sciatica/mets

raro

Hi, all,

I was here 4 years ago with stage 3 IDC with 8 pos. lymph nodes. I went through all the surgery, chemo, rads, and was feeling great until 6 months ago, when I was moving something and felt a pain in my back. Soon after, I was getting radiating pain and numbness down my left leg. I went to the dr. and she said it was classic sciatica (basically pinched sciatic nerve). I asked could it POSSIBLY be mets and she said no, because it was too classic for sciatica. The insurance wouldn't cover MRI until I did physical therapy. So I did physical therapy.

Six weeks ago I go to my onc. and mention it. He asked if the pain got better with PT, and I said yes, although I keep getting flares on and off. He said that was normal and that if it were a tumor it wouldn't have improved with PT. My bloodwork was normal, and he said he would see me next year. I was so happy when I left his office!

A week later, I end up at the ER with the worst pain in my life. Dr. says it looks like sciatic flare, and agrees that I need an MRI. We're thinking slipped disc or something. And what happens? It is a 7 x 7 cm mass on the lowest part of my spine (sacrum). It's bigger than my original lump. Now they have put me on steroids and percocet for the pain/swelling, and on Monday,on the anniversary of my husband's death, I got to go to the hospital where he died and get a bone biopsy. Not a good day.

 I keep trying to be positive. Maybe it's not mets, maybe. I've been surrounded by caring family and friends who are horrified and just want to help. I've held up pretty well until now, and the stress is finally caving in on me. I am just so angry that all these years, no matter what the issue, it's been "it's probably nothing, but with your history, we'll make sure..." and now it's "oops, we thought it was nothing..." and I'm left with this blob on my butt. 

I don't really have any questions right now. I just needed to vent to people who understand what this F---ing disease is like. I live in Virginia, and a friend of mine has been going to Johns Hopkins for her medical care. She says if this is mets, I should go there, that it's worth the long drive. Anyone have experience there?

Thanks for listening.

barbe1958

{{{{{{{{{{{{{{{{{{{{{{{{{ Hugs }}}}}}}}}}}}}}}}}}}}}

There is nothing I can say....

NancyD

raro, I'm so sorry to hear of your experience. We are told not to worry, and yet, if we don't it seems no one else will.

I don't have any experience with Johns Hopkins, but if you are not currently being treated at a large medical facility, you may find the access to lots of specialists reassuring. At the very least, there is always someone to give a second opinion.

I use my local doctors and hospital for most of my treatment, but since I live close to NYC, I also have access to many places there. I did my radiation and physical therapy in the city since I wanted to work during those treatments. But I will say, we always have to be our own best advocates. If something bothers you and the things the doctors say just don't add up, seek a second or even third opinion until it is settled once and for all.

If you have lost confidence with your past medical team, then starting freash might be just what you need to gather strength for what might be a new fight against bc.

marshakb

Raro, EXACTLY the type pain I had.  CLASSIC sciatic nerve pinched.  Everyone said so.  Mine even got a little better with a chiropractor and with massage therapy.  Turned out to be mets to the femur.  My rad onc said he would never have ordered scans with the way the pain presented.  After the fact (they broke my leg moving me at the hospital) the doc said the pain was probably from exposed nerve from the mets damage or the mets pressing on a nerve.   We  were all shocked at the dx.

So sorry to hear your news, I cringe every time I read here "classic pinched nerve". 

PT63

Hi raro

I am so sorry you are going through this.  I am praying that the results are B9.  If you do want information on Hopkins, my oncologist there is Deborah Armstrong.  She is not on the main campus, she is closer to Towson.  I really like her.  PM me if you want more information.

Sending hugs your way.

fightinhrd123

I have that kind of pain in my leg/  Its my left leg and it only hurts when I turn in side to side, and hurts bad sometimes i yelp/    Would anything show up on a bone xray?  I had a whole body xray and nothing was there.  I dont know weather to ask for more scans.  Actually I know I should ask for more scans Ugh!

Analemma

fightinhard, I believe it would show on a regular xray.  I did have a bone scan last week because of pain, and two spot lit up.  But then, they used a regular xray to confirm it was mets.

nobleanna007

Raro,

    I am so sorry you went through that and know you must be mad, scared and Angry as H**L! I know I would be. But here is hoping you get a big B9 on it!!!!! I will send positive thoughts to you!! And keep venting if you need to, this is a great place to do it!

                                                      HUGS-Bridget

Lifestooshort

Raro,

I'm so sorry about what you are going through.  We get it so feel free to express anything you need to.  Hope your pain is getting under control.  My thoughts and prayers will be with you while you get your scan and results.

