Pleural effusion after mastectomy-scared
I was originally diagnosed with breast cancer-infiltrating ductal carcinoma-in 2003 at age 33. I opted for a lumpectomy w/radiation, chemotherapy and tamoxifen. I had my daughter (my only child) in 2010. I had an abnormal mammogram in 2012. First surgeon refused to do the mastectomy/resconstruction, so I opted for a second opinion. I finally had a mastectomy with expanders put in place on December 19th 2013. The plastic surgeon said the main thing they did differently than planned was they had to use donated tissue to help anchor everything on my left side, due to the radiation I had there a decade ago. I had noticed I had a harder time breathing, but not bad. I was told the expanders (which feel like lead weights on my chest, I hate them) can cause this sensation.
Three weeks ago, I got a bad cold-it started as a bad sore throat, then became sneezing, congestion, etc. It just seemed to hang on, with bad post-nasal drip and coughing. I was told to take over the counter meds, but they did no good. It got to the point I was having more trouble breathing and could barely catch my breath. I also had a low-grade fever that hovered around 99F, nausea, and bad chills alternating with hot flushes. I had a six-month oncologist check-up. My onc referred me for a chest x-ray, which showed moderate pleural effusion on my left lung. I had a thoracentesis done on Wednesday to draw out the fluid. I immediately had horrible pain in my middle/lower left side, along with tightness/swelling on my rib cage, right below my breast (well, where it used to be). Whenever I breathe in deeper, I feel the pain and more pulling. I went back to the hospital for an x-ray because I felt like I was worse, not better. There was still a bit of fluid, but was told it was not to the point that I should still be feeling badly or unable to catch my breath. Then I went to see a pulmonologist who told me the pathology results from the thoracentesis wouldn't be back until Monday. The only thing he got back was the culture result, which was negative. I'm assuming this means I don't have pneumonia.
I am still feeling tired, and still have the swelling on my rib cage, along with the back pain. I noticed after the thoracentesis, the low grade fever is gone and I don't seem to have as much post nasal drip, but still have a cough. It seems like I can't get any help or answers. I'm assuming that I am most likely dealing with metastatic lung disease of some type. The x-rays didn't show any nodules or lesions, just pleural fluid. I have an appointment on Thursday with the pulmonologist for another x-ray and a CT scan.
I am so depressed and angry over this. Before the mastectomy and the horrible cold, I was fine. I could function like a normal person-do housework, take care of my daughter and our dogs, run errands, etc. Now I am just an observer, an invalid in my recliner and I HATE it. My mom had breast cancer and died from it over twenty years ago. She also had bad pleural effusion. I remember her being admitted into the hospital-what was referred to as "the death floor" where they treated terminally ill patients. She actually got released from the hospital, but died a couple of months later, a shrunken, emaciated shadow of what she once was on my grandmother's sofa. Now I'm wondering if that is going to be me. After eleven years, my number is up and the pain and discomfort from the mastectomy and expander fills was all for nothing.
Comments
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Just wanted to let you know I was thinking about you. Pray you're tests are benign and they find the cause of your cough. someone will be along soon who has had a similar experience.
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Thanks for your reply, Bevin. I'm very scared and am having nightmarish flashbacks from when my mom was diagnosed stage 4 and terminal. I think it's worse for me, because I have a better idea what can happen and what to expect.
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Whovian05 - I hope that your results indicate that you had an infection. Viruses like the flu can cause a pleural effusion and still give you negative cultures. I can only imagine how difficult the waiting is for you, especially since you watched your mom wither away over 20 years ago. If the pathology does comes back showing Stage 4, know that there are many treatments available now that weren't 20 years ago. If you look at the stage 4 board, you will see woman that are living for many years and thriving with Stage 4 BC. Of course, I'm still hopeful that's not the news that you're going to get today. Fingers crossed for benign results.
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whovian,
Sending warm and healing wishes. I also saw my mother die from BC related causes (congestive heart failure) 20 yrs ago when I was in college. There's a special kind of horror that comes with a diagnosis for those of us who saw our mothers die from this disease. All I can say is what my doctors and friends have said to me...you are NOT your mother. You are NOT your mother. Treatment has come a long way in 2 decades. It really has...i still have to repeat this to myself occasionally, but it is true. Take care.
