Proximal Tibial Replacement

Hi Lottie,

I had a proximal tibia replacement by Prof. Briggs at Stanmore in 2015. I had chondrosarcoma. No chemo. He performed a flap to cover the implant. It has taken years to acquire normal walking and climbing stairs without pain. I was in a tremendous hurry to find "normalcy' but I found the more stress I put on the leg the more pain I had. I have good range of motion and can do almost everything without pain now but sometimes lose stability if I rotate quickly or walk on uneven surfaces. 

I cannot jog and I asked Prof. Briggs to tell me very frankly what the realistic expectation should be. He said my outcome was one of the absolute bests. I do not believe running or jogging would ever be attainable for me. My suggestion is that you have a candid conversation with your surgeon and ask him/her to be explicit with their expectations for best possible outcomes.

I hope this helps. I know how hard it was to get information about post surgery status and experiences.

All the best,

Anita

Hi Anita,

Thank you so much for your reply! Briggs was also my surgeon, and I really rate him. He nearly had a coronary when I told him I was back riding the horse so I think jogging would send him over the edge! I managed to jog 0.8 miles tonight and currently ice packing my calf, I have an appt at Stanmore in a couple of months and will ask him frankly what I should hope for.

It’s great to hear you are doing well now with your implant, it’s so tough .

Many thanks.

Hi,

I've just joined this group because I am 6 months on from my surgery to remove a tumour in my tibia. I used to be a runner and am currently really struggling psychologically because my capabilities with my leg are so poor. I have had set backs with infection on the plates which have slowed down my progress but I am struggling to accept my current situation. I’ve just complete a week of intensive physio but I still only have 76 degree bend on my knee, I have drop foot and nerve damage/pain  and cannot walk without a crutch. I have very seriously considered having an amputation because I believe I will have greater mobility without it. 
I have been told throughout that I will never run on this leg and I’m trying to find another sport to get my ‘fix’. I am playing wheelchair basketball which is fun and have just this week started swimming. I haven’t got enough bend on my leg to get on an exercise bike though. 
has anyone else considered amputation? 

how have you coped psychologically?

thank you

Hi Hatty,

I had the same operation performed at Stanmore 5 years ago. I definitely underestimated the time I needed to heal and adjust. It took me at least a year to feel anywhere near pain free or more stable. I would absolutely not recommend amputation! I have regained great range of motion and live a very full and normal life. Having said that, I cannot jog, run, ski or do any high impact sport but I believe that is a trade off I am happy to make for keeping my leg. It took a long time. Years actually, of consistent low impact exercise (leg lifts are key!) I exercise my leg on a stationary bike gently and lay on the bed and do leg lifts every other day to strengthen the muscle. This has really helped but it takes time. It was a massive op! I am sorry to hear you have had complications but don't give up! Give yourself time. You have been through so much. I believe in another 6 months you'll see even more improvement. Swimming is great, by the way. I went to physiotherapy for at least 1 year. After 5 years of taking care of my leg I realize this is a lifetime adjustment but worth it. I am so grateful for the surgeon that saved my leg and gave me back my life. Please know there is definitely improvement to be made. Don't expect too much too soon. You will get better. All the best!

Thank you so much for the reassurance. I have felt very despondent after my infection and further surgery. I had a week of intensive physio and hydrotherapy last week in Birmingham and have made some improvement and have started swimming. Have you had any infections? 

Hi Hatty,

No, fortunately I did not have any complications.I am sorry you have had all this additional stuff to deal with but it will get better! You have to be confident in your surgeon and follow up care. Did you have a good experience? If not, I would suggest to get a 2nd opinion. My surgeon was brilliant. He is top in this type of surgery. I saw he privately as I live in the US but he is NH surgeon. I thought I would recover faster than I did but it definitely took about a year. You are still very recent post op. You have to look after yourself and not push yourself too much. Moving and raising your leg even when sitting everyday will help. I used a noodle in a warm pool and pushed it down with my leg as a form of exercise, it was effective. Good luck and believe that you will get better.

