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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Original poster

Terrified 2 week referal for suspected sarcoma

15 replies

Worriedmummy8 · 15/05/2024 14:04

Hi,
Just looking for someone to listen as I'm currently spiralling. I have really bad health anxiety and this has sent me over the edge.
2 weeks ago I visited my gp with a lump on my upper arm. You can only see or feel it when I pull my arm back and tense the muscle. I found it accidentally in the shower.
She thought it was from an injury so told me to come back in 2 weeks. I went to the follow up appointment and nothing had changed so I was referred for an urgent ultrasound. I was really lucky and magaed to get one the same day. I asked the technician if he could tell me anything (crying at this point) and he said it could be fat attached to the muscle but he couldn't say and also couldn't rule out cancer.
I went away feeling a lttle better but then got the report on my app. It says it's just under 2cm, no internal vascular flow, appearances suggest a subfascial lipoma but given it's deep location a specialist referal may be appropriate.
The doctor then rang and said she would be doing an urgent 2 week referral. She said it was just to cover all bases and hopefully it is only a lipoma. She also said she hasn't seen any lipomas that deep. She seemed worried.
I got the referral through on the app the morning and seeing suspected sarcoma in black and white was really hard.
I've done the worst and googled and got myself in a complete state. I have little kids and I'm terrified of leaving them. Like I said before I have health anxiety and also ocd so I'm really struggling and just need a bit of support.
Has anyone else been through similar? Also I've tried to look online but is no internal vascular flow a good thing or bad? Has anyone else had a deep lipoma? Has anyone had a subfascial lipoma? I also have some elbow pain a little bit below the lump.
Thanks.

OP posts:
GinandGingerBeer · 15/05/2024 14:11

Sorry to hear what you're going through op. I know how stressful those 2 week wait referrals are Flowers
I have no experience re lipomas, sorry, all I will advise is... try not to Google, it's not going to change anything and will only make your anxiety worse.
Once your GP has made the referral you could contact the team directly and ask that they notify you if there are any cancellations.
Good luck- I hope your appointment comes through quickly.

Original poster
Worriedmummy8 · 15/05/2024 14:37

Thank you so much ❤️

OP posts:
Original poster
Worriedmummy8 · 15/05/2024 16:05

Bump anyone else have any experience? I'm absolutely terrified

OP posts:
CulturalNomad · 15/05/2024 16:28

no internal vascular flow

This finding strongly suggests a non-cancerous growth. But cancer can never be 100% ruled out based on an imaging test alone, so it's likely they'll remove the lipoma and the tissue will be sent to the lab to confirm that it is benign.

Alternatively, the specialist may examine you and based on her physical findings and the ultrasound report be confident that this is a benign growth.

I had a lipoma removed from the top of my shoulder 10+ years ago. I did it for cosmetic reasons and never considered cancer. The tissue was sent to the lab and was benign.

So try not to worry yourself sick. STOP googling! Your GP is not an expert and did the correct thing by referring you on, but that does not mean cancer is likely. Take care.

Original poster
Worriedmummy8 · 15/05/2024 19:25

Thank you so much for your reply @CulturalNomad I'd been trying to Google what it meant and just kept getting mixed results. I really wanted to go through the scan results with my doctor but because of my anxiety I don't feel like they would want to be bothered by me. I've had a lipoma in my armpit for as long as I can remember but the one is like a pea and just below the skin. This is much larger and very deep. I suppose that's the worry really. Thanks again for getting back to me xx

OP posts:
NeverDropYourMooncup · 15/05/2024 19:33

Mate of mine. Lost soome weight and then noticed a small lump on his back. Didn't do anything about until he mentioned it in passing to the GP. Urgent investigations later and it had got much bigger.

Turned out to be a deep lipoma that they decided was too deep to remove.

He now calls it his Evil Twin.

CulturalNomad · 15/05/2024 21:24

@Worriedmummy8 Lol, I don't even want to tell you how large that lipoma on my shoulder was! I thought it would be a big deal having it removed so I let it get quite large before doing anything about it.

Surgeon removed it in the office with just the shoulder area numbed. No big deal, a few stitches and the scar is barely noticeable.

Elisabeth3468 · 24/07/2024 21:19

Any update op @Worriedmummy8 ?

