Evening everyone
my husband is 66 and in June last year he said he had a bit of an ache in top half of his leg - said he felt like he’d been sitting on a coach seat for too long. He didn’t think too much of it putting it down to getting older. Then in November he noticed a large lump at the side of his buttock. We went the GP and in the space of 6 weeks he had an ultrasound scan, biopsy, MRI , CT scan and a consultation with an orthopaedic surgeon who confirmed it was a Sarcoma. Surgeon told us that she would have preferred to do radiotherapy before surgery but team thought it needed removing asap. So within a week on 18th Jan he had his op. They removed a high grade 15cm UPS as well as his gluteus max. I realise how lucky we were to have investigations, diagnosis and surgery so quick. But I have to admit the pace of it all was terrifying! He has now just finished 6 weeks of radiotherapy post surgery. From someone who had never heard of either UPS or STS I have now read so many medical journals/articles from all over the world but whilst it helped in the beginning - I think mainly because it kept me concentrating on academic/ medical stuff rather than concentrating on my feelings and emotions of what was happening right in front of me! The thing I find most frightening is the uncertainty of it all - but I suppose that happens with most cancers. Although I would say there seems much less info concerning Sarcomas but that’s probably down to being a less common disease. We now have a 10 week wait for fresh scans followed by an appointment with our oncologist 2 weeks after that. Being honest this 10 weeks waiting feels like it’s the first time I’ve been able to breathe out and take a moment. We have already been told because of several factors grade, size and aggressive nature of the sarcoma there is a strong possibility of recurrence and/either mestatase within 2 years.
I really don’t know why I joined and posted today - but actually it feels good getting all this stuff out my head. If anybody has experience of UPS/STS I would love to hear ant maybe learn from your experiences
cheers and thanks for reading
Hello Toffee girl,
Welcome to the Online Community. I hope you will find it a supportive and informative place to share with others who are going through similar experiences. I am sorry to see that your husband has had a cancer diagnosis. I hope that he is recovering well from his surgery and all his radiotherapy. I can understand that this is probably the first chance you have both had to think about the whole journey with everything that has happened in such a short space of time.
The 10 week wait for his next scan is difficult but I suppose it is to give the radiotherapy a chance to work. When I had my radiotherapy for a different cancer I had a check up 3 months after it had finished and was told that it would still be having an effect in my body. Waiting around is one of the hardest bits of the cancer journey I have found, I always felt better when I knew how things were and I had a plan.
Feel free to post as much as you need to. Sometimes it feels good just to write it all down and as you say to get all the stuff out of your head. Even if somebody does not respond to every post on here I am sure people will benefit from reading posts on the forum. I spent sometime on my first forum before I actually wrote on it but got lots of information by reading about other's experiences.
Please do let us know if there is any other support we can offer. There is a phone number for the support line at the bottom of this post.
Also I am not sure if you are aware but if you go to the top of the Soft tissue sarcoma forum and type in the search bar you can search for UPS/STS or anything else and it will hopefully take to to previous posts on the subject.
Take care
Jane
