thought I had a slipped disc but then....

sueUK

thought I had a slipped disc but then....

sueUK

Hi ladies, I havent posted in a while - I thought I was kind of done with all this bc business but now the topic is rearing its ugly head in my life once again. Forgive me, I need a little rant - Im beside myself with worry and dont even know at this point if I have a real need to be?!?

I had a single mastectomy 2 years ago with lat flap recon last year. I had no node involvement and the only follow up treatment needed was the 5 years of tamoxifen. So far so good...

My current issues are pain in my lower back, which mostly radiates into my hip and down my leg. I guess it was niggly about a year ago but in recent weeks became so bad that I am off work and only getting about with a walking stick. Early on I had regular x-rays, mostly to check for mets in the hip and lower back area - just to be on the safe side, but all was clear. I had a full blood check and all was well with that. To cut a long story short, the doc sent me to the physio who diagnosed a slipped disc  and she has been manipulating me each week - about 4 or 5 weeks now. I have to say that googling all the symptoms of a slipped disc does fit in with what I am suffering...though improvement was expected by now which hasnt occurred. I also take anti-inflammatory meds - not sure they help much either. Anyway, because of the lack of improvement I was sent for an MRI scan last Monday to look at my lower back and pelvic area. The idea being to identify the area that may need a steroid injection to ease the pain and get me walking again.

Well, the shocker to me is, Ive had an letter today giving me an appointment for a CT scan - liver (with contrast) and chest - no explanation, nothing! I can only assume that something has been seen on the MRI to instigate this although these werent the areas being scanned? The only phone number on the letter is an answerphone I have to ring to confirm I will attend - I dont know who to ask - whats this all about, what have you found? I was not expecting the results of my MRI for a week or so yet, and I know my GP will know nothing until then - I am in the UK by the way...communication between our health carers is not our strong point, and generally speaking they will tell you nothing until your official appointments...tut!

Does this make sense to anyone? I dont know what to think at all and I have to wait until next Thursday for this CT scan - at which point I will ask questions but I dont hold out much hope of getting answers even then, as they will say that they are just technicians doing the scans and are not qualified to interpret them.

If anyone has any opinions on what this could mean, please let me know...good or bad. Even bad stuff we find ways of coping with dont we...when we know what the heck is going on!

Thank you for being here!

Sue x

CoolBreeze

I don't know how it works in the UK, but here the doctor who ordered the tests gets a copy as soon as they are available - which for my insurance is the next day.  Somebody saw the results and ordered new tests.   I would call the doctor and ask him what is going on.

I have no other answers for you - seems like they either saw something or decided to just do the whole battery of tests to rule everything out.

I'm having the same problem with my back -same kind of pain.  Lower back, left side, radiating into my butt.  I'm having a bone scan next Friday.  I'm still on herceptin so I'm not worried it's cancer but I do want to know what it is so I can take care of it.  I've been through enough to now have to live with chronic back pain!

CoolBreeze

I don't know how it works in the UK, but here the doctor who ordered the tests gets a copy as soon as they are available - which for my insurance is the next day.  Somebody saw the results and ordered new tests.   I would call the doctor and ask him what is going on.  Even if you think he doesn't know, he can find out.

I have no other answers for you - seems like they either saw something or decided to just do the whole battery of tests to rule everything out.

I'm having the same problem with my back -same kind of pain.  Lower back, left side, radiating into my butt.  I'm having a bone scan next Friday.  I'm still on herceptin so I'm not worried it's cancer but I do want to know what it is so I can take care of it.  I've been through enough to now have to live with chronic back pain!

squidwitch42

Sue,

I was waiting for someone to answer, as I don't have one. I, like both of you, have back problems. It can get very bad at times...I can understand the fear as back pain is well, quite painful. One thing that gives me a little piece of mind (and a negative PET in July) is the fact that is gets better with rest. I can sleep, and only in a major flare am I unable to roll over in bed. If you do a google search and look up dermatomes, you will be able to tell what level (usually L4-5) the disc pain is originating from. L stands for lumbar...it may ease some of your anxiety. I do hope you are able to get some answers from your MD, and please keep us posted. Best wishes, traci

sueUK

Thank you so much for your replies, it just helps to know there are folks out there who are listening and understand the anxiety. At home I try to keep it to myself because I know my loved ones are worried enough and I kind of think - if I look like Im not bothered, maybe they will worry less...Im betting Im not alone in that strategy!

