My name is Billie Jo. I newly dx with mammary carcinoma metastases to my spine and R rib. I was two years out NED after a R masectomy,recons

[Blongoria]

Km newly dx and feel lost and alone. I'm wondering if anyone has metstastes in the spine??

[missa13]

Hi Billie Jo-- I'm sorry you're feeling so alone. Please know that you aren't! We are here to help you process this and support you.

There are definitely women on here with metastases to the spine (if you search "spine" in the box on the top right you can find all the posts and replies where this is mentioned.)

[Mariannem]

Billie Jo, you are definitely not alone. There are a lot of us living with MBC. I have mets to my spine along with several other sites including liver and lung. MBC patients with bone only disease tend to do well and have longer survival. I did have radiation to my thoracic spine due to increasing pain. Radiation therapy was quite effective in decreasing the pain. It does take a while to adjust to having MBC. You will eventually find your new norm in life.

[daf10]

Hi Billie jo You are definitely not alone alone There are many online metastatic communities that you can turn to for support Living in the USA SHARE offers two tele-conference support groups which you can take part in and find the added support that you might need

[Fpmeehan in reply to daf10]

The telephone conference support groups have been wonderful. I look forward to the phone call discussions. We bring up our concerns, fears, joys, symptoms, treatments so that we can share, learn and support each other. A psychotherapist is also on the calls which is very helpful because she shares her knowledge, and experience about our disease and also provides us with information, compassion and understanding. Please consider joining us sometime.

[SMHoward]

Yes mine is in my spine head right rib spot on liver

[Hidden]

I have been 7 years with metastasis to bone and liver. Bone started in hip, now throughout spine and ribs (where I have healed fractures). I change treatments whenever there is progression. Now on Zometa every 3-4 months and on my 12th infusion of Taxotere which has reduced the tumors. You are not alone or without options.

[Rhwright12]

Hi Billie Jo!

I have MBC with mets to the bones. Started treatment at the end of July. I'm currently getting Zometa for the bone cancer. It was pretty wide spread. 2 Skull, leg, 2spine, hip. I originally also had 6 Perjetta treatments. Just finished 3 weeks ago. This treatment was very effective for me as I'm now in remission. Be encouraged that your treatments can work. Also make sure you ask questions. Sometimes they forget you haven't been in biology class for years! lol

-Sending prayers!

[Suzanne351]

I have BC metastasized to my spine. I am 3 1/2 years in. Am estrogen positive. Go to physical therapy and have had lumbar fusion. Been a roller coaster but I continued teaching up until June. What treatment are you on?

[Partia]

I had it in the spine and some of it went away but not all. It is also in my sternum bones and in my pelvis and sacrum. Nice to meet you.

[Ibelong]

My bone mets are in the pelvis, ribs, and the vertebrae. I have no soft tissue spinal involvement only in the bone.

I am currently on Ibrance, Letrozole and a monthly Xgeva injection. Hoping that this helps stop the cancer in its tracks no more growing, no more spreading, hopefully shrinking and dissapearing. It's been almost 6 months sine I began. I will have a pet/ct in Jan 2017. Hoping to see the improvement that wasn't seen last time on the scan.

Previously I did chemo that nearly killed me. I had to stop one cycle in and wait months before being placed on another chemo that I tolerated well enough to finish afterwe found the right dose. I was having severe side effects. This was for mets found in my lung and chest lymphnodes, where a mass also resided squishing my esophagus. The chemo did its job. Then it was discovered that the ongoing discomfort and now severe pain was from mets to the bone. We did MRI to the shoulder and hip where I was feeling the pain after bone scan revealed some hotspots in the shoulder. They did not show in the hip but the MRI revealed the truth. I had radiation to those areas. Then after 3 months of being on current medication the Pet/CT showed more spots we didn't see before in the vertebrae. Doesn't mean meds not working. Just that it wasn't seen before and bone mets are just tough.

I was diagnosed in 2007 at the get go with metastatic breast cancer. In 2015 the lung and chest were effected by mets before mid year when we found the mets in other bone areas. I was originally diagnosed as Her 2-, ER/PR +, late stage IV, grade 2 -3 with mets in the pelvis and ribs at 36. I am happy to still be here. 2017 is coming and I am hoping for a great new year.

