Sarcoma in the Gluteus Medius

Hi Painfree 

Welcome to our community though sorry to hear about what you are going through.

If is my wife who has sarcoma but hers was gynaecological - her surgery was adventuresome and she has had quite a lot of chemotherapy but never radiotherapy.

Having a cancer diagnosis is considered to be an automatic disability in UK law, so I am not sure of what you might like to know on that front.

<<hugs>>

Steve 

Hi Painfree , firstly I am so sorry to hear that, that’s the most rubbish awful news anyone can get. It just sucks.

I hope you don’t mind me reaching out, I am currently awaiting diagnosis and sarcoma is being queried. Also in my gluteus muscle. I am 36 with a 4 Month old baby and can’t say that I am coping well with worry.

How is your treatment going? Did you have a biopsy first? How big is your lump? I am currently waiting for the appointment with the plastic surgeon where they will tell me what will be next following my results ( mri inconclusive) discussed at the MDT meeting.

Hello Katbee,

thank you for reaching out to me . I was diagnosed with a high level large sarcoma in my gluteus Medius muscle and have considerable pain. 
I am now in my 5th week of Radio therapy to contain the tumour. My surgery to remove the tumour is scheduled for 21st March . 
From  what I’ve been told the tumour is very rare. 
I can understand and feel your worry as the worse part of this is not knowing.

I had an MRI scan which showed a large mass. I was then given a biopsy which took 3 weeks to confirm the mass was cancerous. 
From what I have researched most of these tumours are benign as this may be the case with you. Only a biopsy can confirm this.

I know this must be a nightmare for you but there is a high probability yours will not be cancerous . If it is then it could be a low level tumour which is also better than high level. 
I hope this helps Katbee and your final prognosis is more positive 

Regards 

Ivy 

Hi Ivy

Thank you for replying to me and sharing your story. I saw your profile and it just so sad that it took such a long time to reach your diagnosis. Did they say which type of sarcoma it is? I am also sorry to hear you are in so much pain, is that from the tumour or the side effect of the treatment? Hopefully it is working and good that you have a date for the op, to say good riddance to the tumour!

i had communication from the hospital to say that based on my ultrasound and mri they don’t know / not sure what it is. We know it’s not a cyst or a fat lump so definitely a tumour. What kind of tumour I guess it will be determined by the biopsy. I first found the lump at the end of November and I think it has doubled in size since then, which worries me the most as, as you say, it does not feel slow growing. Did you notice yours was growing quite fast?

I am sorry I am barraging you with lost of questions, please do not feel any obligation to reply. I totally understand if you don’t want to talk about this.

i hope your surgery goes brilliantly and that in the meantime you take time to recover from treatment.

all the best

Kat

Hi Kat , 

Many thanks Kat for your message and please feel free to ask me anything. I feel what you are are going through and it’s a very dark and lonely place at the moment. This will change when you find out exactly what is going on and you will get all the support you need so hang in there. 
My sarcoma is high level which means the cells are multiplying quickly and it’s very large . So much so you can clearly see where it is on my gluteus . The pain has been there since May last year and gets worse each day. I think this is a combination of the inflammation initially caused by the tumour and the radiotherapy which is pretty brutal . I take morphine every two hours supplemented by Naproxen and paracetamol. I then take anti sickness and sachets for the constipation. 
it sounds like you have caught yours very quickly which is good news as I had been fobbed off with painkillers for too long until I went private to get an MRI scan so a lot of precious time was lost. 

The positive for me now is that it hasn’t matastisised so is curable. I live in Scotland near the Beatson which has a world class team of specialists looking after me and you will too.  Do you have a date for your biopsy? 
I know you are going through hell at a time when you should be enjoying your wee baby which is so hard 

please feel free to reach out and ask me anything and I will try and help you through this horrific journey.

But let’s hope and pray that yours is benign 

sending hugs 

Ivy 

1. Hi Ivy

Thank you for your reply, it gives me hope that things could be manageable no matter what they find. I am so so sorry to hear that your tumour is high grade, but it’s great news that it can be curable - that what the focus should be on, and you are working towards your target to the remission.

Our timelines are somewhat similar, I had intermittent pain in my hip which started around May last year also, however I have attributed it all to the pregnancy as hip pain is very common on pregnant women. After pregnancy I also thought that my fatigue was just part of the deal, but then I noticed the lump end of November. Been sent to physiotherapist first, who sent me back to gp who thought it was a bone lump so was waiting for x ray which took a month despite being urgent due to Christmas holidays. So then I had X-ray, ultrasound and mri done and now I am waiting for the next steps that were discussed at the MDT meeting. I don’t have a date for biopsy ye as I am waiting for the appointment to talk me through the results of the meeting, my scans and further steps, which I guess would include the biopsy. 

it is good to hear that you have good support and specialist team working with you. That’s half of the battle! I also wondered whether you heard of Sarcoma UK, they are a uk charity  dedicated to sarcoma and their support line is amazing?

I hope you are not feeling too rough today. You are almost there with the radiotherapy, hope you have lots of tlc activities planned to help recuperate and get your strength up.

Big hugs

Kat

Hi Kat, 

A big thankyou for your words of encouragement. I only have two days left of radiotherapy and then 5 weeks of rest with another MRI scan in two weeks time. This is to assist the surgeon to remove the tumour with. 
it’s sounds like your MDT are now on the ball to discuss the way forward. This is also what happened to me and the whole team have  been amazing . 
when you get a date for your biopsy it takes about three weeks for the results. The biopsy is not painful and will confirm lots of things about the tumour. I so hope yours is benign as the chances of it being cancerous is very very low ( according to research ) . 
I have heard of sarcoma uk and like you found it very informative and useful. 
my only advice to you at the moment is to not let timescales slip and ask them for a date for your biopsy. I felt that initially I had to be very pushy . 

Are you based in the UK ? 

Please feel free to ask more questions as I am genuinely thinking about what you must be going through in your mind at the moment with a new wee baby 

hugs 

Ivy 

Hi Ivy

how Are you feeling? Is the radiotherapy all done now?

thank you for your earlier post, yes I am in Norfolk and currently seen in the local hospital. I have my first consultation with the surgeon on Thursday and absolutely terrified. I am just feeling so poorly I know it can’t be good news.

hope you are able to rest now and keeping comfortable so you can get your strength up before the surgery. 

big hugs

kat 

Hi Kat,

The radiotherapy finished on Friday which is good. I still have pain which is to be expected and have just slept for the last three days. 
I genuinely keep thinking about you and how scared you must be. This is the worst time when you don’t know what it is and wising the days away. 
Based on my own experience I would expect that the consultant has arranged a date for your biopsy. If not I would ask him. You may need to be a wee bit pushy.

Find out what kind of consultant he is? Although I guess you have done this as it sounds like you are already on the ball. 

I don’t want to make assumptions as your tumour may be benign but if it’s not then start to demand the highest level of treatment. I’m not familiar with the expertise in Norfolk but I’ll do a bit of research. 

please let me know how your consultation goes on Thursday . I will try and guide you and thinking about you all the way 

sending hugs and good luck for Thursday 

Ivy xx

Hello Kat, 

I’ve been thinking about you today and hoping your consultation went ok. 
Ivy xx