New to site - malignant pleural effusion

I had a mastectomy in 1998, clear nodes, followed by AC and Tamoxifen. In 2007 the cancer came back in my chestwall, again chemo, rad, and AI until Feb 2010. Mets to right lung, clinical trial until Dec 2010. Now pleural effusions, and bone mets. Twice now I had a thoracentesis done, one in Feb, and one in March. I'm on chemo again plus Xgeva, and Faslodex. My QOL is pretty good. After the Thoracentesis my breathing was fine, and my upper back pain also was much better. Did you have a Thoracentesis done? It's not fun, but you feel a lot better afterwards. Unfortunately with this desease you never totally out of the woods. As you can read, I had ned for many years after my first dx in 1998. - Hugs, Helmie -

I was diagnosed with bilateral malignant pleural effusions about 5 weeks ago.  I have had a total of 5 thoracentesis procedures done in that time.  I am on Ixempra and Herceptin.  I don't have enough experience yet obviously to help.  I posted something at diagnosis and a few people commented on having had pleural effusions.  I will find my thread and bump it for you. 

 Sorry, I know how much this sucks.  I recurred after only about 9 months of NED.

Hugs,

Lori

I had a pleural effusion on diagnosis but have had no need to treat specifically. I have asthma so wouldn't be able to say exactly what my SOB was caused by - the effusion, the extremely low hemoglobin, or the asthma. I have since had several transfusions to get my hgb back up, rads to tibia and humorous for pain, AC, Abraxane (just started cycle 3 of 4 scheduled) for my BC and been put on Singulair to control my asthma.



Breathing is better but couldn't say what helped (probably a combo of all). Getting my first scans since treatment started this week. I know I've had good results on palpable tumors/axillary nodes but keeping fingers crossed for effusion, unradiated bone, lung and liver mets.



Sorry you had to join us. Hope they can get your effusion under control to help your breathing soon.

I had a pleural effusion when I got my Stage IV diagnosis in 1998.  After it was drained the fluid continued to build up so my onc suggested I have a Denver catheter put in the pleural space.  I was able to drain the fluid at home.  After 2 weeks the fluid build up stopped, I had the catheter taken out and I haven't had a problem with it since.  

I have nothing to offer in the way of advice, just wanted to welcome to THE club that no one wants to join. Sorry you've had to join us, but we're a pretty good bunch of guys and gals that will be here for you whenever you need a shoulder to cry on or someone to Bi**h at when you're in a funk.

Stop by often we always have something going on.

Peace and Love,

Edie

My mother was diagnosed in May 2012 with malignant pleural effusion after her third recurrence of breast cancer. She is 84 years old, and has been through IV chemo in 2011, and Xeloda (oral pill) in 2012.  Both were horribly difficult and took a toll on her body.  And obviously didn't work.  She was hospitalized four times as a result of the side effects of Xeloda this year (dehydration due to no appetite at all, etc.) and has decided to do no more chemo. Now the pleural effusions are requiring draining of both lungs every week or so.  Her onc and primary doctor both do not suggest doing any of the procedures to relieve the buildup of fluid.  She's on Coumadin because of a clot in her lower leg, so has to stop that when she gets short of breath in order to have the fluid drained. She is just so tired of it all.  We are contacting hospice for their support services this week.

 Just wondering if anyone else is at this stage: having such frequent drainings of the lungs, no more chemo, etc. It seems like we're just waiting it out till her body gives out.  So hard.  

It is a huge shock to be diagnosed with Stage IV, and I imagine after 15 years you thought you were done with this for good.  Our stories are very similar - my initial diagnosis of Stage II bc was in 1993, and then I was diagnosed in Oct. 2011 with malignant pleural effusion as well as numerous tumors on the lung. I got the tumors biopsied and learned that it's the same type of bc that I initially had.  After that, they inserted a pleurx catheter which I had for 6 weeks until the fluid stopped draining (you are completely mobile with it and it can be drained at home).  As per Becky's note, the Aspira may be better but it wasn't available at the time.  After the plerux catheter was removed I haven't had a need to drain any fluid (knock on wood).  I've been on an aromatase inhibitor since Oct. since I'm postmenopausal and ER+. 

Please ensure that they "type" the pleural effusion to check your ER, PR and Her2 status as it may have changed since your original diagnosis.  It is absolutely necessary in order to determine your treatment possibilities.

The good news is that the long interval between your original diagnosis and recurrence is a favorable prognostic indicator!

I hope things move smoothly and quickly for you!

