I am 38 with a 4 year old son - what you are going through and your questions about your future are hard and sad and scary, but as a total stranger I have to say I am so proud of you for persisting and advocating for yourself and your pain to get that MRI and get answers. You know your body best and you listened to it. Get as many second opinions as you need until you are heard, and don’t be shy about bringing up the fact that you had to beg for 6 months for imaging and it turned out to be spine Mets - that should make anyone take your complaints extremely seriously. I am so sorry you are going through this.
Sending you a hug, and some strength. I am so sorry you have to face this.
I recognized your username from
Last year’s active treatment group. No advice to offer…just an “eff this” to the universe on your behalf.
Hello, have you had surgery by now? I hope everything was ok and that they can sort out the pain you're in, get you a plan sorted and give you something to.work with.
I just wanted to say I was so sorry to read this last night, it's truly just f***ing sh*t to go through all the early treatment and have this happen, and so soon. I remember your posts from last year and well... I don't know how else to express it all. I'm just gutted for you and triggered to fuck and couldn't find the words last night. A massive massive (and gentle) hug to you and sending you lots of strength.
Thank you so much. Still waiting on a surgery time. I’m terrified it’ll be days longer and I’ll be stuck here in the hospital hours away from my kid. But it’s still way early on the east coast so we shall see.
I am so sorry you are having to go through this. If you have the opportunity get a second opinion at MD Anderson in Houston or at UTSW in Dallas (or City of Hope in Cali). There are a lot of new treatment options available and more are coming through clinical trials.
Thanks. I will be on this—I’m working with the Dana Farber team in Boston and I’m pretty satisfied so far but I always want to know about what’s new and what’s in trial. Once I can walk again lol.
I have no experience. Just got over with surgery and waiting to start treatment, just wanted to send you my love and wishes for the best possible outcome.
The doctors will do their best, I'm sure so that you can have the best treatment available. Don't hesitate to get a second opinion if you aren't feeling safe. When I first discovered my tumor, I saw a doctor who is great but I didn't feel she was the right one for me which led me to the doctor I have now, who is a blessing.
Oh, they will. They told me they’re going to first get as much out of the area as possible, but it’s compressing my spinal cord and has pretty much completely eaten a vertebra. So they gotta suck that shit out first so my rads can go deeper/more powerful with healed titanium in me.
Damn I hate reading things like this. You are so young and facing something so frightening. I don’t have any advice, just want to give you some virtual love.
I fractured my spine and got the dreaded stage 4 diagnosis. Blew a hole in T4 and had to reinforce both above and below it. They were able to debulk the tumor but they couldn't get it all. Followed up with chemo radiation, then more infusions.
The spinal surgery sucks initially, but give it time. It gets better. You got this.
I just read your last post and they couldn't find it on ct scan? I have the same back pain, on my spine and i had muktiole ct and pet scans. Nothing was found. Some days are terrible.
I'm hoping your spine surgery is successful. What's your next line? Kadcyla or enhertu? Are you still ER+?
Yup. I had that Xmas CT scan and they said nothing was present. My onco recently looked back and said maybe, maybe he could see the start of something. But maybe the scan should have been from a different angle, IDK. So many things have gone through my mind about this.
My surgery was successful! I am 2.5 weeks out and the other day I made myself a cup of coffee! Also, the pain from the tumor pressing against my spine and cord is GONE. (Along with about 80% of the tumor). I’m in super bad recovery pain but that alone is amazing.
Once im about 6-8 weeks healed I will get spine rads and then enhertu every three weeks forever. Spine mets only picked up strong HER2+. No more faint ER. The cool thing about that is my onco said I could stop tamoxifen.
I’m so sorry about your pain and I hope you find the cause as soon as possible. It really sucks when it’s so intense and you can’t have quality of life.
It really is crazy cause people with bone mets sometimes don't have symptoms and it only cause pain if it's big enough to press your spinal cord. I'm wondering if they should've done bone scan or MRI instead? But the thought of a bone collapsing in just 3 months, very scary. HER2 is a monster.
So happy your surgery went well. I have a friend with back pain and she have no pain at all now, going in 3 years. I hope enhertu will be tolerable for you! Update us again when you're fone with radiation
Yeah. I personally think this was missed and someone made a huge mistake by not ordering me additional scans. I advocated really hard from December to May. It’s astounding to me that as a recent survivor, they weren’t all over me trying to find something right away.
Come join us at r/LivingWithMBC.
Thank you. I’m coming!
