Arthritis vs. Bone Mets
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Hadley, I've been 'talking' to you on your other thread and thank you for posting your story here. I'm pissed that some docs think that just because you're stage 1 with no node involvement means you won't recur. What old thinking is THAT???? Also, Papillary is already a rare cancer (like me) so it won't behave like they expect it to. Haven't they heard of the bloodstream for the cells to travel by?????
I'll be watching to see what comes out of all this. You are already in my prayers....
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I'm going to dare to say something here that might cause a HUGE backlash, BUT....I agree with you Hadley!! I wonder how many of the stage iv ladies aren't stage iv!!! Do you ever notice that some of them are NED a more lot than those of us in other stages??? I often wonder if something turned up on an original test, they had chemo and because that 'thing' disappeared (fly on the film?) they are 'cured' so it must have been mets!!!!
I know that there are many, many of stage iv's suffering deeply and I have lost some of my friends to stage iv, so I'm not trying to start a riot here...I'm just sayin'. There has been a number of newly diagnosed stage iv's that have pushed for a second opinion and found out they were a lesser stage! Emily in Ontario is one of them!!! I don't know if Canada is less quick to say stage iv and pushes harder or what.... but I read 'stage iv from outset, but now ned after one treatement, woo hoo' yah, right.....
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You go girlfriend!!! We're right behind you. I know some mets are hard to biopsy, but I know I'd push for it. A hard surgery is easier than months of chemo!!
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i have asked and asked for a bone biopsy, but get the run around every time...go for it hadley.
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As a matter of fact ladies, I am waiting to hear tomorrow the results of an MRI I had done last Thursday on my full spine. In 2009, 1 year after mets dx, cat scan revealed a new 'lesion' on my cervical spine (neck). Two days before Xmas was told to get to big city hospital immediately for MRI, as Drs didn't know what the lesion was; arthritis or met, emphasis to me on arthritis when I objected to leaving home at that time of year.
After the event the medicos said they were worried about exactly where the met had infiltrated, spinal cord being the worst case scenario. The met was not in the spinal cord but was given 10 rad txs.
Last December, 1 yr later, I experienced 'tingling' like pins and needles in my neck, at Feb app't with Onc, I informed her of this new development, but she didn't seem concerned.
Due to distance and travel difficulties, my next app't was in June. I told Onc that the tingling had spread so she ordered the current MRI just completed.
Looks like yet another long sleepless night, ho hum.
Sheila.
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Geez Sheila!! With your prior bone mets diagnosis, you'd think they'd take you a little more seriously!!! We'll just wait here with you, sweetie.....
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Thanks Barbe, I appreciate that. Got no-where today, my Cancer Care Co-ordinator, (liason between Onc, hospital and I) Michael, has been trying to find my MRI results within the system, and then couldn't find a/my Onc to analyse the report and let me know the outcome and what comes next.
He did suggest that I should go to nearest Hospital at first sign of weakness in legs/back etc., they would fly me to Brisbane if need be.
I thought that a bit scary, so have been covertly trying to get things done w/ DH realising, sort of like being in labor, before leaving for the hospital. Don't like to stampede the locals if you know what I mean.
Sheila.
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Aussie, I have everything crossed for you and prayers coming your way too. I sure hope you get those answers soon!
Love n hugs. Chrissy
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Thanks Chrissy, got all my extremities crossed too! Really don't want to be where I'm at right now, thought I would have a bit longer before reality bit me.
Sheila.
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Aussie, the whole neck thing is always a bit of a worry and with any degeneration for any reason, they are always very aware of possible consequences of slipage of the disks which can cause pressure on the spinal cord and effect the whole body and that is why they are so insistant on you going to the hospital at the first signs of weakness etc. as that can tell them that there is pressure on the spinal cord and something needs to be done to relieve it urgently. I know that's not what you want to hear but it is the truth of their concern. I am presuming that you will get somee word from your onc tomorrow....well I'm hoping you will so you can get past this limbo you are in right now. Just know that I'm here for a while yet and you are on my mind.
