Soft Tissue Sarcoma (Upper Right Arm)

Hi ,

It is not unusual that you have not hears of sarcoma as they are fairly rare, good that you have been sent to the Marsden though as they are one of the specialist centres. 

There is a whole host of information over on the main site that might help you explore what might be coming your way in terms or treatment offers and more still on the sarcoma uk website

It can often seem like to get to treatment can take some time as they want to get the most information possible to get the best treatment but sometimes when they go more quickly that can feel even more worrying, not knowing is hard - nobody here would challenge that.

<<hugs>>

Steve

Hi Steve,

Thank you very much for your response. I guess I will just have to wait for my letter, hopefully won’t take too long I am not sure how much of the not knowing I can take.

I had a look at the info you have given me and it has indeed given me more of an insight to what I can expect to come my way so thank you for taking the time to send me that. I really do appreciate it. 

X

Hi, 

I thought I'd check in and see how you are doing. I was diagnosed with a soft tissue sarcoma in my upper left thigh late last year and had surgery to remove it in December. Fortunately they believe they got it all in that surgery and I am now on regular check-ups with the consultant.

Like you, it was quite a slow process from initial appointment to treatment. Sarcoma's themselves are rare, and I had DFSP which is even more rare. It's an unusual feeling having the diagnosis and then waiting on treatment. Do you carry on as normal? Do you start to prepare for time off work, away from family etc? You're left with a lot of uncertainty and it is a weird feeling knowing you have cancer inside your body. There is no right answer to tell you how to feel. Just allow yourself to feel what you feel, whatever that is, and be ok with it. Try and take some comfort in the fact that they can allow for this time to work out the best treatment plan for you, and when looking up information stick to credible sites.

The NHS have targets of starting treatment within 31 days from Decision To Treat to First Definitive Treatment of cancer so hopefully you have heard something by now? 

I hope that helps at least a bit! x

Hiya. Just been scanning through the chat and noticed you had a a Sarcoma in your thigh which is what I have. I'm awaiting consultation now having completed 5 weeks of radiotherapy. Just wondering what your recovery has been like post op ? Cheers Karl.

Hi Karl

Hope all is well.

I also had a sarcoma in my left thigh. Had surgery to remove it ( had part of my muscle removed where the sarcoma was located ). 

My sarcoma was in a large area and I have a well healed 12 inch scar running from behind my knee upwards .

In terms of recovery? That depends on how big the incision will be and how much tumor there is.

I was on my feet more or less straight away but needed a crutch for a few weeks to be mobile.

Everyone is different in terms of healing so take it easy and hope you recover soon. All the best 

ISK x 

Hi Karl

Hope all is well.

I also had a sarcoma in my left thigh. Had surgery to remove it ( had part of my muscle removed where the sarcoma was located ). 

My sarcoma was in a large area and I have a well healed 12 inch scar running from behind my knee upwards .

In terms of recovery? That depends on how big the incision will be and how much tumor there is.

I was on my feet more or less straight away but needed a crutch for a few weeks to be mobile.

Everyone is different in terms of healing so take it easy and hope you recover soon. All the best 

ISK x 

Good Evening Isk

Thanks for the reply and glad to hear you are doing well sounds like you were back on your feet fairly quickly which is great.  Got a few anxious days before finding out exactly how the treatment has gone and to discuss the op. 

Karl.

Good Evening Isk

Thanks for the reply. Glad to hear you are doing well and the fact you were back on your feet fairly quickly is great. Sounds like a similar Sarcoma to mine it's a big tumour but appears to have gone quite soft now which was predicted. Got a few anxious days now before finding out how treatment has gone and to discuss the op.

Thanks Karl.

Hi,

It sounds like Isk and I had similar experiences. I had a wide excision which means they removed the sarcoma, and 3cm of surrounding tissue in the hope they get all the cancer. They will then check all of that to see if this tissue is healthy and 'cancer-free'. Fortunately I was, and so I had one 3-month check up, and now i'm on 6-month check-ups with the consultant. 

Following surgery I was in a lot of pain and couldn't walk at all (I cried when the nurse put my slipper on my foot!). I was kept in overnight so they physio could see me the next day and check I was mobile. Pro's and cons to this- I would have liked to be home, but I got morphine for a bit longer to help with the pain! I was on crutches a good couple of weeks, and my leg definitely still felt weak for nearly 2 months after surgery. I don't know how normal it is, but keeping in mind they took some muscle away, and a lot of going on under the skin you can't see I'm not surprised. I hope that doesn't scare you in that I was immobile a bit longer, but its good to know all the outcomes.

Happy to answer any questions you have :) 

Nicola

Hi Nicola

Thanks for the info. Glad to know everything has gone well for you and your recovery. 

I'm not fussed about the operation and recovery period itself just a bit anxious that they get all the tumour out in one swoop but I'm in good hands.

Kept myself fairly fit leading up to the operation so hopefully that will help in the recovery and hope to get back to the gym soon.

Thanks Karl.