Hello all,
I have MBC and am ER/PR+ Her2-. My latest PetScan said it was worrisome for malignant plural Effusion. Just had it drained the other day. The results are confusing. Is there a good reference that can help me interpret the results besides calling my onc? My protein fluid was 4.3 g/dL which online seems to indicate its Exudate effusion but how do I know if that's not because of my open breast tumor that is slightly infected. Sorry for being so ignorant ! Blessings Julia
How much did they drain from you? I had this done and the very best thing I ever did. I went from not being able to get up or put socks on to feeling almost normal afterwards. They drew out 1 lbs, (4 liters) of fluid which is all they will allow in first drain. It was awesome to see this stuff flow out of me! Then I lost another 11 lbs that week, total of 22 lbs. So I am thinner than I want to be for sure but the difference was well worth it and I will do it again if need be. The theory is that you do not want to be drained to early before treatment and it begins to kill your cancer or it will come back very quickly. So, I do hope that is not your case. I am 2 and a half months out since I had it drained and that is a good sign, so I will take what I can. First they put me on lasix which did nothing! Then they double dosed it and it did nothing. Then they put me on another fluid reducer and I have remained on that. This one does NOT lower your potassium which is of major concern.From what you say, yes this is cancer fluid, ascites.
Hi blms ! Wonderful to hear from you. Awesome news for you !!! They drained about 805 u/L or basically shy of 2 cups of fluid or .47 liters and that was all that was in there. How do we know if that fluid is cancerous? My body fluid cell count with differential was: Total Nucleated Cells, Fluid of 805 u/L, RBC fluid of 71 u/L, Clarity of fluid was Hazy, Color of Fluid was Yellow. My Platelets were 248 K/uL which is in the standard range. My Prothrombin Time was 12.3 seconds which was also in the standard range and INR was .93 in the standard range. However my Protein, Fluid was 4.3 g/dL which digging all over the internet is high with normal being 1-2 grams. All that means from what I found is that its Exudate. Sigh. My Neutrophilis Relative, Fluid was 3%, Lymphocytes Relative Fluid was 24% and Mono/Macro Relative Fluid was 73 percent all within the normal range. So I'm basically perplexed as to what this means. I was diagnosed with MBC in Nov of 2020 and have been on iBrance and Faslodex for the past almost 7months. They noticed the Pleural on the PetScan in Nov and again in May where the fluid increased but the cancer 'indicators' decreased. Do they test the fluid. I read that a Cytology exam of the cells comes from the fluid but I don't have that result. SO HAPPY to hear you lost 11 pounds and a total of 22 1bs. WOW great job xoxo Once its drained does it drain cancer cells? Appreciate any words of experience or wisdom ! xoxo
Probably cancerous as there are really only three ways to have excess pleural fluid, infection, congestive heart failure or cancer. The extudate is more telling than transudate for possible cancer. The higher the protein the more likely. There was so little fluid. Did they draw from your back as a thoreoscentsis? It sounds like they were drawing to check with cytology to determine the cause. I have had both done. The thoreoscentsis was not as pleasant as the the abdominal draw which was easy and painless. The one from back initially drained, for me, in fall of 2017, collapsed my lung, which was weird. But that was important to send to labs for FISH test to determine more about what was involved and that was needed before treatment was able to be perscribed. But, from what you are saying you already have results of FISH test, so I am confused why they would drain so little fluid (knowing that is all you may have), unless they were sending it for special evaluation. Yes, there are cancer cells in the fluid. With me, it was built up because I had small cancer cells in the lining of my left lung. They are like grains of sand which irritate the pleural fluid and it increases, therefore being able to spread the cancer to other organs, etc. in your abdomen, etc. I do not remember how much they drained initially with that procedure. But, when the cancer spread to my liver and bones, after about 2 years, then I really swelled up with fluid, the 22 lbs. I had to laugh when you said WOW good for you. actually, I only now weight 98 lbs. therefore I need to gain weight and am eating all day long to not go into wasting syndrome. I feel great on taxol weekly, so much better than Ibrance and am happy to do this as long as it lasts. There is so much we learn going through this disease. For me, I have been dealing with breast cancer since 5 years old watching all the women in my family get it and die. So, I have been learning as I go for many years--71 now--when did that happen!!
