Maybe it is an impossible question, but does anyone understand whether there is a common progression for MBC? For example, after bone MBC the most common next MBC location is X? or if the liver is the first site, the most common next MBC is A.
Torturing myself these days, waiting for the other shoe to drop
Also, stats are driving me crazy because everyone says, that if you only have bone MBC, you will live longer, but other stats say that bone is the most common site, so shouldn't we all be living longer? The math is not working for me.
Sorry, no happy thoughts from me tonight. Thank you!
Written by
Winter-Flowers
To view profiles and participate in discussions please or .
We are all different. Hence the progression is different. It takes it's own pathway. So does the treatment. Depends also on your location and oncologist. You do have a say in the treatment though. Don't be afraid to speak up and ask questions even if you are worried about repeating yourself.
BRAIN METS SUCESSFULLY TREATED WITH STEREOTACTIC RADIOTHERAPY
LUNG, LIVER, MEDIASTINAL METS CAN NO LONGER BE SEEN. THANKS TO KADCYLA EVERY 3 WEEKS.
We cannot use data from pre 2018 id say as so much has changed on the treatment front for the better.
My advice would be to enjoy life doing the things that make you happy knowing that if progression comes there are lots of treatments out there and many more i the pipeline
I had one bone met. Dr said most likely would be bone next, but who REALLY knows. We also were told make it to five years and all clear. So just roll on!
And this is where any anger I've had came from. Oncologist says take your AI, stay clear for 5 years and all will be great. I think it's unfair not to add - but it may recur 5, 10, even 20 years down the road. I know some might worry unnecessarily but at least it wouldn't be a blast from left field. Just me - I would have liked to know.
Also, I was stupidly not clear that it would not return to the breast, so when I had back and hip pain (tumor was in my hip) MAYBE I should have said something. Also, they are not sure if this single tumor was not there seven year ago when we did the original surgery as there was never a full body scan. SOOOO many questions.
I had full body scans for 5 years after my stage 3 breast cancer (breast and a few local lymph nodes). All clear at 5 years and was told the chance of reoccurrance was low. Then, 10 years after the original diagnosis bone pain led to the discovery of many bone mets. A small probability isn't the same as no probability ☹. Now just trying, with only some success, to move on day to day without deep anxiety.
So did they ever mention...look out for bone pain...that could be something? Way I see it, I did not go to med school, they did....soooo I could be clueless....they needed to provide guidance on what could be happening.
I agree with you, I am not sure if doctors don't have the time or don't want to deal with add'l questions. That is why you have to ask, and research as much as you can on your own sadly
I am reading this, and a lightbulb is going off. No, my onc never said anything about watching for bone pain when I went into remission in 2017. (Which is what marked my recurrence in 2021). He was only concerned if I had any recent falls. My logic tells me that cancer must seek out the weakest area in your body to take hold, and a fresh injury may make the best inroad for that. My understanding is the bloodwork run (CA 27-29 or whatever) picks up the amount of cancer cells floating around in your system, so it would make sense that injury, illness or trauma to an area would increase bloodflow/concentration of immune functions as your body repairs.
However, I’m not an MD.
And this doesn’t explain why it lesions also appeared in my liver (again picked up in 2021). I’m not a drinker, but my father passed in 2015 with advanced primary liver cancer. So- for me a spike in routine bloodwork tipped us off to explore and order the scans which picked everything up a few weeks later. Note: And I did not fall, had a illness, or surgery but just felt really really tired and achy. So likely my immune system was trying to fight a flood of cancer reproduction that became rampant in my body. It’s a rabbit hole to try and figure out the ‘why’ but I chalk it up to my BRCA dx.
So yes, waiting for the other shoe to fall is what we are all doing. But I know that I can temporarily interrupt this ‘shoe falling’ pull with treatments which are always improving/extending my prospects.
Thank goodness for this group of warriors. You all keep me sane. Xoxo
You know it is interesting when we read these posts, because I keep nodding my head, yes, I get what they are feeling and writing. People whom do not know what it is like, have no clue to what we think, feel and worry about. I am lucky to have a great doc. I do my research and when we meet, we are on the same page. It helps a lot. Remember -they are indeed practicing on us. He or she has a medical practice, well that just means they set up their own school!
My advice is to not worry about what you can’t control. If it is any comfort, my breast cancer journey started when I was 35. Ten years later I had it in my sternum.25 years later it reappeared in my spine and hips. I’ve learned to just appreciate every day I can get out of bed! I know that Ibrance has made life a little more difficult, but I also know it’s keeping me alive so I thank it every day!
Beware of those stats! They absolutely do not apply to individuals but rather to groups of ten thousand or more! At the first mbc conference I attended, in 2005, there was a woman there who had had mbc for 30 years! Wow, was that hope giving! And that was before alot of the meds they have now. We really do each have our own journey with this crappy cancer! Yeah, bone mets alone are not usually fatal but none of us knows how long it'll be before mets turn up some other place, Lungs, liver and brain are most common. I have lobular bc and cancer cells were found in tissue blocking my left ureter (tube between kidney and bladder) It was removed and Ive not had other problems there. We have never known just when or how we will die. Having mbc kinda rubs our noses in the whole death/dying thing. Sigh! this isnt easy to live with but we can make it better or worse for ourselves by how we think of it. Im 76 now and somehow death seems more reasonable than when I was first diagnosed the month of my 58th birthday.
l totally get it. I finally had progression after 5 years and ot was more bone , changed my treatment to just faslodex.
From my reading the most common sites for mets are bone, lungs, liver. Most people who get brain mets are triple negative. Mets can certainly show up elsewhere but those are the most common. The aggravation of all the stats can really get to us. Each of us ade unique and also alike in many ways. Whatever happens next l am hoping for your very best and trusting in your ability to live with it in whatever way is best for you.
I have no answers. I do not know if there is a common progression for MBC. From everything I've read and listened to, every person is different with different reaction/outcome.
I just wanted to say I'm praying for you.
Please don't "wait for the other shoe to drop". Look for a positive mindset. I don't want to sound flip or insensitive, but please try to live your life. To the fullest that you can in light of these circumstances. Right now, at this moment it's all we have.
May God bless you and keep you. May His face shine upon you, and be gracious to you.
Hi, I am coming up to 3 years in January. I was in the exact same stop that u are in for the first Year & a half but now thanks to this group I am a little less anxious. There is a lot of good news & yr future may be longer than u think. I am taking lots of trips (&did take a lot of trips) & for the most part I am healthy. Just keep everything in yr planning a bit shorter time span.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Progression of my MBC 
what’s next - fulvestrant failed 
Progression.
progression whilst on fulvestant and palbocilib
Not sure about next step