I am taking deep breaths and trying not to think about things too much. I will be on the phone to my gp first thing Monday morning...well, to the receptionist anyway and fingers crossed that I can get past her - no mean feat I can tell you! Hopefully she will be able to investigate whats gone on so far - like we arent the first people who SHOULD be informed!

Cool and Traci, Im sorry you are both suffering with your back too. Personally I think my back issues are probably seperate from whatever it is that has instigated the CT scan - the liver and chest werent even covered by the MRI, so Im assuming at this point that something has been spotted in addition to whatever my back problem is that has caused concern. Try as I might, I cant put a positive picture to the situation and it is such a worry. Someone will be getting a piece of my mind...when I can reach them that is!

Ironically, for the last day or two Ive been able to get about the house without the stick and things seem to be on the up in that respect!

Wishing you all a good and pain-free rest of the weekend. Im going to immerse myself in some murder and mahem with CSI! lol!

Sue x

squidwitch42

Sue,

Immersion therapy is a good idea. Yes, I hear what you are saying and the logic behind it. I think the best we can all do with tough times like this is just keep on keepin on, until you can get more info. I have had the old repeat chest CT in the past month, so I know the anxiety of tests. Please keep us posted, I think you are 6 hours ahead in time?

Hang in there,

traci

barbe1958

Sue, if the chest and liver weren't covered in the MRI, what the heck did they see? I can certainly understand your fear. Our health system in Canada is very similar to yours and I know you can't get a copy of your report without a doctor going over it with you. But really! They sent the letter awfully fast.... It's almost rude to send the letter, but a phone call would have resulted in too many questions. It's our bodies, but we're the last to know! Is the CT this Thursday or the 14th? You'll go crazy waiting! Your GP must know something....

billiegirl

I feel your PAIN! I am the QUEEN of back issues and it is so frustrating to always feel like I am "calling wolf" but a relief to eventually be told it is "just pain fom back issues". I had major back surgery at T7-8 in 2007 for a ruptured disc that was impinging the spinal cord and causing numbness and major pain, even some loss of bowel and bladder control.Put up with it for months, thinking that it was mets. Since then, I have had 16 different steroid injections in low back due to pain from spinal stenosis, bulging discs and arthritis.The shots helped a lot. No longer a candidate for surgery because I had a respiratory arrest after my last surgery ( a year ago and eneded up on a vent for a week). Now I rely heavily on my cane. I have also been a "victim" of the failure of the Drs office to communicate several times. I assume these are just office "slip-ups" but it is sad that that some nurses and Dr are not able to comprehend the anxiety and misery added to the pain we are already suffering, which is bad enough!  Recently, had been having deep rib pain for several weeks. It was on opposite side of Breast Ca and I assumed it was probably rib mets, and got the "run-a-round" from oncology office, who said they couldn't see me until November! Got mad and changed Drs. New Doc saw me next day and it turns out I only have shingles! I can't imagine the anxiety ( never mind the pain issue) if I had had to wait another 5 weeks! Will be anxious to hear what happens with you this coming week. Hope you are feeling a little more comfortable for the time being.

sueUK

Hi girls, its quite something to think 'its ONLY shingles' eh Billiegirl, like that isnt a miserable thing to have - poor you, I hope that doesnt linger and that you arent too uncomfy. But I know what you mean, in the big picture - plain old back issues and shingles can almost be a welcome distraction.

Barbe, I dont know what they've seen, thats what doesnt make sense, and things that dont make sense seem so much more worrying. The way my mind is working right now is, that theyve seen sinister things in the lower back so better check out some other areas aswell...given my bc history, the chest and liver are likely candidates. The CT is this Thursday...is it the 7th or 8th, so not too long to wait I guess - but then, when you know what the waiting lists are like here then the speed of the scan is ANOTHER concern...lol....what are we like, clinging on to every little thing to worry about!

