Worried about bone symptoms- advice please

Hi ladies
I’m just after a bit of advice really. I finished chemo last month (3fec +3 tax) + that’s it for me treatment wise as it was triple neg. Had mx early feb clear margins so no RT needed. I’ve been paranoid about spread all along if I’m honest- especially once I googled tnbc- but my onc refused to scan me as she is confident that we caught it in time. It was grade 3, 39mm + just 1 node affected.
Anyway, I was havin some pain in my right side tiwards the end of chemo + was worrying about liver mets but I’ve had similar pain on left side recently also. I’ve had a good feel + my ribs on both sides feel sore to touch as if they are bruised. Only in a certain place though. I’ve also found a (very) small lump on right rib- feels like a bit of grisle + it moves when manipulated. Probably nothin but I will mention it at clinic on weds. I’ve also got a really sore knee- this gas been going on for a while but it feels more like an injury coz it’s clicking when I walk etc. The final straw came thurs when I found a small lump on the bone on my hand- feels hard like bone but not painful at all.
I’m waffling now (sorry!) but basically I’d appreciate any advice about bone mets- eg. Can you get lumps ? Is the pain constant or does it come + go?
I am havin bone scan + full body ct scan next month as I am planning an elective mx on other side so tge docs have agreed I should double check that I am clear before proceeding. I plan to ask for this asap when I see the docs on wed. I should be feelin happy + relieved that chemo is over but I know I won’t relax until I have tge scans. I know they only provide short term reassurance but I’ll happily settle for that at the moment.
Thanks for reading.
tina x

Hi Tina

Just to try and give you some reassurance, none of my bone mets are noticeable from the outside, or have any lumps. With regard to your hand and knee I was told that lower limbs, hands and feet (and to some extent knees) are unlikely to appear as mets, as the first sign of mets are usually in the centre section of your body e.g spine, hips, ribs. I realise that you mentioned rib pain, but this could be a number of reasons.

I was only diagnosed in May and my pain only in my hip, is only when I twist it to the side. It isn’t constant and doesn’t come and go.
I hope that you get scans etc to get it checked out and give you peace of mind, it’s easier said than done, but try not to worry too much, it could be lots of things.

Fingers crossed for clear scans!

Nicola xx

Thanks alot for your reply nicola. Sorry to read about your recent diagnosis but glad to see it’s not causing too much pain + discomfort. I’m hoping the aches and pains are chemo related- apparently tax can cause lasting bone pain. It’s the ribs that worry me really as I’m sure I’ve twisted my knee. I think I’ll only relax once I’ve had the scan!!
Thanks again,
tina xx

H Tina
Sorry to hear you are worried about bone mets. I have bone mets on my hip and a small one on my spine but did not notice any lumps when they were diagnosed - or even now. There was a dull ache but not noticeable all the time (in my hip) but once I knew where they were I was aware when pressing the area that I could feel an ache/soreness. If you are worried it is certainly worth speaking to your onc this week and seeing if your scans can be brought forward. At least then you won’t be fretting until next month. Good luck
Nicky

Hi Tina,

Sorry to hear you’re having some pain and are worried, have you spoken to anyone here on the helpline? If not, then the staff will be only too happy to talk to you and try to help you with some of the questions you may have before your visit to your specialist team.

Lines are open today until 5pm, calls are free. Hope this helps a little.

Take care,
Jo, Facilitator

Hi all im new to this…
Im 31 years of age I was diognosed with BC july 09. i had my first op in aug 09 to remove the lump and surrounding tissue and some lymth nodes, when the results came bk from the lab they said it was in my lymth nodes and there was another 2 smaller lumps found in the surrounding tissue. I then had to have a mastectomy and breast reconstruction in sept 09 and lymth nodes removed. iv had 6 sessions of chemo, radio theropy and now having zoladex injections and tomoxifen for 5 years. in the last few days my knees and ancles have been acheing and really making a cracking noise is this something to worry about???

Any feed bk would be greatly appreciated
Esmae x x x

Hi Ladies thanks for your replies. I am awaiting a bone and ct scan in the next month or so- my consultant is not concerned about the bone pain as it is common with taxotere apparently. The 2 lumps by my ribs have been tested using and FNA and came back as lypomas (fatty lumps). The docs are more worried about a rash that has developed on my new boob- its been there for several weeks now and is getting worse. Only pooped up once chemo finished and it hasnt responded to anti biotics so isnt an infection. Saw my onc today who is worried about skin mets/ recurrence- although she thinks it doesnt look typical of that diagnosis. Going for a biopsy tomorrow and feeling very nervous.
Esmae the general advice is to report symptoms that persist for several weeks so leave it another week or so then maybe contact you BCN? Is there nothing else that could account for the new pains? Hope it passes :slight_smile: x
Nicky thanks for your advice. The scans have been requested as routine not urgent as they are doing it more for my peace of mind (scans not offered here unless at least 4 nodes affected). Given my new worries about this damn rash, I will be insisting on scans being brought forward when I see the docs tomorrow. Failing that I will use my private health. Hope you are feeling well and your bone mets are controlled and not causing you too much discomfort. Take care x
Thanks ladies
Tina xx

