Worried about Sarcoma - Lump in Thigh

Hello Enajjane

My goodness I have just looked at the site since this time yesterday and I cannot believe the activity in this group! There are many of you going through the sarcoma journey or the dread and worry of a potential sarcoma. It is a sad day when you arrive at this site, because it is an indication that cancer has touched your lives, but rest assured this is a fantastic forum and we all listen and share our fears and, of course, try to be as helpful as we can.

In my case I injured my adductor muscle in the gym just over a year ago. I realised I had hurt it and rested it over the Christmas period, only to discover some 4-6 weeks later there appeared a sizeable lump (5-7 cm) in the region. After several visits to GP, they did refer me for an ultrasound. The woman ran from the room and burst back in urging me to go down for an MRI. The biopsy a few weeks later confirmed Undifferentiated Pleomorphic Sarcoma (formerly MFH). Even in those early weeks, the tumour was growing at an ALARMING rate!

I went to my GP and got some co-codamol for the pain. It was keeping me awake at night. The tumour was red, angry and a hotbed of activity. Honestly, it was like a generator running, day and night, and I felt drained. I can remember dealing with the news it was sarcoma and thinking to myself 'this is going to kill me'.....

Your father should have something stronger than paracetamol for the pain. Try co-codamol 15 or 30mg as that worked for me, but of course it will bind him up and make him very drowsy.

After referral to The Marsden Hospital I was recommended to go on the PASART 2 clinical trial. As a primary sarcoma patient, they were seeking 39 patients between UK and Holland to participate. This trial was stage two of a previous trial in which sarcoma patients took a daily dose of Pazopanib for five weeks alongside daily radiotherapy. Not everyone is suitable for the trial, of course, but I was relatively fit and healthy with no other prevailing medication conditions. The side effects of the drug were pretty horrendous from what I could gather, but I decided to go ahead. The drug is a protein blocker so it affects the blood supply to the tumour and in a nutshell stops it in its tracks. The most noticeable thing for me was the extreme levels of pain stopped almost immediately and I was able to stop taking pain relief. But another patient I met who also had the same type of sarcoma in her thigh, (but not on the clinical trial) was on morphine for pain relief as it was so extreme. After radiotherapy finished I had a final biopsy and MRI scans. The tumour had shrunk back a bit and was dying off. This was a combination of the drug and the radiotherapy.

Your father will get fantastic help and treatment at The Marsden. I can't praise them highly enough. My experience was excellent.

Please stay in touch with your father's progress and if there is anything I can help with, then please feel free to ask. Thinking of you all. Rosina x

Thank you so much for your very supportive and informative reply. I have been worried that my dad's increasing pain is a bad sign that the sarcoma is growing or getting more aggressive but hearing that you and another patient had pain makes it seem not so unusual. Nurses said sometimes the radiotherapy can cause inflammation and increase the pain. My dad has other health conditions so unfortunately would not be chosen for a clinical trial but I have done a lot of research and pazopanib is mentioned a lot with very positive outcomes. My father's  tumour is in the ' adductor compartment '. I know he has a very tough operation and a long recovery to get through. How are you now? Wishing you good health and happiness. I will certainly keep you updated with his progress. Should he be using aloe vera oil on the radiation site?

PT

hiii there ; did you get your biopsy results ? is everything ok   ? 

It was in the middle of my upper arm, outer side.  It was scar tissue that had once been infected.  Don't know if it was from injections or a break.

Hello again Enajjane

With this type of sarcoma I think high levels of pain is fairly standard. You must ensure your father asks either his GP or preferably The Marsden for further pain relief. They can prescribe something at the hospital there and then for collection from the pharmacy.

The radiotherapy is a whole different ball game. And because your father's tumour is in the adductor region, you may well find he has similar reactions and experiences to myself. My tumour was snugly located right at the very top of my adductor, (inner thigh) adjacent to the groin. By the time radiotherapy and Pazopanib was started it had grown alarmingly and I estimated it must have weighed between 1-2kg in size. I was unable to walk far and sitting down or driving was not possible as it had encroached the rear of my leg. The early weeks of radiotherapy were manageable. I had researched extensively the use of E45 cream versus aloe vera online. The radiotherapy nurses had said NHS guidelines were variable, but that the current consensus was to run with E45. But when I read up on this, I found in the USA the guidelines were against the use of E45 because of the emollients and their 'drying' effects with prolonged use. So I decided to purchases pure aloe vera from Holland and Barrett where they almost always have a promotion running. I found aloe vera to be absolutely fantastic and would highly recommend it. I would slather it over the area treated afterwards to cool and soothe. And most definitely avoid taking baths.  Toward the latter part of the radiotherapy treatment, the nurses started to ask me if 'the skin had broken down' and I was baffled because this wasn't the case and I was doing fine. This was something they asked me almost daily, right up until the last session. On hindsight I realise why they asked me this question. Because of the awkward location of the tumour, the beams of radiation moved around the table to target the tumour from three significant angles.... from above, from a side angle and, lastly, a blast from the back. Now this meant that the very fragile area adjacent to my 'lady parts'/groin was receiving a 'triple dose' of radiation every single day. Once I was discharged home I found that within several days my skin broke down into penny sized weeping sores located at the top of my leg in the fold of the groin. Now these were extremely painful and uncomfortable. The condition is known as 'desquamation'. I was given saline sachets to treat and I was completely bed-ridden because it was impossible to wear clothing over the sores or move comfortably. The trouble with the sores, was that as I soothed them with saline, they would form a 'crust' and then as soon as I moved to go to the bathroom the crusts would crack open which was very painful and uncomfortable. My clinical nurse at The Marsden was brilliant. He sent me some dressings and these were like a second skin which helped enormously.  I suffered for about three weeks in total - as soon as one sore healed, another would appear. It was the lowest point..... I was weeks away from my daughters wedding and I was exasperated as I needed to get organised! With two weeks to go, I finally got up and around and managed to find an outfit for the wedding.