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I went to an appointment with a pulmonologist today and got the results from my thoracentesis. The report states that "atypical cells are present, suspicious (but not diagnostic) for metastatic carcinoma." In other words, they see abnormalities, but can't 100% confirm metastatic lung disease. I still have pleural fluid in my left lung that will be drained on Monday. There is noticeable swelling on my left side, just below my breast (where it used to be) and there is a lot of tightness and pulling on that side that is causing a lot of discomfort and my cough is driving me crazy. I have been crying off and on all day. I'm not going to get to watch my three year old daughter grow up or grow old with my husband.
This weekend I am going to go ahead and take as much of my clothing and other items and get them ready to go to Goodwill. One of my dresses will be set aside for my burial. I watched my father get rid of my mother's things after she died, and I don't want to have my husband deal with that either. It's enough he's going to have to keep my wedding rings in safekeeping for my daughter and throw out my makeup. I feel like I need to accept the fading away of my life. I'm just so angry that I was convinced to get a bilateral mastectomy with these awful, uncomfortable expanders, and now it was all for nothing.
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whoa,slow down girl! am not discounting your feelings, but dont go to the goodwill yet! first ask your doc for a chill-pill, and then breath.please wait for other women to show up here! and you can get the expanders out! like some of the women above have said, there are plenty of tricks in their bag-o. i am sorry about your mother, that has got to be hard, i have only lost very good friends. please just wait until you have a plan of action, from your docs, and don't go buying an urn already. like you though, i am sure that is right where my head would go, too; but your case especially so since you are also thinking of the children.
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also, up there, you said, "you have a better idea of what could happen and what to expect". seriously, the idea you are having, is the "worst" idea. and it is just that... an idea. please hold on to your horse, kindly, until you start to believe that you are here, right now, and you will get better feeling, and the shortness of breath and coughing will subside. and, you are NOT YOUR MOTHER, altho you are taking care of you by saying whats happening to you, here, are you still here?
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I know I seem like I'm going overboard, but I want to prepare for the worst as much as I can. My husband is angry with me because he feels like I've already dug my grave. Pleural effusion is not good at all, especially for a breast cancer survivor. I can't get it out of my head that if I have pleural fluid in my lungs, with a negative culture for bacterial pneumonia, then what else could it be but lung metastasis? I've had a couple people tell me I have had viral pneumonia, but how can that cause pleural effusion that is still there, even after it has been drained once already? I'm sorry, I know I'm being negative, but I just find it difficult to be positive right now.
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please just wait until they do more tests to find out for sure. and my friend that had plueral effusion lived for several more years, but she was having other health problems, besides bc. maybe you can go talk to chrissyb, at the "not diagnosed with stage lV, but concerned" thread. you can find it under the search heading to the left of the page. i am not sure how to make a link, or i would. she is very good to talk to, and answers questions, and calms fears, everysingle day! she is a remarkable woman, i highly recommend her to you. sending a big hug to you, and i am so sorry that you are having to go through the mental anguish of this...
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Did they say that pleural fluid was in your lung? Usually, pleural effusions are in the space between your lungs and the pleural lining inside your chest,and that would be what is causing your pain. So, if it was fluid in your lung, it is probable not bc. I am not a doctor or anything though, so i don't know for certain. But in any case, it wouldn't be metastatic lung cancer, it would be metastatic breast cancer that went to your lung. Can you call your Dr, and talk with him about the results of the test?
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The fluid is not in the lung itself, it is in the pleural cavity. I met with the pulmonologist this past Thursday and he discussed the results of the test with me. He said they need to do another thoracentesis, since I still have the pleural effusion in my left lung. He said if the pathology results are not conclusive, then I will need to have a pleural biopsy. I have the thoracentesis scheduled for Monday. I am not looking forward to another pleural tap, but I am hoping the discomfort from the swelling in my lower left ribcage will go away if the fluid is drained again. I am just so tired of all of this and want to be able to live my life again. Just getting very depressed.
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i will pm you. i can't believe no- one else with experience about this has written. did you try the search function?