[Kats3 in reply to Ibelong]

Hi Ibelong,

Was wondering how you're doing? Did you have your pet/ct scan yet? You've been through a lot and I admire your strong attitude. I have mets to bones too. Hope 2017 will be a good one for you.

Kats3

[Ibelong in reply to Kats3]

Hello again. Thank you for asking. I hope you don't think I was ignoring you. I went out to have some fun. My husband and I took a mini vacation to Las Vegas for 4 nights. We returned this Monday. I stayed off as much social media as I could. It was a great respite. Especially spa day. Ohhh how I loved that. Instead of gambling I had a message and used every amenity I could. I stayed for hours. Then took a soak at the hotel after coctails with friends. Any way. We returned Monday to go over the scans and the last months worth of blood testing results with the doc. We received good news. Many areas are stable with no growth. The exception was that the hip and shoulder they lit up again. My oncologist is not convinced it's the same cancer growing that was radiated in July 2016. He thinks it might be a bone reaction from the radiation. He is having my radiologist review the scans and compare to where the radiation was to see if this is the case. If I don't hear from him we are good. In as far as all cancer is stable. If we hear from him it's because what lit up was beyound the radiation and is growing cancer. For now at least my tumor markers are still gowing down and the bone is not showing any blood test markers to cause concern providing proof that Xgeva injections are working and it's more probable that it's a reaction to the radiation and nothing more. Which is good as my WBC and Neutraphil counts remain low but stable. I did come home with a cold. So this week I was just lazy and drank my fluids and rested.

I hope that you have had some fun or at least down time from thinking about your condition.

Does your mets cause pain or discomfort? I hope not. Mine flare up I guess I can say at night. I bought a heated mattress cover. It helps so much.

What are you doing for yourself to give yourself a bit of a respite. You deserve it. Even if it's just indulging in something you like to eat. As long as it's just for you.

[Fpmeehan in reply to Ibelong]

I hope you have a great 2017 year, too! You've been through so much and it reminds me of my journey when I was diagnosed with bone mets in my spine and hips. In August 2014, I underwent two surgeries to remove my L10 and L12 vertebraea Radiation was given to my spine T4 and hips. My right hip had a hole from the radiation that required surgery to secure it with pins. I'm HER positive with lobular carcinoma

Herceptin and Tykerb got rid of the cancer in four months! Hallelujah!!! Now I'm just taking letrosole and my tumor marker is at 3. There's hope and so much treatment available.

[Ibelong in reply to Fpmeehan]

WOW I had no idea they could remove your vertebrae. How incredible. What did they replace the bone with? Did they 3D print them. How sci-fi. Or have I read to far into it. Tell me more, please.

[Chellebelle1]

Hi Billie Jo, i also have been diagnosed with MBC with mets to my bones.....you are definitely not alone. When i asked which bones all my one said was all my bones have been affected......once you get used to the idea that this is something that you will have to LIVE with, it becomes just a way of LIFE.....good luck and hang tough

[Jan_Schnabel1 in reply to Chellebelle1]

Exact same for me...all over the bones...just diagnosed in October of 2016 and still trying to get my arms around my "new norm." I've never liked the name Norm.

[rsparks984]

Hello, Yes, That would be me. Originally diagnosed in January 2010, Metastasized and went undiagnosed until my T9 vertabrae collapsed - OUCH! and landed me in the emergency room Dec 30, 2012. From T6-L3 and on my hip and a rib. Very painful. I'm here to tell you to have hope. I'm still here going strong. Have you ad any treatment to your spine (radiation?)

[Warrior08]

Hi Billy Jo I'm sending you positive hope.I was diagnosed 2a left bresst removed,camme back in bones,hip 2 vertebras,ribs right shoulder was on letrozole in 2013,now showing activity in 2 of the old tumors now trying aromasin. Its going to be a roller coaster ride eith its ups and downs but be positive and fight.

Best of luck

Warrior08