I echo what MaryGLA said - my pleural effusion was also there at first diagnosis - but was very small and didn't change over course of first two hormonal treatments (2 years and 2 month period).  After 10 months on tamoxifen, it started to grow, found with PET scan - I didn't have any symptoms (no SOB, breathing difficulties), just shoulder pain (which I didn't know was connected).  I also had lots of stress at work (probably elevating my blood pressure, which might also have explained the buildup.  Had it drained early June 11, fluid tested positive for cancer.  Was off work all summer and fluid didn't come back, until August when I started back to work, and in one week (very stressful one), it was back, and they placed the catheter the following week.  I had the pleurx for one month - it really messed with the skin on my back under the adhesive (but I am allergic to latex).  However, worked great getting rid of fluid and there was just a small residual amount of fluid on my next PET scan (taken the same day they pulled the tube out).  I started on taxol early November 11, and my last four PET scans have shown that that residual fluid is now gone, so evidently the taxol took care of that residual fluid. 

I have some articles showing statistics regarding the Pleurx catheter and in them, there are some data showing that a in  very high percentage of cases, the use of the catheter results in the pocket where the fluid collects sealing itself off because of the continual draining, and as a result, the pleural effusion doesn't come back.  If you are interested in the articles, please send me private message with your email address and I will send them to you.

Becky

My pleural effusions probably should have led to my initial diagnosis of breast cancer, but for whatever reason the fluid taken out in the thoracenteses (July and August 2010) was negative for everything, and the doctors I saw insisted they couldn't be related to the lump in my breast that didn't show up on mammogram or ultrasound (May 2010).  It wasn't until changes in my breast convinced them to do another mammogram that biopsies in the breast and lung showed stage iv bc.  The plan had been to do a pleuradesis (the talc bit) to stop accumulation and put in drains, but when they got into the lung, the pleura had already adhered to the lung wall, and it wasn't necessary.  I had SOB and back pain during the summer and fall of 2010, but since March of 2011 I've been mostly stable on Arimidex.  Even Social Security backdated my disability to September 2010, so I can say I've been at stage iv for at least two years and I'm still responding to my first medication (I hope).  My next scan is September 5 and even though I feel fine and have only minor SE's, It's pretty nervewracking.  It was great to see Debbie and Stefanie's posts as long-term survivors with lung mets.  Reading this board shows how different we can be with the same dx, but I feel much more hopeful hearing from folks who have lived with this so long.

Janet 

Bestbird, wow we are so much alike.  I was first dx in 1995.  I now have lung mets with a plural effusion that showed same bc er+/pr+ hr- I had my first recurrence in 2001 after going off tom.  I had a 13 yr run on femara!  then the PE   they were able to drain most of it but I have some still in there.  I am afraid it will come back.  He said if it does I may need a cathider.  That makes me really nervous.  I am on the injections now.  I hope they work.  How are you doing with things and was the catheter hard to deal with?

I was first diagnosed with BC in 1999 and have just been diagnosed ( 6-13) with recurrent stage IV BC with mets to 90% of my left lung which caused recurrent pleural effusions.  I've recovered from a thoroscopy with PleurX tube and TALC procedure which so far has prevented recurrent pleural effusions.  My tube was removed after 2 weeks.  I'm starting the monthly hormone shots this week, and am not sure which one I'll receive yet.  I still have about a 7-8 level plaural pain and my MD has started me on pain control meds (One Fentnal patch every 3 days).   

I would like to know if the pain gets better and has anyone been able to return to work.  I'm a nurse so my job is physically demanding and I am exposed to infectious people.  How has this affected others and daily daily lives.  

Hi all,

A good friend of mine has breast cancer that spread to the plural lining of the lung.  Will she have shortness of breath and pain, even if the fluid has been removed?  Most of the time she's fine, but she has moments when she feels really short of breath.

Should her cancer doctor know the answer to that question?  Should she have to go to a lung doctor to find out all about the cancer in the lung?

Thanks,

Laina 

Rose19, I was diagnosed with mbc in 2011 with malignant pleural and pericardial effusion and lung mets. Since my cancer was ER+ I was placed on hormonal therapy, which thankfully eliminated the effusion. Although there is no cure for mbc, it is possible to survive for years, and for some, even decades.

Best wishes to you!

Hi Sadiesservant-

We just wanted to offer a warm welcome to our community. We're sorry that you find yourself here, especially after so long. This is a very supportive place, and we hope you find comfort here among others in your shoes.

The Mods