Hi,
I spoke about joint pain in another thread and now can’t find it anywhere so I’ve started this new thread, with the hope someone can reassure me…
I thought it was tamoxifen related joint pain but it appears not to be, I was refered to Rheumatology (not as a bc referral but as a general patient, just realised this today) so now the worry begins. Had a x ray and bone scan which showed hot spots in ankles and back, needs a second opinion so have appointment next month. I was happy that the results were not bc related but am thinking would they have checked for anything bc related??? Am I worrying today over nothing?
Does anyone know if they would automatically check for bone mets? Hopefully I’m just having a silly moment xx
Just bumping as I want this to appear in the latest posts section xx
Hi Katy, saw your post and felt I ought to check it out.
Firstly the Tamoxifen and Join Pain thread is here: Search Results | Breast Cancer Now perhpas you can bookmark it in your favourites?
Oh, I wish I could say something useful about your hot-spots but I can’t. All I do know is that my BCN told me when I had a bone scan right at the start of my treatments, that most hot spots are ‘something and nothing’ and that if she dragged in a dozen people off the street who were otherwise fit and well they’d have bone hot-sopts. Old injuries (especially below the knee, my lot didn’t scan below the knee for that reason) show up, as do all sorts of other wear and tear effects. It is obviously worrying for you, and a horrid, horrid wait to find out, but hopefully it won’t be the anything sinister.
When I had back pain early on after treatment ended, my BCN asked me a series of questions that led her to conclude it was ‘the wrong kind of back pain’… I hope the same is the case for you.
In the meantime, gentle hug, fresh lace hankie and a virtual cupcake to keep you going. <<Katy>>
Now scared witless received appointment this morning from oncology, which I thought was odd because I shouldn’t see onc until next year, just realised it’s an hour and 15 mins later than my second opinion with the bone man!
Can anyone help reassure me please, feeling real scared now xx
So freaked out double posted xx
Hi Katy
Hopefully your onc wants to see you to reassure you that it is nothing to worry about - would you beleive anyone else? If it was bad news, you’d think that you’d see onc first?
As Revcat says, most hotspots are just wear and tear. Not much help and I know that it won’t stop the worry.
Big hugs
Dx
Thank you D, I just got the letter and posted on here right away, had to get it out there!!
Don’t want to say anything to family yet, as you say in all probability you would see onc first.
Just got a fright, thank you once again, who knows it may even just be a bizarre co incindence.
This is the “rational” me speaking now…deep breaths xx
Hi Katy, big big hug for you, I’d be shivering in my shoes too. My rational head says why would they send you to an onc (or at least arrange it) before getting the second opinion? Might it be they are finally conceding the Tamoxifen connection and sending you to the onc about that?
Hopefully it’s just a weird and scary coincidence. Will keep thinking of you as you wait and hope as hard as I can all is well.
I just don’t know RevCat, is this normal?? I have no idea, because I was referred not as a bc patient, do I have to see the depts I have been referred to first as protocol. If it was bad news would they just send you to onc and miss second opinion? I’m worried because appointment with onc is only an hour and a bit later and as I said shouldn’t actually have appointment until next year, so feels a bit odd. Let’s go with weird and scary coincidence for the moment xx
Ps thank you for the kind words and hugs much appreciated when I know you have your own concerns, fingers crossed for us both xx
Katy, I can only tell you my experience- but it may help. Had bad joint pain worse at night (hips) 1-2 months after finishing chemo. Phoned the BCN expecting an appointment with the onc, but within 2 days had bone scan appointment for a week later without being seen by doctor first. (Meaning they react quickly if it sounds as if might be mets) Then a long wait-it was over Easter bank holiday and then the Royal Wedding weekends, spoke to BCN to learn when I might see someone, was told my result was in but hadn’t been discussed in multi disciplinary meeting yet. Aaaaaarrrrgggh! Then she phoned me the next morning to say “Arthritis both hips, no metastases”
I didn’t know then that a bone scan could show anything else other than mets but it can, never saw my onc-and didn’t get referred to Rheumatology either.
Hope they are just looking after you very well and that your get good news soon.
Lavender
xx
Hi Lavender, yes it does help because I am thinking now that if it was anything bc related I would be seen a lot faster. So feeling much calmer today. Just went into panic mode yesterday morning!! Who would think that you would be relieved to have arthritis? Hope you are not in too much pain, thank you for your kindness, it is much appreciated xx
Well, had my yearly appointment with surgeon today, everything great, he will arrange a mammogram as procedure nothing ominous. Spoke to him about my appointment with the onc in less than a fornight and he said it was probably an error so could I give them a phone and cancel appointment. Decided just to walk down to Oncology, told the receptionist what had happened and said surgeon said to cancel onc appointment. Receptionist loooked up comp and said I shouldn’t cancel, onc on holiday so she said I should just come in as arranged, an hour after I see bone man!
Aaaaaaaaaaargh the crazy thoughts have started again, rational says mix up, irrational says scary. Any more words of reassurance truly welcome xx
Can’t you contact the hosptial again Breast Care Nurse or your doctor’s secretary and tell her why you are worried and you do not understand as one person telling you one thing then the receptionist telling you another. Don’t waste time worrying. Get on the phone. There is no need for you to hang on any more. Hope this helps. But remember it is just my opinion. Other people may have different ideas. But they have no idea just how it can mess with our heads when we do not know what is happening. Hugs to kaytc, from V
I’m with Scottish lass, phone your BCN or the oncs secretary and get them to find out what is what. I know I was reduced to a quivering wreck when I went into my GP surgery to ask if my results were back from some tests and they said ‘oh yes, you need to ring the nurse, no the doctor… tomorrow at such and such a time’. Suffice to say I put two and two together and made a very large number, but when I did phone next day they said ‘all clear’. What is SO ridiculous about it is that it would have been physically impossible for the tests to have come back positive, but this BC messes with our minds.
