Hi London2014

Welcome to Cancer Chat.

I'm sure there are others here who will understand how you are feeling in the run up to your next scan.

Sometimes when things get busy new posts can slip off the front page before people get the chance to read them.

My reply will boost you back to the top of the list.

I hope you receive a reply soon.

Best wishes

Jane

Cancer Chat Moderator

Hello,

Are you still active on here. I would love to talk to you xx

Hi Jane, 

I have just joined here and wondered if you know if the user above your comment is still active. I would love to talk to them.

Thanks x

Hi Katie

Welcome to Cancer Chat. It was a good idea to post on this thread because there is a chance that London 2014 will receive a notification of your post and will come back to you.

While you are waiting for a response, if you would like to ask our nurses about anything please call freephone: 0808 800 4040, Monday to Friday, 9am to 5pm.

The team will be happy to talk to you.

Best wishes

Jane

Hi Katie, yes still active here, did you also have a sarcoma?

Hello, 

Sorry i did not see your response. Yes i actually have one currently, just finished 5 weeks daily radiotherapy. I have a malignant myxoid liposarcoma in my left inner thigh in my abductor longus muscle. I have just completed 5 weeks of daily radiotherapy and now in a 6 week break until my surgery on 12th August. My skin and surrounding area of treatment is on the last stages of healing - after many painful areas of burns, open wounds and blisters. The surgeons have advised the surgery is straight forward to which they will be removing the muscle in my thigh.

They have advised it has been successful many a times. I have been off work since the day i got told since April/May 2015 as to begin with like most people i was suffering panic attacks and anxiety. I would’nt leave the house and just literally fell apart. I then became confident enough for a while to carry on and felt better speaking out to my friends and family - although i am only happy to know as much as i want to know, if that makes sense.

Everyone is advising how brave and strong i have been but i guess its just what we have to do. I am really struggling with life right now, being my age also a lot of friends are in the process of becoming engaged, having children, buying houses or just generally partying, holidays and having a good time. I still have the questions why me? what happens if this happens or that happens and just feel stuck in a rut. All my family and friends can do is support me and remain positive. I just want to make some friends who have either had/have what i have or people who are around my age group going through cancer to just know i am not on my own.

This year was the first year i literally had planned in advance and have had to cancel everything from a few trips abroad, 6 hen do's, 3 weddings and the list goes on. Im so down and it's now affecting my relationship with my boyfriend as i'm so angry and uptight, cry myself to sleep and just hate everyone and the world right now although i know its no ones fault. My boyfriend and my Mum have been rocks up until now but i just feel like a burden and it's just too much for them to take on with full time work and their own lives.

Just trying to find reassurance that i am not going crazy and life will get better. The main problem is trying to move on after surgery. Im so worried it will come back, it will destroy my life. I feel as if i can never have children now, if it came back i couldn't possibly look after children as well as try and look after myself. I love going abroad but worried incase anything happens. My head is going around in circles. I am drained and tired.

I would appreciate any help and/or advice. xx

Hi,

Would be happy to give advice, sounds like you have a very similar sarcoma to me. 

Mine was also myxoid liposarcoma in my left inner thigh..6 weeks of radiotherapy..followed by surgery a month later.

The surgery is straight forward, woke up groggy, stayed in hospital for 4-5 days, sore to walk for about 2 weeks, slight limp. But was back at gym about 1 month after surgery doing gentle exercise and made a full recovery with no limp. Thigh is just tight in some yoga positions as sartorial muscle was removed.

My advice: well, this helped me:

1. Keep busy, I worked part-time through it all but did have an afternoon nap if I ever felt tired
2. Go to local support groups
3. Do everything you can so that you recover well, eat healthy, gentle exercise like walking/yoga helped me

My surgery was nearly 2 years ago, no recurrences, no bad side effects, feel fine. I have a CT scan every 6 months. 

Getting married and will be starting a family this September….

You have literally just lifted a weight. I know each is different but it is nice to speak to someone who has had what i have currently exactly the same sarcoma, leg and area just muscle next to it. Your living your life and its amazing. 

Do you ever worry that it could come back? Did you get bad sores, blisters and could barely sit down etc??

Sorry for all the questions. May i ask your age and what hospital you were treated at through all this? 

xx

Hi,

Glad to help!

No side effects at all, no sores or blisters, I do Pilates, yoga and jogging 3 times a week no problem.

I worry before each CT scan but that's normal. As time passes I worry less but still usually at the back of my mind. Don't want to waste my life worrying about it!

Unlikely to get a recurrence as sarcomas hate radiotherapy so it's very effective treatment.

Am now 37 yrs old, was treated at Royal Marsden in London.

Next CT scan on 1st September...will be the last one.

M

See i have suffered badly with the burns, blisters and open wounds. I had no marks at all until a couple of days after end of treatment - all on my thigh and groin area. 

I was actually worrying as i have not been checked obviously since treatment worrying if radiotherapy has worked - but you have just stated how effective it is so fingers crossed. 

I live in berkshire and have been seen and treated in Oxford at the Churchill Cancer Hospital adn surgery will be across the road at the Nuffield Orthopedic Hospital. I cannot fault them from visiting my doctor, being transferred between 3 different hospitals, scans, biopsy, results and treatment planning it took 7 weeks. 

Its been so good talking to you, i hope i can keep in touch with you. I would also love to know your last scan result too. 

Are you on here regulary? x