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Diagnosed with sarcoma

nat-l-d-1988
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After 8 weeks from the removal of a lump from my arm I have had the diagnosis todsy that it is a sarcoma. I had a ct scan last week and that has thankfully come back clear too.

I didn't get much more information as it was the dermatrologist who phoned me as I was originally under him. He said the next stage now was another operation to have further skin removed. 

Sarcoma seems to very rare and not much information out there.

I am just wondering has anyone been diagnosed with sarcoma? 

  • Offline in reply to maryann1920

    I'm still in limbo waiting for my MRI results. I'm in pain and not feeling too good but this could be due to another health issue I have been dealing with for almost two years. It is very stressful so I know what you have been going through. Results take so long. Let's hope all goes well on Wednesday. Whatever mine is, I am looking forward to having it removed as it is pressing against nerves and painful.  Keep strong and make sure you look after yourself. X

  • Offline in reply to PostMenoMadness

    Hi Maryann

    Just checking in to see how you are and hoping all went as well with your husbands operation on Wednesday.  I finally got my MRI results yesterday and have been told the lump is a lipoma.  However, I have been referred to the nearest sarcoma specialist centre as the location and size of the lump needs further exploration. Therefore, the journey continues.  So many others, just like your husband, are told the lump is a benign cyst, lipoma etc only to have a biopsy and told it is sarcoma.  I won't relax until I have a biopsy for that reason.  X

  • Offline in reply to PostMenoMadness

    Hi both, I'm also in a similar situation. I have a large lump on my thigh/hip which has benen growing for 2.5yrs, with accelerated/obvious growth in the past 3-4 months. It looks like my left thigh is 30% bigger than the right and is painful (?pressing on nerves). I've been diagnosed twice with bursitis in orthopaedic depts. I've also had an ultrasound which showed a lipomatous lesion (tumour) 18cm x 6cm followed by an MRI which the ortho consultant refused me access to (I'll challenge this) that in his words was 'completely normal, nothing to worry about, and just me ie how my body stores fat. He also said 'welcome to old age it's not fun'. I'm 46. All of this has taken 6 months from first seeing my GP in September 2022. 

    Needless to say I'm totally confused now, and about to see my GP again on Tuesday. I'd been referred to sarcoma team on 2ww after the ultrasound but the MRI and the meeting with orthopaedics last week is a triage service so I think I've now lost my chance to get a review from the sarcoma team. My lump is huge, painful and growing and resistant to painkillers and I also have unexplained severe lower back pain. I was told by the same consultant lose weight and it will go away but it's not like any other back pain I've had. I'm about a stone overweight. I find this absolutely incredible here in 2023! 

    When you said Maryann that your husband's lump was benign on MRI but still turned out to be a sarcoma you answered the very thing I'm struggling to understand and perhaps this is the reason I'm still not able to let this rest. I don't see how the ultrasound radiologist could measure the lump but MRI which is much more detailed couldn't identify it at all. I really need to see what the MRI actually says, not just be told 'it's fine' and carry on in all the pain I'm in without an explanation. Also PostMenoMadness you said your lump was identified as a lipoma but you have still been referred because of size so I'm hoping this is still an option for me. These lumps can get big in the thigh as there is a lot of space, which is why I put off going to the doctor for two years, only going when it was obviously growing quickly and causing pain. 

    I'm thinking of paying for a one off private consultation with a sarcoma specialist so I can rule this out completely and/or find out if there is a benign mass which can come out because it is causing pain. I already did 3 months of physio and now I'm being told to do the same again ie another 4-5 months delay before anyone will investigate anything else eg my back. 

    I wish you both all the best and hope everything goes well for you. I can definitely echo the positive experience of being advised by sarcoma UK who were instrumental in helping me get the referral. Might have to call them again tomorrow. 

    best wishes, Fiona 

  • Offline in reply to QueenofCalm

    Hi QueenofCalm you are quite right to question your diagnosis as you know your body better than anyone. I thought it was worth mentioning that, apart from the size, I have been referred due to it being located inside a muscle in my upper arm. I believe only a small percentage of lipomas are intramuscular. However, I think the main reason I have been referred is due to a neurological disorder I have, which is yet to be diagnosed and cancer could be the root issue. I am grateful for the referral as this lump (whatever it is) needs to be removed as it is affecting my daily life now. It only appeared 8 weeks ago and continues to grow. I don't like painkillers but now on codeine so I can get at least a couple of hours sleep. It's so frustrating but I am very lucky as the medical staff have been so very supportive and leaving no stone unturned. I really hope you get some answers too. I saw my lump during the ultrasound and it was clearly visible in my MRI I have been told so you are right to question. X

  • Offline in reply to PostMenoMadness

    Thank you so much for your reply. It sounds like you have a good supportive team around you and they're getting on with it so that's great. I will be thinking of you and hope that lump can come out asap. I know what you mean about the painkillers. I don't normally take anything, but now I can't bear the pain without them. Hopefully it's just a temporary measure and we can get to the bottom of it. Wishing you all the very best for everything x

  • Offline in reply to QueenofCalm

    Hi all. 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. 

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