Hi everyone,
As the subject says I'm a 27 year old woman and I was diagnosed with synovial sarcoma of the right thigh/hip in June 2021 I then had an operation to remove it in july 2021. The cancer was removed in it's entirety with tests on it's margins coming back free from cancer. My symptoms were a large painful lump which prevented me from lying on my right side, stabbing pains on and off throughout the day and a deep ache. My pain was worse at night and it also had an effect on how I walk. My first point of call was a telephone consultation with my GP due to Covid-19. I had delayed contacting my GP as I knew they would want to see me in person to examine me and to be honest I was scared of catching Covid-19. Especially since I am quite a worrier anyway and I have convinced myself numerous times that there has been something seriously wrong with me, then after going to my GP I have discovered it's nothing serious at all.
So after the phone call with my GP where I had spoken to a nurse, she then referred me onto an advanced musculoskeletal physiotherapist for another telephone consultation. After this telephone consultation I was asked to come into the surgery so they could examine me. They thought it could be muscle damage but after being examined they were still confused and said about sending me for some bloods. Then I was told to wait a couple of minutes while the on call Doctor was brought in so they could take a look. When the on call Doctor examined me he said he would refer me to the Royal Orthopaedic Hospital in Birmingham as they specialise in things like this. It was only later on did I realise how detrimental this decision was and how good it was that the GP had referred me to a specialist hospital as I have seen countless times on the Internet that people have had to keep going to their GP countless times before getting referred.
Once I was refered to the Royal orthopaedic I had countless tests MRI scans, CT scans and two lots of biopsies they found out it was cancer but was unable to determine which cancer it was. My consultant said that didn't matter though as the action would still be the same, to have an operation to remove it. He also said that once the cancer was removed they would then do tests on it to find out what type of cancer it is. I was also told they had found something on my lung which could be cancer or could be scar tissue. This measured less than 1cm though and they said they would do a follow up scan in three months. If it hadn't changed it would be scar tissue but if it had it would be cancer. I was in hospital for longer than expected after my opperation due to fluid still draining off the surgery site. I was in hospital a total of three week's and while I was in there they told me the cancer was synovial sarcoma. After being released from hospital I had a couple of more weeks recovery and then I was refered to The Queen Elizabeth Hospital Birmingham and started a 6 week course of radiotherapy. (I go and have radiotherapy everyday 5 days a week and then have a break on the weekend.) This was to be on the safe side with my leg even though they said the margins were clear of cancer they want to make sure I have a better chance of it not returning. I also had another consultant now who I was told I would be seeing every couple of weeks.
A week or two after starting my radiotherapy which brings us up to date as it was only three weeks ago I had a follow up CT scan on my lung. Afterwards I saw my consultant who said the CT scan showed that what they had found on my lung had grown slightly, so they think it is cancer and looks like the best course of action would be surgery first and then maybe chemotherapy. I have a date set for an appointment with a lung surgeon after my radiotherapy has finished. So there we are up to date that's my story so far... If anyone has/had the same type of cancer as me it would be great to speak to you as I haven't spoken to anyone who has synovial sarcoma. But it would be great to speak to anyone really who has/is going through cancer and if I can help any of you with advice ect. I will do. That's my next point of call after introducing myself looking through some of your posts to see if I can help in anyway.
Hi and a very warm welcome to the online community
Thank you very much for taking the time to write out your story so far and I'm sure it'll be really useful for others with this type of cancer to read.
As the online community is divided up into different support groups I'm going to recommend that you join the soft tissue sarcoma group, which is a great place to ask questions, share experiences and get support. I've had a look there and there are posts from people with synovial sarcoma there.
To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'. To save you typing all this out again you could copy and paste it into the new post.
It would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.
x
PS. I love the username!
"Never regret a day in your life, good days give you happiness, bad days give you experience"