Go on, pick up that phone…
Big hugs for you from me.
Thank you Val & RevCat for your words of wisdom. You are both ofcourse so right when you say it messes with our heads.
I’m back off to hospital tomorrow not bc related, have a few other problems and just don’t feel I can deal with making that phone call, you see I was so positive today after seeing surgeon and in the mind set that it was just an admin error so when I spoke to the receptionist and she said not to cancel it knocked me a bit. So so stupid I know but I am scared. Usually when you say you want to cancel an appointment they just say ok then do you want to make another?
I don’t know just a bit messy tonight, tomorrow I may feel differently, thank you loads xx
Katy, the poor receptionist at the desk wouldn’t have the faintest idea why you had an onc appointment, but she’s probably of the opinion that as an appointment was made, it should be kept unless an onc or secretary cancels it, because surgeons know nothing at all, as they’re part of a different department. The poor receptionists aren’t paid enough to THINK what their words might do to our heads.
I suspect your onc wants to give you a second opinion to confirm what the bone man says, and here’s how I visualise the bone man’s appointment: “Mrs TC, we’re sorry to have to tell you…” (by which time you’ll be a gibbering wreck!) "… that you appear to have the initial signs of… " (cue katytc in tears on the floor) “…early arthritis, but we can give you some mild anti-inflammatories that’ll sort you out.” (and katytc crawls off to the loo to find some toilet roll to blow her nose and wipe off the mascara from her cheeks.)
Then your Honk will speak to you to reassure you a second time that he has no reason to see you for anything, but that he wanted to tell you that in person.
Well that’s the image I’ve got in my head.
And after that, I can see you quivering in a corner of the nearest pub with something with a bit more poke than lemonade.
Great reply Choccie!
Hi Katy,
I know just how you are feeling because I went through this same process just over a year ago. Had just finished rads after WLE when I got a letter recalling me “urgently” to see the BS. Picked up letter in the evening as I’d been out for the day. Appointments’ secretary freaked me out totally by saying “can’t tell you what its about just that its urgent and you need to come back in two days time.” Mind racing by this time, I’d worked out the only results I’d never had back were from a bone scan I’d had purely as a “not because we think your shoulder pain is connected but to put your mind at rest.” Decided it must mean bone mets.
Sure enough, had the appoinment, and BS pointed out a couple of hot spots on my lower back. He also said they were “very unlikely to be bc related (wrong pattern and in the wrong place to be bc spread) but that, once they’ve flagged up they HAVE to check them out.” So I had an MRI, more time waiting and worrying for results. Woodies will confirm that I was climbing the walls. Then another appointment in which BS told me that I had degenerative disc problems and osteoarthritis. Not usually good news, I clearly won’t be limbo ing any time soon, but the BS had a broad grin and just about danced me round the room saying what excellent news.
So, after this long ramble, here’s what I think may happen. For BS read onc (I didn’t have chemo so my care is from BS not onc). Your onc will say “if there are hotspots on a bone scan I have to check them out just as a precaution.” He/she will quite possibly refer you for an MRI which is what they do and you may have a scary wait for results - although my BCN was a star and both had my MRI done within 3 days and hustled for the results so that I only waited a week to get them back. Results will come back saying old fractures, arthritis etc.
Oddly enough I was working with a set of old sports pros when this was going on and they told me bone scans are notoriously over sensitive and flag up anything like that. Lots of stories about people who went in to get their knees checked out and came out with hotspots on their ankles, hips and so on.
Also the BS’s comment about “wrong pattern” is interestsing. I didn’t know there was a typical “pattern” but he said bone mets tend to radiate out from the original bc and be a spatter effect of lots of little areas. One or two hotspots which are remote (eg back, legs or whatever) don’t fit that pattern but he still HAD to follow it up according to NICE guidelines. And knowing that it isn’t anything, of course I’m glad that he did, just to be safe.
Pretty sure something similar is going on with you. You’ve rung some bell in the system and now they need just to discount to be sure that it is just arthritis. Try to hang on to “wrong place, wrong pattern but they HAVE to check it out.”
Sending hugs xxx
Thank you CM, you made me laugh with your scenario, that could well be me!!
Mary grace, thank you too, I have permanent nerve damage from lower back down to big toe, oesteoarthritis in my hip, scar tissue damage bulging discs, the list goes on…so it is very feasible that it is arthritic. Rheumatology were going to send me for an MRI then changed their minds and are passing me over to orthopaedics. Today I am thinking that as you said I am a “bell ringing in the system” and I’m being checked over by everyone. So very glad that yours was nothing to do with bc. You know exactly how I’m feeling that horrible jittery way when a bit of fear is introduced back into your life, so I am going to hang on to your thoughts and experience, you have made me feel better because it does seem similiar, thank you so much ladies, your kindness overwhelms (tears beginning to flow over laptop) haven’t cried until now so it will do me good, get it all out and calm down xx
Great replies from CM and Mary Grace… and I’m sure they’re right. Better to be ‘over checked’ than they miss something. Now, dry off that soggy laptop, borrow a Benchland hankie for your eyes and go and treat yourself to something scrummy.
Big Hugs.