Return to playing sports

Hey mate, i was diagnosed with Chondrosarcoma (rare cancer that starts in the bone and migrates to soft tissue) back in 2011 and had a Distal Femur replacement in the same year on my left leg.It since Metastisised to my right lung. (Edit: Spelling)

(realised i had to create an account to post, sorry for the gap, read below my first post first). 
Point is i am an avid golfer, in fact i play off scratch both before and after this surgery, and if your right handed the fact its your right leg is a good thing for golf. I can actually answer any questions you have if you would like to ask

(NOTE: This is not my X-Ray, i dont have one on my computer but represents what i have in my leg)

I obviously had to play in a cart for a few years but after alot of physio and rehab i was able to start walking the course over time (a long time).

https://www.researchgate.net/figure/Radiographs-of-the-proximal-femoral-resection-and-reconstruction-using-the-custom_fig2_256448948

Hey JayWoos,

Thanks for getting back to me.

I had a right proximal tibial replacement. So they replaced a portion of the tibia, new knee joint and extends up into the femur. It doesn't look too disimilar to the x-ray from the article. Do you still have any difficulty walking & bending the left leg? I can walk long distances but struggle with hilly terrain. The knee still tends to hyperflex when I'm tired / walked a long distance. I have been known to take a tumble now & again. No injuries really, just a bruised ego!!

Riding a bike is ok on very small hills and the flat. I can't get my foot in the correct position on the pedal. I tend to push down with the mid foot / heel sometimes. Have you tried riding a biking? If so any tips on how to improve technique?

Not really a golf fan however perhaps I should give it a go. Have you tried any team sports at all.

I hope you don't mind me asking, are you receiving any treatment at present? Its really nice to hear you are still here 12 years on.  I was told, I probably had about a 2 year prognosis so its excellent to still be around.

Hi, forgot my login so had to create a second account

All was going well until recently when i have had a recurrence in the soft tissue of my left knee, a bit more aggressive this time. It metastasized to my lungs around 2015 and had one of three lumps taken out at the time but had two remain, now back to three but they are small. Looks like unfortunately ill have to have the leg amputated which wont help my golf swing but ill keep going

As for falling, i was very good at for the first few years after my initial rehab, fell a hell of alot and slipped over easily. As the muscles grew around the knee this reduced alot and i'm sure it will for you over time. Riding a bike was no chance for myself, i tried a few times over the years but at the top of the cycle my knee wouldn't bend enough to get around without extreme pain.

I discovered 8 years after the original distal femur was replaced that the cement inside the femur had loosened and this was what was causing all the pain and falling. Turns out it used to happen alot in the early days of this sort of surgery. It was identified by having a bone scan just in case your wondering if you should check, lit up like a Christmas tree.I had the original one taken out and new one put in and it was smooth sailing for a few years until the recent diagnosis.

I do have difficulty walking, its not pain free or easy especially the 8 odd Kilometers around a golf course but over time it got alot easier and i did get to the point where it didn't hurt at all after the walk, but it took a few years and a very gradual increase in distance over time.

I did golf before the prosthetic was put in and continued about a year later after the initial surgery. I played off scratch both before and after the surgery and actually as i built strength got down to a +4 handicap.... Not gloating, just showing that its possible to play with this sort of prosthetic, especially since its in your right leg as in golf the left leg takes 80% of the force in the golf swing (for a right hander).

I used to play Rugby Union and cricket when i was younger but no team sports since the leg went, being unable to run or be agile has sort of limited my options. Whilst golf isn't a team sport you play in 4's and can develop a regular group of good mates, golf is something to do before the beer

I am receiving treatment now that i have the recurrence. Unfortunately Chondrosarcoma only has excision as an option and the tumour i have has wrapped itself around the main artery behind the knee (popliteal artery) and the nerves so its 99% likely they will have to amputate my left leg in the next month or so.

In terms of ongoing treatment we are throwing a bit of a hail mary but i underwent Genomic testing (via foundation One) on the tumour which identifies the type of mutation and if possible suggests a medication that may help but is not designed specifically for this type of cancer. As its off script and designed for Acute myeloid leukemia  (AML) it costs me $11,000 Australian a month (this is with a 50% discount) and is unlikely to work but possible so i am trying to hold on to my leg as long as i can before amputation but the pain is going through the roof and it does seem inevitable, seeing surgeon in two weeks.

I've been given 1-10 years prognosis because of the lung mets but i'm still holding hope for a few more years than that.

Sorry it took so long to respond, been a busy time but i'll try and logon daily to check if you have any more questions. I'm bedbound at the moment so have plenty of time on my hands. Answering questions is therapeutic for me so ask as many as you like !!!

Cheers, Jay

No worries at all Jay. The fact we have so many different passwords for everything, makes logging tricky for me too. It drives me crazy at times! 

My starting point was worse. I was diagnosed with osteosarcoma with mets to various different sites in 2016. I remember being told I had 40+ lung mets (that they stop counting after this point!) Oh gosh I have to laugh about it otherwise I would cry! 

There wasn't much hope really, had chemo & they took the primary tumour out. As it gave me a fair amount of pain & for quality of life. Initially post surgery, I had a lot more pain and difficulty walking. If I'm honest, I was very depressed as everything was so difficult! Slowly but surely walking got better. It was a massive step went I could cope with uneven pavements & go up steps. It seems silly for people with good mobility but this was huge for me. This slowly improved and felt confident enough to attend a big sporting event. Went to a rugby union match with my brother. I still used crutches for stability & long distances. It meant people gave me extra space and my brother walked in front so I had a clear path. Had the best time. 

