think you will have? I am wondering if your body is telling you it has reached it's limit?
Kathy - I did not have rads but would think your PS could go less. There are women on this site with pain that even went down to 25-30cc's. I just don't feel you should have to HURRY unless YOU want to...like me trying to get nips by the end of the year when insurance deductible kicks in again. This stage is not a race and you should not be miserable.
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HI Kathy,
I have written before but I still think you need to take it slower and listen to your body. It is your body and your decisions. I am 7 weeks out and have had one fill. I know this is too slow but I got whacked in the face with starting chemo and all the decisions that go with that. I got to get my port put in today and chemo starts tomorrow. So I am taking the fills very slow. Who cares! I am going to go every other week and get 60cc's in each. You can take as long as you want. Keep your chin up!
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Hi,
Even though my exchange is a few months away, can some of you describe how they do it? Is the expander deflated first and then removed? If so, where is the incision made. Is this how they insert the implant too? I will be asking my doctor; but in the meantime, I would like to hear from you gals with first hand experience. There must be some soreness from the exchange. Does size make a difference, as I have chosen to go larger, rather than an average C. Thanks
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Hi latticelady,
While I'm still 9 days before exchange, I'll share what my PS told me. She uses the same horizontal incision across each breast to remove and replace the expander. Since my PS over expands compared the the replacing implant, she may remove a little saline from the expander to prevent the need for a wider incision. I will need a little pocket revision on the left side of my sternum at the same time. So I expect a little more discomfort than the simple exchange. She still doesn't think it will require a drain. I'm going from an almost B to a nice C. I can't wait. My nerves feel like they started to regenerate a little a couple of weeks ago. Seriously? They could have waited just a little longer.
Good luck
Carol(AZ)
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CristlC,
I would definitely take it slower, IF I were not taking radiation treatments. This is the only reason that my PS insists that we go at this pace because of the radiation. He said that it will cause shrinking; so, we need the extra skin.....And, that I will not get the results we will need if I don't the fills as he recommends. He's done breast reconstruction for decades and has a great reputation
BUT, when I left his office, I told him that I will need the pain med. and muscle relanxants to deal with it. I'm very careful about not getting hooked on anything. I will not take it unless I absolutely have to.
HUGS
Kathy -
latticelady - I had my exchange on 9/19. My PS reopend a portion of the previous mastectomy scars and removed the expander (undeflated). He then placed the implant. He took in three sizes and determined which fit best to not have ripples, etc. I had no drains. I had bilat implants placed. No pocket revisions needed. Process took about 2 hours, about 1 hour in recovery. I took NO pain meds once I left the hospital. Very minimal discomfort, slept on my side the first night. I could remove the bandages the next morning and shower. I had three layers of absorbable stitches then covered by surgical superglue. I did not need to wear a surgical bra or sports bra. I did not have any swelling and there was no dropping or fluffing. I was an A cup (almost) and went to a full C cup. I have a 5 lb limit on what I could lift for 2 weeks, then a 20 lb limit for 4 weeks. Pics posted on the picture forum the day after exchange if you want to see.
GOOD LUCK!!
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sbmolee,
I had a bilateral with immedate recon (expanders) on 10/22. My PS put 200cc in ea boob at surgery. I get my 1st fill next week. They dont look too shabby right now and I am hoping it only gets better. I would love to see some recon pics, but I have no idea how to get to that forum. Please help. Best wishes to all.
Tracey
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Hi Tracy - to get to the picture forum - send a pm to Timtam. She will send the link and the password to get on . Many brave women have posted pics and I have found it invaluable as I go though each phase to know what to expect.
I had 200 ccs on each side with my expanders placed....I had bigger boobs right away. I read my report and they only took 120cc of tissue with the mastectomy!
ca
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I'VE HAD CONFLICTING INFORMATION FROM MY RADIOLOGIST AND MY PLASTIC SURGEON.
Yesterday, I went for a 100cc fill in my expanders.....I am having reconstruction after a mastectomy. I had been marked for radiation and have received two treatments. The plastic surgeon clearly saw that I was marked. I asked him not to give me a fill because I was having pain from being too tight. He said that I should have it, otherwise we would not get the results that we want.
Afterwards, I went for my radiation treatment. When I got there, I was told that I COULD NOT HAVE RADIATION DURING BREAST EXPANSION by my radiation oncologist! I was then told that I would need another C-scan to remark my breast for radiation.
I phoned my plastic surgeon and he said that he had been doing this for 30 years and never heard of this. He was very upset because I became upset about it and said,"I assure you, that you will not be receiving any more expansions until after the radiation." I have 22 more radiations to go. Now, I am not sure about either doctor. It was not my fault that I received conflicting information.
HAS ANYONE ELSE BEEN THROUGH OR GOING THROUGH THIS?
