Bone mets 7 years later?!

newslady

Hi all --

I had Stage IIC IBC in 2008/2009. Lumpectomy, chemo, and radiation. Haven't had problems since, except for side effects from ongoing Tamoxifen. Today I had to be taken by ambulance to the hospital for the worst back pain I have ever felt. Truly worse than even childbirth or kidney stones! Doc says Xray showed a fracture in my back and other signs -- they are suspicious of mets.

Seriously, I thought mets usually happened within a year or two. I have had joint pain due to chemo for years so I am hoping against hope that it's osteo not cancer related. Is this pretty much a death sentence?

Also, why doesn't anybody come back and give their results after posting here? So frustrating.

JustJean

I'm sorry to hear what happened and hope that it's not mets.

My bone mets showed up ten years from the first diagnosis. I know people who had them show up later than that.

Hugs....

newslady

What happened? Do you have Stage IV?

ShetlandPony

Hi, newslady. What a scary day for you. Do you have something for the pain now? When do you see your oncologist or get a scan? Right now you don't know that it is bone mets. If it turns out to be so, know that with treatment many people with bone mets live with them for a long time. And when mets happen after many years, I think it can mean the cancer is not as aggressive as one that recurs sooner. Unfortunately, cancer can recur many years after initial treatment, especially with ER/PR positive. When I was diagnosed with mets, I was encouraged when I read the posts by others living with cancer. There is a bone mets thread here; you will have to decide if reading will make you feel better or worse. Waiting for more information is hard. You are not alone.

newslady

Thank you SO MUCH for taking the time to reply. The ER doc gave me a script for oxycodone 10/325 and I'm using a heating pad. He also gave me a shot of Dilaudid before I left and that seemed to work better than anything. Do you know if that comes in a tablet form or just injection? I will probably see my onco on Friday, or at least talk to him. I am so scared. I thought this was all behind me. I see your cancer recurred in 2014. How is your prognosis?

rleepac

It does come in a pill form.

Sorry you're going through this and I pray that it's not mets. But I've read many bios and mets are not a death sentence. Keep your chin up

ShetlandPony

So just to clarify, we often use the terms "metastatic" and "stage iv" interchangeably*, meaning the breast cancer has spread beyond the breast to other places such as bones or liver. Stage iv/Metastatic breast cancer is generally treatable, but not curable. We use a treatment for as long as we can, then we switch to another, and hope for even better treatments or a cure to become available. We try to focus on living well today, not on statistics, because we are individuals and not a number. One thing that is good to know, is that because treatment for stage iv/metastatic is typically ongoing, the chemo is often not as harsh as what is used for an earlier stage diagnosis. And in many cases, hormonal therapy or targeted therapy instead of chemo works wonders.

(*Technically, if a person starts out, say, stage i, and then later learns it has spread, their stage is now "stage i--metastatic". When this spread has already happened at initial diagnosis, it is called stage iv.)

I hope there is a different reason for your back problems. Because of your history they are going to look carefully. Please let us know how your appointment goes, if you feel up to it.

exbrnxgrl

news lady,

I hope you don't have bone mets, but, sadly bc mets respect no timeline. You can go 20+ years with no guarantee that you won't become metastatic

GG27

I was feeling great except for some back pain & some pain in tailbone that I thought was from sitting down on a rock too hard. My mets was found by mentioning to my surgeon that I had pain & he suggested a bone scan. I was pretty much told that once I hit 5 years that I should be clear but we now know that mets can come back after 20 years.

As others have said, we are not statistics. I feel good now, live my life as I always have & try not to think about what may or may not come. I have never asked for my prognosis, I don't want some number imbedding itself in my brain & becoming a self fulling prophesy. Please let us know what you find out, hoping it's not mets. GG

dlb823

newslady, be sure to let us know how your onc appointment goes today. It seems like the fracture alone would cause excruciating pain. Hoping and praying it wasn't due to mets, but if it is, at least you know and can start treatment that should make a world of difference. (((Hugs))) and I'll be watching for an update.

newslady

Thank you all for this support and great information.

My onco appt. is Monday, so I guess I am just stuck this weekend, waiting...

I didn't think the oxy would help, but it has and I am almost pain-free, which is amazing when you consider that I have broken bones in my spine. I have found that the key is to keep taking it every 6 hours, even without significant pain. Once it starts, I have found it much more difficult to resolve.

I will check back with you after my appt. but I'm expecting him to send me for bone scan, which is just more waiting.