Original poster
Worriedmummy8 · 03/09/2024 13:02

Hi. No further along unfortunately. They aren't sure if it's just a very deep intramuscular lipoma or if it's a aytipical lipomatous tumour (which could be cancerous). I'm just waiting on results from some tests but the waiting and panicking continues. I think it's looking more like a atypical one to be honest. I've been so worried for months. Are you going through something similar? @Elisabeth3468

OP posts:
Elisabeth3468 · 03/09/2024 13:24

Worriedmummy8 · 03/09/2024 13:02

Hi. No further along unfortunately. They aren't sure if it's just a very deep intramuscular lipoma or if it's a aytipical lipomatous tumour (which could be cancerous). I'm just waiting on results from some tests but the waiting and panicking continues. I think it's looking more like a atypical one to be honest. I've been so worried for months. Are you going through something similar? @Elisabeth3468

Yes I am. A couple of months ago I found a lump in the muscle , in the trapezius muscle like shoulder area. It's as big as a golf ball but does move.
I had a private ultrasound as couldn't stand the waiting and he said it's a muscle hernia. But then had my nhs ultrasound and they said it looks like a lipoma but now they want an MRI. I'm still worried sick but try and just get it out of my mind. Was referred for the MRI 8th August and it was sent as routine.
I'm 23 weeks pregnant as well which doesn't help the situation . I just want to know it's benign so I can carry on living, it's always on my mind.
Are they worried about yours? What tests have you had?

Original poster
Worriedmummy8 · 03/09/2024 18:30

@Elisabeth3468 Im so sorry your going through this, especially at such a special time in your life! I know exactly what you mean about wanting to get on with life again. I've been worried sick for months and find it hard. Honestly my anxiety is through the roof. I would say I would take comfort in that they aren't rushing you through. All my appointments and scans have been very urgent. I do think they get a very good idea from the ultrasound and the mri is just a much more detailed way of confirming what they have seen. Have you been referred to the Sarcoma team? That was scary to read for me. If you have try and get hold of the team nurses. I have spoken to a few on the phone and they have been great with me. I have been given different info a few times which has caused more anxiety but they have helped a lot in other ways. Here if you need a good chat and keeping everything crossed for you. They may also be able to get you seen quicker if it's causing you stress it's not good for your baby. Xx

OP posts:
Original poster
Worriedmummy8 · 21/09/2024 09:27

Any updates @Elisabeth3468 ive now got to have a biopsy as my lump has grown. Absolutely terrified and struggling to cope at the moment.

OP posts:
Elisabeth3468 · 21/09/2024 13:33

Worriedmummy8 · 21/09/2024 09:27

Any updates @Elisabeth3468 ive now got to have a biopsy as my lump has grown. Absolutely terrified and struggling to cope at the moment.

What a worry for you! Did you have an MRI test? Is the lump painful?
So I am still awaiting MRI but I actually called the Gp last week as the waiting is ridiculous and it's stressing me out along with being pregnant so she's done a two week wait referral now. So hopefully things move a bit quicker. Think my lump has stayed about the same size but hard to tell as it's so deep in the muscle. Just want to know and put this behind me. Clinging onto that the ultrasound thinks lipoma. But one ultrasound (private) one said a muscle hernia which isn't even a thing apparently x

Original poster
Worriedmummy8 · 21/09/2024 14:52

@Elisabeth3468 What a nightmare that they haven't even arranged your mri yet. I'm glad you've spoken to your gp and things are moving along a bit quicker now. It's such a stressful time waiting never mind being pregnant too. Try ringing the radiology department. Thats what I did and I managed to get an mri quicker? Have they referred you to the sarcoma team? Yeah I've had a repeat MRI. That said that it's got bigger, it was 2cm and it's now 2.9cm. It's also changed shape. No it's not painful but I do get an achy arm sometimes. They said they still think it looks like fat but they can't be sure so I need to have a biopsy to confirm. It's honestly the most terrifying thing. I thought it was just a fat lump so didn't really think about it for those 3 months waiting for my repeat MRI. I also wasn't expecting it to have grown. To me that seems a lot of growth in 3 months. I'm second guessing what they are saying all the time. They keep saying we aren't worried and nothing to worry about then I've read loads online where people have said they were told all along that it was just fat and then it turns out to be sarcoma. I'm just spiralling x

OP posts:
Elisabeth3468 · 19/10/2024 21:25

Hello how are you getting on?
I finally had my MRI scan which shows an intramuscular lipoma , they want to remove it.
Need to wait till I've had my baby then they will book me in for surgery. I'm relieved it's nothing serious x

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