We are indeed about 5 or 6 hours difference here...its nearly 2.30 am here right now! Hopefully my kitties have warmed my bed up by now so I shall head off and get some sleep.

I cant tell you how wonderful it is to be able to come along here and 'chat' with you all. None of us want to be here, but things being as they are, its good to have each other! I do feel better for coming along here.

Have a good day across the pond!

Sue x 

hrf

Hi Sue. I also understand your anxiety and hope all will be well. It is inhumane when we don't get all the details and are left to think and think and worry. I've also had some new back pain in the past month and the first thing that comes to mind is mets. I've had back issues too - degenerative disk disease plus a cyst on my spine. But this pain was in a different place. When I went to the health food store last week, instead of buying the usual glucosamine and chondoitin I bought something different which said its effect would take a week and it does seem to be helping. So now I'm  thinking it is more osteoarthritis. My onc said the pain didn't sound like anything to worry about. To all my fellow back pain sufferers .... it is difficult, isn't it? Hope everyone else feels relief very soon.

squidwitch42

Billigirl,

My jaw dropped when I read your story. Loss of bowel and bladder with the spine is scary stuff, then on a vent for a week after respiratory arrest? I guess shingles are a "walk in the park.." I am totally being sarcastic here, I have had them and they hurt terribly.

I have had 6 rounds of epidural steroids, and I am waiting for my thyroid evaluation before we go into the SI joint for another round of steroids.

hrf and all...it's like once you hurt your back, it's compromised forever. I have a shearing issue through the SI joint and need to invest in a better SI belt. The joke is because of the risk of lymphedema on the left side, I have to carry everything on the right, which is the side where I am injured.

I hope for us all to have some amount of relief and recovery. Sue, sounds like you are hanging in there. I hope you and your cats are resting comfortably

barbe1958

Sue, just checking in the middle of the night to let you know you aren't alone....hugs!

sueUK

Aw thanks Barbe, thats good to know and you are very kind!

Sundays are a good day for me as my sister visits and we do the crosswords all day - excercise the brain cell, and today I even managed a trip to the mall with her - its been so long! I live back with my Dad now that all my kids are grown and since my mum passed - but he likes to watch war documentaries all day long....a tad depressing it has to be said! My passion is crafting - scrapbooking and the like, but since the back issues...escaping upstairs to my crafty emporium has been difficult - hopefully that at least will be a bit easier from now with me being more mobile.

The really annoying thing about being off work with my back - about 6 weeks now, maybe more, Ive lost track, is that I could have had a 'boob job' to even things up after my recon last year, but I turned it down as I felt that I couldnt take the time off work...having had two summers off, it didnt seem fair to my co-workers....then look what happened! 

However, if my back problems have accidentally lead to the early discovery of something else, then maybe its been a blessing.....one way of looking at it eh!

Its 11.30pm here just now...Im thinking I will be well advised to get an earlier night tonight so that I can be on the phone the minute the surgery opens....honestly, that really is a battle in itself!

Sending sparkly positive vibes to all!

Hugs, Sue x

barbe1958

I'll be checking during the day to make sure you got an answer. It IS your body, you know, well....I know YOU know, but you know what I mean.....right?

Isabella4

Sue... I am also in UK, and what you are writing could have been me just about this time last year.

I had done all the wandering about back and forth to GPs, then physios for 12 weeks of bouncing me up and down, then back to GP to report no progress, I was STILL hurting . So, more anti inflammatories, back to physio...get to see Boss physio this time, who decides I need an MRI. Whew, I went cold on the spot.

The story was they were NOT looking for mets in my hip, but 'just looking to see how all my bones were aligning!!' Who were they kidding, here in UK no-one spends that amount of money on an MRI unless looking for trouble. (the cost of my MRI was £1000, my hospital, a very major teaching hospital couldn't fit me if, so had 'done a good deal with our local Bupa hospital' to use their scanner at a cost of £1000 a shot) I must admit the absolute change going to a private hospital from the normal NHS hospital knocked my sox off !

