Help Needed...14 year survivor with possible bone mets

kmikola2

Hi all...I'm in shock. Dx'd with Stage IIB cancer in 1997 and have been cancer free ever since. Just in the last few months, started having some pain in my upper back. Nothing horrible, just sort of "awareness". Had x-rays and it showed bone erosion, lesions consistent with mets. WHAT???? I have an appointment with oncologist next week. What can I expect?

missrenee

Try to take a deep breath
So far, it sounds as if you have just had x-rays. I have just been diagnosed with bone mets (only out of treatment 18 months). It started with back pain in one vertebra (T-12). Before any confirmation was made for me, I had a total body bone scan, CT of the entire spine, MRI, PET scan and bone biopsy of T-12. Turns out, T-12 is fully involved and there are "numerous foci throughout my spine and pelvis." The bone biopsy showed that the breast cancer had returned in my bones--same cancer as before.

Since my cancer is 95-98% estrogen positive (diagnosed as Stage 3C), I had been on Arimidex for over a year, which apparently did not work or stopped working. My first new course of treatment was 14 radiation treatments to T-12, which I have finished.

Today, I started my new therapy with my oncologist. I am getting injections of Faslodex (estrogen suppressant) and an IV infusion of Zometa to strengthen my bones. In 3 months, I will be re-scanned to see if this is working or if I need to try a different chemo.

Please don't jump to conclusions--you need to have the scans and possibly a bone biopsy to confirm any type of metastasis. I know the waiting game is the absolute worst--your mind has a way of running away with bad thoughts. I'm glad your appointment is next week.

Take care and please let us know what is happening.

Hugs, Renee

kmikola2

missrenee said:

Try to take a deep breath
So far, it sounds as if you have just had x-rays. I have just been diagnosed with bone mets (only out of treatment 18 months). It started with back pain in one vertebra (T-12). Before any confirmation was made for me, I had a total body bone scan, CT of the entire spine, MRI, PET scan and bone biopsy of T-12. Turns out, T-12 is fully involved and there are "numerous foci throughout my spine and pelvis." The bone biopsy showed that the breast cancer had returned in my bones--same cancer as before.

Since my cancer is 95-98% estrogen positive (diagnosed as Stage 3C), I had been on Arimidex for over a year, which apparently did not work or stopped working. My first new course of treatment was 14 radiation treatments to T-12, which I have finished.

Today, I started my new therapy with my oncologist. I am getting injections of Faslodex (estrogen suppressant) and an IV infusion of Zometa to strengthen my bones. In 3 months, I will be re-scanned to see if this is working or if I need to try a different chemo.

Please don't jump to conclusions--you need to have the scans and possibly a bone biopsy to confirm any type of metastasis. I know the waiting game is the absolute worst--your mind has a way of running away with bad thoughts. I'm glad your appointment is next week.

Take care and please let us know what is happening.

Hugs, Renee

Thank you Renee...thank you
Thank you Renee...thank you SO MUCH for responding. Yes, my mind is running wild. I was 14+ years out, and sort of didn't think about this stuff anymore. But now, WHAM! When I went through this in 1997, I had complete mastectomy, radiation, chemo, tamoxifen for 5 years, femara for 5 years. About 6 years ago, I had my other breast removed (after my sister was dx), and had a complete hysterectomy. Thought I was pretty much done with this.

To hear that the x-ray says "consistent with mets", I was blown away. My cancer was very estrogen positive, but I thought between the medications and complete hysterectomy, that was handled. How can this be possible? I lost my Mom to lung cancer 14 months ago, and I can't bear to tell my 87 year old father about this. I sort of can't breath right now.

I will keep you informed. I'm pretty much hoping for the best, but expecting the worse.

