Referral to sarcoma team

Hi AdKhad and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Waiting for tests and then results can be a very stressful time.

The online community is divided up into different support groups so I'm going to recommend that you join the soft tissue sarcoma group as you'll then connect directly with others who can share their experiences with you.

To join just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here, and join in with existing conversations by clicking on reply.

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Hi,

I’m sorry to hear this is something you’re going through. Like you, I too expected my ultrasound to diagnose a normal fatty lump- I still expected this even after my mri. I was referred to a sarcoma team without much reason, but honestly I still thought it was nothing. I then had an ultrasound guided biopsy and CT scan done. I’d say it’s pretty likely you’ll end up having a biopsy done as this is the best way to get a clear diagnosis. I also started thinking every ache and pain I had was somehow related however once I was told my full body scan was clear, those pains weirdly went away- so it was probably just anxiety. I was obviously worried before my diagnosis but I just told myself there was no point stressing when I didn’t know anything for sure and that worrying wouldn’t change the outcome. I hope this gave you a bit of an insight on what to expect and wish everything turns out well for you- I’m sure it will :)

Hi, thank you so much for your reply!  You very accurately described exactly how I’m feeling at the moment.  I have a bad stomach, am tired and feel dizzy all the time and I know it is more than likely the nerves causing it.  It just makes you overthink everything.  I’ve never been one to feel Ill and I always just get on with things, so this has knocked me for six.  

I am glad you had a negative result and I really appreciate your kind words.  Thank you :-) 

Ad

Hi AdKhad,

I don't have any advice to offer, but just wanted to say I am in almost the exact same position and waiting is the worst! 

I'm turning 30 next month, mum to a 15 month old, and in January I found a large lump on the right of my upper back. It's tucked just under my shoulder blade which is why I hadn't noticed it before! 

Saw the GP, referred for ultrasound, then referred for urgent MRI (without being told any concrete reason as to why) and I've had a call today to say my MRI results were abnormal so it's been referred to a specialist sarcoma unit. 

I haven't been given any sort of timeframe, so I wonder if you have heard anything back yet? I do hope you've had good news.

All the best,

X

Hi gwdihw,

I am sorry to hear you are experiencing a similar issue to me.  I had a call from the Sarcoma clinic last week to tell me that they had a multi disciplinary team meeting where my scan results were discussed and they were satisfied that it is a lipoma (fatty lump).  They have advised that nothing else needs to be done and unless it causes me discomfort, it can be left untreated as it is harmless.

just to try and ease your worry, the nurse I spoke with told me that they always refer lumps that may be bigger than 5cm or have abnormal features, however most of the time these are found to be lipomas and nothing needs to be done with it.  They have to refer you to be on the safe side.

I know this won’t really help to ease your worry, as nothing anyone said eased mine, but please try not to overthink it.  I made myself ill with worry and thought that every other ache or slight bit of dizziness was connected to me having the lump.  

it took around 2 weeks for me to hear from the sarcoma clinic following my referral but I’m not sure if it differs where you are (I’m in South Wales).  

I hope this helps in some way to ease your worry, but if you want to know anything else just let me know

Ads X

Hiya,

I'm so pleased for you that everything turned out okay! You must feel so relieved. Exactly as you say, I'm trying not to worry myself sick but it's tough! I feel like every worst case scenario keeps replaying in my head, but at the same time I feel like if I don't worry and convince myself that everything's fine then it'd feel even worse if everything wasn't fine compared to if I'd prepared myself for the worst, does that make any sense at all?  

I've had a call yesterday just to confirm that the clinic have got my referral and that the MDT will be discussing it this Wednesday, and that I'll hear within 2 weeks. So that was nice of them to let me know! I'm South Wales too, so the referral went to Morriston, I'm sure it was the same for you! 

Thanks for being so open and reassuring, I really appreciate it.

X

Hi,

I know, it feels wrong to worry but it also feels wrong not to worry.  Honestly though, don’t let it take over your life.  The team who will be looking at your results are the best at what they do, and they can easily determine a lipoma from anything bad.  Most cases referred to the sarcoma clinic turn out to be benign and they can tell that pretty quick. 

mine was looked at on the Wednesday and I had the call on the Thursday telling me that it was all ok.  The waiting is the worse and it’s bound to cause frustration and worry, but if you’ve been told they having the meeting this Weds, you will hopefully hear from them by the end of the week.  Obviously I am no expert, but just speaking as someone who recently went through the same kind of situation.

yes, it was Morriston who I dealt with and once Sarcoma clinic had my referral, I got the results really quick.

let me know how you get on and if you need to know anything else, feel free to ask.  I found this site really useful and everyone is more than happy to help where they can.  

stay strong!

adz x 

Hi gwdihw I just wondered what your result was? I'm currently waiting for a biopsy appointment to come through. I found a lump in my upper arm in May. I had an ultrasound and an MRI and they thought it was a fatty lump. I was told to wait 3 months and have a repeat MRI. Fast forward 3 months had the repeat scan and it has actually grown. It was 2cm and it's now 2.9cm. They said they still think it's a fatty lump and the biopsy is to find out what kind of fatty lump. I've done the worst and been on Google. I already have the worst anxiety so it's a very bad idea and I've got myself into a really dark place. I've read so many stories of people being told over and over that it's just a fat lump and it turns out to be Sarcoma. I'm even more worried because my doctor did say that it hasn't totally be discounted yet and then reading above makes me think if they were totally confident it was fat I wouldn't need the biopsy. Any advice on how you have coped or anyone for that matter that has any advice or been through something similar. I'm really struggling to function at the moment. Thanks. 

Aw my love I remember being exactly where you were. 

I similarly had rapid growth. Due to this, and because they couldn't be 100% sure it was just a fatty lump, I was referred for removal. I had it out in February of this year, by which time my lump was 2x8x9cm!! 

Surgery wasn't bad at all, recovery was a bit tough with a toddler but all worth it. Had a call a few weeks later to say it had been tested and it was just a fatty lump, which was a huge relief. 

It's such a worrying time, but what helped me was that I was doing everything I could to sort it, it was in the hands of the people who knew best, and that I just had to get on with my life while I waited, because worrying wouldn't change anything. I allowed myself brief periods every week or so to have a twenty minute cry and panic, but the rest of the time I tried to put it out of my mind and carry on. The more I did that, the easier it became.

That's all the advice I have really! I truly hope everything goes well for you and it is just a fatty lump. I remember the fear and the sadness but those are normal reactions to this kind of situation and all we can do is continue to live, so live full and not let the sadness take over before we even know if we have something to be sad about. 

Best of luck xx

Thank you for your reply. I'm so happy you got such an amazing result. It's nice to see that other lumps also grow because the only info I've found online is always bad. Glad to know surgery wasn't too bad as I think I will end up having to have this removed seeing as its growing. The worry is just something else and all I can think is I can't leave my babies xx