About me and Chondrosarcoma

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I'd always been a very active person having been diagnosed with osteoporosis due to coeliac disease whilst in my late 40s. Once covid hit and I wasn't able to attend my usual fitness classes I started walking a few miles a day. After a couple of weeks I was getting severe pain in my right hip that was keeping me awake at night. I put it down to the fact that I was walking long distances and not stretching out properly, Thought I'd pulled my hip flexor muscle. Over the summer of 2020 I hurt my back and went to see an osteopath, I mentioned my hip and he felt that due to my age (late 50s now ) it was probably arthritis. I also told him about the  osteoporosis and that I was due a dexa scan (bone density scan) He suggested that I should ask the gp for an xray at the same time,  just to be sure he was treating me correctly.  The GP was not keen to send me for the xray because of covid but I persisted and am so very glad that I did. On 29th Oct 2020 I had the xray then on 2nd November 2020 I received a telephone call from my GP saying that they were pretty sure that I had sarcoma in the right hip but that a biopsy was needed to confirm. By December I'd had all the tests and it was confirmed to be chondrosarcoma.  In January 2021 I had surgery to remove half the thigh bone and a hip replacement (proximal femoral replacement). They managed to remove all the cancer.  I have been having physio via zoom since April 2021 and am recovering well. I'm also having check ups and xrays every 3 months to make sure that the cancer hasn't spread to my lungs. All good so far. The checkups will carry on at quarterly intervals for 2 years, half yearly for 3 years then annually for 5 years.

  • Hi and welcome to the Online Community. It proves persistence pays off, thank goodness you persevered. I've a different type of cancer but had to go through all my scans, tests alone last year due to Covid. I didn't see a consultant to tell me I had cancer, it was a nurse during a phone call.

    Good to hear you are recovering well and you're being monitored every three months. Will having your physio mean you'll be able to resume pre-op fitness workouts? I was back to 4/5 mile walks quite quickly after my op, problem is hubby's needed a new hip for some months and as his walking has become slower, my fitness is held up. Good news he's got a date for replacement 19/11. I was prepared to try a DIY type as he's not a patient patient!

    It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep writing the same thing over and over. You can amend or update it at any time. I would just copy and paste this post as it's informative.

    Hope you continue to make good progress, Hugs, B xx

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  • Hi MrsBJH, I'm hoping this message is replying to you. I'm really not very good with technology at the best of times! So bad in fact that I thought I'd put all the previous message into my profile! Joy

    I've just found out this week that they needed to take more bone than they'd hoped to so because of that I'll always have a limp and that I'll most probably need to walk with a stick if I want to go walking for a distance. It was a bit of a shock but I'm very lucky that It was all caught early. I just need to adjust to a new normal. I have been able to attend some aqua classes at the pool which I've found very enjoyable and definitely help with the rehab. There are many things that I won't be able to do again but I'm trying to focus on the things that I can do.

    I hope your husband gets in for his op as planned and wish him a speedy recovery so that you can resume your walks together when he is able.

    I've just read your profile and so pleased that your treatment has been successful and wish you all the very best for your continued recovery.

    Thank you for replying to my message, it's been great to make contact. I'm now going to do my best to try to put that very long post into my profile Rofl...wish me luck!

  • Hi Yay, you did it, your profile's updated and you replied so well done you! I smiled when I read your bit about attending aquarobics. Years ago when I was working I went with work colleagues to a class at lunchtime. They'd forgotten to raise the pool to make all the same depth and I was the one who bounced into the deep bit, makeup all run, soggy hair and got back to work somewhat later than the norm!

    Read through some of the posts on this group and just reply to one's that catch your eye, there's no particular etiquette to follow we all reply to any posts that interest us, we all support each other.

    Hugs, B xx

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    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Hi ShB, how are things going?

    I picked up on the fact that you were told that you would always walk with a limp and thought you may be interested to hear my own experience.

    I posted "Chondrosarcoma – Pelvis" over 2 years ago. It would appear that your surgery was just one year after my own. At the time of being given the prognosis and asking questions I was told that after the operation I would be able to swim, ride a bike and walk, but probably with the aid of a walking stick. No, no, that's not going to be me I thought. An active and sportive person. Unfortunately the consultant was right. After 2 1/2 years I'm "fully recovered" walking with a limp. In the house and around the garden I can manage without a crutch although at the end of the day it's tiresome. Walking outside I use a crutch. I need to put a lot of weight through it and a walking stick would be of no use. Maximum distance I have walked in one go is 10 miles, although that was a test and more than enough. Six miles is a preferred max and manageable. No matter what workouts I do now nothing will improve it any further. So on a positive, we were both lucky that we were diagnosed by chance, lucky that we can write about our experience. I dispel any negative thoughts of my situation by thinking that there are thousands of people in this world in a much worse situation than myself and would swop what they have for a limp at the drop of a hat. The positive is I get fast tracked through the airport and event queues Grinning.

    The operation has left me with a large hernia. Asking the consultant what can be done to repair it, the answer is nothing due to the fact that the bone that has been removed from my pelvis would normally have been used to anchor reinforcing/repair mesh from.

    Not that my situation helps yourself but it appears that its "par for the course" that we have gone down.

    I like your positive attitude, keep doing everything you can.

    Good luck, Robert