Oh my goodness, you're such a blessing ! Yes. I had a Ultrasound Guided Right Thoracentesis. Sitting on a table and having them put the needle in my back. I sure was worried they'd puncture the lung but the chest xray immediately afterwards confirmed all was good. That indeed was all the fluid I had there and to my knowledge I hope they are sending it for further analysis. I had the FISH test early in my diagnosis and also know I tested positive for the PIK3CA mutation which would be another line of defense if the Ibrance and Faslodex don't pan out which it appears it has the last 6 months showing a 31% reduction in tumors on the breast and in the pleural area. My apologies regarding joking about your weight loss. 2 years ago when I was initially diagnosed , I went a lumpectomy, through Chemo and Radiation and another surgery to remove the lymph nodes under my right arm pit. My cancer is on the right "boob". I could stand to lose a good 10 pounds (LOL !) I'm 57. Blessings that you've seen so many of your family members go through this. That's gut wrenching. However you're 71 and wise with wisdom and energy ! Heart hugs and I so kindly appreciate your responses. Heart balm to me. I live in Arizona. Where abouts are you located? xo
I love Arizona--Sedona in particular. My husband and I stayed there for a week a couple of years ago at Enchantment. We hiked, etc. For me the southwest is my real home in spirit. Don't apologize for anything--weight!! It was just funny to me. Let us keep in touch.
How ironic ! I live in Scottsdale but we frequent Sedona often and yes, my husband and I have also stayed at the Enchantment Resort ! Wonderful place and Sedona is lovely. I just wish it would be so crowded with tourists ! xoxo
We went in September 2019, it wasn't terribly crowded and then there is Mii Amo!! Holy mackerel !
We went in Oct 2019 and again this past November. Mii Amo is FABULOUS !!! Where are you located? xoxo
Im in Bethesda, MD., outside DC. I keep hoping to find other women in this area but no luck so far.
I was hoping to go this fall but the spa is under renovation, certain you know that, until next year! Well, something to look forward to
Hello lovely drained ladies - especially Adele Julia - I’m so pleased you’re feeling better. I had bilateral mastectomy in March 2020 and both ovaries out (I’m 47) so instant menopause been a bastard but doing well so far on ibrance, letrozole and monthly xgeva shots . I’m also a registered nurse (in Australia) and I commend everyone on this forum for the community that has been created and for the massive learning curve everyone has been on. I’d like to say that despite my training and over 15 years experience I’ve learnt much more about MBC since getting it (it’s throughout my entire skeleton - but no visceral involvement thank god).
Main thing I’m learning is to trust my team and try not to get too weighed down with the endless details. Everyone’s cancer is different - even when we’ve had similar surgeries and treatments.
Ascites is build up of fluid and can happen almost anywhere - lungs, abdo etc and I believe there are many causes (renal failure, heart failure, cancer, cirrhosis of liver etc - ) and I really Hope I’m not causing offence when I boldly say - don’t worry so much about the pathology and understanding everything.
I really believe ‘the universe is listening’ and expending your very precious energy on interpreting results and explanations that Dr can provide at review is not always the most energetically helpful activity one can do!!
How you feel - physically, emotionally and spiritually are the absolute best indicators of how you and your cancer are travelling - with new treatments all the time it’s almost impossible to predict how any of our ‘progression’ may unfold as time goes by.
A little info can be as dangerous as good comprehensive and sensible information can be reassuring and helpful.
I do hope you get where I’m coming from bc I’m truly not being judgey and preachy (at least I hope I’m not ) - as I too get all my results and check for things I don’t understand - but then I leave it be and try and be grateful that I’m doing ok.
I have no family hx of breast cancer - my sincere condolences and admiration to the lady who has been loosing loved ones since 5 years of age - but I do have a hx of 2 lumpectomies (2014 & 2019) and this last year has been Huge, with covid as well - the way my government is going there’ll be a cure for all cancers before I can leave my state let alone the country !!!
Anyway - big love to you and honour yourself and your body and yes that bastard called cancer - it’s yours and by the sounds you’re healing from the draining well and that’s the main thing right now.
Next week could be different - no one really knows but if you’d like further info there’s a lovely lady Sandra on this forum who has written. A fantastic resource of all things booby cancer - if I can find it again I’ll repost.
And bc I’m unsure - a much loved Sandra passed recently according to posts and if it is the author , or not , may she Rest In Peace and love to her loved ones who are grieving. And thanks for the excellent resource .
Thanks for making it to the end of a long post if you have and much love to all you brave beautiful women (and men) . Not much about MBC is fun but golly my gallows humour is improving 🙏😜💗.
Happy winter solstice to those down under and happy summer solstice to the rest.
Be well x
You are such a blessing ! Your advice and experience is sound and uplifting. Absolutely loved reading your reply. I tend to over analyze things which in the case of MBC just sends me down a rabbit hole 
Thank you for reminding me to trust my body, intuition and stay positive. Greetings from Arizona ! Julia Adele ! xoxoxo
Wow - Thankyou so much for your kind words . I’m smiling so big right now. Was a tad worried I had rambled on with unsolicited opinion that may cause upset and you’ve reminded me that being myself and sharing myself is the whole point!! Big big love 💗
Hugs back at you Nunky ! xoxo Julia Adele
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