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I had another thoracentesis yesterday. It took longer than the first one nearly two weeks ago and was more painful this time. The radiologist had to move the tube around because he was having a hard time getting the fluid to drain steadily. He finally got the tube in better spot and was able to drain about 400 ml of fluid from my left lung. What is scary is the pleural fluid that was drained came out a pink color. The nurse told me not to get alarmed just yet, that the color may be due to trauma caused by the rooting around they had to do to get a good drain. I have a sore back and the lower left rib cage/lung hurts when I breathe more deeply. I hope I can feel better soon. I can breathe more deeply than before the procedure.
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Who, i am hoping that they got it all, and i am sure that you will heal up nicely from the trauma of it. sorry that you had to go through that again, i have heard from a lady i knew, who said it was very painful, but that the results are great! so i do hope you feel better, as the hours go by, and here to wishing you good luck, and they find no no no no cancer cells in the fluid. peace, kathe
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Whovian - I think that you should take Kathec's advice and head over to the If your not Stage IV but have questions thread. Here's the link: http://community.breastcancer.org/forum/8/topic/783594?page=69#post_3907548
The Stage IV women check in there and offer support to women who have concerns or are having tests for mets. There are women on these boards who have had lung mets who have gotten to NED. BC is such a beast and it sucks what you're going through. I hope that you have some medication to take the edge off while you're waiting for your results. There's nothing like a little Xanax to help getting through the tough days.
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Well, I got the result back from the pathology of the second thoracentesis procedure and it showed as negative for malignancy. The bad news is today I noticed my t-shirt was feeling damp. At first I thought it was perspiration, but I went to take off my shirt and there was milky yellow fluid coming out of my left side, towards the bottom of the breast where the expander is. I kept mopping up the fluid with tissues and it seems to be attempting to dry up, but there seems to be an open wound, as if it is trying to scab over. I don't know if this is making sense. I do have some redness and a couple of other scabs. I'm wondering if this was lymphatic fluid. I just got off the phone with the plastic surgeon and asked that, since his office is closed today, that I e-mail pictures of my left side for him to look at. I have taken my temperature and it is normal, so I don't think I have a flaming infection at this point. He is supposed to call me back later today.
I am getting very depressed over this whole reconstruction business. I am regretting having a reconstruction and am finding myself wishing I had just left well enough alone and taken my chances with the ticking time bomb boobs. Sorry, I know I have been a very negative person lately. I just wish things would start looking up and getting better. I'm starting to get scared of what else may happen next.
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Whovian - YAY!!!!!!!!!!!!!!!! HAPPY DANCE FOR NO MALIGNANCY!!!!!!!!!!
This is the most important thing, although I know that when you are going through stuff sometimes the 'good news' can get tempered by all the rest of it. There can for sure be times during the reconstruction process when we go - Really? ...... Hopefully you will catch a break here & this thing will turn out to be something that heals up quickly and is no big deal.
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Well, I had radiation eleven years ago on my left breast, so I did go in knowing that there was a chance the reconstruction w/expanders would not work out. The plastic surgeon wanted to try expanders/implants since my left breast had healed pretty well and he felt I had enough skin. I did have alloderm put in during surgery to help anchor the tissue expander/skin. The plastic surgeon called me back after looking at pictures I e-mailed to him and he wasn't sure what to make of the scabs he saw. I am going in to see him tomorrow afternoon so he can get a better look and determine if this is something he can work with, or if the reconstruction is failing. I sure wish I could catch a break. January and February have not been kind to me.
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Woohoo...no malignancy! Here's hoping the drainage issue is not anything serious and will resolve itself.
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I don't want to make February any worse, Whovian, but the fluid from both of my thoracenteses was negative for malignancy (hence the quote). The mets only showed up on the lung biopsy. I really hope you have better luck, but I would push for an explanation of why you had the pleural effusion in the first place. My doctors brushed me off with, "Sometimes we never find out." It was nine months before I got the right diagnosis.
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The pulmonologist that ordered the thoracentesis procedures wants to see me in three weeks to get another chest x-ray. He said if I am still having issues with breathing/pleural effusion, he will do the lung biopsy. I am going to see the plastic surgeon tomorrow and see what he has to say after he takes a look at my left breast. There is what appears to be a small open wound that is not bleeding, but is leaking a yellowish clear fluid. I keep wondering in the back of my mind if the pleural effusion is a side effect of attempting tissue expander-type reconstruction on skin that was radiated over a decade ago. I figure February will get even worse with the news I may very well likely have to have the expander removed and go with a lat or tram flap procedure. I'm not feeling optimistic.
