Hello everyone! Soft tissue sarcoma in arm

Hi Gary15 

Welcome to our community, I hope you find it useful.

It is really natural to feel terrified with any cancer diagnosis and as you know sarcoma is rather rare and so can make getting really good information that bit more difficult. Well done to your GP and your cancer team for getting you so far down the line so quickly - though in itself being quick can just add to a certain sense of worry.

My wife's cancer is rather different in that it started, they think, in her womb before going round her system and settling in her lungs. Still her diagnosis was over 10 years ago and with two lots of chemotherapy they have managed to make her cancer stable - as she says it does not bother her and she is not really bothering it.

<<hugs>>

Steve

Thanks for the reply Steve, and nice to meet you!

I agree that the rapidity, although welcome, is another source of worry as its highlighting the seriousness of my situation. I'm trying not to think too far ahead, as when I do my anxiety threatens to become overwhelming.

First step, the operation  - which has just been confirmed for coming Wednesday - then after I heal, I'll worry about the coming aftercare. 

I'm hoping someone here has had a similar experience in their limb (arm or leg) so they can talk me through what to expect in the aftercare stages.

I'm so glad to hear about your wife. I'm wanting to be rid of cancer - I'm finding it difficult to think in terms of living with it. Very early days.

Speak again soon.

Can't offer advice right now...but yesterday morning I was diagnosed with a soft tissue sarcoma in my boob.....has absolutely flawed me. Found the lump on Aug 31st and initially the biopsy results were for a ruptured cyst and theyd see me in 6 months, but the thing has grown pretty rapidly and my gut said to go back to them, they sent me straight for a second ultrasound and second biopsy. And now this. Referred to the Royal Marsden, just waiting for them to contact me for a scan and to start whatever rollercoaster this is about to be!

Evening, I can completely relate to your story. Try and stay positive and have faith in the amazing surgeons and specialists because they really do seem to know their stuff. I have had very similar but on my right knee just to the left and above the kneecap itself. A lump that is comparatively small to others at 6cm. I, like you have had my world turned upside down, I have finished work while I attend the mountain of scans etc and am unsure if I'll return after surgery as my job is so physical. I have 25 consequative days of radiotherapy starting next week then surgery to remove the tumour 6 weeks after that. Like you, mine has not spread and I am so thankful because the fear from waiting is like no other I have had before. I wish you the very best of luck and I am here if you ever want to reach out for a chat or progress report!!! It would be great to keep in touch.

P. S. 44 year old female from Wales  so having treatment in amazing Welsh hospitals 

Hi Gary15

Sorry to hear your diagnosis, the initial shock takes sometimes takes a while to get to grips with. This forum is a great place to get support and hopefully you will have been provided with a Macmillan contact. My initial surgery was gynaecological and recovery took about 5-6 weeks until I healed and could drive etc (No chemotherpay / radiotherapy that time)

I have just been accepted on the 2 week sarcoma pathway again yesterday, having only seen my GP on Wednesday (I was diagnosed with Leiomyosarcoma back in 2021) for a lump in my arm, so in a similar position to yourself. Its causing me some anxiety, but just wanted to let you know you're not alone. For me I find it helps to talk, prepare for what's coming and build a small supportive network.

Stay positive

Krazychrissy

Hiya, so sorry it's taken me so long to reply, but I was admitted to hospital for my surgery last Wednesday, and was only discharged today. So glad that you followed your gut feeling! I was talking to a specialist nurse recently and she was saying that the rarity of soft tissue sarcomas can make it initially a difficult diagnosis. For some sarcoma subtypes, she described it as a once in a career lifetime encounter event.

Were both at the very start of this journey - We're all here anytime you need to talk about your Rollercoaster ride.

Heya Danni, many thanks for your reply!

You're so right a out the waiting fear. I can deal with data - the unknown is terrifying, and I completely relate to what others who have to wait are going through, and the dark places thoughts can lead you to sometimes, when sleep wont come.

I went for surgery last Wednesday, and they removed an 11cm sarcoma from my tricep. It had apparently grown since the last MRI I'd had done! Scary. The margins were good and its all out now, so phase one of the plan (get rid of the sarcoma) is complete. I lost so much arm muscle that they had to graft-in thigh muscle to patch the hole, so I'm having mobility issues now, but assured that this part should heal quite quickly.

Phase two is prevent localised return or spread. I have a meeting next Tuesday to discuss options going forward -  but I'm happy to do what I need to to get improved chances of good outcomes. Radiotherapy I think. I'm thinking of it as a belt and bracers approach.

The best of luck and health, Danni! Yes - let's definitely stay in touch. 

Hi Krazychrissy! 

I'm finding that knowing that there is support available from folk who can directly relate to the anxiety and fear very helpful. Its knowing that i'm not alone that helps me to refocus and not to dwell unduly. 

I've managed to talk to folk undergoing or who have had experience of aftercare here, too. You're so right about having the mental space to prepare for what is to come. It removes some of the mystery and lessens my fear when it's described by folk who have undergone it.

I'm still waiting a subtype - but my specialist contact nurse rang today to let me know that the margins were good, and that I'm sarcoma free! Good news! Now I just need to adopt a bet and braces approach in aftercare to prevent its return or spread.

Thanks for your message! I really appreciate it.

Hi Kin Wonderland

i have also just been diagnosed with sarcoma in my breast would you mind sharing what happens next? I’m waiting for a scan to see if it’s spread and also waiting for the royal Marsden  to contact me.

many thanks 

Lydia. 

Sorry to have missed this reply, I am now on day 13of radiotherapy and firstly have to say the hospital at Velindre Cardiff are amazing. All the staff are friendly, patient and understanding (which sounds obvious, but it's not like that everywhere, they really do give the patient time). I am feeling relatively OK have had a few humps along the way but probably just my body adjusting. I, like you see it as a means to an end. Everything is scary in the world of any disease/illness but sounds like you are well on your way. I hope the surgery wasn't too gruelling for you and that you regain your mobility soon. Advice Iv been given so far, is listen to your body and do what it tells you. Best of luck going forward x