Soft tissue sarcoma in leg-what tests are routine?

Hi Michele

I had a soft tissue sarcoma in my left thigh over a year ago and got treated and recovered at The Royal Marsden in London.

When I was first diagnosed they did a biopsy (to find out what type of sarcoma it is, I have myxoid round cell liposarcoma), then CT of legs and chest to see if it had spread (the type I have sometimes spreads to lungs) and then MRI to get clearer picture of it. 

I started radiation treatment about 1-2 weeks after the biopsy.

Had about 5-6 weeks of radiation treatment, every day on the thigh. Then a few weeks recovery and then surgery to remove the tumour. I was walking fine and back at gym about month after surgery.

Follow up is CT every 6 months of thighs and chest area. 

I hope your sister recovers well.

M

Hi Michele,

From my understanding from Royal Marsden  - MRI's are very useful for the surgeons before operating - But full body CT from neck down to the affected area is standard I believe as to identify any possible spread. My mum has Uterine Leiomyosarcoma - Although they operated and removed the primary - If they had not scanned her whole body and noticed two suspicious small dots on her lungs and followed it up she would not be getting treated for them now! Better safe than sorry!

I believe it's always precautionary.

All the best and hope your sis recovers well

Paul  

Oh and try not to get too panicky (I know it's hard!) over all the scans and appointments. Second guessing is so easy to do but the hospitals have a strict procedure to stick to and dot all their i's and cross all their T's. For example when referring to my mum's treatment in the first couple of months they used the term 'Management Plan' which I found peculiar given they were talking about a human being! But they literally have a check list to go through for these things!  

Hi Michele,

I am so sorry to hear that your sister has been treated so badly, there is no way that she should have recieved those results by telephone, she should have gone to the GP's office, and the GP should have explained what it was, and how it was going to be dealt with. In my eyes he has failed you miserably.

But on a good note, it looks like things are moving ahead pretty quickly, by the time you see the consultant, all the scans should be done and he should have all the information to have formulated a treatment plan. Now in my case my lungs were clear and i just had the sarcoma on my shin, so it was just a case of removing the sarcoma, then taking some muscle from my thigh to fill the hole with and then some skin grafts to put over the repair. that could be pretty much the same for your Sister. After my Grafts had settled down, i then had 6 weeks of daily radiotherapy, after which i was clear for one year, but had 3 monthly chest xrays.

The one test that will happen more than any other is the chest x-ray, this is because the sarcoma is well known for going to the lungs, and this is where i am at the moment, mine has come back and is in my lung.

But at this stage for your sister they are just checking everywhere to make sure that it is just confined to the leg and has not spread anywhere else, i know it is all a bit overwhelming, but the activity will ease once treatment starts and you all know what is ahead of you.

When you go to meet with the consultant, you may be assigned a Macmillan Nurse as your key worker, as i was, i found mine to be a great help, and a good source of information, until then you can always call the support line on this site if you need any help or information.

Hope it all goes well xxxhugxxx

Hi Michele

MRI scans are routine. as posts above advise, they will do a CT scan to see if it has spread to the lungs as this is the most common place for the disease to travel to for a lot of sarcomas.

IF There is anything on the lungs, they will more than likely do a PET scan to check if it has gone to anywhere else.

We all know how your sister is feeling, and send her positive thoughts and virtual hugs. She is not alone - i felt so alone when I was diagnosed.

I am two years post diagnosis and I have a wonderful relationship with the sarcoma team and sometimes do have results via the phone but this would never have happened at the start.  Not to justify the Dr's actions, but perhaps he thought your sister would want to know immediately rather than wait for an appointment and worry until she was seen.

i hope all goes ok 

Emma xx

Hey michelle

i remember being in your shoes well over a year ago. Sarcomas are

rare so if your making the best of the worst situation - your sister is a special person !

My husband was diagnosed with synovial sarcoma in right ankle. We were told for a year it was just a swollen ankle - last time I forced him to hospital they ran very similar tests and diagnosis was quick.

this was just as new to us as it is to you and the worst thing you can do is think what if During every test !

dont quote me on numbers but about 50% of sarcomas mets to lungs as was the case with my husband And why they scan the lungs to see if it has spread. 

His right leg was amputated (bounced back in weeks and has a fancy prosthesis)!!!

unfortunately in our case there is no more that can be done for my husband due to a number of factors but i know everyone will agree here that the best bit of advice we can give you is to:

- take every day as it comes  what ever test the hospital do is in your best interest

- docs don't always tell you why tests are run until they are sure what is going on - just go with The flow

- do what you can to stay positive for your loved one  As long as she is strong mentally and physically she will just keep fighting that cancer  !!!!

- there's always another type of drug they can try so the first treatment is not always the last

- link up with your macMilan nurse  - if you need to talk to someone dont wait until you explode  :)

good luck and God bless

louise

Hi Michele, sorry to hear about your sisters diagnosis and journey. 

My husband had a  high grade soft tissue sarcoma on the back of his left leg by his knee, after diagnosis he had 6 weeks radiotherapy, then surgery to remove the cancer and a skin graft, he now has 3 monthly follow up appts for at least 5 years, here in New Zealand they do a chest xray as routine follow up as this type of cancer can spread to the abdomen or chest area.

As long as he appears to be well, and does not develop a cough or unexplained weight loss we have been reassured that the only follow up that is needed is to check the area for regrowth at the original site and chest xrays.  

This is a very confusing time for you all, wishing you and your family all the best,

Meryl

Hi Michele,

Sorry to hear about your sisters diagnosis, I know how worrying it is, I was diagnosed with a high grade synovial sarcoma in my knee about 15 months ago. It was originally removed by a surgeon who thought it was a cyst, but then pathology discovered it was a sarcoma. I was then referred to a specialist team and told from the outset I was facing surgery followed by 6 wks of radiotherapy, but before they could operate they needed to confirm that it hadn't spread so I had a MRI of my leg and a full body CT scan.  The CT scan came back clear but because it  picks up tumors and not cells I also had a full body PET scan which can detect cancerous cells.  So MRI, CT and PET scans are all part of building an understanding of what the Drs are dealing with and putting together a treatment plan.

As one of your previous replies stated, about 50% of patients have a recurrence either in the same area as the original tumor or it can spread to the lungs and most are within 2 yrs of diagnosis so patients are reviewed every 3 months for the first couple of years and this involves having a chest x-ray before each review.

My advice is to take each day as it comes and don't "Google"  for information as you will scare yourself stupid.  Your sister should get allocated a specialist consultant and a clinical nurse specialist in a Sarcoma Multi-Discipline Team and they will provide all the necessary information.

Hope this helps.

Hi Caz here

I also have a myxoid liposarcoma in my right thigh just above my knee.  I was interested to read that you were walking fine one month after your operation.  I am currently in the planning stage for RT which I hope will start before the end of November.

This seems to have been a long drawn out process for me as I had my biopsy on 7th August and did not get the results until the 10th September and as I say I am still waiting for my RT to start.

With the current timescale it is likely I won't get my operation until late February.  I was told it is likely I would need 3mths recovery time post-op.  I wondered if you were just superfit and lucky to be back at the gym within a month of surgery.

I would be interested in your thoughts on this?

Kind regards

Caz