Soft tissue sarcomas

A place for anyone affected by any type of soft tissue sarcoma to support one another, ask questions, and share experiences.

Soft Tissue Sarcoma (Upper Right Arm)

Brazil89
Posted by

Hi guys,

I am very new to this as I have only been diagnosed a couple of days ago. I have been referred to The Royal Marsden after an ultrasound. The nurse who scanned me said it was a soft tissue sarcoma in my upper right arm. She said it was an unusual one and asked if she could contact me in 6 weeks for an update as it was an unusual type. I had never heard of a sarcoma (due to my ignorance) so am not sure whether to be nervous or sad or anything really. Is it just me or does every little/big thing that has happened to me over the last year seem like it is connected to this. I am still waiting for my appointment at The Royal Marsden but have no idea what any of the next steps are. 

Does it take long for the whole process to begin I’m full swing or is it a rather long wait? I hate the not knowing part. 

Anyway sorry to bother you guys just thought I would ask. 

Thank you so much. X

src60
Posted by

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

Brazil89
Posted by

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

NicolaS89
Posted by

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

Wolves1974
Posted by

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.

Isk
Posted by

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 

Isk
Posted by

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 

Wolves1974
Posted by

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.

Wolves1974
Posted by

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.

NicolaS89
Posted by

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

Wolves1974
Posted by

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.

NicolaS89
Posted by

I agree! I remember my consultant explaining I will have quite a large scar. This didn't bother me then, and now I have it doesn't bother me at all. It is all about having a successful operation! Good luck!

Nicola

Wolves1974
Posted by

Thanks for your encouragement much appreciated will keep you posted

Isk
Posted by

Hi Nicola

Yes, it seems like we had a similar experience.

Now reading through your experience has been bringing all the memories back, I believe I filed them away someplace far in my mind

I was in hospital for 3 days and having lost a lot of blood needed a few blood transfusions which meant me missing having any physio in the hospital.

I was also on morphine and painkillers for many months afterwards.

I guess its all a blur now because I had a shock to my system finding about the cancer and also having a 13 month old baby to worry about, so I just had to move ahead ( quicker than I thought).

I had regular 3 month scans and then 6 month and now have been discharged.

All the best to everyone who had been on this journey.

Xx 

Isk
Posted by

Hi Karl

They will do scans before your operation and the outcome will be to get clear margins around the tumor.

If you are active then that will help your recovery.

I took in lots of reading materials and puzzle books but didnt get a chance to do any. 

All the best for your operation and please keep us updated on your progress x