Wheee! MBC! What a ride!

[Hotlantaphatz]

I have chronic breast cancer that has met to my pleural cavity. Just learned possible met to liver. Will find out soon! It’s like riding on a 🎢 roller coaster where you are strapped in and unable, in some cases to get off. There are ups that leave you hopeful like when your markers are stable or if there is shrinkage. But then there are these freaking lows that seem to go on forever. You scream 🙀 so loud but you feel like no one can hear you. The twist and jerking turns and are like med treatment changes - - with your eyes closed you patiently wait it out until the next turn. But, when the ride slows slightly for me that’s when I can smile 😊 again and feel like me again. People say I am strong but it sometimes doesn’t feel like it. So….. I will continue to hold on stay positive and supportive to others who are on this ride with me. I love that I can speak to you all like this and not be judged. MBC Chics! Stay strong X

[Bettybuckets]

You describe the ride so perfectly!

[Adele_Julia]

Amen !!

[Kruza]

It has been quite a ride, being free of it for 18 years and then, not so much, it came back. And so here I am again, but platforms like this help so much. I CAN LAUGH, CRY, VENT, and ENCOURAGE here. Thank you fellow warriors.

[Hotlantaphatz in reply to Kruza]

You are in the right place with us! Be strong!

[AutumnLove]

Amen!🙏🏼❤

[Tmbj]

So true as were all in this together and its so lovely to know we all understand the ups and downs of this mets as it sure is a whirlwind at times xx stay strong

[mariootsi in reply to Tmbj]

Yes

[Fiercefighter13]

So eloquently put into words! Thank you for sharing your thoughts, which so may of us share.

[Hotlantaphatz in reply to Fiercefighter13]

You are welcome Fiercefighter13! Love your handle!

[LibraryGeek]

Hopefully you will be riding up again very soon- keep the faith!

Jackie x

[jersey-jazz]

Dear one ---- We are all taking this ride with you and, sometimes, when we read posts like this, we say, "Yes, we are with you, girl!".

[PJBinMI]

A metster friend of mine described it as a roller coaster ride with a mask on and I hadn't thought of that for a long time! It sure is a good description of what our lives look like! I don't think I've ever heard a better analogy! I love the way you describe the ups and downs!

[Debbigbang]

Sooo very true !!! That is why scan anxiety is so real. All good and then the scans are scheduled, there is the nervousness about it all. Even though we have all been down the lows and high. You can't change that we are human on this earthly plane and the future is never known. I used to be quite the planner. Not anymore I live in the present moment. Everyday I wake up and can move and enjoy another day with gratitude and love.

Happy travels to all as we swerve the lows and excitement in the highs.

Ps: try not to worry about the organs. I have a big ol liver tumor, but now on meds that are working on healing it. Just another climb 🥰.

Deb ❤🙏

[Hotlantaphatz in reply to Debbigbang]

Debbigbang! Thank you for sharing. Yep this ride is real.

[love2golfwell]

Wow, what a perfect way to describe this journey we are on. I'm sorry you may have a met to the liver. If that is true, I'm praying that your doctor will have a treatment that will get rid of that and smooth out the ride for you. Sending you hugs, prayers and positive thoughts.

[TammyCross]

Marginally related question, which I was just about to post. I have "thickening of the pleural wall," which is deemed to be recurrence after NED. I originally had mbc in left pleura, and a bit of fluid, but that cleared up with first line of treatment.

Here is my question, which I recognize is kind of silly, but, you know, the anxiety and grasping at straws: my oncologist sometimes says I have cancer in my lungs; I correct her and say pleura because it has never been in my lungs. I have been trying to look up whether cancer in pleura wall is considered lung cancer. Fifty-fifty.

The reason it matters to me is silly: if the pleura is not the lung, then I have no major organ involvement. Better prognosis. The reason that is silly is that our paths are idiosyncratic; we don't know what we happen; it is what it is or will be. That is, whether pleura=lung is not individually prognostic. Just looking for a hopeful sign. So far so good, but running through lines of treatment: three in three years.

[Hotlantaphatz in reply to TammyCross]

I understand what you mean! I too had confusion about pleural effusion vs lung cancer.

[TammyCross in reply to Hotlantaphatz]

I think the effusion can have cancer cells, or just be a result of breast cancer -- in the lungs?

[Bonnie1942 in reply to TammyCross]

What does your scan show? Pleura is space between the 2 layers of lining around lungs not the lungs. Ask for a copy of the report. Fluid in pleura can have cancer cells--mine has , that is stage 4, for which there are several treatments. Wishing you the best.

[Hotlantaphatz in reply to Bonnie1942]

I checked the report. Yes stage 4; ibrance and faslodex have helped; so far no effusions.

[TammyCross in reply to Bonnie1942]

Oh, sorry you have cancer in the fluid.

I thought the pleura was the lining around the lung, and the pleural cavity was the space between the inner and outer pleura. I have no pleural effusion. I did when I was diagnosed 3 years ago, but not enough to address. It was gone quickly.

What I have that is new as of February scan is a "thickening" of the pleura -- the wall or lining -- specifically the report says: "nodular pleural thickening along anteromedial left upper pleura, highly suspicious for worsening metastatic disease at this location."

As I said originally, sometimes my oncologist calls this progression in lung, or says I originally had mets to lung, but it was always pleura. I don't want it to be lungs so I correct her, and she agrees.

😉

[pollymacchili]

Love your analogy! Great "perspective"! Made me re-think and re-name some of the stuff we all go thru. And made me "see" things from a new vantage point just like the glimpses we get on this roller coaster called life with MBS. Always been scared of roller coasters but on this one I try to keep my eyes open, stay strapped in with good advice, breathe and hang on to every day! Thanks for sharing your good strategy!

[Hotlantaphatz in reply to pollymacchili]

Stay strong! X

[mariootsi]

Stay strong on this Rollercoaster!

[13plus]

What a great metaphor with your ride details! We all wish for those long, high hill tops! Hang in there, we're here for you. I'm sure you will get through this too xx

[sancarlos]

I can’t tell you how much I appreciated your take on this. It is s good to hear from someone who understands the journey we are on.😍

[life8888]

You captured it perfectly ❤️

[kokopelli2017]

perfect analogy👍. love it! thank you for that😊

[Aprilfoolz1]

It's a surreal ride, you have described it well ! Hang in there, we are buckled in beside you, hope you get a clear answer soon .

[Hotlantaphatz in reply to Aprilfoolz1]

Thank you!!!

[debbiedo2063]

So well described. Feel like I’m whizzing around corners on it as we speak with new meds and awaiting radiotherapy. Can’t wait for that smoother straight ride.Take care

Debra xxx😍

[Hotlantaphatz in reply to debbiedo2063]

Debbie do just hold on- - the smooth ride is around the corner. 😊 keep me posted on how radiology treatment went

[debbiedo2063 in reply to Hotlantaphatz]

Will do, have a good day xxx😍

[NPmary]

An accurate metaphor for sure!🎢🎢🎢🎪🎢🎢🎢🎢🎪🎢🎢🎢

[Hotlantaphatz in reply to NPmary]

Yep that’s it! Hold on!