Fast forward some eight weeks and I found myself back at The Marsden for the resection. I honestly had given this part of the journey no real thought. I had been so preoccupied with the drug, and the radiotherapy and latterly the wedding, I realised I was facing surgery with no mental or physical preparation. I told myself that it was the culmination of a long arduous journey and it would be a blessing to be rid of the tumour and, well, in short, a happy ending to a real life horror story. WRONG! The operation went well. The tumour was all but dead. Healthy margins were achieved and pathology report was favourable. They had gotten it all and it was dead as a doornail. BOOM! And then the true low point came...... after seven days my vacudrain tube which I was sent home with became blocked. My leg swelled enormously and I was rushed to my local A&E in Portsmouth. There I remained for a month on a drip whilst they battled with the raging infection. My CRP readings in my blood were well over 500... a normal persons is between 4-11. Every time they attempted to remove the drip and place me on anti biotic tablets, the infection would flare up and I would be back on the drip. I was saddled with pain and the fantastic Oxycodone that I was given from The Marsden was promptly confiscated at A&E as it was not a 'regulation' drug.... they said I would need to ask for it as they would not offer it to me routinely as it was highly addictive. The task of getting this drug administered was exhausting. The general nursing staff/care staff were not authorised to administer it, and so the daily struggle was to find two authorised staff together (almost an impossibility) so that one could administer and other witness the dosage given. It was a living hell  and I am still traumatised from my experience!

It took three months for the infection to finally clear up. In the meantime I was struggling with severe lymphedema in the area above the knee. I got a compression stocking and this helped enormously. Another three months on and the leg is finally feeling more normal. I am struggling with everyday life and the energy required to go about normal tasks. I think this is because of my bedridden period during the infection. I am slowing returning to normal life, but I do get tired very quickly. I try to have a 'normal' day followed by a rest day. This way I can recharge and then deal with another busier day. As long as I alternate active days with rest days I cope fine.

My first three month check up was given thumbs up. My lungs, currently, are clear. The leg is not x-rayed however, and is manually checked. I am positive I would know if there was anything amiss in my leg. It is still very sensitive. My adductor muscle has recovered remarkably well from the butchery. My surgeon was a craftsman indeed! It is a scar I look at with awe and wonder. I am so blessed to be alive and I simply cannot believe what I have endured and overcome in this past year.  I find mobility is now pretty good - not quite as good as before, but pretty good considering. I have no complaints at all considering just 10-15 years ago, my leg would have been routinely amputated! I absolutely shudder at the very thought....

I hope your father is doing ok. I would love to hear further from you on his progress and it is my pleasure to share any help that I can. I wish you all the very best and pray he will be ok. You are in my thoughts every single day.... Rosina x

Hello everyone 

I too was diagnosed a week before Christmas with a sarcoma. I live in the South and I was referred to Oxford Sarcoma Unit. I have so much praise for them. My tumour was 12cm on MRI in Dec and rapidly growing I start Radiotherapy tomorrow 30th Jan I’m scared. Please anyone with advice out there.

Also I’ve read the messages any news from PT? 

Rosie

Hi Rosie

What type of sarcoma have you been diagnosed with? And where in the body? It is one hell of a shock to learn you have cancer. But I have overcome UPS Grade III and it was, like yours, very aggressive. So try to think positively and take it one day at a time. It's also very difficult to control wandering thoughts about what may or may not happen so I tried very hard to limit my thinking to what was actually going on. It takes practice but I found it works.

I found the Radiotherapy mostly ok. It was only after treatment had finished that I suffered the sores to the area that was affected more so. You might find you feel tired during and after treatment.  Are you in much pain? If so, what medication are you on to control this?

Thinking of you.... big hugs Rosina x

Hi Rosie.

I understand how scared you are as I am too, however, my cancer has returned after 12 years in my pelvis and it has gone up my spine in 2 places. I underwent radiotherapy in December and it is extremely effective. I am discussing with my team

What is the best way forward. Who is your team Rosie? Which hospital are you under. Anytime you need to chat please contact me.

I send my love x

Hi Rosina

I was told it is partly myxoidfibrous tissue with bone. It's in my right thigh. Yes you are right I'm thinking one day at a time. 

Yes I have pain and GP prescribed Zapain, it doesn't do much in the way of relief though. I think the pain is more that the leg is swelling so quickly, I can't wear close fitting trousers/leggings as it aggravates. Can't believe that over last couple of weeks my mobility has suffered - just can't weight bare on the right side. Struggling with emotions mostly.

Sending hugs and smiles to you

Rosie xxx

Hi Suzannek

Oh lovely I wish I could be of help to you. Being scared is natural, something we have to go through, it helps to know how others feel in these cases. We need reassurance .   I've been through lung cancer17years ago, I got through- I'll fight with all I got.  I'm under Oxford Sarcoma Service and Southampton for treatment.  Likewise contact me anytime.   Who is your team/hospital? 

Lots of hugs

Rosie xxx