Bone Mets Thread

50sgirl

Hi DevineMM,

My bone mets were officially found through CT and bone scans although a suspected lesion was seen on chest x-Ray.

Lynne

AmyQ

Mine were found on a bone scan. MO had ordered an MRI shortly after surgery but when I got there, the tech noted tissue expanders with metal. Said I couldn't have an MRI to switched to the bone scan which showed the extent of bone mets, of which there were many.

Amy

Bluefrog76

Divine: I was diagnosed stage IV de novo at 38 last summer. I had two spinal compression fractures. I was misdiagnosed (or really, just not diagnosed at all) for three months in excruciating pain and sent for 6 sessions of physical therapy. I just got worse and worse and the PT refused to treat me. I se an orthopedic surgeon on my own. It was the orthopedic surgeon who sensed what we were dealing with and ordered a full blood work up. While going to pre-admission testing for kyphoplasties, I was tachycardic. I was taken to the ER for a chest CT. Their words were "great news! Your lungs are clear...but you have this breast mass. Do you know about that?" And there it was.

50sgirl

Vicki, How was your first Zometa infusion? Are you feeling okay? Did you receive the results of your scan?

Cristina, I have never had a bone scan and CT scan on the same day. I hope you are feeling better. If your symptoms don't go away or get worse, it would be worth a call to your dr. Do you have a nurse line at your local hospital or doctor's officeor your insurance company? That might be an easy place to reach out to.

Lynne

exbrnxgrl

divine,

My bone met was found via PET scan

Bosco2602

I broke my collarbone. X-ray showed it was moth eaten. Bone scan and biopsy, mri and cat scan confirmed it was bc that had already spread to hip, spine, a few ribs and my collar bone

ABeautifulSunset

Divine, De Novo via PET first, followed by MRI, followed by bone biopsy.

Didn't do a biopsy on the progression last year. Just a PET, followed by MRI.

My doc doesn't use bone scans.

Stefanie

Lindalou

Mine were diagnosed after bone scan, MRI, x-rays and finally bone biopsy. I had pain in my back and ribs which led to the tests.

Today at my Zometa infusion, I sat next to man who looked like a Harley biker dude complete with Harley leather jacket, leather boots, piercings and tattoos everywhere and his wife looked like a tough biker momma. Well he had this BIG stuffed green frog he was holding on to for dear life, which he told me his daughter had given to him. He started to get teary. We ended up talking and laughing and had some tears too as we shared our experiences. His wife hugged me so hard when I left. He touched my heart and I don't think he knew it.

dixiebell

Divine I had bright red blood in my urine in December 2013 I went to the urologist and no bacteria or infection in he urine so they decided to do a CT scan of my pelvis for kidney stones and found 4cm tumor on L4-L5. I had a biopsy in January and sure enough I had a metastasis. It was the only one after other testing. I was symptom free and basically as everyone else blown away. I had an oncotype score of 5. The lowest my doctor had ever seen in 2011. So he was also surprised. I was on tamoxofin though and new studies show that it does not work in ILC that Als work better and my genome studies showed chemo has a 3% chance of working so the risk did not outweigh the benefits.

Thanks everyone else who has answered my questions. I appreciate it.

.

DivineMrsM

Thanks for all the responses. In 2011, after learning the great lump I had was malignant, the oncologist scheduled me for a bone scan as a baseline scan. When that came back suspicious, I was sent for aPET which diagnosed mets in the hip, rib and scapula.

I see some of you had a bone biopsy. The onc did not order a bone biopsy for me. Has this been the experience for some of you? Is a bone biopsy the usual protocol or does method ofdiagnosis differ from Doctor to Doctor?

AmyQ

Divine, I had a bone biopsy after the scan to confirm what they thought was mets, was in fact breast cancer. They only biopsied one area, my pelvis. So to answer your question, I would think it would be prudent to biopsy and not just assume.

