Hi friends.
I first want to say that I am not in the UK. I am in the United States. But in my searches, all you wonderful people in this community kept popping up and I thought that this would be a good place to get some support and understanding. It's so easy for people close to me to say, "Don't worry about it until you have to" or "why are you worried, it isn't anything yet?" I feel differently.
So a few weeks ago I noticed the top of my right thigh didn't feel right. It felt like it was swollen or something. Now, I am a bodybuilder. I also just turned 40. I lift weights alot and heavy weights at that. I had just started a cut (dropping fat) a couple months ago. I had gained a fair amount of weight over the past year (pandemic *insert eye roll here* lol) so now it was time to cut. I had lost around 15 pounds. So I was kind of keeping an eye on my physique. I didn't think anything about it for while because I thought, well it could be swelling or fluid or something from lifting and maybe it'll go away. It didn't, obviously. So then I started to look it up. And soft tissue sarcoma is what kept coming up. So I don't know how long it's been there -- wondering if maybe my fat was hiding it.
I made an appointment immediately on Monday with my GP and he had me come in that day. I went for an X-Ray on Tuesday. Results came back showing nothing on Wednesday morning. The nurse said she was ordering an MRI with and without contrast but it could take up to a week to get it approved with insurance and to hang in there.
The doctor looked at me and said we will figure it out and told me not to worry. I asked if it was fluid. It looked me square in the eye with worry and said "it's not fluid". He put in his notes "large soft tissue mass potentially within the muscle".
When measured on my leg the lump is 11 cm x 8 cm maybe. It is prominent. It can be seen and felt.
I'm a nervous wreck. I have been doing my research to make sure I know the proper steps to take. I have found that sarcoma can go undiagnosed for alot of people. And it is super important to have a specialist be the one to determine everything. My husband is being so supportive and understanding of my worry. He's letting me be however I need to be. He is listening to all my concerns.
But I think it'll be good for my sanity to have a community of people who get it. So we wait. I know I potentially have a long journey ahead of me whether it's a sarcoma or not. I'm thinking either way, it'll have to come out. So here we go.
Thanks, in advance, for your support. <3
Hi
There are many reasons that people get soft tissue masses and relatively few are sarcomas. Quite often sarcomas were not recognized early on and so of recent there has been a massive drive to get anything that might be a sarcoma looked at earlier and of course there are massive horror stories out there.
Sounds like your husband is doing just the right thing, supportive and listening. Your friends seem to be trying their best too but as you say unless you have been there it is hard to come up with just the right answer. Probably before our life was touched by cancer I would have been about the same.
<<hugs>>
Steve
Thanks for your reply! Yes, he is amazing. He’s been doing great at distracting me too. The waiting is terrible. I do hold onto the fact that sarcoma is so rare. But even the word mass on my dr report is enough to worry anyone I think. The time is passing so slowly!!
Hi Kathy. I can relate. I'm also in the US and waiting to discover what's in my leg. I have a lump in my right thigh that has been very slowly growing since 2018. It was brushed off initially. Dr said they couldn't feel it. I was having pain like sciatic nerve pain and my foot would occasionally go numb. I was sent for PT, no improvement. Finally, about 2 weeks ago I went back as my leg is in constant pain from whatever this is pressing on my nerves and muscle. I had also recently found two lumps in my right thigh. Dr sent me for Ultrasound and they found 6 lumps ranging from 1 cm to 4 cm.
Trying to stay off Google but from what I can see MRI or biopsy are the way to differentiate between lipoma, fat necrosis, or liposarcoma. My radiology report suggest an MRI, but my primary Dr brushed that off, saying that all radiologists recommend MRI. Getting a second opinion Aug 5th or sooner if any cancellations come up.
I'll be prayng for you. There's a little solace in knowing we're not alone in this waiting game. My mom has mets from breast cancer so I want them to definitively tell me it is not cancer; "most likely benign" isn't good enough, ya know?
Jessica
Gosh, that’s so frustrating. And yes, the waiting is awful. I’m still waiting to schedule my mri but we are making progress. I should know more tomorrow when that is. And you’re right, it helps having someone in the game with you. I hate that you are having to wait as well though. Praying for answers soon! Update me when you can!!
Hi Kathy,
Checking in on you. How did the MRI go? Sending prayers.
Jessica
Hi Jessica!
My mri came back and said no mass was found. Which is great but I’m blown away because it’s obvious there’s something like grapefruit sized in my leg. My dr referred me to an orthopedic surgeon surgeon to try to figure it out. I guess onto the next step!!
hope all is well with you!
-Kat
I finally have surgery scheduled for this Thursday. They'll send for biopsy. All imaging has come back "most likely benign". Praying continuously that's what we confirm.
Did you have your surgery?
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