Experience’s Post Op?

Good Morning,

My partner has been diagnosed with this also and his is also in his thigh muscle. We are currently on about the 20th radiotherapy treatment, ends this week, then the operation in 5/6 weeks to remove. My partners is roughly about the same size 10cm.

Not sure what to expect come the operation, how did it go, how is recovery going? I don't know what to expect, any insight you could give would be great, I am currently expecting our first baby in April and op due to be about March time, just hoping to have him better and mobile by the time baby comes.

I hope you are coping Bonnie, as its not easy, every day is so different. Stay strong.

Any experience/ advise would be helpful.

Thanks :)

Hi Danielle 

Recovery is going ok, my partner was in hospital for 5 nights. Today he saw the specialist and they have drained off further fluid, it’s called a stoma when the removal site fill with fluid and they have said , not uncommon. 

Last week we got the good news that the tumour and clear margins were successfully removed. 

He is seeing the specialist again on Friday and they will decide if they operate to clean out the wound. 

Where is your partner being treated, it is important to see a Sarcoma specialist. 

All the best and thank you for your message 

Sorry the Fluid build up is a seroma not a stoma 

Hello,

I had my sarcoma removed from my thigh in September and left quite a hole too, having all the adductor and 50% of my hamstring muscles removed.

I had drains in for several days too, but was discharged after 10days. Unfortunately, the wound site got infected and I was readmitted. I had a vacuum drain (a machine) fitted to extract fluid and this required several trips to theatre to keep replacing and cleaning the wound site. This was over approx. 5weeks.

4months on from my original op and I’ve still got a small (pocket sized) pump removing what fluid is still exuding from the wound site, though it is 95% healed.

I think it’s genuinely difficult for the docs to say how long these things take to heal, as we are all built so differently, but I too had no idea what to expect by way of time. Part of the issue was/is due to the radiotherapy prior to surgery damaging the tissues.

I wear a tight compression stocking to maintain pressure on my leg and I’m certain this helps as it keeps the tissue compressed and minimises any chance for pockets to form.

Hope this helps a little- please feel free to ask anything... it’s a lonely place and if I can help someone else by sharing my experience I am happy to.

Thanks for your reply. It’s reassuring to hear others experience and pleased to hear its is 95% healed.

The surgeon will decide Friday morning if they will operate. 

 How is your mobility now? 

All the best 

Hopefully my journey is a help for your own; we weren’t sure what was common or normal... but I guess no-one does really.
Every situation has its own conditions, the biggest help in reducing the large seroma I had was/is the compression stocking, I’m quite sure.

regarding mobility, I’m able to walk with crutches, which I’m quite content with. It can be quite tiring, but hopefully this will get better in time.

Fingers crossed for everyone in this thread, for surgery and beyond.

Good Morning. Hope all is well? Just wanted to see how your recovery is going now it’s been some time since the last post. My partner has now had his op also and recovering, the first few months after have been very hard emotionally and physically. 

Hi Danielle79

Thank you for getting in touch. 

After another 2 operations in January to clean out the infection and move some muscle around to fill the cavity my partner is doing really well. Clear scans in March of both the original tumour site and lungs, which is amazing news.   He is walking unaided with a slight limp, back on his bike (with an adjusted pedal) and back driving too. All in all very positive after a tough few months.  

How is your partner doing following the operation, and pathology report? 

Thanks for the really quick reply, 

Pathology report was good, as well as can be hoped anyway, clear margins around the tumour but it was down where it was against his thigh bone so took as much as they could. It’ll be follow up scans going forward to check all remains fine. My partner is doing well, he’s had to battle infection since but thinks that’s not been put to bed. He was determined to have his drain out so he could be with me for our babies arrival which was a success but it definitely took it out of him as he couldn’t take crutches or anything in due to covid and we think the drain probably should have stayed in a bit longer! A late night standing on his leg And hobbling round the delivery room knocked him back a little but fingers crossed that was a small hurdle as he’s limping around and even managing to come on a walk occasionally.

Do you mind me asking how much movement your partner has in his leg? Sounds amazing that he’s able to get on his bike, so pleasing to read. My partners leg is so stiff and straight he really can’t bend his knee more than about 45degrees. It is gradually improving but this is without a doubt the hardest bit he’s tackling now, trying to even stand up from sitting is painful and looks like such hard work for him. He doesn’t want to be beaten tho so I know his stubbornness will keep him going!

Thanks for letting me rabble on , Danielle

Infection seems common after removal of the tumour sadly, I hope that it clears up soon. Congratulations on the arrival of your baby, what a whirlwind with Sarcoma and covid as well. 

When did your partner have the tumour removed? Once physio starts that will help. My partner was concerned at first with the lack of bend in the knee, I would say after probably 8-12 weeks post surgery it started to come back , he doesn’t have a full bend now and can not kneel but over time the physio is positive he will get the full bend back. Physio has stopped now due to COVID but he has exercises to do at home. 
All the best and wishing a speedy recovery