Analemma - if you don't mind, can I ask a question?  If mets can be confirmed by x-rays, why don't they do x-rays to begin with to see if scans are then indicated?  I ask because my back has been hurting lately......  Sorry if this is not the appropriate place to ask the question.

Laurie

AussieSheila

I can't say for sure, but the x-rays I had last Oct for bone pain in legs, hips and ribs was to dx arthritis.  When the results came in, I was told I had degeneration of the spine, collapsed vertebrae and arthritis, but I was referred to an Orthopaedic surgeon 'just in case.'  He ordered a bone scan and the truth was revealed. Bone mets! 

My old GP told me years ago, after an x-ray, that I had arthritis, so I just went along with that.  Every time I saw him re bone problems, I would tell him that I was worried because my M.i.Law died from mets to the spine from an unknown primary and I was anxious after having had BC. Last Aug-Sept, I would get out of bed and I could hear this clomping sound as if I had a wooden leg but, like tinnitus, I thought I was the only one who could hear it.  No matter how hard I tried I couldn't tell exactly where the 'noise' was coming from. One day it (and the pain) was so bad I asked my daughter if she could hear it and she told me that she often heard it!  Rang my GP and was told he'd retired, so after more time wasted trying to find another Dr who was taking new patients, I was finally dxed early Nov.  At the time, I was more shocked that I didn't have arthritis than that I DID have cancer.

Neither my new GP, nor the Ortho, would say that I had the big C, so I had to wait to see the Oncologist to actually be told that, "You have Breast cancer mets in your bones and it is incurable, but it can be managed."  Once I knew that I wasn't living by an hour glass, and could still look at calendars I was quite relieved, to say the least.

Sheila.

PS. When I went through all my old x-ray dx sheets, there was not one word about arthritis in them.

AussieSheila

I should add to this that both the Orthopaedic surgeon and the Oncologist both stated catagorically that I had had the mets for years.   When I was first dx in '95, I asked different Drs if I should have a bone/body scan but they always said it wasn't necessary.

Sheila.

Analemma

Lifestooshort, I don't know the answer to that question, except that maybethe tests are used conjunctively to comfirm each other.  When the two spots came in on the bone scan, she said they could also light up with inflammation or arthritis, thus the xray to confirm.  But I do remember that Elizabeth Edwards' mets was found when she hurt her ribs moving a chest - it showed on the xray.  I have to assume that she went through further testing to confirm bone mets, and to evaluate the extent.

fightinhrd123

Ugh I dont get it either.  I shall have to ask my onc.  My xray was fine, nothing showed up at all.  Maybe an xray can show damage but not what kind?  Very confusing!!!

pip57

Raro,

Crap!!! is about all I can think right now, for all of us dealing with the fallout from BC.  I hope you can get this under control quickly.  Your experience reminds us that we all have to do the research and push until we get the right answers.  Like we don't have enough stress! 

LuAnnH

raro, I would have put money on the sciatica with the symptoms you presented.  I was going to tell you to go to an orthopedic doctor because that would be the route to take for sciatica.  This lesion could be B9 so I will be praying for that for you!  Good Luck and please let us know how the bx goes.

lovinmomma

I am sorry! That is scary. I have the same kind of pain and already have mets to the pelvic area. I was told it was from the taxotere (even though it showed up 2 weeks before I took it) and pinched nerve. Hopefully if it is something, my pet scan will show it next week.

Sorry that you are dealing with this!

ICanDoThis

I do want to say that, for those of you who have just been totally freaked out by this entire posting, that most of us who have sciatic symptoms just have sciatica!

I sure do, and have had it for years. But I have no node involvement, low grade, etc, so it's unlikely that mets are in my future. Ideally, your doctor is taking both symptoms and your initial diagnosis into account when deciding about testing for this.

I did finally have a whole back MRI, which showed degenerative back disease, so my chiropractor will be my friend for life.

Jaypee60

John Hopkins is one of the best for cancer treatment.  It's right up there with Mayo Clinic. I live in Maryland and just recently dx with mets and I know this will be long term treatment. I will be going to Lombardi Cancer Center at Georgetown University Hospital. It is a NCI, National Cancer Institute center and a teaching hospital like John Hopkins. I also wasted 7 months going through PT after 3 doctors missed the lesion on L1.

claire814

I found this thread through a Google search.  I have had issues walking for two years - it started in week 6 of 12 weekly taxol tx summer 2007.  During the past year, I have noticed that the pain originates in my back.  Rheumatologist referred me to Neurologist for EMG a year ago and then a recent repeat test.  No neurological issues diagnosed. Rheumatologist told me to continue walking on a treadmill.  Clean bone scans 12/2007 and 12/2008 with the exception of linear uptake in ribs 4 and 5 - nothing to worry about according to BC oncologist - just old bones.  Recent spinal x-ray - degenerative disc disease.  The pain continues to intensify and exacerbates with sitting or walking.  PCP prescribed hydrocodone-ibuprof 7.5mg/200mg in last month.