Thanks again,

Kay

kmikola2

kmikola2 said:

Thank you Renee...thank you
Thank you Renee...thank you SO MUCH for responding. Yes, my mind is running wild. I was 14+ years out, and sort of didn't think about this stuff anymore. But now, WHAM! When I went through this in 1997, I had complete mastectomy, radiation, chemo, tamoxifen for 5 years, femara for 5 years. About 6 years ago, I had my other breast removed (after my sister was dx), and had a complete hysterectomy. Thought I was pretty much done with this.

To hear that the x-ray says "consistent with mets", I was blown away. My cancer was very estrogen positive, but I thought between the medications and complete hysterectomy, that was handled. How can this be possible? I lost my Mom to lung cancer 14 months ago, and I can't bear to tell my 87 year old father about this. I sort of can't breath right now.

I will keep you informed. I'm pretty much hoping for the best, but expecting the worse.

Thanks again,

Kay

Had a horrible
Had a horrible weekend...cried most of the time. My appointment is Wednesday, and I know whats coming. One half of me wants to go and get the "news" over with, the other wants to hide in bed. Sorry to be such a baby...my sister says I'm the strongest person she's ever met, but sure doesn't feel like it right now.

grams2jc

kmikola2 said:

Had a horrible
Had a horrible weekend...cried most of the time. My appointment is Wednesday, and I know whats coming. One half of me wants to go and get the "news" over with, the other wants to hide in bed. Sorry to be such a baby...my sister says I'm the strongest person she's ever met, but sure doesn't feel like it right now.

Waiting stinks!
Sorry your weekend was ruined and sorry you are still waiting. Even strong people get blindsided sometimes.

Take care, thinking of you and sending out prayers,

Jennifer

Double Whammy

grams2jc said:

Waiting stinks!
Sorry your weekend was ruined and sorry you are still waiting. Even strong people get blindsided sometimes.

Take care, thinking of you and sending out prayers,

Jennifer

I doubt you'll know much on Wednesday
if all you've had is an x-ray. The onc will probably order some scans and/or other testing. This whole scenario sucks for you. I know the waiting is the worst. I will add my prayers, hopes and well wishes to the rest. Please let us know what happens on Wednesday.

Suzanne

kmikola2

Double Whammy said:

I doubt you'll know much on Wednesday
if all you've had is an x-ray. The onc will probably order some scans and/or other testing. This whole scenario sucks for you. I know the waiting is the worst. I will add my prayers, hopes and well wishes to the rest. Please let us know what happens on Wednesday.

Suzanne

Thank you for the kind
Thank you for the kind thoughts...kind of needed to hear it from people who are in the trenches...my wonderful family (husband, sister, son), say all the right things, but they really don't understand the terror. I've had the surgeries, chemo, no hair, radiation, etc....after 14 years, really didn't think I would be going here again.

kmikola2

kmikola2 said:

Thank you for the kind
Thank you for the kind thoughts...kind of needed to hear it from people who are in the trenches...my wonderful family (husband, sister, son), say all the right things, but they really don't understand the terror. I've had the surgeries, chemo, no hair, radiation, etc....after 14 years, really didn't think I would be going here again.

The other thing is, now all
The other thing is, now all I can feel is every little pain in my body. Before last week, I really felt great, now I'm feeling EVERYTHING (that pain in my hip, is that something? what is that little pain about?). I HATE THIS!

missrenee

kmikola2 said:

The other thing is, now all
The other thing is, now all I can feel is every little pain in my body. Before last week, I really felt great, now I'm feeling EVERYTHING (that pain in my hip, is that something? what is that little pain about?). I HATE THIS!

Kay-we truly understand your fear
It's hard to get beyond it or try to focus on something else for any length of time. I'm sure you'll be having more testing done. I, too, find myself getting alarmed at every little difference in my body. Sometimes I think I'm being hypersensitive. The mind can really take you to places that aren't real.

I hope the time between now and Wednesday goes quickly for you. As soon as you really know what you're dealing with, you can begin to deal with it and you will.

