It is tragic to read how difficult it is for people to get a diagnosis for bone cancer. For myself it all happened through chance, otherwise I may have been in a position further down the road when it could have been a little too late.
As a male in my mid 60’s I’d been having regular blood tests for PSA (an indicator for prostate cancer). The results kept coming back with the readings on the high side but the GP said this was nothing to worry about. This went on for some time and in the meantime, I kept reading and hearing that the PSA test was not the most accurate and the way forward was to have an MRI scan. I suggested this to my GP and eventually it was agreed that this could be done.
The scan was carried out at the end of March 2019 and at the end of May given the results. Prostate cancer had been ruled out however a lesion had been found in the right pubic bone that needed further investigation. A biopsy of the right acetabulum was carried out on the 6 August and due to being away on holiday it wasn’t until mid September that I got the prognosis of having a grade I chondrosarcoma. I was told that chemotherapy or radiotherapy would not be affective and therefore aggressive surgery was to be the mainstay of treatment due to the location of the tumour.
On the 29 January 2020 I underwent surgery at The Royal Orthopaedic Hospital, Birmingham having a P2/P3 right internal hemipelvectomy and complex acetabular reconstruction (removal of the right superior pubic bone. Removal of acetabular and replaced with ice cream type prosthesis, together with hip replacement).
The procedure went very well and excised with clear margins. However, after removal and examination it was found that the tumour was actually a grade III. So now it was about recovery and trying to get back to normal. As an active person I enjoy doing DIY and activities such as walking, but especially cycling. Riding a tandem with my wife here in the UK and around Europe. Prior to the operation I was advised that I should be able to cycle again but walking may require the use of a walking stick.
Luckily, I had my operation before lockdown, but unfortunately didn’t get any intensive physiotherapy afterwards because of Covid. I progressed well and at the end of May had my first face to face consultation back at hospital. I was walking with one crutch, the results were good and the consultant was pleased with the progress. I asked if I could cycle again (tandem) he said that would be good exercise. So, after doing quite a bit of work on a static bike we started out on the tandem. After being indoors due to my own recovery, no driving and lockdown it was great to be able to get out and about from the beginning of June. After about 7 or 8 outings we had clocked up about 200 miles and things were going well. In fact, riding the tandem was easier than walking. Then on June 17 we were knocked off and we both fractured our pelvis. You couldn’t make it up!
The fractured pelvis has been more painful than the operation. My fracture was on the same side as the operation, running parallel with the ice cream cone. Fortunately, it appeared on the scans to be stable (ice cream cone). We were hospitalised for 9 days and once home we were both struggling. Now back on two crutches. Recovery has been slow and difficult and I’m still recovering from the accident but we hope to be back on the tandem for the beginning of September 2020.
Will I be able to walk without a stick in the future? I don’t know, but will do as much as I can in terms of exercising and strengthening the Glutes to try and make it happen. As for the big cycle rides of the past (Lands’ End John o’ Groats – 2017), maybe not, but we will get out and if it gets too tough then we always have the e-assist option.
I think of myself as being lucky, finding the tumour by chance, having the procedure before lock-down and recovering pretty well. No doubt there may be more challenges in the future, but so far, so good.
Hello Capitaine
Well done for getting this far.
Lots of things we have in common, I was in my 60s when diagnosed with osteosarcoma of the pelvis, had surgery at ROHB...and am now a regular cyclist but by trike.
Not sure if this will reach you, so will say more if it doesn.
2-crutches-flower
2-crutches flower
recovering from Osteosarcoma
Not sure yet if I am now in and you will see what I write.
For me, having had all the Ilium on the left side removed and no prosthesis, I am left with a large shoe raise (since its as if my left leg was 6 shorter) and I use 1 crutch to walk outdoors, none indoors now, or 2 crutches for longer distances or uneven ground.
Riding a trike has been a real boost for me. I cant do 2 wheels now since everything about me is so uneven/unbalanced. But I am still here, 7 years on from surgery, and keeping well and active
2-crutches flower
recovering from Osteosarcoma
Good afternoon 2-Crutches flower
Pleased to hear that you are keeping well and active. Yesterday I was out on the solo bike for the first time. Did 18 miles and it wasn’t easy. Today we have been out on the Tandem, doing 20 miles but again hard work. I’m certainly not as well as I was before we got knocked off.
The operation has left me with an inguinal hernia which the consultant says cannot be corrected with an operation due to the pubis bone being removed. This is most uncomfortable in general and not great when cycling.
We ride a Longstaff Tandem and George also built many tandems in his day. So what is yours? This time last year we were cycling in Gers, France at the international Tandem Rally, then cycling in Provence. What a difference a year makes.
Thanks for making contact, Capitaine, Shropshire
I ride a Van Raam Easy Rider. Especially in Lockdown it has been my salvation...I may not be able to do many of my usual things, but I can be out cycling. Have done every day except 2 since 17th March....total is now over 600 miles. I dont do the sort of distances you do, with 20 km being my maximum in any one day, and some days its just 3-5 km. I too have what effectively is a large hernia..because without the Ilium my muscle wall cant hold my guts in. Sometime it aches, and its not a pretty sight, but no one but my o.h sees it....I do sometimes swim and try to choose swim gear to disguise it.
A little over a year ago I fell and fractured my sacrum.....happened at the gym, no real explanation other than had worked really hard in a class, then as I walked back to changing rooms I went down. Not easy getting A % E to make any sense of what had happened when my pelivs looks like nothing they have ever seen before. That just slowly healed, but I havent returned to the gym. I'd rather cycle!
2-crutches flower
recovering from Osteosarcoma
Hi, my wife had the same op in feb in oxford. She is still recovering from the op on the wound which is being treated with silver nitrate as overgranulated but swelling is going down and she can put weight on it.i brought her a small set of exercise pedels which she has started using. I would be intested to know how your revcovery has gone since? My wife has a difference in leg length as a result of the op and was told ut was more aggressive cancer than expected but scans are clear at the monent post op.
Hi South glos boke
I am glad your wife is recovering from the op now. It is a major one and only 2 months on, I think there is lots more recovery to go...starting with getting the wound to heal. That bit was never a problem to me,,,I was just lucky. But in other respects it was a case of slowly, slowly. My operated side - the leg is apparently 6 cm shorter, so i hav built-up shoes, done through NHS orthotist. But I didnt get to that until at least 6 months post op. They need to wait to see where it all settles. I was having physio for over 6 months at a local hosptial - and always did the exercises set, since I was keen to get as mobile as possible. I hope your wife is able to access physio - and realise this may all be different in Covid times. I am glad your wife's scans are clear. I am now 7 years post op and continue to be in the clear. I have learned to live with the changes in me - never going to be in a bikini on the beach, but then I was long past that any way. More important to me I have managed to swim in the sea - thanks to a beach buggy/wheelchair on a beach in Canada. Never going to wear high-heels, but I wasnt a fan of them even before.
It is a long slow job recovering. I wish you and your wife well. I often think it is harder on partners than on those of us who have the cancer.
2-crutches flower
recovering from Osteosarcoma
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