The tech told me he was looking for mets, even tho' I had been assured the MRI was in no way looking for mets, ( by my own GP !! )

I was clear, even tho' no-one had the decency to let me know for 12 days. They DID find 3 slipped discs, I am now on a list for an op. to get it sorted, When ?? hahaha. I was hoping to have got it done before Christmas....but actually I had problems found with my aortic valve, so a general anaesthetic wasn't an option for me until this has been sorted. I am on a list for this as well !! I am in really bad pain, and try not to do very much standing up. Driving and sitting down are easy peasy, but try and walk across a room and its murder.

So, hoping they'll find the same thing for you. I was so absolutely sure I had mets, I didn't think slipped discs could have caused so much pain..... I am pretty well doing not much at all nowadays whilst waiting for 2 ops. Can't walk far, can't go out shopping unless I can lean on a shopping cart, can't go in my garden, can't walk my dogs, can't change my bed linen. But the way our NHS works this could go on some time !!

Thinking of you. Good Luck.

Isabella. 

billiegirl

Who would have known that so many of us are having this similar back pain experience on top of dealing with BC. I wouldn't wish it on my worst enemy but am much comforted to know that their are others that understand what I have been through and for whom I feel compassion and empathy as well. I have become pretty much a "home-body" also, prefering to just "putz" and be where I can sit or lay down frequently. My heart goes out to ALL you gals. SUE X, I will be praying that your scans show something for which they can offer you some helpful treatment or relief...and Isabella...all I can say is, HECK!...your story is so much like mine.  

sueUK

Good morning gals! WOW..I managed to get an appointment with my doc at 10.20 - thats a little over two hours from now....thats a miracle in itself so Im hoping Im on a roll lol!

I also rang the number to confirm my appointment for the CT scan expecting an answerphone but got a real person...OMG! I grilled her for whatever info she could give me - not a lot, but she did say my GP would be able to ring up and have the results of the MRI faxed over straight away. It does appear though that the CT has been ordered as a result of the MRI, and not before that which I had kind of hoped.

Isabella - they sure do put us through the ringer here in the UK dont they!!! I do hope you get your op appointments soon - or a lottery win so you dont have to bother with waiting lists!!!

Oh well, another couple of hours and I should know something....but do I want to?????  lol!

Hugs, Sue x 

annadou

Hi Sue

 Im British living in Greece

I am having similar problems to you but the picture is confusing as I do have a history of back problems but nothing a week of anti imflamms and a bit of rest doent cure .

This however is different -its not acute its fairly bad discomfort and not my usual sort of pain .of course my mind goes to mets(how can it not ) so its the shits for me and I suppose I better see about an MRI or whatever...

I dont know if I can face up to it all again...

Hope you are coping...

xxAnna 

sueUK

Hi all....from a shelllshocked soul in the UK. My doc managed to call up my MRI results and it seems they have found what they term is 'highly suggestable' to be a cancer in my bone marrow...in the hip area. Bummer! The CT will see if it is elsewhere, but whatever....its crappy news and Im not sure what to do with it just yet!

On the plus side, it is only from reading these boards over the last couple of years that I know that there is a lot that can be done - otherwise I think I would be totally wrecked. I think I might need to go and have a little cry though. Will keep you informed and thank you again so much for your good wishes.

Sue x 

  

Leah_S

Oh, Sue, that really is awful. I was dx with bone mets recently, and I cried a lot, too. I rarely do now, which I attribute to the resilience of the human sprit - it's amazing what you can get used to. My onc says it is a "chronic condition" and likens it to high bp & diabetes. In other words, I will be having some sort of treatment for a LONG time.

I try not to let my mind go to the dark places.

Sending lots of love.

Leah

sueUK

Hi Leah, it sure is crappy eh! Im sorry you have naughty bones too! All I want is to live - whatever treatment they throw at me, I dont care about that...just let me live! I have to tell my sons - not looking forward to that. But most of all at the minute, I just want to get started on blasting this thing away...I hope I dont have to wait too long to get going.

How do you stop shaking and wanting to cry (but cant as it would upset my Dad), and get yourself in battle mode??? I really wasnt expecting this.

