Retroperitoneal sarcoma

I have the same from excision of retro peritoneal tumour 7 yrs ago. It’s a result of the unavoidable damage to nerves running down through your abdomen. At first it was very painful and sometimes itchy but I can’t feel the scratching! Over time it’s got better but I’m still very numb. I too was not warned and when I brought up the subject at a follow up appointment the consultant said ‘I’m surprised your not numb from your nipple to your knee with what I’ve done to you!’ So very much considered part of the collateral damage. After about a year I started having deep tissue massage to my thigh and lower right abdomen and I have found this very helpful. It eases the tightness I experience in the area of the numbness but you need to heal first. Be warned it affects my ability to lift my leg and I trip up steps easily. But I’m now very active again and grateful for the success of my surgery. Good luck with your recovery it takes a while. 

Hi Pamela

                  I can imagine how things are at the moment just a couple of weeks after - I hope you perk up soon. My experience as I said now three years on from a very similar operation - but left side oriented - is that I`m fit and able to do most of the usual things in life and there is light at the end of the tunnel.

Best to get walking as soon as you can with short walks on the flat at first graduating into longer and uphill - I found walking a great help - good exercise and gives you an appetite.

All the very best for your recovery

Mark

Mark

Thank you so much for your prompt reply. I’m trying to get out twice a day for a short walk/old lady shuffle (I’m only 56 and previously very fit) but fatigue at the moment is huge and I’m having to pace everything I do - which is very little. 
I know it will get better but it’s a struggle at the moment. 
Regards

Pamela

Hi Janetyjane 

Thank you for your prompt reply. I know I’m still in the very early stages of recovery post-op but pre-op I was fit and active and had no signs or symptoms of sarcoma. I was very fortunate as it was found very early as an incidental finding on another routine scan so it has all been a bit shocking to find myself here. 
I’m trying to get out for a very short walk/old lady shuffle (I’m only 56!) twice a day and I know it will get better as the time passes but tbh I’m struggling a bit at the moment. 
Thanks again for your reply and advice. 

Pamela

i was 56 as well! mine was 3.5kg and was found as a result of symptoms. I have to say it floored me and took me a while to get to grips with all the collateral damage for instance my duodenum was removed but nobody thought to tell me I would need vit B12 injections! Plus as I said I fell over quite a bit with the nerve damage plus my gut took a long time to settle and will never be perfect. However I now walk regularly play golf and ski so the future is bright for you. So allow yourself to heal don’t expect to be bouncing around any day soon. If I can help any more please get in touch the emotional aspect of being seriously ill last a while so don’t feel your on your own.

Janet.  

Hi Janet, would you be able to share more about your nerve problem? My femoral nerve was really aggravated and also apparently cut during my op. Having problems walking, pain etc. Thank you!

Hi Janet

Thank you so much for your very reassuring reply. I’m learning that I can’t look at how I am today compared with yesterday, I have to look at what was happening last week to be able to see any improvement but it feels very slow. I’m learning patience - very gradually

I know I have a mountain to climb ahead of me but my surgeon has given me the chance of a long life ahead of me so I owe it to him to get my fitness back and look after and appreciate my body for what it can still do going forward. 

You’re absolutely right about the emotional impact and I’m having ups and downs but can accept that this is normal. 

My nerve damage to my leg is probably my most bothersome issue at the moment but I can move my leg more or less normally and can do steps and  stairs so I guess I’m luckier than many people  

I'm very glad to have found this forum and thank you again for your response  

xxx

Hi sparky2

sorry to hear about your nerve damage. I don’t think my femoral nerve was completely cut but certainly my leg was unreliable for quite a while. At first my thigh was very painful and sometimes I thought I’d lifted my leg only to find it was still on the ground. It was a very weird sensation and often happened when I was getting out of the car I’d think I’d moved my leg out but hadn’t. That has mostly passed now. Over the months following surgery my hip became very stiff and I couldn’t lie down with my leg flat it was as if the thigh muscle was contracting it was very uncomfortable at night. I have found deep tissue massage very helpful. It is very uncomfortable whilst it’s being done but gives enormous relief afterwards! She concentrates on my lower abdomen and thigh. Gradually my leg has strengthened and is much more reliable but I still have massage monthly. You might like to consider trying it.

Thanks so much for sharing how your nerve damage has affected you. Have you been on any medication at all? I have had amitriptyline and gabapentin. I am now trying pregabalin. My biggest problem is always the amount of pain I am in. I just want the pain to stop. I have been referred to the pain clinic and physio, so hopefully things will get better. I want to walk and be strong again. My left leg muscle looks wasted. I was so fit before my op. I worry that I won't ever get there again. I spend my day swinging wildly from feeling very sorry for myself to being so grateful and appreciative, knowing that other people have it so much worse than me. Any way thanks again for sharing, it really helps knowing that things can get better. I hope your massage continues to help you and that you continue to get stronger and stronger. Sparky2 X

Hello Janetyjane,

i don’t know why I didn’t see your messages before now, but anyway....... I, too, had a de-differentiated retroperineal sarcoma removed in early February, and it weighed 3.1 kilos (and I am small).  It was accidentally discovered last November when I was diagnosed with a hernia.  I have made a good recovery (Lockdown helped me to focus on a daily routine), and am very active.  However, my gut is very sensitive, and when I read that you, too have experienced gut problems, I wondered whether you have any advice.  I had been worrying that it would never recover, and if, as you say, I need to accept it and learn to live with it then I shall try to do that.  I am aware of every little twinge, and worry that it means something is wrong.

Susee