Love n hugs. Chrissy
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Hugs Chrissy, thanks, hope to know more by this time tomorrow, could be having rads already.
Sheila.
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Aussie, I wish I were closer so I could come and sit in your kitchen with you and have a cup of tea and I could also give you the big gentle (((((((hug))))))) I know you need.
Love n hugs. Chrissy
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You'd think that once we got to this point that maybe all our wishes could come true, wouldn't you?
Maybe that is a wish in itself, huh? I'll accept all the hugs I can get and raise you ten baby grandson hugs I got today unexpectedly. I could have hugged the life out of that little fella today and he is such a happy little guy, tries to talk back to me at almost four months.
He was wedged up against his mothers pelvis and came out with a distorted back of the head pulled down towards his left shoulder. I worried that he might have major problems in his future but his skull is reshaping itself to normal shape and he is holding it upright very well now.
It's got me beat how with 3D ultra sounds and such, no-one noticed that he never moved from that spot in at least the last 3 months. It seems they don't physically feel the placement of the baby in utero these days and I'm not sure that's a good thing.
This was a happy day as well as a worrying one, so I will try to focus on the happy part tonight as I close my eyes.
Sheila.
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Shiela, those baby grandson hugs are the most precious of all hugs because those are the ones given unconditionally.....just because.
Sometimes I wonder if all the technology that is available to the medical fraternity is a good thing or not. Sometimes the old ways were and are better purely because they were literally hand on and when the technology began it's revolution in our hospitals, it was still hand on as far as the best doctors were concerned as they didn't totally trust these new fangled machines to do the job right. Now days, the docs put all their trust in the machines and the hands on aproach is a thing of the past. You'd think that they'd acccept somewhere in the middle, a little bit of the human touch and well as a little bit of the machine.
So glad to hear the his little head is returning to normal and he is showing no sign of problems....not that it would make one iota of difference to you or his mum.
If wish were grated, we would both be 21, slim and gorgeous!
Love n hugs. Chrissy
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Oh Yeah, Hallelujah!
Sheila.
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Still here for you Sheila!!!!
I fell in a ditch yesterday, beside my bro's driveway. I had my hands full of pool stuff and a cheesecake, turned to avoid the closing car door and there was nothing under my one foot. I started to fall, made an executive decision, and pushed off with my other foot to make it a jump. Landed hard, about 3 feet down, but I'm fine!!! All sorts of things could have gone horribly wrong with that fall and I thank God they didn't!
Just a little story to tell to while away the time while we're waiting.....
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Barbe, what happened to the cheesecake? Oh glad to hear that you're okay too!.....lol
Love n hugs. Chrissy
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Cheesecake made it safely!!!! I get a shiver or two when I relive it. Seems like such a small deal, but I can remember the exact second my brain said 'push off to make it a jump'. That meant I fell on my feet and not on my hip or back.....yikes, could have been so bad!!
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Things like that always happen in an instant and that's all it takes to create a disaster. So glad you thought to jump!
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Haven't been on this thread for awhile. As Barbe mentioned above I was told in December that I had bone mets in my spine according to my bone scan. I then went on to have an MRI which said the "suspicious" lesions from the bone scan were not mets and the "non suspicious" lesions were now suspicious for mets. I then had a bone biopsy which was negative for cancer. I have just had my second MRI which says the "lesions" are unchanged from the previous MRI and still suggestive of cancer. I have never had pain in the area in question and tumour markers have been negative. My oncologist says she feels since I had fairly aggressive chemo and this did not make any changes in the "lesions" she feels they are not cancer. My questions is...well then what are they? She didn't seem to have any ideas and didn't think there was anyone she could send me to to find out. I was told 20 years ago I had degenerative disk disease but have only ever had pain in the lower back , not in the "suspect" areas. Anyone ever had any experience like this or any suggestions? I sure wish I had some answers.
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Barbe, what a scare. Glad you didn't hurt yourself.