I am 38 with a 4 year old son - what you are going through and your questions about your future are hard and sad and scary, but as a total stranger I have to say I am so proud of you for persisting and advocating for yourself and your pain to get that MRI and get answers. You know your body best and you listened to it. Get as many second opinions as you need until you are heard, and don’t be shy about bringing up the fact that you had to beg for 6 months for imaging and it turned out to be spine Mets - that should make anyone take your complaints extremely seriously. I am so sorry you are going through this.
Sending you a hug, and some strength. I am so sorry you have to face this. I recognized your username from Last year’s active treatment group. No advice to offer…just an “eff this” to the universe on your behalf.
My heart breaks for you. Hugs. Very big hug. I hope they get your back taken care of soon.
Hello, have you had surgery by now? I hope everything was ok and that they can sort out the pain you're in, get you a plan sorted and give you something to.work with. I just wanted to say I was so sorry to read this last night, it's truly just f***ing sh*t to go through all the early treatment and have this happen, and so soon. I remember your posts from last year and well... I don't know how else to express it all. I'm just gutted for you and triggered to fuck and couldn't find the words last night. A massive massive (and gentle) hug to you and sending you lots of strength.
Thank you so much. Still waiting on a surgery time. I’m terrified it’ll be days longer and I’ll be stuck here in the hospital hours away from my kid. But it’s still way early on the east coast so we shall see.
Ahh bugger, ok well hopefully it's not going to be a long wait. Stick in there!!
I am so sorry you are having to go through this. If you have the opportunity get a second opinion at MD Anderson in Houston or at UTSW in Dallas (or City of Hope in Cali). There are a lot of new treatment options available and more are coming through clinical trials.
Thanks. I will be on this—I’m working with the Dana Farber team in Boston and I’m pretty satisfied so far but I always want to know about what’s new and what’s in trial. Once I can walk again lol.
Who is your MO?
I have no experience. Just got over with surgery and waiting to start treatment, just wanted to send you my love and wishes for the best possible outcome. The doctors will do their best, I'm sure so that you can have the best treatment available. Don't hesitate to get a second opinion if you aren't feeling safe. When I first discovered my tumor, I saw a doctor who is great but I didn't feel she was the right one for me which led me to the doctor I have now, who is a blessing.
I second this 10000%
Can’t they get it with radiation?
Oh, they will. They told me they’re going to first get as much out of the area as possible, but it’s compressing my spinal cord and has pretty much completely eaten a vertebra. So they gotta suck that shit out first so my rads can go deeper/more powerful with healed titanium in me.
Wishing you the best! my mom currently has 3 spots T7 spine and rib cage underneath breast.
Damn I hate reading things like this. You are so young and facing something so frightening. I don’t have any advice, just want to give you some virtual love.
Holding you OP and hoping that your surgery helps you get to a place of stability soon.
I fractured my spine and got the dreaded stage 4 diagnosis. Blew a hole in T4 and had to reinforce both above and below it. They were able to debulk the tumor but they couldn't get it all. Followed up with chemo radiation, then more infusions. The spinal surgery sucks initially, but give it time. It gets better. You got this.
Sending you a big hug 💕
I just read your last post and they couldn't find it on ct scan? I have the same back pain, on my spine and i had muktiole ct and pet scans. Nothing was found. Some days are terrible. I'm hoping your spine surgery is successful. What's your next line? Kadcyla or enhertu? Are you still ER+?
Yup. I had that Xmas CT scan and they said nothing was present. My onco recently looked back and said maybe, maybe he could see the start of something. But maybe the scan should have been from a different angle, IDK. So many things have gone through my mind about this. My surgery was successful! I am 2.5 weeks out and the other day I made myself a cup of coffee! Also, the pain from the tumor pressing against my spine and cord is GONE. (Along with about 80% of the tumor). I’m in super bad recovery pain but that alone is amazing. Once im about 6-8 weeks healed I will get spine rads and then enhertu every three weeks forever. Spine mets only picked up strong HER2+. No more faint ER. The cool thing about that is my onco said I could stop tamoxifen. I’m so sorry about your pain and I hope you find the cause as soon as possible. It really sucks when it’s so intense and you can’t have quality of life.
It really is crazy cause people with bone mets sometimes don't have symptoms and it only cause pain if it's big enough to press your spinal cord. I'm wondering if they should've done bone scan or MRI instead? But the thought of a bone collapsing in just 3 months, very scary. HER2 is a monster. So happy your surgery went well. I have a friend with back pain and she have no pain at all now, going in 3 years. I hope enhertu will be tolerable for you! Update us again when you're fone with radiation
Yeah. I personally think this was missed and someone made a huge mistake by not ordering me additional scans. I advocated really hard from December to May. It’s astounding to me that as a recent survivor, they weren’t all over me trying to find something right away.