Love & hugs, Sue x   

barbe1958

Sue, sweatheart, you WERE expecting this. That's why you haven't crumbled to a blubbering mass at the foot of your chair. You got the tests hoping it wasn't this.

The fact that you can even type out the sentence shows an admirable strength. I think I'd still be reeling. I'm sure you'll get the jolts of adrenaline through your system for a couple of days as plans are set in place. You still have the MRI to do, right? Maybe it will negate some of the findings or at worst confirm and Plan A can begin.

You know you've been in my thoughts all along and now you are in my prayers.

billiegirl

Sue X, some answers, finally...but not what any of us wanted to hear, for your sake. So sorry you got " discouraging news". I will have you in my prayers. You can see that others here have experience and wisdom in going through this also. Hopefully, you will soon be on the road to treatment that will "kick cancer's butt" and lessen your pain. I am sure that saying you are "shell-shocked" is an understatement but I agree with Barbe 1958...you are showing admirable strength. And to  xxAnna, it is so frustrating for those of us with chronic pain that concern of mets is ALWAYS in the shadows. As if the pain itself is not enough, it is hard to face dealing with the tests and possibly actually finding out "our worst fears are true" and that more or chronic treatment might be in store...seems like a lot of us have delt with the "run-a-round" and miscommunication way too much, which doesn't make it any easier! Problem is that ignoring it will not make it go away or not be there. Hope you also get some answers soon. 

Isabella4

Sue...so sorry you got this news. I was hoping you were in for slipped discs,...you must now get into fighting mode, and stand up to these UK doctors..they tend to try and fob you off, as the system just cannot cope.

My Dr and my bc nurse have just looked me in the eye and openly lied to me. I always try and spend hours researching what CAN be done, and let them know I know, and so far its worked for me. I have had them lie to me, and say a treatment isn't available in UK, when I am absolutely sure it is, and come straight back at them and say I know its available in UK, and I WANT it. They have to backtrack, and huff and puff a bit, but so far I have got 3 things I was told I could in NO WAY have.

Keep posting, and let us know what they intend doing, most of all be the awkward patient, not the mouse !!

Isabella. 

chainsawz

Sue - I am sorry you are dealing with this.....when I first found out about my dx (started off at stage IV 2 years ago) it felt like I was standing on the deck of a ship in the middle of a storm.  It took a while, but I learned to stand up on this constantly moving ground....I only fall down occasionally now.  I always say you get used to the "new normal", but it will take a while.  I would cry in my car on the drive to and from work and in the shower because I didn't want my family to know how scared I was...... 

Once the initial shock wears off you will see that there is still tons of life to be had and enjoyed!  I had brain mets treated last year and I am sitting at work writing this....haven't missed a day of work since I had my brain zapped last year.  Anything is possible.  Hang in there and just know you are definitely not alone.    lisa

sueUK

You ladies really are the ultimate inspiration do you know that....of course you do! I really would be a blubbering mess without you...its just that with you, I know you understand..and that is priceless!

I have to confess that a small supply of valium that I had tucked away has helped too...anything that takes the edge off is okay in my book, particularly in these first days of thinking....what the heck happened there???  Barbe, you are right in one respect - I did expect 'this' once that letter fell on my mat on Friday, but prior to that honestly...I was convinced of the slipped disc theory and just wishing they would get a wriggle on with the steroid jab! I do agree with you Billie, although we shouldnt be overwhelmed by every little twinge and immediately think mets...when things are not right - get them checked...we know it makes sense however scary it can be.

I know I have a lot more to find out and learn about what I am dealing with...its the CT scan Im waiting for now, that is on Thursday to look at my chest and liver, but can you girls clear something up for me. When you refer to bone mets, do you mean in the bone marrow as has been implied with me, or lesions on the outside of the bone - or does the term cover both? The bone marrow thing sounds more scary to me to be honest..is it?

Isabella, my UK friend...one good thing is that our new government has just chucked a lot more new money into the cancer pot...phew, just in time! I know what you mean though - the times I have had to tell them what treatment I need and what I am entitled to...not with BC issues though, I have to say I had no complaints with my treatment there.....well, post-op pain relief was a bit of a 'sore' point, but the speed of tests and treatment was tops. I can only hope for the same this time.