Hugs, Renee

mom62

Mets
Hi,

I had my first round with cancer in 2003, was clean for 5 years and then the cancer came back in 2009. I had 6 surgeries (five were due to infection) and chemo again. I had PET scan and CT scan after chemo and was discovered to have stage 4 bone mets. I am on hormone therapy. I've had two more biopsies since and have CT scans and Bone scans to keep an eye on them. I wish you all the best. Deep breath now...............(((hugs)))

SIROD

Series of Tests... just like the First Time.
Hi,

Because of the length of time between your diagnose and the recurrence, your oncologist will probably want a biopsy. This is to see if your original and present cancer has remained the same. Sometimes, the cancer mutates.

I need one because the 1st was 4 years and between 2 and 3 it was 8 years. I have remain consistent.

I did have ct scan, a pet scan, tumor markers blood test and it was in my lungs a VATS (video assisted thoracic surgery).

You will be offered a new treatment plan. Breast cancer can return up to 30+ years later.

Of course the x-ray results "showed bone erosion, lesions consistent with mets" is more than likely what it is. However, there could still be some other reason.

More than likely the oncologist might order an MRI, PET scan, biopsy and tumor markers tests.

Wishing you the best,

Doris

jennytwist

SIROD said:

Series of Tests... just like the First Time.
Hi,

Because of the length of time between your diagnose and the recurrence, your oncologist will probably want a biopsy. This is to see if your original and present cancer has remained the same. Sometimes, the cancer mutates.

I need one because the 1st was 4 years and between 2 and 3 it was 8 years. I have remain consistent.

I did have ct scan, a pet scan, tumor markers blood test and it was in my lungs a VATS (video assisted thoracic surgery).

You will be offered a new treatment plan. Breast cancer can return up to 30+ years later.

Of course the x-ray results "showed bone erosion, lesions consistent with mets" is more than likely what it is. However, there could still be some other reason.

More than likely the oncologist might order an MRI, PET scan, biopsy and tumor markers tests.

Wishing you the best,

Doris

So sorry you have to wait...
seems like that's the worst part! Hang in there and take care of yourself - try to stay positive. You are in my prayers - know we are all here for you - we'll be right there with you on Wed - keep us posted.
much love,
Jenny

Ritzy

kmikola2 said:

Thank you Renee...thank you
Thank you Renee...thank you SO MUCH for responding. Yes, my mind is running wild. I was 14+ years out, and sort of didn't think about this stuff anymore. But now, WHAM! When I went through this in 1997, I had complete mastectomy, radiation, chemo, tamoxifen for 5 years, femara for 5 years. About 6 years ago, I had my other breast removed (after my sister was dx), and had a complete hysterectomy. Thought I was pretty much done with this.

To hear that the x-ray says "consistent with mets", I was blown away. My cancer was very estrogen positive, but I thought between the medications and complete hysterectomy, that was handled. How can this be possible? I lost my Mom to lung cancer 14 months ago, and I can't bear to tell my 87 year old father about this. I sort of can't breath right now.

I will keep you informed. I'm pretty much hoping for the best, but expecting the worse.

Thanks again,

Kay

Just want you to know Kay
Just want you to know Kay that I am praying for you.


Sue

kmikola2

Ritzy said:

Just want you to know Kay
Just want you to know Kay that I am praying for you.


Sue

Thanks for the prayers...I'm
Thanks for the prayers...I'm praying for us all. Kay

kmikola2

missrenee said:

Kay-we truly understand your fear
It's hard to get beyond it or try to focus on something else for any length of time. I'm sure you'll be having more testing done. I, too, find myself getting alarmed at every little difference in my body. Sometimes I think I'm being hypersensitive. The mind can really take you to places that aren't real.

I hope the time between now and Wednesday goes quickly for you. As soon as you really know what you're dealing with, you can begin to deal with it and you will.