I really hope the off script treatment has a positive outcome for you. Sending you lots of positive vibes & thoughts. I know being bed bound will suck big time! Are you still an arm chair sports fan? I take it you are in Australia. Are you following the Australia vs India test series at the moment? If so enjoy it. Test cricket is ok, when there is actually something happening. When they are blocking away I lose interest!!! I did attend 2 BBL matches last month, when I was over in Australia visiting friends & family. Had a great time.

Finally feel I will give a team sport a whirl. Think I have the confidence to give it ago and see what happens. Fingers crossed I find something that fits & I don't suck at too much! Haha. Trying to find a walking football session for ladies or mixed for youngish adults. Would be brilliant to have a kick about and then go for beers. I miss that from playing tennis. 

I think tennis would be beyond me, I can hustle but wouldn't be able to cover the whole court. I did have a kick about with my niece the other day. I struck one ball so sweetly, but got quite a sharp pain in & around the knee. So had to switch to my left foot. I presume the pain / discomfort would ease off the more I play? Once my leg gets use to the movement & hopefully gets stronger too. 

I had no idea playing golf would involve walking 8km around a course! Have you found walking on uneven terrain has helped at all? I do like a coastal walk, as they generally have a great view. I will invariably struggle at certain points & stop to think about which leg to lead with. Once we get to the view point its all forgotten about.

Did you find there were any exercises that you feel specifically helped you strengthen the muscles around your knee? Any 1st hand recommendations are much appreciated.

I have a limited knowledge of golf, however I know +4 handicap is very good. Are you very good at seeing angles on the green? Is it a bit like snooker, where you visualise the angle of the shot to pot a ball? If so I feel I'll be doomed. I am very much a hit & hope kind of player.

Just wondering if your orthopaedic team ever advised you to stir clear of contact sports? I can't remember asking mine. I will enquire the next time I'm in clinic. 

I genuinely hope you get some good news in the next few weeks Don't focus too much on the prognosis you were given when the lung mets were found. You've come this far, why not aim for much further? I find focusing on the next big sporting tournament helps me. Hmmmm that would be the rugby world cup in the northern hemisphere autumn. Any predictions for the outright winner? 

I did get to watch some of the wheelchair rugby league world cup last year. It was so fast paced & the sound of the wheelchairs hitting each other was brutal! I loved that you could have able bodied & people with disabilities on the same team.

Take care of yourself & hope you can get on top of your pain. Would CBD oil or such like help? Don't NFL players take it? 

Apologies for rambling, Waruni.

I forgot to say. About a year ago I had intense pain in and around the knee. Also with pain in the right hip radiating down my leg. This freaked me out quite a lot. I was seen by the orthopaedic team and they arranged an MRI scan. Did you have a MRI scan prior to the bone scan being arranged? The MRI scan showed there was no recurrence of the cancer and the endoprosthesis was stable. It took months and months before things returned to normal if I can use that word!

I had many MRI's over the years but an MRI did not show up the loose prosthetic, only the bone scan. In saying that i also had hip pain, mainly caused by a horrible limp for the years while it was strengthening.....

Hiya Jay, hope you are well. I've tried a few sessions of walking football. It was really good fun and nice to be able to participate in sports again. As its walking / jogging pace my leg doesn't really hold me back, woohoo baby. My leg is rather stiff now, pretty much the same when I do long distances. I know i'll probably have this chronic pain / discomfort for a long time if not forever. Have you got any recommendations for what to use to relieve stiffness / discomfort??

Hoping to track down a walking tennis session / club. Would love to compete again, who knows if i'll be any good but want to give it a whirl. In the meantime I need to find a brick wall in the park to hit balls at the prefect my shots. 

Hi Waruni, the standard treatment is obviously painkillers, however, if you can avoid them, do so.

In answer to your question there are a few solution i used to use:

1. The best solution IMO would be to get a script for a drug in the NSAID group. (Non Steroidal Anti Inflammatory Drugs). I use Naprosyn SR1000 (Slow Release 1000mg) and taker once a day. Takes about 2-3 days to start noticing the improvement. These are not addictive at all and in some senses they work better than painkillers for the sort of pain your referring too. 

2. You may already be doing but using Heat packs and Ice Packs in rotation. If Muscular pain the heat packs tend to settle it quickly, if inflammation pain then the ice will help more.

I spent 12 years on Endone and Oxycontin to treat pain (from what we later discovered was the loose prosthetic in my femur) and it took me years to get off them through slow tapering. I'm current only Palexia (Tapentadol) slow release and immediate release. It seems ALOT weaker than the Endone / Oxycontin painkillers but i'll only be on them for a few months till they amputate my leg in early May so should likely be easier to get off after the amputation.

I hope this helps. I cannot recommend highly enough speaking with your Doc about NSAIDS. There are weaker over the counter anti inflammatory drugs if you don't want to get a script.

You can read a little more about over the counter NSAIDS in this article:

https://www.healthline.com/health/pain-relief/otc-anti-inflammatories

Cheers, Jay

Hey Jay, I'm hoping the more I play the stronger the muscles will get & mean less discomfort / pain. I'll try and remember to stagger the paracetamol & ibuprofen. They do seem to help. I still have some naproxen but its not the slow release kind. I did find the heat pad was very useful, certainly helps to settle the stiffness for awhile.

Sorry to hear about your upcoming amputation. I hope it all goes to plan and in the meantime that your pain is controlled.

Take care of yourself.

Waruni.