Afraid that I may have bone Mets

LenaT

Hi everyone, I am new to this forum.  I was diagnosed with triple negative breast cancer, stage 2 with no lymph node involvement back in 2007, and I am afraid that I may have developed a recurrence and that the cancer has gotten into my bones.  The only time I experience the pain is when I am bending over into the water to wash my hair.   And there has been times when I am just sitting down and will get this very sharp pain that hurts pretty badly.  The pain never lasts more than 5 minutes and then it goes away.  The pain has never lasted long enough for me to take medication, but my oncologist thinks that I could have bone mets.  And he has me set up to have a bone scan on Thursday.  I am very scared. 

I have no support and no one to talk to about my fears which is why I have come here to talk with other people who have gone through cancer like myself.  I was told by my doctor as well that sometimes bone mets won't cause any symptoms which is very scary.  I am very afraid.  Do you think that there is a possibility it could be bone mets?

Angela-R

Hi there Lena



Sorry that you are going through this distressing time.



I have no first hand knowledge of bone mets, but many other ladies on here do, so I am sure you will get some feedback soon.



In the meantime I wanted to tell you to take a deep breath. There are many things these pains could be. Becoming very distressed will not change what the scans may or may not find, but it will make it harder for you to cope with the process. If you can ask your doctor for a mild anti anxiety medication to help you get through, then please do so. Ativan is a useful one for me.



Please let us know how you get on, and a big hug to you.



Best wishes

Angela

LenaT

Thanks a lot Angelea for your advice

Denali

Lena, I'm so sorry to hear you have more worries during this already stressful time of year.  I don't have bone mets, but I'll share my story.  My back was hurting lots so my oncologist ordered an MRI of my spine.  I knew she was checking for bone mets so I was scared just like you.  It turned out that I had slipped discs which produced pain when I bent as well as acute pain sometimes when it pinched a nerve. 

Unfortunately, they also noticed a tumor on my kidney while looking at the spine.  It turned out that I had to have back surgery, but no bone mets.  The kidney cancer was a new primary, which produced NO symptoms.  I'd have never known I had it if it weren't for the back problems. 

So hang in there.  As we grow older there are all sorts of new aches and pains.  Please keep us posted on how you are.  We care.

Hugs,

Linda

Denali

Lena, I'm so sorry to hear you have more worries during this already stressful time of year.  I don't have bone mets, but I'll share my story.  My back was hurting lots so my oncologist ordered an MRI of my spine.  I knew she was checking for bone mets so I was scared just like you.  It turned out that I had slipped discs which produced pain when I bent as well as acute pain sometimes when it pinched a nerve. 

Unfortunately, they also noticed a tumor on my kidney while looking at the spine.  It turned out that I had to have back surgery, but no bone mets.  The kidney cancer was a new primary, which produced NO symptoms.  I'd have never known I had it if it weren't for the back problems. 

So hang in there.  As we grow older there are all sorts of new aches and pains.  Please keep us posted on how you are.  We care.

Hugs,

Linda

tibet

Lena T

Have you got the scan result yet? Hope all is fine. I heard, usually a bone mets would not be a short term pain but rather long lasting pain. But i don't know if it is true, only heard about it. I don't think your onc is a good one. He scares you without giving you a scan or evidence. Which hospital are you in? Is it a small center?

clariceak

I don't think I like your doctor's way of addressing your concerns.  I thought triple neg was most likely to reoccur during the first 3 years after dx and you are long past that.

Also, from what I have read, bone mets are more likely to worsen over time.  Your pain seems very specific to certain movements and it seems like there are a number of alternative explanations.  It's probably wise to have a scan, but I don't think you should assume that bone mets are the cause of your pain.  Please let us know how you are doing.

LenaT

Tibet, I had a bone scan on Thursday, December 20th and I have not gotten the results back yet. The hospital where I see my doctor is DMC Lahser in Michigan.  I did not have the test at the hospital where I see my doctor.  He instead wanted me go to another hospital here in Michigan to have the test because they do not perform bone scans at the hospital where I see my oncologist.  My doctor told me that after I have the test, to give the hospital a call to make an appointment with him so that he can give me the results.  I called to make the appointment, but the receptionist is saying that he does not have any appointments available for me to come in until January the 21st of next year. I tried to get an earlier appointment to get in to see him but was told by the person who schedules the appointments that he has no earlier appointments available. So I assume if something is wrong with the test, he will be giving me a call sooner.

