Malignant pleural effusion

BarbDenise64

Hi everybody. I have just been told today I have this and am going to have the fluid drained on Thursday. I have never had this before and am really scared because I read that pleural effusion means you only have 4 to 6 months. Anybody out there who has had this longer ago who can reassure me . Help !!!

Bestbird

I am sorry you have received this diagnosis and understand how frightening it can be. That said, I know many people who had malignant pleural effusion and are doing well years later! When I was diagnosed with mbc, I had lung metastases, malignant pleural effusion and malignant pericardial effusion. I had an indwelling catheter placed, and after several weeks the pleural effusion dried up. I hope you have wonderful success with your treatment!

If you are interested in obtaining additional information, perhaps you may consider requesting a complimentary copy of the 120+ page booklet by visiting the top of this page:https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

ShazzaKelly

Barb I was diagnosed with it along with multiple lung and bone mets 3 years ago. I'm still well and truely here. The pleural effusion and lung mets resolved over time with treatment. I'm walking a half marathon in a month.

Good luck with your treatment. I hope you have a great response too.

Max_otto

Barb,
Rest assured that there are many of us with pleural and lung mets who are doing very well and are stable, I am one of them. On my pleural mets I had one procedure and have not needed any further draining. There are many options for you, I would recommend the link to bestbird's document as a reference. Take care.
Kathy

Longtermsurvivor

Barb, I was diagnosed with left pleural mets and an MPE in early 2008 and a lung tumor many years earlier.

The MPE resolved with Femara, then returned in 2011.

Suffice it to say, I'm still here!

Had the MPE drained a couple of times in early 2012 and a subsequent VATS pleuradesis procedure that used talc to seal the pleural lung linings together.

That seal still works and has prevented future MPE build up.

My cancer is very slow growing for many reasons - including my embrace of integrative and holistic methods.

Please don't ask me for my survival secrets - I don't share them because they're complex, irreproducible and quirky.

I don't want to offer medical advice, because I'm not a licensed professional (just a professional patient, which is another story).

Please keep seeking the best medical advice from professionals and patients. And don't believe everything you read on the Internet. There's always so much more to the story.

May you find the right therapies that will work against your cancer and for your ultimate well being!

warm healing wishes, Stephanie

BarbDenise64

Thanks to everybody for those messages. I feel easier now. I am having that drained tomorrow morning so hopefully I will feel a bit better than. Bar

Longtermsurvivor

Hi Barb,

If you get enough numbing agent before the big needle goes in, you should be more comfortable after the procedure.

Also ask them to take the fluid slowly, so you don't faint from sudden low blood pressure afterwards.

You'll be sitting on a hospital bed or table. And because it's your lung, not your belly, they'll come in behind your back.

Lean forward with a soft pillow supporting your head and upper torso.

Wishes for a successful procedure and relief!

warmly, Stephanie

BarbDenise64

Thanks Stephanie. I will follow that advice and thanks especially for the bit about the blood pressure. I have low blood pressure anyway so I probably would faint. I will try to post how it went when I get home. Barb

Longtermsurvivor

(((Barb)))

- Stephanie

rosetide

HI Barb,

I had over a liter on my left lung and 700 cc in my heart sac, fluid that is, cancer cells filled fluid. They pumped my lung twice. I will say it is rather weird lol! You won't feel anything because they numb you but when you start feeling something tell them to STOP! Tell them to stop pulling the fluid. They should do so, so that you can cough which hurts and feels weird, and is going to feel like you can't breath but you can...make sure you have someone with you that you can focus on them and let them tell you a nice story that takes you away from what is going on. It is really quick and it is very effective. I was on death's door. DX pleural effusion plus pericardial and bone mets too lol! I started treatment after surgery, my heart was going to implode from the fluid, had a tube sticking out of my chest for 3 days to drain that. Was in hospital for 14 days that run, that was in March 2016. After 2 treatments of taxotere, herceptin, perjeta, it dried up my fluids that remained! The treatment will dry up all the fluid almost immediatly! You will also be able to BREATH normal again, well your new normal lol! My doc looked at me and was doom and gloom when they figured out everything that was going on lol! But I put on my big girl pants and said let's get this under control! With God and support from family, and the treatment lol! I am not my normal self because I think that will never be again just because of the extent of my disease and the treatment that I will have to follow but I am alive and functioning. It is a new normal, I am alive that is all that matters lol! Don't let anyone tell you, you have only this much time left or whatever, everyone only has this moment...NOONE IS GUARANTEED ANY MORE THAN RIGHT NOW! Focus on right now, take one battle at a time, and know there are alot of people living with this new norm, and doing so with great grace and big smiles! Wishing you a successful procedure!

Rosetide:)

Phoebegal

I, too, was diagnosed with malignant pleural effusion. I had a pleuradesis on the left side and that worked just fine. When it appeared on the right side, I had a catheter put in. The amount of fluid that is draining is going down very quickly. That is a good thing.

