Well I went for my radiotherapy planning session Today and was told that they were intending to start it that afternoon over 4 sessions. They did some images (or whatever the machine does) and drew all over my hip area then waited for the oncologist to confirm it. The radiographers then came back in and told me to get dressed and wait in the waiting area.
Three oncologists then came in to talk to me (I think one was a student)and told me that because the area to be treated was quite extensive, they feel that I would be better having the whole hip joint/top of the femur replaced instead!
They argued that the joint was affected and they worried that if I just have rads I may have future problems or being such a large area the rads may not kill off all of the cancer, so they want to remove the whole area of risk. It seems logical to me.
However I can’t seem to visit the hospital without getting further bad news and the spot on my lower spine was mentioned!!!..I had been told about the hip, neck, shoulder, chest, possible breast(if it is a reoccurance lurking behind the seroma) but they have definately not mentioned the spine before…I think that I would have remembered that!
They did say that the hormone treatment given, should hopefully be the same for the other areas and they are small areas whereas the hip is a large, quite extensive area.
So now have to go back again next week to see if the orthopeadic surgeon will agree to do the hip replacement, if not they will start the radiotherapy.
So more waiting…
Has anyone else had a hip replacement and if so, how is it? and how long until normal mobility is achieved?
Hi Nicky, what a shock for you. I think I mentioned being diagnosed after suffering a spontaneous hip fracture? My replacement was incredibly trouble free. I was up and moving around the next day…on a zimmer to start with but on day 2 was on crutches and walking up and down the stairs at the hospital…with the physiotherapy staff.
At first my operated leg was longer by a few inches but the hip very quickly bedded in and I have matching length legs now! I was sent home about 10 days after operation but that was because I was delayed as was having CT scans etc 'cos of the cancer diagnosis. I truly did not use any of the painkillers I was sent home with…not being brave I just did not need them. I was encouraged to get out and about on my crutches and after 4 - 5 weeks I no longer needed them. I did receive a raised loo seat and a grab stick for picking up anything I’d dropped. The loo seat helped a lot, made it easier to get up after sitting down! I sent both stick and seat back along with the crutches. Once a year I have an x-ray to check my replacement hasn’t moved and an annual appointment with orthopaedics. I’ve been told I can have a replacement for the replacement when I need it…the replacements normally have a ten year life so the staff think I will need it…which is nice.
I have no pain, walk unaided. I have never applied for a blue badge, I don’t need one…yet. Hope my experience helps…please message me if you’d like anymore info.
Belinda…xx
Nicky - what a shock (yet again) for you. Really hope they sort something fast and then at least you know where you’re at. I just cannot believe all the setbacks you’re having at the mo. Try to keep perky (and take heart from Belinda’s story).
Hi Nicky, sorry to hear you’ve had another shock/setback - by the sound of it though, it seems that a hip replacement may very well be a lot more beneficial for you and, as you say, it will remove the whole area of risk which sounds very sensible.
And yes, take heart from Belinda’s experience! As far as the other areas are concerned, just to say that I have bone mets all over the place, upper and lower spine, ribs, shoulder etc - horrendous pain when diagnosed but now virtually none, so other treatments can work well on small areas. I do have some shoulder pain at the moment but I really do believe this is a muscular/strain type of thing and not connected to my bone mets
Thanks for your concern and excellent advice, as usual. You two have really helped me over the past month.
Belinda - It’s great to hear that you are completely mobile and pain free. Does the hip stop any activities ? (don’t answer if the answer is too personal ) Are you able to do any exercise? I’m just a bit worried that I will never ski again if I do have it!
I have read up on it a bit tonight and am a bit concerned about how it may affect me everyday (I say this as I sit curled up with my legs beneath me!) e.g. sleeping on your back, which I really can’t do and not crossing legs etc. How long until you could drive again? and what about walks?
We as a family are quite active, my husband has just completed a 100 mile bike ride for our local hospital and I am reluctant to be ‘poor old Mum’ who can’t do physical things any more! But I suppose I would rather be here being less active than the alternative!
Lesley - it’s really good to hear that your bone mets are virtually gone, that is REALLY encouraging and I need lots more stories like that! What treatment are you on to control them so well?
I too had shoulder pain (in the shoulder with bone mets) a couple of weeks ago, I could hardly do things like get dressed, but after about a week of getting worse it just suddenly began to diminish and then completely disappeared. Hope that this happens with you!