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Hello ladies,
I have expanders in. The drains were removed about 8 days later. Now I have fluid build up around both expanders. My PS says that he will either remove the fluid with a needle or he will have to put the drains back in.
Has anyone had this happen and if so what was your experience?? Best wishes to all.Tracey
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Hi Tracey,
I'm so sorry you're going through that. I was lucky and protective of my drains. Try to be as inactive as you can be. The more you move, the more the fluid will develop. Ask your PS about cool packing the area. Some allow it and some don't. I hope it resolves soon.
Carol
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Hi Tracey
So sorry that you have to face that. Yes - I had a seroma on my right side. About a week after finally having the last drain removed I had the fluid build up and it was very painful. I had to have a fluid drained in the PS's office. Then it built up again and I had to have a drain put back in under ultrasound so that they would not puncture the expander. I was more frightened than anything and it wasn't really all that horrible or anything. Just disappointing having to have the drain again. But it certainly helped - got rid of the fluid and relieved the pain and pressure.
I hope that you are able to get it worked out.
Amy
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Hi Tracey! I had a mastectomy on Sept. 23 one drain removed in one week and the second drain removed the 2nd week and a seroma drained after the second drain was removed. It was not too painful and felt better after being drained. My PS filled my implant after the drainage to see if filling the space would stop the seroma buildup, and that is what happened. I think filling the implant also filled the cavity, and stopped my body from trying to fill it. I did notice as my expander filled ,the plastic feel went away. Even though I still had some streching feeling and some pain during the fills. Now I need 2 more fills and notice I only have slight discomfort the night of the fill and it is feeling much better the day after the fill. Good Luck! Dawn
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Hi Tracey,
My drains were removed 8 days after my double mastectomy also. I had fluid build up, which my PS removed with a needle two times. He said that it was not a serious thing. After the second time he removed the fluild, I had a small amount build up under one expander. He said that my body would absorb it, and, it did.
Hope this helps you feel better!
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Thanks Ladies,
You all are awesome! I really appreciate the responses. Carol it is so amazing that you said the more you move the more fluid build up, because 2 wks out from surgery my PS told me that I could go back to the gym but not to run or lift any kind of weights. He said I could power walk on the tread mill. So thats what I did and that same night is when I noticed the fluid build up. It seems really full after I leave the gym, then the next morning it's gone down some. I wonder why movement would do that??
I will be asking about a cool pack. The areas feel a little sore, tender, and full. Kathy did you have expanders in when you got the area drained? I am hoping the needle drain is all I have to go through. I have been through chemo, I can take a needle.
Dawn my PS did say that we are gonna fill regaurdless on Tues, so maybe he is thinking the same thing, that the fullness of the expander being filled will help with the build up.
Amy when you had the drain put back in under ultrasound was it painfull, and how long did you have to keep the drain in?
Thanks again for all your replies. I go back to him on Tuesday so I will keep you all posted. Also do you think a fluid pill would help? Cus right now Im sure I look like the Tazmanian Devil!
This may very well be a dumb question but it's one that I dont have the answer to. Thanks again!!Tracey
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Tracey - I sent you a pm
Amy
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Hi Tracy don't take a fluid pill. That won't help it is a pocket of fluid not fluid in your circ system. I would ask him if you should stop being active for a while. Maybe your body is working too hard and when you workout you are moving too much fluid. Just a thought. Best of luck! Dawn
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Hi All, This is my first post. I felt I needed to talk with someone. I was diagnosed with DCIS 9/10/08 had my mastectomy 10/17. It has been a whirlwind of tests and biopsies of both breasts. I am so fortunate that I only needed a single mastectomy and the surgery got all the cancer so I don't need any further treatment. Even though I realize many of you have had to deal with so much more than I have, it's still hard sometimes to comprehend all that has happened. I have an expander in as well. The PS put in some fluid at surgery and I had my first fill this week. I have a high rib cage and it sometimes feels like my ribs are going to snap. My PS is confident we can get much of the work done by the end of the year. This will help with my medical deductible. He is great and compassionate and I trust him completely. Never going through this before it's hard for me to know what is normal for pain or if there is something wrong. I have 4 more expansions in the next two weeks. It kind of scares me a little, but I will tough it out as long as I know I'm not hurting anything else. This will also make it faster to have the exchange. I am amazed to hear of those women on this post that had double mastectomies with tissue expanders in both. I honestly don't know how you do it. I had all I could do to move around using my one good side. I can't imagine how you function with surgery done on both sides. I hate to borrow trouble but have any of you with single mastectomies been concerned of it turning up in the other breast? I know some women have both done just so they can have peace of mind of it never being a concern. This all came about so fast for me, I just wasn't mentally ready to have both breast removed since one was okay. I know I've covered a lot of topics, but it would help me just to hear from a few of you as to your experience and how you're coping.
