Retroperitoneal liposarcoma - follow-up

Hi pamelapooh

i can only tell you of my experience. I had a similar op to you in March 2012 although my histology was 60% de-differentiated. I have a chest x-ray before each appointment as the risk of lung secondary is a concern but I have only had 2 scans in that time. 1 at 3 yrs and 1 last March thankfully both clear  

 Talking to the surgeon I have come to feel for me the scans are mixed blessing! To repeat the surgery on a recurrence is said to be even more difficult than the first op and that in fact they would now monitor a recurrence with very regular scans rather than attempt to remove it immediately it was found. This view has only been shared with me post 5yrs with the explanation that although the histology at the time showed an aggressive tumour it has not at this stage recurred so it is likely that it is either less aggressive than thought or that my immune system has dealt with any rogue cells around.

however emotionally I found the period between diagnosis and surgery quite difficult. Mentally I felt I was sharing my body with a very unwanted alien and that every mouthful of food I ate was helping it grow! So I worry now that if a scan showed a small recurrence I would be returned to that unhappy state and that to a degree I feel for me ignorance is bliss. I know that I run the risk of it getting a bigger hold on me if it is undetected. So I finally agreed to the scan last March and have agreed to have another at 10yrs and at that point if clear will not have regular annual checks anymore.

I think you can discuss at your next appointment what balance works for you as well as what actions would be taken if the scan results show a recurrence. 

Glad your recovering well it’s a big op! Oh and it was only brought to my attention a year or so later that renal function tests should be done just to check that the remaining kidney is fit and well! I have that done at my gp prior to my marsden appt. it is also necessary just before a scan as that puts a strain on the kidney. 

Good luck with it all and hopefully you too will remain clear. 

Janetyjane. 

Janetyjane, thank you so much for your reply! I felt very emotional reading it as I can completely relate to what you are saying about ignorance being bliss.  I had a similar mental and emotional struggle from diagnosis to surgery (10 long weeks) but mine was about any movement that might ‘burst’ or aggravate the tumour and make it grow. My husband was afraid when we went anywhere in the car in case the seatbelt aggravated it. Like you, I worry about having to go through the surgery again, and at the moment I’m working really hard to get my fitness back up in case I have to do this again.

I’m very encouraged by your situation - 8 years NED! I follow a couple of FaceBook groups but there are a lot of posts from people who are having recurrences, some more than one so to see how well you have been for so long helps me to feel ok about not having scans. Once I know it’s there, I have to live with it knowing that it’s growing until it’s big enough for surgery again.

Thanks again for replying, it helps to know I’m not the only one, and regular scans aren’t always the only way.

Stay well xxx

Hi Janetyjane, I am going into the Royal Masden to have a similar treatment in a couple of weeks, has a initial one taken out  12 weeks ago when my local hospital thought is was a bowel issue, now we know what it was the clear up job is happening, like you some is de diff and the 17 day wait is praying on my mind, I now feel every twing and pain in that side and then think the worst.

do you have any recommendations to cope with the days, also they seem a really competent team.

thanks

nick

Hi Nick

they are a really competent team! Although it’s a very rare tumour they operate very regularly on them so do trust them. I’m not sure if there is anything you can do to prepare. I think the days/weeks before surgery are really tough. Your family and friends hopefully are supporting you although in the present situation that is much more complicated. I found friends who could just talk to me about every day stuff was great it passed the time and stopped focusing completely on a panicking me!  So organise a morning and afternoon zoom and get them to chat about anything! However I remember that sometimes us just curled up and hid from the world and cried  

on a more practical note I went off my food because I couldn’t eat I was so scared but I knew my body needed to be as well nourished as possible to help the healing process afterwards. So I forced myself to eat protein rich light food such as eggs and fruit and veg everyday. It all tasted like cotton wool!

after surgery it takes awhile to recover physically and mentally and I’m not sure you ever return to the person you were because you will value your life so much more than you did. But it’s fab! So I wish all the best let me know how you get on. 

Janet 

Thanks Janet

as I am sure both you and Pamelapooh both experiencedthe same feeling, it is just a worry that it’s growing in me still which is stressful ,they told me that it doesn’t grow that fast which is a comfort but the mind can be so cruel , I have spent this whole experience being so fearful which I hate.

i have read a couple of books by people who have documented this , but when you are in it it is all consuming which is so hard for everyone involved !

Hi Nick, 

I’m so sorry to see your post and can absolutely relate to what you are saying. The fear of the ‘what if’s” could at times be overwhelming. I was afraid that every movement might affect my tumour, my husband was afraid when we went in the car that the seat-belt might hurt me or a sudden jolt would either aggravate or burst it. These were all unfounded fears and I was reassured by the surgeon at my pre-op to live normally and enjoy my holiday which we had booked and which I was lucky enough to be able to go on just before surgery. We were busy and active throughout the days, I was bumped along Greek roads, swam in pools and the sea and enjoyed beers and cocktails every day. The fear came back in the small hours of the nights... My tumour was discovered incidentally and apparently if it had been left undetected I wouldn’t have been presenting for at least another 2-3 years, so yes, it is slow-growing. 

I would wholeheartedly agree with all of the suggestions in Janet’s post about distraction and letting people support you. I found talking to friends very helpful. 
The time waiting for your surgery is hard - it’s the unknown and it’s not something you can control. But every day closer is a day closer to getting rid of the tumour. You are going to be in the care of some of the best people in the world for this type of tumour - let them take care of you and use us if we can be of further support  

x

Hi Janet

just got home and am really sore , second opp in 3 months and as you mentioned in a post it is harder for them when mending previous work, luckily it in my pelvis so only so my bowel was left alone and only took my testical and cut off the well and de , 6 weeks healing then radiotherapy on my pubic area to get any they missed.

what I need now is inspiration that I will recover ( did last time), as day four and I feel rough and sore 

cheers

nick

Thanks Pamelapooh,

Apologies, I only just seen your reply, I did not get an email, now in day four of recovery feeling sore and wondering how long it will take again to recover, your inspiration is much appreciated 

cheers

nick

Hi Nick

so glad your home and didn’t have too long a stay in hospital. It’s only very early days you’ve got to let your body heal and rest is good for that. The inspirational bit needs to come a little later. No major achievements need to happen in the next few weeks and then your going to be into further treatment. 

A repeat surgery has always been my dread I felt recovering the first time was like climbing a mountain very very slowly! But you will recover. I think I would give myself about 10 days to let the wounds heal although pottering around the house a bit more each day will keep you mobile and the dreaded blood clots at bay. I’m not sure how big your wound is but holding a cushion next to it whilst you move can help stabilise the wound and stop the pulling sensation. Your wound must go quite low I think from what you have said. Once initial healing has happened set yourself small targets everyday for instance a walk to the end of the road and back then round the block this helps measure your improvement and you will be able to see your progress. Plus you must be very shocked at what they have done to your body, very personal surgery which will affect how you feel. I found the Macmillan counselling service very good to share the more delicate worries! In the mean time eat well with plenty of protein and veg to get you to your best condition before radiotherapy starts 

good luck and best wishes from Janet 

Thank you , you are right, two scares this time but no bowel which is good , appreciate your feedback