I am still here. No doctor will tell you how much time you have left because no one knows how you will respond to treatment. But this is highly treatable and I wish you the best!

BarbDenise64

Thank you everybody for your support. It really helped . The proceedure went well. I couldn't have anybody with me cos my husband had to be with my autistic daughter and the coughing was scary but what got me much more was the oncology nurse coming down to talk about my new chemo supposedly but actually she decided to talk about palliative care and what did I want to do if this chemo didn't work and they couldn't do any more for me? I was ok til she came down . I have been trying really hard to be as positive as I can and she made me feel I am going to die any minute . Barb

Longtermsurvivor

Hi Barb,

First, to clarify for our members in the USA - what's called palliative care here differs substantially from the definition in UK, Australia and Canada.

Palliative care in the USA should be available to all with complex, chronic health conditions. It helps us deal with both disease symptoms and unwanted treatment effects. It's a both-and approach that allows patients to continue treatments and offers support for all the unpleasantness that comes with our health conditions.

In the other countries I mentioned, palliative care is synonymous with what is called hospice in the USA. It's sometimes called either-or care - the patient must choose between therapeutic treatments and comfort care only.

Barb, it sounds too early for the UK palliative care.

A diagnosis of pleural mets, while serious, doesn't by itself signal imminent death!

That would depend on a combination of factors like other medical conditions (co-morbidities), the extent & aggressiveness of your disease, your response to prior therapies and what therapies are available. This is a conversation to have with your oncologist, not a nurse.

Triple negative (TNBC) is a different beast than the hormone and HER2 positive metastatic breast cancers, but many do respond well to chemotherapy.

Here's a special topic for metastatic TNBC folks:

https://community.breastcancer.org/forum/8/topics/...

Barb, I'm in no way a medical professional and am not offering medical advice, but suggesting that you hang in there with the process and work more with your oncologist(s) than the palliative care nurse now.

And it's never to early to consider all your options and what you want for quality and quantity of life.

Just don't get railroaded.

Sorry to be so long-winded. I'm built that way.

(((Barb)), Stephanie

thinkpositive

How are you doing Barb? Hope you got good relief from the procedure and it is continuing.

I am scheduled to have this procedure tomorrow. I have heard that it helps only temporarily and the fluid eventually accumulates again. Hope that isn't the case!!

kt1966

Hi Barb & Thinkpositive,

I had a malignant pleural effusion just over a year ago. I had it drained, the process was pretty easy really- I was expecting worse. It did start accumulating again so I had pleurodesis done on the left about 2 weeks later. I have no problems with it now.

I hope your procedure goes well Thinkpositive. And I hope you're doing well too now Barb, and realise that that nurse was wrong and you do still have time, hope etc

BarbDenise64

Thanks for the messages and support. It has been a difficult couple of weeks because after the draining I have still been having breathlessness and when the doctor checked there was some more fluid there although she said not enough to drain. Also I started Eribulin on Wednesday which has had quite a lot of side effects and is making me feel pretty bad. I am hoping having had the first treatment it will settle down a bit and I am getting good support from my family but quite depressed at the moment. Barb

cive

Barb: I just had my second indwelling catheter removed for a bilateral pleural effusion. Yeah! If you continue to get fluid accumulating you may want to try the indwelling catheter. You drain often enough that you don't get short of breath and eventually you'll be able to have it removed. I feel a lot better now than I did before this all started.

Longtermsurvivor

Hi Barb and Cive,

Cive, so happy that the indwelling catheter relieved your effusion and caused your lung linings (pleura) to seal.

Not everyone is so lucky to have that happen and must continue with the draining.

I have had both the outpatient thoracentesis draining procedures and in April 2012 a VATS pleuradesis procedure that sealed my pleura together with talc. The VATS was a big surgery with a longish recovery period, but so worth it.

I wasn't so fortunate with the fluid in my belly, ascites, because it has continued for over 1 1/2 years. I have lived with an indwelling catheter in my belly for over a year now and believe it to be a helpful friend that will accompany me to the end.

Each person has a unique experience and I'm grateful that Cive, Rosetide and Bestbird were able to use and remove their pleural drains.

Barb, I continue to have breathlessness, probably from many causes, including the tumors along the pleural lining. It's not only the fluid that causes it.

You may want to do an overnight oxygen monitoring test to see whether your O2 levels are dropping low. If so, you can supplement with oxygen at night or when needed. The tanks, nasal cannulas and long tubes can be annoying, but less so than severe shortness of breath (SOB

Talk with a pulmonary specialist about your options for feeling breathing better.

You totally deserve it!!

warmest healing wishes, Stephanie

PS, when experiencing SOB, try fanning your face with a hand or mechanical fan. It can relieve air hunger.