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Wow, ladies I just found this thread and I have to say I had this EXACT same question cross my mind the other day!! I just had a bone scan (my first) last Wednesday due to the pain I have been having in my lower back and hips. I'm only 34 and my god do I feel more like I am 80 these days! I can't stand up straight from a sitting or lying down position for a min or two. I have to stretch and slowly ease my back upright. Moving and being more active does not provide any significant relief and on the days after a lot of activity I find I am in more pain. NSAIDS like Aleve don't touch it and vicodin only makes me care a little less about it, but it's still there.
So I called the oncologist's office on Friday for my results (I plan on getting a hard copy tomorrow from my primary physcian) and it said no sign of metastatic disease but I had some uptake that led to mild to moderate bone degeneration in basically all of my joints. I remember her saying shoulders, hips, knees and ankles I think. Mild to moderate bone degeneration at 34??? So after I got off the phone with the nurse I called my primary to set up an appointment. I go to see him in the morning and will be requesting a copy of the report as well. Then the more I thought about the term uptake, the very same question popped in my head. How do they tell the difference? And why do I not have pain in any of the other joints indicated and just in my hips and lower back?
I don't know, but I am on a mission to figure out this pain! I'm too damn young to feel this damn old, lol!
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thinking of you aussiesheila...and your results.
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Aussie, have you heard from the doc? And? Talk about being on pins and needles! Hope the answer is a good one.
Holly, are you on one of the Hormonals? One of the SE's of them are joint degeneration because of the lack of estrogen. I had arthritis in my knees before I was Dx'd with BC. Now I have arthritis in just about every joint but I do take a heap of suppliments to help slow down the degeneration. So far I'm doing just fine with the odd twinge but the knees have worn to the point that they need to be replaced. I keep getting told that I am young for this procedure and I guess I am when you look at the mean age but at 59 or 75 if they need to be replaced, they need to be replaced.
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Chrissyb - Nope, no AI's. I'm ER and PR negative. I did see an article awhile back perusing through a magazine in the oncs office that I found again online. I plan on printing it and bringing it with me to my primary doc tomorrow. I want to ask for a test of my Vit D levels to see if that could be part of the problem. The article is here for anyone interested: http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1587 Not really sure what my problem boils down to yet, but I plan on trying my best to figure this out! So very sorry to hear about your knee problems!! Yikes, as if breast cancer wasn't enough.
Aussiesheila - Thinking of you and wishing you all the best!
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Holly, Vit D was one of the supps I was referring to that I take and have done for a lot of years now and I find that when the level is up I have less pain than when it's down. The pain level for me is one of the markers that tell me it's time to get checked again and perhaps crank up the amount I take. I am increasingly hearing that those with BC are low in Vit D...so, yes, please get your levels tested. Good luck!
Love n hugs. Chrissy
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Thanks so much, Chrissy! I have been hearing the same about Vit D and figure that's a good place to start! It's reassuring to hear that it helped you. Best wishes to you and all of those who have found themselves with this same predicament! I'll be sure to post again once I know more.
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Emily, thanks for coming in and posting. I hope I didn't offend you by using your name, but I wanted others to hear your story!!!! So frustrating all around....
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Thanks for all your positive vibrations ladies!
Nothing to tell yet, I had to txt (No News Is Good News, Can I Relax Yet?) my CCC at 4pm to get things moving along. Onc rang me 15 mins later, said doesn't appear to be any new growths as per Radiology Clinic report but..............they didn't have copies of my last MRI's to compare them with.
So............Onc has sent for film/disk copies of latest MRI, will present them and all past scans, including the first ones taken, at a Radiologists meeting at the main hospital sometime in the next two weeks. It appears T11-12 lit up and I may/will need rads in that area in the near future. At this current rate, they will have to wait til early Oct, when DH comes home from his next work stint.
If I'd had some sort of booze in the house, I might have over-indulged myself tonight. Note to self...............I need some serious fun! (Is that an oxymoron or am I some kind of moron?)
Sheila.
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Okay, so is that good news, bad news or just news? I don't know how to take it...
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