Ellelou

Divine, since I had 10/13 positive nodes (mastectomy surgery) , I was sent for a CT scan. That showed possibly something on my liver. So then I was sent for a abdominal MRI which showed the liver to be clear but noticed stuff on my spine. Went for a spine MRI which showed lesions on some Ls and Ts. Sent for a bone biopsy of those and was then dx stage iv de novo. So I don't know if the bone biopsy is standard protocol but it is what happened to me (June 2015 in San Diego).

Anonymous

Divine- I had bone biopsy sorry that I didn't list that. Funny thing about my bone biopsy(2 of them) is that it came back triple neg both times. My original BC was ER/PR+ and my oncologist at that time wanted me to start a different protocol to the one I am on. With that being said, I went for a second opinion (Dana Farber) and they didn't buy into that it was not ER/PR + and had their pathologist comment. What is difficult sometimes with bone met biopsy is that the procedure done decalcifies the bone to get the antigenes and you can loose the ER/PR status in doing so. I did a protocol that is for ER/PR+ and so far I am doing well on it. If this protocol needs to be changed I was told by my MO that she would have another biopsy done but this time at Dana Farber. The other two were not.

Hope this helps.

GG27

Divine, I had a bone biopsy done in my sternum. As soon as I had a bone scan discovering bone mets, a biopsy was ordered. It seems to be protocol here to make sure that your mets are the same as original BC. cheers, dee

GG27

For all of us Canadians, we finally have Ibrance, now whether or not it will be funded by the provinces I don't know. I started a new post this morning with the link.... cheers, dee

https://community.breastcancer.org/forum/8/topics/844179?page=1#idx_1

Anonymous

Dee, that is great news!!!

50sgirl

Dee, WOOHOO! That is great news for people with MBC in Canada.

Lynne

LindaE54

Hi MrsD - nice to see you visiting this thread. I was dx'd stage V right out of the gate. Pain was my first symptom. Bone mets were found mostly on CT and bone scans, however the femur met didn't light up on bone scan. A PET scan discovered it. CT scan would have showed it, but it was from neck to pelvis only. Had only one PET scan when I went for a second opinion. More spinal mets were found 1 1/2 year after original dx.

No breast surgery. In fact the primary tumor in breast is so small, it didn't show up on mammo, US, CT or PET scan. Only an MRI picked it up.

A biopsy was done on femur when I had a rod inserted in April 2014. A biopsy was also done on axillary node met at dx and then further biopsies on breast when MRI showed the primary.

Dee - OMG! I have to look at your link and do some investigation work! I'm almost afraid to get my hopes too high.

exbrnxgrl

Go Ibrance for our Canadian friends!

I also had a bone biopsy to confirm it was breast cancer and hormone status

3-16-2011

Happy for additional choice for Canadian sisters.

Divine My mets were found by mri at the er. I went to er due to pain that turned out to be cracked pelvis due to mets. I followed up with MO who immediately scheduled biopsy to confirm dx and check hormone and her 2 status. I was 3 and a half years from original dx.

Bluefrog76

Divine: my orthopedic surgeon did a bone biopsy while performing kyphoplasties on my spinal fractures. Because it was triple positive BC, he spared me from having a breast biopsy. It was really forward thinking on his part and before I ever saw an oncologist.

txmom

Hi Everyone, Bluefrog love the hair!!!!  Divine, my mets were diagnosed by a bone scan.  My MO had a bone biopsy to confirm bc and type.  Good thing she did because my met and breast lump were different.  One being HER2- and the met HER2 neutral.  It changed the course of treatment for me.  If she hadn't tested it, I would have not been given the Cleopatra Protocol which is the gold standard for triple positive.  She also retested my original biopsy sample which was initially diagnosed as HER2- but came back HER2+ when retested.  Hope this isn't confusing.  Hello to everyone.  Hope my Northern friends are thawing out.  Wishing everyone good scans and pain free days.  XO

AnimalCrackers

Divine,

I was diagnosed Stage IV de novo at age 52 in 2014.