LenaT

@Clariceak, my doctor said to me exactly what you stated at my last follow up appointment this past August when I hit the 5 year mark, that reoccurence is most likely to happen during the first 3 years.  And he also stated that since I have reached the 5 year mark, that any pain that I am having from now on is most likely due to something else that is not related to cancer. And that my chance of reoccurence was less than a 5% chance now since it has been 5 years.  But when I saw him on December 18th, he was saying something completely different.  Now he is saying that there is a possibility that the cancer could have returned.  He says that he would not be ordering the test for me if he didn't think that cancer could be in my bones.  I am trying to remain as strong as I can.

Alicethecat

Hi Lena

I had a bone scan that indicated a tiny bit of take-up of the radio tracer. A CT scan I had after that was clear.

My onc ordered another bone scan six months later.

It was completely normal - just natural repair of the bone!

Wishing for good things for you.

Alice

christina1961

Lena,

Can you call and get the results by phone?  You also have the right to go get a copy of the report yourself.  It is ridiculous to have to wait until almost the end of January to find out about this!  My oncologist lets me know right away, as soon as he knows something. A bone scan, from what I understand is very sensitive, and sometimes needs to be followed up by a CT scan if there is something questionable that shows up.  I'm sorry you are having to go through this waiting and anxiety.

Kay_G

Sorry about gather waiting as well. As Tom Petty says, the waiting is the hardest part. I hope you will hear a good report soon. (((Hugs))) to you.

LenaT

I don't know if he would give me the results over the phone.  To be truthfully honest, I am afraid to call and ask for the results and I am too afraid to go to the hospital to get them.  I am terrified of him giving me bad news.

CherylinOhio

Lena, you should go ahead and call the dr office. Sooner or later you will get the results, just get it over with, you will feel better.  That being said i am sure the results will be negative and what you are experiencing is anything but mets. I have been having achiness in my ribs and see my onc next Friday, waiting sucks!!  Please keep us all posted!!!  You will be fine!!

lovetodance1

Im a physical therapist, it looks like a disc problem in your low back. forward bending and sitting usually causes back pain often radiating into the buttocks or hamstrings or even entire leg. It could be a bulging or herniated disc. It is easy to panic now. We all do. But there are other things besides mets causing symptoms like this

CherylinOhio

I wonder how long it would take from a clean scan to pain from mets to bone?  I had a clean scan in July and now am having the rib achiness. Comes and goes, not really pain I can move about fine.  Lena, please keep us posted dear!!

LenaT

I'm sorry it took me such a long time to inform you guys here, but I received the results of my bone scan from my oncologist and my bone scan results are normal, thank God.  I'm so happy and feeling very relieved that there is no cancer there.

CherylinOhio

Yea Lena!! Congrats!!!

LenaT

Thanks Cherylin

CherylinOhio

Well my rib pain has gotten worse since december. Blood work has been fine last 2 checkups. Going to onc this Friday to see if its what I hope its not. I feel run down and kinda woozy a lot. Wth??

anamerty

2 ct scans for my puemonia showed a spot on my rib, posterior but on the same side as my bc. But the second one that was done just over 2 weeks after the first showed the area was a bit smaller. Had a bone scan in of Jan, showed nothing, but call from onco said he's still not convinced that it isn't bone mets, now he thinks it was there at the time of my dx in Aug, but I didn't have any scans so he can't tell if the spot was there already. I had been dx with stage 1 grade 3 tnbc 1.8 cm and 7 clean sentinal nodes they had no reason to have scans.Anyway he said he'd never seen this before and can only conclude that the chemo he gave me shrunck a bone met that nobody knew was there. I felt so relieved to hear that the bone scan was clear until he let me know what he thinks!!I am scheduled for a ct March 20 as a routine follow up to my 3 months post chemo,so they will look again at it.I have had no pain or discomfort from it at all.I was also told that the only real way to dx is a bone biopsy which they are not going to do until it is bigger because it is so small now that they won't get an accurate sample. Wondering if anybody could answer these questions for me.  *If back in Aug when I was dx if my dx was wrong and I was actually stage 4 is this where you'd count your survival days?I ask this because a lot of peolpe say they are 1,2 12,15 years living with mets,is this where it starts? * And is the prognosis worst for those of us with triple negative, or is it the same for anybody that bc has metastised?I mean because I am tn, can I live with mets for many years like some others or is it less likely for tn

sweetcorn

I am also afraid of bone mets, even though I only had Stage 1A.  I had an x-ray for stomach pain, and the report said they couldn't rule out Spine metastases.  Saw my Onc today for my Prolia/ 6months check up, and he has ordered a PET scan.  Intellectually, I do not believe it is anything, but still worried about the chance occurence.

Jane