I don't know where to turn - BC oncologist, PCP, or a new specialist?   Any input is greatly appreciated.

 Shellie in sunny Colorado

candie1971

bump

Alloway

Hi. I'm new and wondered if I could pick your brains?

Bone scan in April '08, which showed nothing to account for the pain in my lower back and right hip. Surgeon thought it was sacroiliac joint, but the MRI in October '08 was clear too. Have had extensive physiotherapy and tried several different exercises but nothing really helps. Still taking Tramadol and Paracetamol, which don't take the pain away completely, but do numb it.

I'm due back at the Oncologist in April '10 and I'm wondering if the constant pain and that I'm on heavy duty painkillers merit another bone scan? The pain is not awful, more just like a constant dull ache.

Anyone have similar symptoms or have any thoughts?

33skidoo

I'd ask for another round of scans and whether a PET/CT would be useful.  If everthing still comes up "normal", perhaps a referral to a pain management specialist would be helpful.  I have bone mets and degenerative discs.  The discs give me more problems than the mets.  My pain management specialist gives me epidural steroid injections to the nerve root area and it has really helped my pain.

33skidoo

Jo-5,

 My mets were discovered when I went in for an MRI for my (presumably disc-related) back pain.  Turned out I had mets in T11 & T12 vertebrae.  They were pretty obvious on the scan.  That led to more scans, and more mets were found elsewhere.  My mets are stable.  Discs are a bear.

LizinKS

Like I Can Do This, I have degenerative disc disease- mine with mild scoliosis. I totally panicked a year ago this month when I had rib pain on my right side and back pain-even though my IDC was small, localized,clear margins and no lymph node involvement. I scoured the Internet and lived in total fear and panic  until I could see my onc., who diagnosed musle spasms, and a couple of weeks later, my g.p., who told me of degenerative discs. Still, just having had breast cancer, it's wise to take bone pain seriously. My regular doctor thought it was wise to fold this concern into his diagnosis. I am one of the fortunate ones. PT,medication and regular exercise have helped. (Armidex is great for keeping estrogen levels down and cancer at bay,but I feel really creaky and stiff sometimes.)

To all those who have found their bone pain to be mets, know that you are in my prayers every day-especially Raro. Please know I'm thinking of you all each day.

echo-on-the-lake

Hi--I'm new to this site.  A couple weeks ago I started having constant pain in my hand (an area from the base of my thumb to just above my wrist).  The pain gets worse when I move my thumb or try to turn a doorhandle or twist open a bottle top or even hold things in my hand. Just had a regular X-ray done yesterday, which my reg family doc says does not appear to be arthritis. Have appt w/hand specialist on Friday. For those of you w/bone mets....does it ever happen in the hands? 

 Since I just finished my rads the end of last month, I'm really worried about the cancer coming back. Never had any bone or PET scans done. Just an MRI on the boobs.  Being that my tumor was a grade 3 and that I have triple negative bc, I'm definitely in the high risk group of both local and distant recurrence. Any help would be appreciated as I haven't been able to find anything online regarding bone mets in the hands!

candie1971

echo, I had a problem like that this past April. It was a tendon in my wrist that was stretched. Hand specialist fixed in a simple surgery. I ,also, have never heard of mets in the hand. I think it is safe to say it can be from overusage or typing . That's why my doc said.

My hugs and prayers are with you all.

candie1971

Jo, I am having wrist pain again..started the other day...same place...roflmao...I can't do anything but laugh. I have been falling apart ever since bc. where do u get the tens unit..from the Dr? Is it for pain???

candie1971

Jo, I am having wrist pain again..started the other day...same place...roflmao...I can't do anything but laugh. I have been falling apart ever since bc. where do u get the tens unit..from the Dr? Is it for pain???

candie1971

Jo, hoping you are feeling better today!

Sue-61

Some health insurance companies pay for TENS unit if you meet certain criteria. I would check that out before I bought one! Sue

candie1971

Jo, oh that sounds interesting. I went to physical therapy a few years ago and they used a stimulator..prob the same thing, right? mmm..will check into it.