Sister-Sister

Hello everyone, I'm currently in Karmanos, had the Talc done yesterday, the nurse have been giving me Morphine messing up my entire existence. I'm having them to stop that. I'm on 3 liters of oxygen and still draining. I'm forcing food down because I have no taste anymore.

Longtermsurvivor

Hi Sister-Sister,

I had the talc procedure done in Spring 2012. It took several weeks to recover, but really stopped the MPE from building up. There are still pleural tumors, but less fluid is a good thing!

Please be patient with your recovery process, because it will take time. You can experiment with the morphine and other pain meds, but will probably need some chemical help for at least a few days. Talk with your doctors and ask for a pain specialist or palliative care specialist, if you're not getting the help you need and deserve!

One trick I still engage for breathing difficulties is to hold first one ring finger, then the other. It relaxes me and is said to ease the lungs.

Also, your body will tell you when you're ready for food, for what and how much. This isn't time for the battle of self-wills. You'll need protein to heal from surgery, but right now with the anesthesia and morphine, your guts may need a rest. Be sure you don't get constipated, those drugs slow the guts down too.

Sister-sister, sending healing wishes, Stephanie

Sister-Sister

Hello Longtermsurvivor, hope everything is going good with you, I appreciated your response. Currently I'm out of the hospital but doing awful. I'm was sent home with a Catheter so I can drain myself. I'm Oxygen dependent but trying hard everyday. My Family keep telling me I need to Eat because I'm down to 130lbs, I've lost over 30lbs since October. Trying Hard to Survive. I will continue to Pray for us All

Sharjin

Anyone with malignant pleural effusion who can shed some light of hope? My mother is diagnosed with malignant pleural effusion, TNBC secondary recurrence, also with few nodes in the lungs which doctors termed as lymphangitis carcinomatosis. Her fluid around lung was drained a few times times and can’t remove the remaining through any procedure as fluid is trapped in 3different pockets. She still has shortness of breathing but better than before with Morphine and Oxygen at home. The prognosis looks so grim I am scared to death. She only had a month after being heavily treated with all chemo, surgery, 8cycles of Xeloda and radiation and found with the secondaries. Started Gem Carbo and had one treatment already for The secondary. Please give me a shout anyone.

Lisalooloo

Hi Sharjin - I'm sorry to hear about your mom. My Aunt has just been diagnosed with MPE too and it is so scary. I was encouraged reading the posts from 2016 regarding the many women who are thriving despite having been diagnosed with MPE. Positive thoughts, loving care for yourself and mom, and you will get through all this. You're not alone!

Sharjin

Thank you Lisaloo. Prayers for your aunt and you too!

Sadiesservant

Sharjah and Lisa,

I know it seems very scary as the shortness of breath from the MPE seems so serious but there are many of us doing very well after MPE. I was diagnosed with MBC due to a right pleural effusion in December 2017 and am doing extremely well. I had a PleurX Catheter to drain the lung for about six months until the fluid became loculated. But even without the Catheter, the right treatment will beat the cancer back and help to dry up the lung. I had some trouble finding the drug that worked for me but have continued to work full time. Now, I feel great.

Don’t give up hope. Things can turn around.

Sharjin

Sadie, Thanks a bunch for the reply. It makes me hopeful

Summer16

Hi

My mums breast cancer has come back in left lung with pleural effussion

She has had five weeks of taxol but it never worked and had progression

She has fluid drained and pleuredsis but it never worked so fluid is back and has low oxygen now

She has been in hosp for last theee months expect for about a week here and there

I’m so worried it is all getting the better of her now just need a different chemo to start on Wednesday and hope that will work I just don’t know if it is too late?

Any hope for mpe?

Xxx

Sadiesservant

Hi Summer16,

I’m so sorry to hear about your mother but there is definitely hope with MPE. I was diagnosed as stage IV with a right pleural effusion just over two years ago. At the beginning I had almost 3 litres drained from my lung! I also started with Taxol which also failed. I then went on to hormone treatment.

Your post doesn’t say if your mom is ER positive. My MO started me on Taxol because of the PE as chemotherapy is usually quicker but perhaps she should try hormone therapy? The other thing to ask about is a PleurX Catheter. I had one inserted and it made a huge difference as they could drain my lung every few days avoiding too much fluid. After awhile the lung dried up and I have not had trouble since.

Please don’t give up hope. Things can turn around quickly. It’s not an easy road but there are lots of treatment options.

Hugs. Pat.

Summer16

Thank you Pat

She is just seeming so I’ll at the min a lot of swelling and been in and out hospital for three months can’t control her pain she very sensitive struggling to breath tonight in hospital

They are inserting catheter tomorrow she is not allowed chemo until she gets stronger as would be life threatening

I just hope that she gets some strength to pull through it’s the leg swelling that is scary

Hers is weakly sensitive so when they knew it come bk switched her to tamoxifen but did nothing

Hoping catheter drains it and allows her to get strength for chemo

Thank you for replying really appreciate it xxx