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I had a tissue expander put in at the time of my mx and then turned out to need radiation because of poor margins (the tumors were close to the skin). I went ahead with a silicon implant, but now I'm having a problem with capsular contracture pulling the implant out of shape. The skin still looks good, but I'm having physical therapy to try to deal with the contracture without further surgery. I hope your upcoming appointments go well and you can get all this cleared up. Looking forward to Spring!
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carpe, just me here with a question: is ANY amount of pleural effusion normal? Or, is it something that should be watched closely, or examined further? thanks.
WHOV, i am so happy to hear that from you, made my night last night, and sent me off to slumber, with a smile for you...
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Well, I am fearing what I have is an infection and the expander will need to come out. The wound is still weeping clear fluid in small amounts. I have an appointment to see the plastic surgeon at 2:00 today. I left a message with the breast specialist/surgeon who did the mastectomy, but haven't heard back. I am now running a low grade fever around 99 degrees F and I'm feeling a bit queasy. I've also had a weird stinging feeling in the nipple of the left breast. I suspect I may need to have the expander out. I'm hoping the doctor will be able to give me high powered antibiotics before any surgery needs to be done, as my husband is out of town for work until Wednesday night. I was so looking forward to feeling better after the cold and the pleural effusion. I'm afraid I will never get close to normal again.
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The stinging is 'normal' - usually feels kind of like an electric shock. I'm really glad that you're seeing the PS today; don't get ahead of yourself - it may be that an antibiotic will clear it right up or that you don't have an infection -99 degrees is not that high, my temp goes to 99 on a pretty regular basis. You have had a lot going on, so it's not surprising that you'd be scared that you won't get back to normal, but try to take things one day at a time. Today you'll see the PS, that's good, that's a good thing to do for today.
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If it is an infection, does anyone know if the expanders have to come out the very next day, or would the doctor prescribe antibiotics for a few days, then have the expanders removed? I was wondering how much of the stinging sensation might be due to an infection, or the nerve damage that happens after a mastectomy surgery. It's so hard to tell when our bodies have already been cut into and been through so much. Right before he left, my husband said my left breast looked like it had an area that, to him as an untrained observer, like a bad sunburn that was trying to heal. It doesn't feel hot to the touch, it looks red, flakey and shiny.
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Yay - so glad to hear "just" an infection. Although you're a long way from this, and hopefully they'll get the reconstruction figured out, but just a personal note to say that flat aint so bad if it comes to that.
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Whovian05, it might be good to outline that red area with a pen to see if it grows. I was told to do that with a red area I had but it didn't grow. Cellulitis is the concern, which requires immediate antibiotics, sometimes intravenously. God bless and hang in there.
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Here's a brief word on pleural effusions:
Your body produces pleural fluid in small amounts to lubricate the surfaces of the pleura, the thin tissue that lines the chest cavity and surrounds the lungs. A pleural effusion is an abnormal, excessive collection of this fluid.
There are two different types:
- Transudative pleural effusions are caused by fluid leaking into the pleural space. This is caused by increased pressure in the blood vessels or a low blood protein count.Congestive heart failure is the most common cause.
- Exudative effusions are caused by blocked blood vessels or lymph vessels, inflammation, lung injury, and tumors.
So small amounts of fluid are normal and there are lots of causes. There are some arcane measurements on fluid that have to be made to determine if it's transudative or exudative, but if you have thorcentesis your doctor can tell you. Mine were each about a liter and I still have some fluid around the base of the left lung that shows up on scans, but it's loculated - divvied up into small pockets. Whovian could easily have an exudative effusion without having mets, with all that's going on with her expander. Jeannie's idea to outline the red area is a good one - I've used that on rashes.
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thank you, seize the day! i knew what pe was, but i did not know that much about it, so that was some really good information.
whovian, here is to hoping that everything is all righ with you, and that you are only maybe having to take anti-b's. hope you come home soon and let us all know! ((hug)).
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