New to site - malignant pleural effusion

Bestbird

Sadiesservant, it definitely comes as a shock to be diagnosed with malignant pleural effusion, and it is a good thing indeed that you've reached out.

As cive mentioned, sometimes an indwelling catheter or other type of approach can be used with malignant pleural effusion along with systemic therapy. If you haven't already done so, I'd suggest that you consider requesting a free copy of my MBC Guide which contains extensive information about mbc, lung mets, and treatments. Instructions for so doing are at the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

Also, at minimum, please have your effusion checked for ER, PR and HER2 status, as it may have changed since your original diagnosis. Also request a check for Androgen Receptor (AR) status because there are some interesting clinical trials for treating AR receptivity in a similar manner as today's hormonal therapy targets ER.

Also, please seek a second opinion regarding your treatment plan. It is always a good thing to make sure you're on the optimal path!

With best wishes!

Sadiesservant

Thank you both. I finally have an appointment with my oncologist next Friday. In the interim he has requested a number of tests (not sure which as the requisitions are being sent to me). Hopefully these combined with the results of the biopsy of the fluid will provide a clear picture of the nature of this beast.

I feel quite fortunate in that I have the same oncologist as I had with my original diagnosis. He is fabulous and the agency here uses a team approach to treating their patients. But I really appreciate the advice.

The big thing for me is that I now feel that I have broken free of that no man's land between diagnosis and developing a treatment plan. What a relief. I may actually get some sleep tonight! LOL

Thanks again

Grannax2

I am new to this site and I'm learning how much I don't know about my recent diagnosis of metastatic breast cancer.

I have mets to my lung, chest and liver. But, no one has called all the mets in the pleural space "malignant pleural effusion". Evidently, there are too many to count in that area. I have not had anyone mention a drain procedure. Is that only if there is a lot of fluid building up?

I had a liver biopsy in November that revealed the tumors to be ERPR+, HER2-, Ki67-27%. I just started Ibrance 11days ago and have been on Femara for about a month. This is the treatment recommended by MDAnderson but I have an MO in Dallas who is taking care of me.

I have had some shortness of breath and pain in my back( shoulder blade area). Sometimes my sats are in the low 90's but mostly they are normal.

My personal and family history is staggering, so I won't try to write it all down. I'll just tell you this is my fourth diagnosis of breast cancer in the past 24 years. Yes, I had all the appropriate treatments for all of them. I used to think that I've had so much experience with this disease, I should be a pro by now. Mets diagnosis to multiple organs has thrown me for a loop. It seems like the docs should be throwing the big guns at me to try to hit all these bad guys, but I'm only taking 2 pills each day and waiting for my next scan in April.

I've survived these 24 years by being informed. Reading and asking lots of questions has kept me alive. Seeking outside the box treatment was instrumental in my survival. This site is informative and a place to ask questions. I would like to find someone who has mets in the same areas that I have them, lung, pleural effusion, chest and liver. If anyone knows of someone like me, please let me know. Thanks.

MSL

Dear Grannax2

Welcome, and sorry you find yourself here. But this is a terrific community for these trying circumstances we are in.

You'll have noted that there are different threads on the site relating to different diagnoses, treatments and also personal things like raising kids, fighting the dark clouds and spirituality.

There'll be a number of threads of interest to you - the Ibrance one is very active, as is the liver mets. The lung mets thread is also active and has people who have experience with pleural mets.

I'm pretty new here too (diagnosed off the bat in Nov 16). Like you, we've all questioned the seemingly gentle approach to treatment but it is standard practice with ER/PR+ cancer to start with the hormonal treatments first (and those pills are powerful!) - it's a marathon not a sprint as someone in this community said to me.

In terms of informing yourself, get a free copy of Bestbird's guide to MBC - there's a thread up the top of this board which shows you how to email her. It's a vital read.

Also there are some very knowledgeable women on this site - Zarovka and Cure-ious for example are incredibly well informed and very generous with their advice and support. You'll also find inspiration and information from themany women who've lived a long time with this diagnosis and who've lived well.

Again welcome, MSL

Grannax2

bestbird how do I get a copy of your book?

MSL

it's the fourth topic down on this site - created by Bestbird andcalled how to request free copy of MBC guide

Bestbird

Grannax2, I am sorry to hear of what you have been going through, and am glad that you are seeking information. If you have malignant pleural effusion (which some people with lung mets have and others don't) it would normally show up in a CT scan.