My bone mets were discovered by the radiologist reading the results of my breast MRI. He/she identified an abnormality on my sternum and I was sent for a bone scan. Lesions were found on my sternum, spine, pelvis and rib. After the bone scan I had a biopsy of my hip bone and that confirmed the metastases. I was also sent for CT scans of chest, pelvis and abdomen and some of the bone mets showed up on the ct scans as well. I also had a baseline MRI on my spine after diagnosis. I'll probably be having another one of those at the end of this year which will be 2.5 years out from diagnoses.

Cathy

dlb823

Divine, I guess my presentation for bone mets was pretty typical -- starting with a severe illness I couldn't shake, so went to my local onc to see if something was going on besides the pleurisy and severe bronchitis other docs had repeatedly dx'd via x-rays. Lab work led to a CT and dx of extensive bone mets. My UCLA onc was planning to do a bone biopsy and had ordered an MRI to ascertain the best biopsy site. But before that could take place, I ended up in the ER w/a fractured femur and pelvis, and the pathology from my hip/femur surgery confirmed ER+ bc mets.

I've been trying to keep up reading here, but just haven't had time or been in a posting mood. Then the thread will take off and suddenly I'm several pages behind and it's even harder to jump in.

Cristina, in addition to drinking copious amounts of water, you can further detox from scan contrast solutions with Epsom Salt baths. I do them for several days after a scan -- with or without the addition of baking soda, which is also recommended by some. Like you, I get really sick and nauseous feeling after a scan, and this seems to help so much. I go into UCLA for my scans (3+ hrs. away), and after one absolutely miserable return drive, we now stay over a night and I even bring Epsom salts with me to start detoxing right away. Fingers crossed and a prayer said that your results are great this time!

Dee, how are you feeling? What day is your scan?

Patty, great to see you're home and feeling so much better! YaY!!!!!

Amy, wonderful news on another grandchild on the way! I'm thrilled for you and your family!

Had my Faslodex and Xgeva shots yesterday. Round #10. Blood counts fairly strong. Ibrance SEs have gotten better over time for me, but still waiting on TM results from yesterday's blood draw.

Hugs to all, and a special hello to the new faces here -- Sarah, Dixiebell, Robbin, and anyone else I may have missed. Deanna

dixiebell

Can anyone comment on what they have been told is the best biophosphate for Osteoblastic (sclerotic) lesions.

dlb823

Dixiebell, research shows significant healing of bone mets with all of the bone building drugs. I'm not 100% sure, but I don't think the research differentiates between lytic and blastic lesions. I'm on Xgeva, which is the newest generation med -- a once a month shot that seems easier tolerated that some women report experiencing with infused bisphosphonates.

Anonymous

Dixie I have osteolytic and have a monthly xgeva shot. MO said I could do Xgeva or Zometa.

dixiebell

Thank you Lovesmaltese. I was on Xgeva for 2 years but my doctor will not extend, I am going to talk to him about it again.

jensgotthis

I feel incredibly lucky that my first bone scan only picked up two spots: one in my acetabulum which we're radiating now and another on my Illiac crest which we'll talk about radiating today. It didn't pick up the one in my arm but the rad Onc said Petscan trumps bone scan and we're treating anyway. This was my first bone scan and I was worried that it might show quite a bit more.

My tumor markers are slightly up from 44 to 58. I'm betting the TMz are not a reiable tool for me. I was surprised though that they went up since I've just completed 6 rounds of chemo and should have less cancer than my first result. But I've read a bit that markers can go up during treatment. I'm also a little curious how much effect the chemo had on the bone sites - must not have done much since the hip site still showed up. I wish I had some measurement info on how big the lesions are. And of course wish the biopsy had given me receptor type info...but I'm still grateful for how good everything looks in the overall scheme of things

dixiebell

jengotthis that is great.