Retroperitoneal liposarcoma

Hi Mark

you are going into one of the few hospitals who have really good experience in operating on these rare and tricky tumours. I didn’t get a lot of post op info from them when they operated on my RPLS back in 2012. I am fit and well but still have annual checkups. Mine was a mere 3.5kg. I think part of the reason you don’t get much post op info on what to expect is because they have to make a lot of the decisions while you are on the operating table. Afterwards I think the main concern is your survival and the resulting collateral damage is largely unique to you and although my surgeon is sorry about some of the resulting issues there was nothing that could have been done differently. I have found my own way through it and lead a full and active life which I relish!

I will just tell you briefly a few bits I experienced but you may be very different. Following surgery I was in special care for around 24hrs then transferred to the ward still complete with drips drains and catheter. So you feel a bit pinned in the bed. I can’t quite remember but possibly the following day I was hoisted into a bath to shower down. Hard work but worth the effort. Plan was to get moving and eating. I spent about a week in hospital then went home. It was great that my family were happy to be hands on and look after me.  It took awhile but each day I could do more and move further. The collateral damage was my right kidney and quite a lot of intestine removed. Can’t say the kidney has effected me it’s recommend you have kidney function blood tests every once in a while. I had bigger issues with my gut and I’ve had help from dieticians and now I know what I can and can’t do or at least if I’m going to do something I know will cause issue I keep Imodium handy! Another thing that was missed was information about the significance of the duodenum which was partially removed and I became b12 deficient so I now have regular injections of b12. Also I continued to have abdominal pain which I think was scar tissue tightening and a certain amount of nerve pain and numbness in one leg. For this I have found deep tissue massage very helpful. The consultant gave me a copy of my operation notes which have been handy for my reference and also for the GP. So we could pick through and understand a bit more of why I had issues. So I would recommend that you try to at least get a copy sent to your GP if they won’t give you them 

i hope all goes well for you and get back in touch if you want more detail and I hope I haven’t worried you rather than helped you!

janet

Hi Janet

Thanks for your reply. Definitely helpful rather than worrying. I much prefer direct information, given honestly, so I appreciate what you have told me. I’m expecting to lose a kidney and bit of bowel at the very least. I’ve been told to expect 3 or 4 days in CCU, followed by maybe 3 weeks on a ward. I must say that I’ve been really impressed with the surgeon and other staff at the Marsden so far. 

Mark

Hi Mark,  i had a RPLS removed in February, in Oxford, and, like Janetyjane (who has been very helpful to me), I lost my right kidney, but no intestine.  it is very good news that you have now been offered surgery, as that is your best option.  I found the time beforehand very daunting.  I had to have a couple of extra scans to make sure that there were no other tumour sites, and these, plus Christmas, plus annual leave, delayed surgery whilst I was aware of the tumour growing.  But the surgeon was excellent, and it was immensely reassuring to know that he (a urologist) had potential back up from the sarcoma consultant, a bowel surgeon and a vascular surgeon.  They don’t know, until they open you up, exactly what they will find.

janetyjane describes post operative progress pretty much as I remember it.  Nerve damage around the scar meant loose fitting clothes for quite a while.  Walking, whilst in hospital, was very difficult - until the drain was taken out, when it suddenly became much easier, and after about 3 weeks I was walking (well, crawling) up the road.  I found my walking poles very helpful for a while.  

The surgeon removed the tumour and surrounding tissue, and all the margins were clear, and now, 8 months on, I feel well, full of energy, and back to ‘normal’.  I do still have gut issues - the tumour will have squashed my intestines, but have consulted a nutritionist and am aware of what foods I still need to be careful with.  I, too, will have annual check ups.

I wish you well, and do get back in touch if you need to.  This support group has been very helpful to me.

Susee

Well that seems to have gone quite well. Currently in CCU having had complete liposarcoma removed. Apparently 19.5kg / 3 stone. Lost a kidney, small piece of adrenal gland and a bit of bowel - hopefully nothing I’ll miss. Single vertical incision instead of vertical and horizontal as expected. 

Operation pain relief still functioning, so no pain kicking in yet - woke up at 3:30pm Just a bit nauseous, but generally OK 

Hi Mark, I haven't been here much lately and only just read your posts. I had my surgery 18 months ago. I'm just wondering how you are? Best wishes!

Hi,

Thanks for asking. Not too bad. I wasn’t in hospital long, 9 days overall which was less than I was expecting. Incision healed well. Put some weight back on, which is a good thing. Quite a few aches and pains though, including my left arm and back and legs, which I’m surprised by. Obviously, happy to be here still though. Very grateful to my surgeon and all the other fantastic NHS people. 

I hope you’re all recovered now.