To request a free copy of my MBC Guide, please follow the simple 2-steps below after reading the TERMS OF ACCEPTANCE: (MSL, thank you for recommending this to Grannax2!)

Step 1) Email your request to bestbird@hotmail.com

Step 2) In the Subject Line of your request, type in the words: MBC Document Request Terms Accepted by <your email address>

So, for example, if your email address is GotChocolate63@comcast.net then your Subject Line would read: MBC Document Request Terms Accepted by GotChocolate63@comcast.net

TERMS OF ACCEPTANCE:

The information in this document was gleaned from books, Internet sources that the author deems reliable, and other metastatic breast cancer (MBC) patients.

The author is a layperson with absolutely no medical training. She does not advocate any specific treatment(s) or type(s) of therapies listed herein, nor does she bear responsibility for any decisions and/or therapies undertaken by the reader as the result of reading this document. All readers are strongly advised to discuss potential new therapies with their doctor.

The reader agrees to hold the author blameless for any and all actions taken by the reader as the result of reviewing this document.

Grannax2

Thanks, Bestbird. I will email you to get your book. When I first read your posts, I thought you were a doctor. Now I understand you have researched on your own to become so knowledgeable. I find that amazing and admirable. After my first dx in 1992, I suddenly became a sponge trying to absorb every bit of information I could get my hands on. It was a challenge because I had no background to understand all the lingo, I was a hairdresser with less than 2 years of college.

But, there are no limits when the incentive is so personal. I had had no idea what was to come or how much I would need to be prepared. I was 44 and my doc decided on FAC x 6. After that he pronounced me cured. I believed him.

Because of my strong family history, I had genetic testing done in 1998. My family and I were happy to hear that it was negative. The doc said "your risk of getting it again is the same as any other women your age". That was a relief....but only for 2 years.

In 2000, I was shocked to be dx in my right breast (i had a mastectomy on left in 1992) and mets to my cervical spine!!! So, I actually became stage lV 16 years ago. It was only in C-3. I went to MDAnderson and entered a clinical trial. It was for patients who only had one location of mets. The protocol was to surgically remove the cancer, take taxotere x 6, followed by 5 years of tamoxifen. The goal....a cure. At that time there was no cure for mets to the bones. Since then, this seems to have become the standard of care. For me the rebuilding of my spine (c-3 corpectomy with strut and graft) was incredibly painful and included years of re hab. I believe it added many years to my life. I got to see my son and daughter get married. And most important I'm a grandmother to two grandchildren.

Meanwhile, life keeps happening. My mother died (metastatic breast cancer to lung, chest and brain) in 2003. My husband was dx with stage lV pancreatic cancer in 2007 and I was dx again in my right breast in 2009.

THIS can't be happening, I thought. So, I had a mastectomy with failed reconstruction ( my skin died) and chemotherapy and radiation. My husband and I went on "chemo dates" at the same cancer center. Finally, September 3, 2010, my husband died and I had my final radiation treatment. Yes, on the same day.

There's always a story. Sometimes real life is more bizarre than fiction.

But, my story is not finished. Hopefully, I'll have years to add stories to my story. I especially love being Granna to my two beautiful/ handsome grandchildren. They only live a few hours from me so I get to see them a lot. My son is finishing his training to be an anesthesiologist and may even move closer to me. My daughter and son in law also live close by.

Whew, that took longer than I intended......

wallaby715

I am a member of this forum with Stage IV MBC. Originally, I had a left pleural effusion, had a chest tube inserted for 5 months and had it removed (Yayyyy!). I'm posting here because I am not sure where else to post this but I have 2 cases of Bard Aspira Pleural Effusion drainage kits. All sealed in plastic, never been opened. The home health care company will not take them back and at $84 a piece, something in me will not let me throw these perfectly good kits in the trash. Does anyone know where I could donate them?

Thank you!

cive

You might check with your pulmonologist, mine was only too happy to receive my Pleurx kits.

Bestbird

Grannax, it is evident from your experience and perspective that you are an incredibly resilient and determined individual, and I am so sorry to hear of your husband's passing and your multiple bouts with bc and mbc. That said, it sounds as though there are many wonderful milestones to look forward to with your lovely grandchildren, and I wish you years and decades of happiness with them!

Grannax2

Thank you, Bestbird.. I hope so too.