Hi again Nicky, at first I did have to sleep on my back…the GP provided an air bed type mattress, I used it for a few weeks and it did help. Also at first I was very good and didn’t sit with crossed ankles etc etc. (I’ve forgotten all the tips, pointers) …but now I do sit legs curled up, I sleep on either side, I’ve found a pillow between the knees helps, no idea why but it seems to settle the hips nicely…in short I do all the normal stuff. I forget I have a replacement. I was encouraged by both oncology and orthopaedic dept to walk, swim, cycle etc, not just because of the hip replacement but to maintain bone health and to help stop the vertebrae closing in on each other…so I enjoy lovely long walks as much as I can…I’ve always loved walking. I’m not a natural driver but drove after coming off crutches and probably could have driven whilst on crutches. As for ‘activities’ I was told by a young nurse that ‘activities’ could be resumed on returning home. Belinda…x
I seem to have missed this thread earlier on. So sorry you are having such a difficult time again. What a shock! When I was told I’ve got mets in my spine, I immediately pictured myself not being able to walk and being pushed in a wheelchair! But that didn’t happened. I can smile now looking back. I don’t why sometimes we just think the worst.
I know exactly what you mean when you said “I can’t seem to visit the hospital without getting further bad news”. I felt exactly the same ways when I was first dx. You certainly sounded a lot more positive in your 2nd post, so glad you’ve taken some positivity out of the other’s advice.
Do let us know how you get on next week and yes, the waiting is certainly the worst for me.
Lesley, I believe you’re doing some tests to get your pain checked. Was that today? (sorry, can’t remember). Anyway, hope it comes back clear.
Hi Nicky
I also know of a lady who had to have a hip replacement after extensive bone mets were diagnosed. After (and during) chemo she still rode her horse on a regular basis, which wasn’t long after the op so it sounds like everything is possible. I’d imagine this was a shock but it sounds like your onc team are looking at the best way to treat you, which has to be a good thing, rather than putting you down for rads and various tablets which may not be as effective as an operation. Good Luck with all of this and I hope everything becomes clearer when you next see them.
Nicky x
Hi again Nicky - just to clarify, I don’t think my bone mets have actually gone (although haven’t had a scan for a long time) but what has most definitely gone is about 95% of the pain - I’m on four-weekly Pamidronate infusions plus Arimidex and three-monthly Zoladex shots.
M1yu, thanks for remembering, yes, I did go to the hospital yesterday - the stitch-like pain around my liver seems to have gone away thank goodness and I think the shoulder pain was general wear and tear - blood tests have all come back normal so not panicking any more!
Sorry Nicky, don’t mean to hijack your thread! Just to let you know though that even horrendous pain can be got under control - I don’t ride horses any more - or bicycles for that matter - but I doubt I would have done without a mets dx anyway! Hope all goes well for you, keep us posted
Lesley, don’t worry about joining my thread you are VERY welcome. I am new to Bone mets and hearing any information and as much of it as possible is what I need now…actually I think I am becoming a little obsessive, I seem to be continually on here, when I should be writing reports (I’m a teacher and it is that time again!)
Nicky thanks for the news of your horse riding friend I am dreading being told that I can never ski again
An update - The oncologist who during my primary treatment was known as the ‘elusive Mr M,’ because none of the patients being treated by him had ever seen him for more than a few minutes before he was called away! actually phoned my house at 8:30 this morning to tell me that he had arranged for a consultant from an orthopaedic hospital in Shropshire, to see me next week. so it appears that he is very keen for me to have this op and quite quickly!
Nicky - hey weren’t you priviliged with the phone call??!!! Hope you do get the op done quickly and then you can get back to ‘normal’ soon. Once you know these things need doing, you just want them over with don’t you? Well I do anyway! It does sound like they’ve got their act together and a hip replacement, altho drastic obviously, will be a good way forward.
I’ll look out for an update from you but am away all next week in London and there’s no internet access at my sister’s so will catch up on my return.
Keep perky and good luck with the orthopaedic man.
Just wanted to wish you well with your hip replacement op. I had a ‘Harrington’ hip replacement in March which is where my pelvis was pinned in several places as well as the ball and socket replaced, all due to extensive bone mets. I am still recovering from it now(due to having to have a major spine op a month later as one of my vertibrae in my back had fractured, which has hampered my recovery), but I am sure you will have a much smoother and faster recovery and will appreciate regaining more mobility and reducing the painkillers that you will no doubt be taking now.
I too have had a hip replacement. It was last May, about a year after diagnosis, and rather than having a hip replacement straightaway my surgeon preferred to wait and see if the bone healed itself, thereby making an op unnecessary. I had a 10 day course of radiotherapy to the hip area after diagnosis, which I think hampered my recovery when my hip did finally fracture. (Plus I don’t do general anaesthetics very well, apparently). And I think a nerve got trapped somewhere in my spine, so that for several months after the op I felt movement in the hip area was restricted and also very painful. One day, though, after about six months I felt the nerve release itself so that mobility in the hip improved, apart from the stiffness caused by the radiotherapy which I guess will never now get better. My oncologist now says (a year on) it should be ok for me to cycle, but has discouraged me from doing any impact sports.