GG27

Yes, the waiting is horrible. Keeping ahead of the pain is the key, not waiting til you've got it, which is what I usually do! Please let us know how your appt goes. GG

newslady

Well, the oncologist said he was "not at all" convinced that I had bone mets. He said it could be arthritis. He ordered bone scan, MRI and PET. I guess it will be another week or so before I have an answer.

newslady

Got the test results back today. I have two spots on my spine, one on my femur and one on the shoulder. Oncologist wants to start radiation yesterday. Does anyone know what's next? How do they monitor you for further mets and what can they do if it spreads elsewhere? Right now, it's not in any organs. Please let me know your experience. Dr. also said he'd switch me from tamoxifen to a different hormone drug.

dlb823

newslady, I'm so sorry about your mbc dx. I know it's a huge shock at first and very difficult to wrap your head around. But there are many of us here who are doing very well several years after our dx.

Of course I don't know you and I'm not a doctor, but I was a bit surprised that your onc is ready to radiate so quickly. In many cases, unless you have a particularly bad and painful spot or spots, an aromatase inhibitor (hormone drug) alone will make a big difference very quickly, and RT can be saved for later. When I was first dx'd, my onc was also very anxious to refer me to a rad onc, but by slowing down the process just a bit, I was able to decide that I really didn't think RT was in my best interest quite so quickly. Just something to think about, and if you are at all in doubt, sometimes a second opinion is an excellent idea.

In the meantime, please join us on the Bone Mets thread where you'll find a lot of great information and support. (((Hugs))), and hang in there! Deanna

3-16-2011

newslady

So sorry for your news. I have a RO who loves to radiate things quickly. I usually like to talk to my MO before making decisions. I have had 6 different bone mets in rib, spine, hip and pelvis. The spine made my treatment team most nervous and it was radiated quickly and before it caused pain.

You will get a treatment plan soon. My MO is the head of my treatment team and has carefully reviewed treatment each step of the way. He is very optimistic about managing this disease for years.

I wish you peace. Do check out the bone mets thred. There is so much wisdom and support there.

Mary

KBeee

newslady, your oncologist should be able to give you a plan for how he/she will monitor the bone mets. My mom's best friend had bone mets which were radiated right after chemo and that was 14 years ago. She's still my mom's best friend. I hope you will have the same success.

dtad

newslady....Im so sorry. I hate this disease. The tamoxifen obviously dd not work for you which makes me wonder again why they cannot tell if it is working until you are stage 4?! isn't there anyway we can tell if its being metabolized properly? Why can't hey at least test our hormone levels? I just don't get it? WE need to do better. Again Im so sorry. However there are many women living with some mets for years. Good luck and keep us posted....

ShetlandPony

Newslady, darn, I'm so sorry it's mets. I assume your new med will be an aromatase inhibitor (pill), although faslodex is another option. Plus lupron or zoladex to shut down ovaries if you are premenopausal. You will probably get some kind of scan every three months to start. Perhaps a bone scan to monitor bones and at some point a PET and/or CT to check the rest. Your onc should tell you which scans are best for you. Some oncs also check tumor markers (blood test). If you are going to have mets, bone only is good.

ShetlandPony

Dtad, as I understand it, bc can eventually develop resistance to any treatment. Sometimes it is resistant right from the beginning. Hopefully in the future we will have more individualized treatment that includes more genetic testing of the tumor along with an understanding of what treatments would likely be effective. Blood hormone levels won't tell you if the cancer is susceptible to tamoxifen. So it is not always a case of tamoxifen not being metabolized properly, and the test for that has gotten mixed reviews. I know, it's horrible. But the research shows that tamoxifen does work and prevent recurrence for many patients.

newslady

Thank you all again for the great info. The reason my oncologist wants to start radiation immediately is because I'm in a great deal of pain and can't work. You all give me reason to hope, you really do.

jensgotthis

so sorry newslady. I'm new to stage 4 bone mets (diagnosed out of the gate) and the Bone Mets thread had been incredibly helpful, inspiring and informative. Lots of good stories of people living full lives and a great place for questions. Come join us when you are ready. Until then, you have my best thoughts

HappyHammer

Newslady- am so sorry you are going through this but did want to mention- if you are taking pain meds- PLEASE remember to drink LOTS of fluids and also, take COLACE or something like it so you do not have digestive/constipation issues- pain meds can really cause havoc and once it starts is harder to deal with so try to stay ahead of it- high fiber/Metamucil and/or Colace every day while you are on the prescription pain meds!

ElenaM

all breast cancersurvivor worry about mets , I heard from TV in Europe spinal met treatment with cement injection to stop the growth and right the way relive the pain . Is any procedure like that practice in USA ?

dlb823

Elena, yes -- there are some women on the Bone Mets thread here who have had that procedure. Here's a description of it:

http://www.spine-health.com/treatment/back-surgery...