Bone mets after 8 years... Should I have done more?

Jennsmom

Hi everyone, new to the boards.... Never thought I'd be here. Dx in 2006 with IDC stage 2 ,grade 1and an Onco type score of 1!! Had lumpectomy , radiation and 5 years on Text trial ( ovarian suppression with tamoxifen )  At end of 5 years Onc said you're good, have a great life.  My back ( tailbone ) area has been bothering me for a while but I have had chronic issues with this area so it really didn't raise any red flags with me. About 6 months ago just had a nagging voice in back of my head. Doctor did x-ray and only showed degenerative sacrum .... No suspicious things she said. Couple of weeks ago rib pain started and that nagging voice again.... Went back to doctor, she ran an MRI on lower back and low and behold they found " something" on my iliac bone. She only did a regular xray on ribs and jt showed nothing , but i have no faith in that as the first xray on my back really didnt show anything either! Bone scan scheduled for tomorrow.... I've never been so scared!! I now feel like I should have never trusted that Onco score and should have done chemo at the beginning!!!

Please tell me there is hope with mets.... The two friends I had who reoccurred , both lost their battles rather quickly........

Golden01

Most of all, remember to breathe. Know that you made the best decisions for your treatment when you were diagnosed. After all, you had an Oncotype of 1! You went through surgery, radiation, and five years of therapy. That is a rigorous treatment regimen. Waiting for the scan and results is hard. You are surrounded by good wishes. 

MRSROCKYTOP55

Jennsmom, I have been recently diagnosed too and you will be hearing from many women here with bones mets who are doing well for many years.  I have extensive bone mets but plan to be here for a long time.  You will feel better once a treatment plan is in place.  You have a lot of support here.  We can do this.  Blessings, Kathy

MRSROCKYTOP55

Jennsmom, I forgot to mention, I too had sciatic pain for months and thought it was age, to much bending, etc.  I think at first we are kind of paranoid and then maybe get too relaxed, but it is what it is.  Don't look back only forward.  Kathy

Jennsmom

Thanks Golden01 and Kathy.... The waiting is just awful.  My husband doesn't want to tell anyone till after we meet with the oncologist and know what all we are dealing with, so I'm rattling around in the house all day with no one to talk to and driving myself nuts! I appreciate your quick and thoughtful responses !

pajim

Jennsmom, you did everything right.  Please don't kick yourself for anything.

Chemo may not have helped at all, particularly if you were strongly ER+.   You could think of it as tamoxifen did the job for 5 years. 

This could be nothing, and it could be mets.  Waiting is indeed the hardest part.  As for living with bone mets, lost of people do for a long long time.  I met a 15 year survivor at a conference last year.  If you look at the Stage IV boards you'll see women celebrating 7 years, 12 years, all sorts.

Can you get yourself out of the house and do something? 

exbrnxgrl

Jennsmom,

This is a difficult time for you. As far as the past, and what you could have done, it no longer matters. Despite a very low oncotype score, there was never an iron clad guarantee of anything and there never will be with bc as we know it today. Don't waste any time looking back. Find out what's going on, what you're going to do about it and move forward. Best wishes for you.

Jennsmom

Onc just called and said he would see me on Thursday after the bone scan.... Grateful for his prompt attention!

Thanks to all today for your reassuring words! Going to try to sleep tonight!!!

sandilee

Good luck to you Jennsmom.  No, I don't think you "should have done more."   There are many women on this board who have had chemo as a first treatment and the cancer still returned.  I think the Tamoxifen did it's job for at least five years, and maybe more (with hope that your scans are negative.)  

    If it turns out it is mets to the bone, there are many treatments that can keep you stable for years.  And the fact that the hormonal treatment worked well for you for many years means that it's very likely future treatments will also be effective.  And not having done chemo yet, you have quite a few tricks in the bag, if you need them.

   {{{hugs}}}

BikerLee

I think one thing to keep in mind is that the oncotype gives a prediction as to whether chemo would have provided benefit. Your low score suggests that there would have been no benefit. 

My interpretation of that is that you'd be probably dealing with this even if you had chemo back in 2006, you know what I mean? 

You really did make the best decision given the information you had at that time. From what you've written, it truly sounds like you really did.  

Also - grade 1 means slower growing cells means less responsive to chemo...  Grade 3 means faster growing cells and more responsive to chemo.  So, chemo really may have made little to no difference in what you are - very unforuntanately - facing now.

Last thing - I'm so sorry that you have to face this. But, as you can see...  there are many here ready to show you kindness and support.

edwards750

I am only 3 years into my BC DX but I agree with everyone else. Don't beat yourself up over what if because you went with the information you had at the time and there is no way to know whether chemo would have made a difference or not despite your low Oncotype score. By the way I had a low score too of 11. Plus you are getting ahead of yourself you don't know whether you have mets or not. Hopefully you will post and let us know what happened after your meeting with your Oncologist. No matter what all is not lost by a long shot. Keep the faith. Diane

Forever49

Jennsmom - I just joined today as well.  Bone mets after 11 years.  I went from doctor to doctor trying to get my upper back pain diagnosed for 8 months last year because like you "I just knew it wasn't my back problems this time" and they kept disregarding my opinions that it was deep in the rib area.  Low and behold 8 months later finally get a diagnosis of fractured ribs.  Huh?!!  A quick bone scan and that evening call from my primary doc was not totally unexpected, you know.  We're in it for round two and hope we'll all go as far as we can.  After the first couple weeks things settle down and life goes on, we do what we need to do for life to continue day by day.  What else would we do?  We are strong (most of the time) and need to grab our daily joys a little tighter and more often.  Good luck.  I'll come back if you do.

Karen

jltandreilly

Hi Jennsmom and others - I am a new member and am curious on your results and where things stand. I'm 4 years out, was 1b, grade 3, oncotype of 8. Did a double mast, no chemo, Tamoxifen (though haven't been consistent for fear of the side effects). I have been having pretty intense middle back (thoracic) pain - mostly at night and it wakes me up and almost takes my breath away. I also had a low grade fever last week. It's been pretty persistent and unlike other back pain I've had in the past. Last year my low back pain resulted in a large cyst (benign) on my left ovary and a hysterectomy. Has anyone on this board experienced the type of pain I've described and what was the outcome? I'm waiting for my onc to get back into town to schedule a scan next week, but any feedback would be welcome. I'm not an alarmist, but I do try to listen to my body and it doesn't feel quite right. Trying not to jump to conclusions but trying to get my head around things should I be in for some bad news. Am also beating myself up wondering what I should've done better, should I have done chemo which I almost opted to do, etc.... Thank you!

Lenn13ka

Hi jiltandreillt,

I just went through several months of intense thoracic spine pain. I am very, very active and am used to all kinds of aches and pains and injuries but, of course, you always have  BC in the back of your brain. I waited until my scheduled MO visit and she suggested a bone scan. Results were negative and I am off to a physiatrist for examination and PT . My MO also said to make sure to keep her informed on the pain. Reassuring??? Kind of...

I also passed on chemo  ( 3 yes/3 nos) but the no came from one of the best so, I try not to keep bringing that decision back. I only have control over lifestyle issues so, I concentrate on that. It is hard though. They don't make it easy for us. So many unknowns.

Good luck getting to the bottom of your thoracic pain. ((((HUGS)))) to everyone else on this thread.