Compared to what I was before diagnosis I feel about 95% back to normal in the hip, which was excruciatingly painful two years ago. After diagnosis and radio treatment I then spent several months on crutches, and lived daily with a ‘high risk’ of fracture … as the months went by I got to the point when I thought I’d be ok and an op wouldn’t be necessary … only one day to get a phone call after routine scans to tell me that did I know I had a fracture in my hip?!
To be honest, I think you’re just as well getting the hip seen to straightaway so that you can get back to your new normal as soon as possible without months of uncertainty in between. THere are several of us on here with hip replacements and it sounds as though we all, more or less, are better off with our new hips than we were beforehand.
I see that you are visiting the hospital in Shropshire…Is it the Robert Jones & Agnes Hunt? If it is, you will be well looked after there - I loved it. I had a proximal femoral replacement (glorified hip replacement) in 2007, similar story to yours. The tumour/bone cancer was quite extensive in that area, so they advised that they would remove it, to give the hormone therapy a better chance at working at the smaller area (other hip and ribs)
I was in for around 20 days, but that was because of the PFR, a hip replacement doesn’t take as long to recover from. The only thing I will advise, is that you should only go home when YOU feel ready, not when they think you are…
Thank you all for your latest advice and good wishes.
Poannie, yes I have been referred to Robert Jones & Agnes Hunt in Gobowen. Glad to hear that you had a positive experience there. I have been there before for my DEXA scan last year. It is a bit of a ‘time warp’ isn’t it? It felt like going back in time. What exactly is a proximal femoral replacement? Is it when they replace a large part of the femur aswell? As I guess that is what I will have as the whole top section of the femur is affected! I am still waiting for an appointment, the oncologist has recommended the op as it is such a large area, but the orthopeadics have still got to OK it. I hadn’t thought about the hormone working better if it is concentrating on smaller areas, but I suppose that makes sense and the thought of getting rid of any cancer is a bonus, shame they can’t just cut out all the other areas while I’m there!. I’m still not 100% sure where else is infected as I keep being told new areas (all based on the same scans!) The onc also mentioned a new tumour in my chest and that’s the one scaring me, but he was very dismissive about that one and was only concerned with the hip for now. He said that he’s hoping the change to letrozole will sort out that one (him and me too!!!)
Linda - sorry to hear about the rough time you had with your hip and back. Bizarrely I am not in too much pain yet and am completely mobile, without the need for pain killers yet. (the onc is also surprised as it is such a large area affected) so it does seem strange to me to be going through surgery and recovery as nothing will be improved - apart from my peace of mind at removing some of the ‘evil C’ from my body.
Alison - well you have certainly been through it! Glad to hear that after all you’ve been through you are pleased that you’ve had the replacement. You are right about the uncertainty. With a secondary diagnosis I am not sure of how many quality summer holidays I will have left - just a bit worried that this one will be taken over with recovery, when all I want is to take the family on a holiday of a lifetime while I still can!
I went to Gobowen hospital and met with a very positive and knowledgeable consultant (I wish I could see her all the time, she was really good and made me feel a lot more positive that any other time I have been to a hospital!)
I am possibly going to have a hip replacement, but she wants to do a biopsy first to see what the hormone status is and how aggressive the tumour is, If the tumour isn’t too aggressive she will possibly leave invasive surgery for a while, particularly as the pain seems to have gone from that area! She said that she has had patients who have showed signs of the bones healing on bisphoshonates and hormones alone and she can tailor the treatment to suit the cancer cells discovered in that area. Fortunately the biopsy is done under a general anaesthetic!
So I won’t know if the hip replacement is going ahead or not for at least another 2 weeks. But actually I feel quite happy Tonight (even when I was told there is also an area evident in my ribs!..see I can’t ever go to the hospital without a bit more thrown in!!) She really gave me lots of encouragement and didn’t once make anything seem worrying.
Hi Nicky I have had areas of healing bone whilst on hormones and bisphosphonates. My other (unoperated on) hip, at first, showed areas of mets which according to my orthopaedic doctors have since disappeared. I’m so glad you had a positive visit. I have both a positive oncologist and orthopaedic consultant, it really helps. x
Nicky that is really encouraging - it makes such a difference when your onc has a positive outlook. My bone met has shrunk - I don’t know whether it is the chemo or biophosphates - or both - that have done it. I’m now hitting it with rads and hope to get rid of it altogether.
) Are you able to do any exercise? I’m just a bit worried that I will never ski again if I do have it! 
Belinda…x