Hi all,

I am a 24 year old diagnosed with stage 4 bone cancer (paro osteosarcoma). 

i am soon to undergo chemotherapy this week to treat my bone cancer which is stage 4 and has spread to the lungs. I have been told that bone cancer is chemo resistant so there is a very low chance of the chemo working, around 20%. 
 

there are a lot of risks with me going ahead with the chemo given the situation with covid-19. First one being a compromised immune system which will make me more suceptible to catching the virus which can be fatal. Secondly the damage the chemo will do to my quality of life, as now I am healthy and feeling well and fine. There is also a risk that I could go through the whole chemo process and it damages my quality of life, only for it not to even work. 

However if I don't go ahead with the chemo, then there is a strong chance the cancer will grow and spread further. My cancer is very aggressive as the tumour which was taken out of my leg was High grade and now small dots are in my lungs.

I was thinking to either go ahead with the chemo now and take the risks. Or wait 4 weeks and assess the covid-19 situation to see if it dies down. However the situation is unpredictable and 4 weeks could turn to 3 months. Also worried that I start a cycle of chemo now and the rest gets cancelled due to the heightened growth of the virus. Which would also have been all for nothing.

Any advice would be helpful as my treatment is due to start this week and tomorrow I’m getting my PICC line in. If anyone could help, I would be really greatful. Thank you. 

Hi,I’m so sorry to hear that your cancer has spread and that you’ve even got cancer at your age. It’s such a rubbish time to be having to make those decisions. 

I had osteosarcoma in my leg and it was removed last September. Prior to the operation I had 10 weeks of chemo. It had less than 10% impact on the tumour and it even grew during treatment. I also know of someone else who’s chemo didn’t impact the cancer. It’s a tough one to treat! 

The chemotherapy does reduce quality of life. Apart from the nausea and sickness, I felt ‘absent’ the whole time and had no energy whatsever.  There was very little quality of life during that time. I also had neutrapenic sepsis which was terrifying. Everyone is different though and no 2 people will react in the same way. 
No one can tell you what to do but I would think that having a compromised immune system at this time may be something to avoid if you think you can wait a while. Take the doctors advice if you can get a conversation with them. I’m sure they’ll be able to help. Talk to as many friends and family as you can. I’m sure lots of people will want to support you and can perhaps advise you. 

I wish you all the best, whichever decision you make and will have you in my thoughts. 

Hi hattykat,

thank you for your response - im sorry you had to go through all of that. 

did they say to you what the success rate of the chemo would be for your cancer beforehand? the doctors have managed my expectation and have said it is very low, so i am taking a huge risk here by going ahead with it in this covid-19 situation.

did you find yourself frequently in and out of hospital in between your treatment cycles? I am worried that if my temperature increases by the slightest then i will have to go A&E and be exposed to getting the virus and other infections.

i understand that many people have different experiences with chemo but i think the main concencs is that is does reduce the quality of life. May i ask, what chemo medicines did they put you on? Also did you explore any other alternative natural medicines/supplements? xx

Hi,

no I wasn’t told before hand about the success rate but they did tell me mine was ‚unusual‘ in the way it looked and very rare. 

i was in hospital for 7 out of those 10 weeks on methotrexate, doxorubicin and cysplatin. The cysplatin and doxorubicin were given at the same time over a 5 day period through a Hickman. Line. I felt very poorly for about 10 days on those. Some days I couldn’t stay out of bed for more than 20 minutes. My mum had to dress me, take me to the toilet and I couldn’t eat at all from the nausea.The methotrexate was given in wweek 4 and 5 and I didn’t  feel as bad but I did vomit more. Then it all started again. I was due to have 30 weeks worth if it had worked. I’m really glad I’m one way that I didn’t have it all, I don’t think I would’ve had the strength to go through it for that long. 

i had to go to A&E twice with a raised temperature. It worried me then so under current circumstances it’d be even more so. 

I didn’t explore any natural/alternative therapies although I have been doing some research. I am scared mine will come back in my lungs and I’d like something to help if it did. This is only stuff I’ve read and heard and I have no evidence to support it but I suppose anything is worth a try.....