Am I okay sticking with my thread here...even though i have pretty much been diagnosed (and still worried!). Only Im not emotionally ready to take myself over to stage IV yet, if thats what I am...Ive not figured out the stages properly yet, but im guessing I will know ALL about it soon enough!

Can I apologise...you might have noticed by now that i cant half waffle on! I will leave you in peace now and wish you all a good day across the pond, and sweet dreams for those on this side of the pond!

Love, hugs and healing vibes, Sue x

squidwitch42

Sue,

Oh honey...well we will hang right in with you. Isabella, it sounds like you can be an excellent advocate within your NHS system. I am an avid reader of Home Mail online (don't laugh) but I can hang with all of your society gossip (Katie Price anyone? anyone? why did everyone leave the room?) so if you need any distraction, I am here. I have read much about NHS, so I am glad they are at least being pro-active.

when I saw chainsawz swoop in, I was glad, as she has good stories to tell. Leah_S too.

after we get you through, it sounds like we need a back pain support group. billiegirl, I am sorry your back is so bad.  do you have stenosis as well?

sueUK

Squid.......Katie Price.....oh dont! Now there's a gal with more than her fair share.......lol!

Now then, our NHS might come in for a lot of stick at times, and its not perfect by any means, but there are times when...excuse the pun...its just what the doc ordered. On visiting my GP with 'concerns' I was seen by a breast surgeon within 2 weeks and on that one day I had the mammo, ultrasound and biobsies, and pretty much a diagnosis there and then. Two days later it was confirmed and on that day, the date was set for my mastectomy....no dilly dallying about, and no worries about insurance. I believe that that time-scale is the standard of care for the UK. In addition, all resources regarding reconstruction are available to us, with cosmetic corrections to the good breast offered if needed to even things up.

I believe where we have fallen down over the years is in the availability of certain drugs, for example, Im pretty sure Herceptin has only been allowed on the NHS for a short time - women had heck of a fight for it before then, and even then it was a postcode lottery. I think it is generally available now, but there are problems with cancer drugs for other types of cancer, with the decision makers (penny pinchers) considering another 6 months of life not a cost effective use of the funds!?!  However, Im sure its stroppy people like Isabella (just kidding!) who get these things changed for the better.

Anyway, here I go waffling again....I was only going to comment on the kate price thing lol!

Hugs, Sue x

squidwitch42

Sue,

Sounds like they were all over it. I had the same experience in the States, but only because I had insurance. I work with the uninsured and under insured, and am a huge proponent for health care reform. Anyone who has issues with it clearly has never had a need for it. It is one of the few topics I will come out swinging on. (imagine me in the boxing ring, dancing about, with "kicky feet" for maximum intimidation.)

So, can I tell you how long it took me to learn what a WAG was? My high school English teacher told us a funny story, where she waltzed into a hair salon in England and asked for a Shag. Which here in the U.S. used to be a horrific haircut that Mrs. Brady from the Brady Bunch wore. It's one of those irretrievable haircuts that you basically have to start over if you want anything else.

Here is another funny, your crisps are our potato chips. Fish and chips for you all would be our Fish and French Fries ( I think.)

My family grew up with Upstairs Downstairs, which I believe is being re-made? I love love Dawn French and Jennifer Saunders, Ab Fab, The Vicar of Dibley, and their compilation work. Also a big fan of Are You Being Served, which may be Grace and Favour? Or was it Good Neighbors with Penelope Keith sp? Love our Mrs. Slocumb (Molly Hudgins) and To the Manor Born. Ahhhh, memories. But I truly would love it if they would re-run Upstairs Downstairs one more time.

I hear our Golden Girls go over well across the Pond

Oh, and I cannot forget Creature Comforts and the Wallace and Gromit with Nick Park. And not sure if you ever heard this expression, but a friend of mine awhile back who was from England would say, I'll crush you like a grape!

Hugs,

Traci

squidwitch42

oh, and one more...

same friend always said, Toodle Pep! as his good bye. Never understood it.