Hi everyone

Just seen this thread and found it interesting…I have always been tender when pressing any bone (have been on Arimidex for 5 years) I dont know if it is just a coincidence but a few weeks ago I requested blood tests from St Marys to see if my cancer was genetic but then started to feel as my bra was rubbing on both sides and when I pressed every part of my ribs, front, sides and back all was tender. The more that I think about it the more I feel it, I know that I need to do something but was just too terrified!

Does anyone know if a normal rib x ray would show anything

Much love
Debbie x

Hi Debbie

I think normal x-rays can show bone mets, but they usually use more specialised ones where dye is injected. My bone mets were diagnosed with a nuclear medicine scan. I was then sent for an mri of and CT scans. If you are worried get them checked out, I put off my painful hip for too long! However to put your mind it ease (if that’s possible) mine (apart from my hip, but that’s because it’s a joint)didn’t and still don’t hurt or feel tender from the outside and I have them in a few places.

Are you sure that you don’t feel sore around the bra line because it’s too tight ? :o) I know that that sound a bit rude, but since being on AI’s I have changed shape completely …unfortunately and my bra size constantly seems to be changing.

Take care and let us know how you get on

Nicola xx

Hi Nicola

Thank you for your reply. When I found my second lump prior to having my mastectomy they did do the bone and CT scan, I had forgotten about the bone one until you mentioned it. Its just that I work in a hospital and just wondered if I could request a ‘normal’ x ray, (theres a method in my madness) it would mean that I could just hide in a corner for a while knowing the results before I was hauled into the system again…(How totally sad and stupid is that?) Even though it is nearly 6 years since my diagnoses the thought of treatment again makes me feel like being sick…I know that I have to do something just to eas by mind one way or another.

Its funny that you mentioned the weight thing but just prior to feeling this pain I had been on the celebrity slim programme and lost 17lbs in 2 months, I had been off it for about 2 weeks and eating silly again when all this kicked off, so in fact my bra size had probably gone down a notch and the bra might have been a little big.

PS I think that you profile picture looks wonderful, are you sailing?

Much love and thanks
Debbie x

Hi Lancslass

As Nicky says some bone mets will be picked up on an X-ray, but a bone scan can pick up activity long before there is anything visible on an xray. I don’t know if my experience is typical, but the radiologist has always shown me the bone scan on the light box as soon as the scan is over, and asked me about any areas where hot spots show up. This is because they need to know if anything else could explain the hot spot - so I was questioned at length about various shoulder and back problems I’ve had over the years - so although I didn’t get the official report for a few days, I had a pretty good idea of what was in it. I’m wondering if anyone else has had the same experience?

finty xx

Hi Debbie and Finty

A normal x-ray does show things up, as this is what I was given before being referred for the others. Although my hip mets, which was where the x-ray was directed were quite extensive by that point.

Our hospital don’t discuss what they see, I have asked, but they won’t discuss development of bone mets, but they have asked about other underlying probs I have, like abnormal kidneys, whilst scanning me! With regard to waiting for results, I had my initial x-ray on a Friday afternoon and my GP was alerted and told me the ‘news’ the following Monday lunchtime! so results can be fast-tracked if you need them to be!

With regard to the sailing picture. I was very lucky to be able to take part in a ‘sail 4 cancer’ sailing experience this July. What a fantastic day, for all of the family. It is a charity who organise sailing treats for families enduring cancer. I strongly urge you to apply if you think it is your ‘thing’. We had an absolutely phenomenal day, so much so that my husband has begun to actively fundraise for the charity. I can dig out the website address if you need me to, but putting ‘sail4cancer’ into google should get you there…apply soon for next Summer, it is popular.

Regards Nicola xx

Hi Girls

Well I have surpassed myself today, I hve been prodding and poking all day at work and needless to say every part of me is now painful.
I have taken iburofen and paracetamol and that has settled it. I am seeing my GP tomorrow who says the he will give me a referral letter and X ray have said that they will do the dreaded…I am soooooooo sick of worrying…it just goes on and on

Many thanks everyone for all advice which has been gratefully digested.
Much love
Debbie
x

I saw my GP last night as I had asked for a bone referral request but she thought that I should first try some new meds as I am on biphosphates and arimidex and she thought that they might be irritating my stomach and gall bladder??? She was the one to refer me after finding my lump so I am going to try these tablets for 2 weeks then go back if no different.
Debbie xx