Thanks,
CRB
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This is such a comforting thread to find. I thought something was wrong with me for asking the nurse to take out 10ccs after filling me with 60ccs. I just couldn't take it. 50ccs felt much better but I am having pain on my left side. I've read of women getting 100ccs at each filll and I thought I was being a wimp for only doing 50ccs. This thread makes me realize that everyone is different and I should just listen to my body and take my time. I had my bilat mast on 10/21 and just had my first fill last week. I started with 100ccs after surgery, so now I'm up to 150ccs. I have a small frame so I think once I'm in the 300s, I will be where I want to be...let's hope b/c these fills are NOT fun. I think I will ask for muscle relaxers at my next fill as others have suggested. Maybe that will help. Thank you ladies for making me feel better.
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Thanks Dawn,
I think im gonna have to move my apt up and see if my PS can see me tommorrow because The areas are getting more full with fluid. The more fluid the more sore it gets, I am feeling like the fluid is putting presure on the expander and it feels like the expander is being pushed into my chest. UUGGHHHHHHH!!!!!!!!!!! This is not fun at all! Thanks for the info on the water pills. I guess I will just take it easy today and ask the PS if it will help.
CRB, I think you should try and find comfort with your decision. The odds of it returning to the other breast are low. Everyone is different. I choose a bilateral against my docs opinion because I just did not want have to worry about it. With that said the odds of it returning in my good breast was low but I am a worry wart and just did not want to think about it. There are tons of women who choose to do the one and REMAIN cancer free and fabulous! Now you can add yourself to that list!!
I know your gonna be fine!Im so jealous of all you FABULOUS ladies with no fluid build up.
I will let cha know what happens. Best wishes.Tracey
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Hi CRB,
I only had cancer in one breast and chose to have a DB because I was so afraid it would show up in the other breast. But, I had 6 months to think about it....I had chemo first to shrink the tumor.
I agree with Tracey. You should have comfort in your decision. My surgery was Sept. 15th and I am still in a lot of pain from these extenders. If feels like someone is gripping both breast as hard as possible and holding it! The only way I can get through the day is by taking muscle relaxants and pain pills.....And, I take as few as possible. I don't wish to add another problem to my list and get addicted.
I am currently having radiation and will have my permanent implants a few months from now.
Hang in there!!!
Kathy
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Hi Tracey! I know what you mean about the pressure I am so glad you moved up your appt.I have about 600cc in my expander and I am fine all day until I lie down then I feel the fluid shift and creak and I feel that pressure like you do. I agree UUGGHHHHHHHH! I hate to move in bed! Make sure you take some pain pills before you go to see the PS because it hurts! I don't know how else to say it! I will say the bigger my expander got the less fluid build up I had,I hope you are as lucky, because once that fluid stops to build up you will feel better.Take it easy, love you deserve to!!
CRB! I am walking in your shoes!!!!!I Ihad a right mastectomy on9/23, and hopefully need only surgery and reconstruction! I am still waiting for my onc type testing I'll know on the 17th. I worry about my healthy breast too! But hopefully we will be some of the lucky ones! My girlfriend is a 21 year survivor with ca twice in only one breast, that is why I had a mastectomy vs. a lumpectomy. Keep me in the loop girls! Dawn
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Hi Everyone, My first post here. I had a double mast, chemo, reconstr. with muscle and implants over 7 years ago. Should I be here visiting with you all? Can I help anyone? I feel pretty sure everyone is different, but knowledge is power.
barb
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Hi Ladies,
Your comments have been soooo helpful and encouraging. I had my second fill yesterday, one tomorrow and two next week...then hopefully done. These expanders.....the constant pain to breath and move is something else. I was speaking to my cousin yesterday (who had BC 7 years ago and had the stomach surgery...is it diep or flap?) I had to laugh because she said that if BC was a mens disease and they had to go through all this there would have been a cure found by now.
I have been wondering how many of you work a FT job while you are going through this. We are self emolyed, and though we suffer from an insurance perspective, I am able to lay low when I don't feel well. I never had any surgery in my life until I went through this. Your posts help me gauge my own physical pain and emotions. It's sometimes grips me that 7 weeks ago I didn't even know I had BC....it sure is an adjustment to the mind and emotions.
I hope my fills are done by next week, Then my PS said I should be able to have my exchange surgery by the end of the year. I am so fortunate that God matched me up with a great breast surgeon and PS.....they are both wonderful. Though I don't look forward to another surgery, I'll be glad to get the expander out and on my way to looking my new version of normal. I'm glad this is the bulky sweater season cause I feel like the "hunchboob of Notre Dame." As you know the shape with the expander looks nothing like a breast. But....I've decided that my new favorite Christmas song is going to be "All I want for Christmas are ny two front teats!'
Thanks ladies and please keep the encoraging posts going..it helps me
CRB.
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