Hugs, Renee

UPDATE from dr visit...well,
UPDATE from dr visit...well, I am feeling cautiously hopeful. My onc says he is not convinced that this is really mets. His reasons...I am far out from dx (14+ years); my blood work was perfect, my symptoms are not consistent with bone mets. He says bone pain would be constant and get progressively worse, which is not the case with me. He acknowledges that breast cancer can recur at any time, just doesn't fit with my symptoms. He thinks I may be having some other sort of bone erosion. He is ordering the CA 27 blood test, and a PET scan. Crossing my fingers. Thanks for all the support and prayers.

kmikola2

missrenee said:

Kay-we truly understand your fear
It's hard to get beyond it or try to focus on something else for any length of time. I'm sure you'll be having more testing done. I, too, find myself getting alarmed at every little difference in my body. Sometimes I think I'm being hypersensitive. The mind can really take you to places that aren't real.

I hope the time between now and Wednesday goes quickly for you. As soon as you really know what you're dealing with, you can begin to deal with it and you will.

Hugs, Renee

UPDATE from dr visit...well,
UPDATE from dr visit...well, I am feeling cautiously hopeful. My onc says he is not convinced that this is really mets. His reasons...I am far out from dx (14+ years); my blood work was perfect, my symptoms are not consistent with bone mets. He says bone pain would be constant and get progressively worse, which is not the case with me. He acknowledges that breast cancer can recur at any time, just doesn't fit with my symptoms. He thinks I may be having some other sort of bone erosion. He is ordering the CA 27 blood test, and a PET scan. Crossing my fingers. Thanks for all the support and prayers.

SIROD

kmikola2 said:

UPDATE from dr visit...well,
UPDATE from dr visit...well, I am feeling cautiously hopeful. My onc says he is not convinced that this is really mets. His reasons...I am far out from dx (14+ years); my blood work was perfect, my symptoms are not consistent with bone mets. He says bone pain would be constant and get progressively worse, which is not the case with me. He acknowledges that breast cancer can recur at any time, just doesn't fit with my symptoms. He thinks I may be having some other sort of bone erosion. He is ordering the CA 27 blood test, and a PET scan. Crossing my fingers. Thanks for all the support and prayers.

Thanks for the update!
Keep us updated. I hope it is something totally b9.

Best,

Doris

MAJW

jennytwist said:

So sorry you have to wait...
seems like that's the worst part! Hang in there and take care of yourself - try to stay positive. You are in my prayers - know we are all here for you - we'll be right there with you on Wed - keep us posted.
much love,
Jenny

Did I miss something?
Has Kay said this IS mets to the bones? I must have missed it...

Wishing you the best, Kay...
Hugs, Nancy

kmikola2

MAJW said:

Did I miss something?
Has Kay said this IS mets to the bones? I must have missed it...

Wishing you the best, Kay...
Hugs, Nancy

No. Actually oncologist
No. Actually oncologist said he isn't convinced it is mets...my symptoms don't fit. Blood work was perfect, pain doesn't fit, etc. He wants me to do more bloodwork AND a PET scan. One day at a time, but this day looks a little brighter. Thanks for the support. Kay

missrenee

kmikola2 said:

No. Actually oncologist
No. Actually oncologist said he isn't convinced it is mets...my symptoms don't fit. Blood work was perfect, pain doesn't fit, etc. He wants me to do more bloodwork AND a PET scan. One day at a time, but this day looks a little brighter. Thanks for the support. Kay

Kay, hoping and praying that all is well
Sending positive energy and prayers out to you for good results on future blood work and PET scan. With this disease we can never assume anything--wait for those results to see what you're dealing with.

Please keep us informed, Kay. We're pulling for you.

Hugs, Renee

DebbyM

kmikola2 said:

No. Actually oncologist
No. Actually oncologist said he isn't convinced it is mets...my symptoms don't fit. Blood work was perfect, pain doesn't fit, etc. He wants me to do more bloodwork AND a PET scan. One day at a time, but this day looks a little brighter. Thanks for the support. Kay

Praying for you Kay!

Praying for you Kay!