Retroperitoneal Liposarcoma

Hi , I’m sorry to hear about your husband’s diagnosis, I have a different cancer but have found that waiting for treatment to start can be one of the most anxious times. I’ve popped in this group as I noticed you hadn’t had a reply yet from the people in here with the experience your looking for and hoped I could give you a few links to information that might help in the meantime.

https://sarcoma.org.uk/sarcoma-types/retroperitoneal-sarcoma I found that this link from a previous ask a nurse reply, you could try the ask an expert section or the Macmillan support line if you want help from a medical person to help you understand the diagnosis. The ask an expert button is on the Macmillan online site as a tab under the words online community. The support line is open 8am to 8pm 7 days a week on 0808 808 0000.

I thought you might also like to read if you haven’t already done so the Macmillan link I’m putting below. 

https://www.macmillan.org.uk/information-and-support/soft-tissue-sarcomas/treating/treatment-decisions

Ive found preparing for appointments and what questions to ask has taken some of my anxiety away at times, which is why I felt that link may help as well as the support line. 

I have no experience of the cancer your husband is going through but as this is the only group you’ve joined and this is your first post I wondered if the carers group may be of interest to you, it can be a stressful and anxious time and although the carers will have a variety of experience with different cancers the similarities of anxiety, waiting, and coping it can be a great place with a carers perspective. I’ll put the link in for you to click on just to have a browse. You may also want to fill in your profile to help people answer any questions, or for others to appreciate your point of view when you reply. Just click on your user name or picture and find the edit button to do that. You could have a peek at mine, but mine perhaps needs editing as it’s very long but hope it helps others.

https://community.macmillan.org.uk/cancer_experiences/carers_only/

I hope some of the above helps, wishing you luck at the next appointment and hope you will update here on a reply how you get on.

Best wishes

Dear Sindystar. I had a retro peritoneal lyposarcoma tumour removed 7 yrs ago and I am fit and well! They are rare large tumours which require specialist surgeons to deal with. I was treated by the sarcoma team at the royal Marsden in London. I believe Birmingham also have a team. The surgery is complicated and risky and I also had to have a kidney removed plus a significant amount of bowel as well. It took me some time to recover and I still have annual checks for recurrence but if the whole tumour can be removed you can recover. It was very scary and I had to wait some weeks for surgery as there were tests to be done plus booking sufficient time in an operating theatre. I hope all goes well for your husband and you. 

Thank you so much for your reply - lots of really good information there, more than we've found online so far! Very new to all this but you've given some great advice - thank you

Hi, 

Thank you for your reply

Good to hear you are fit & well now

There isn't much information online - we'd never heard of it, we're waiting for a consultant so should find out about treatment then. I can't seem to find anything about causes? Is it something that comes on suddenly? Our 4 year old grandson jumped on my husbands tum when they were playing about 3 months ago, it winded him and was tender for a while then he noticed the hardening and eventually got it checked out, its definitely getting bigger and in such a short space of time. We don't know if this triggered it or just drew attention to it? Any information/advice you can give will be much appreciated

Hi there

         very sorry to hear of this - I have been meaning to write on this forum since I found I had this condition your post is a real coincidence.The reason is when I found myself with this the first thing you do in most cases is refer to google which to a degree is useful but there`s a lot of bad stories out there which seem to be at the front of the queue on searches so take heart.

I was diagnosed with a Retroperitoneal Liposarcoma in May 2016 - no cause -  no pain - a faint lump in the tummy - I didn`t feel quite right since the previous Christmas but had no idea why - on reflection I could not sleep on my front without feeling uncomfortable.

As with yourself I guess you may end up being referred to the Sarcoma department in a larger hospital who have the correct team to deal with it - to my knowledge there are a few but the main ones in the UK are the Royal Marsden in London and The Queen Elizabeth in Birmingham (which is where I was sent).The operations are done there specifically as there is a method in dealing with the condition.

After a Biopsy I was scheduled for an operation in August - it all happened fairly quick - I was in for 15 days - It was not pleasant but at no time was I in pain and got over the operation fairly well - I went to plan as it were - I got in the chair next to the bed the next day - I have to say the team were excellent at Birmingham from Surgeons to the nurses who went through my very many detailed questions questions on numerous occasions and I can never thank them enough - believe me I appreciate the NHS.

No doubt you will be talked through the your treatment by a Sarcoma team and treatment  is dependent on size/location/pathology etc.

My best advice is if he is going to have an operation is to be as fit and healthy as he can - in my case it meant trying to gain a little weight -  I started going to the gym/eating healthy/swimming/walking - work took a back seat - I am now 62. This is quite important I feel as you recover better - I lost weight in my recovery in hospital but as I said earlier it was no surprise and I was to plan.Plan for coming out after hospital too meals etc.

I am not just over 3 years down the line and have had no recurrent disease as yet - I just had my annual ct scan and good for 12 months - so fingers firmly crossed.I eat well and I`m quite active - I would say it look a year before I could really say that I recovered from the operation properly - I am no pain and physically fairy good and though I haven't as yet could of easily returned to work after a year - I  swim/walk have a beer and my tum back in working order.

My general point is for my post is that there`s a lot of bad things out there on the internet - I didn't seem to be able to find many positive stories - well mine is a good outcome! So take heart!!

Good luck with your journey and keep positive.

All the very best

Mark

Hi Mark

I’ve just read your post and am really pleased to have found it today. I am a new member to the group and have just posted a question about the nerve symptoms I’m experiencing in my right thigh. It’s a weird mix of skin numbness but leg soreness. Have you any experience of this please and any advice? Many thanks.

Hi Sindy

            In answer to your question I was told that the cause of these tumours is not really understood they generally are slow growers  behind the tummy - but they can accelerate for no apparent reason so it needs to be sorted.

All the best

Mark

Hi Pamela

                  Interesting to hear your comment  - I had that a little in the left leg - at first I thought it might be caused by the anaesthetic but I talked to the Surgeon he thought that with the removal of a section of colon damaged that some nerves in the  top of my leg - it bothered me for year or so but has worn off a lot now with walking.

I hope that helps.

All the best

Mark

Hi. I have just had an 8kg well differentiated retroperitoneal liposarcoma removed successfully. My surgery was done in Plymouth. I believe there are about 8 specialist centres in the UK. I had no symptoms or triggers until things got uncomfortable under my diaphragm early this year. Saw my GP in March had surgery 7 and a half weeks ago on 20th August. I have been told I will have 6 monthly scans to begin with and then yearly. I was warned about the possibility of all sorts of bits being taken during the op, but in the end I only lost an ovary, fine by me I'm 50 and had very early menopause anyway! I feel so lucky. I have recovered really, really well from the op. I was in hospital for only 5 days and over a stone lighter! I was pretty fit before the op. The only downside is that my femoral nerve is still very upset about all the digging around and I have some pain in my leg which I have been told will sort itself out eventually. My surgeon was amazing and the sarcoma specialist nurses are still so supportive, even now and are still ringing me and helping out. Thinking back, I had some weird sensations in my thigh for a couple of years which I ignored, thinking it was laptop burns! Maybe it was a growing tumour next to my femoral nerve? Guess I'll never know now. Just wanted to put a positive but honest post on here. It is SO difficult to find positive posts. I stopped looking because I found it all too upsetting. I hope this helps. Much love xx

Just wanted to say thank you to everyone who has commented and shared their experiences.

Since the diagnosis we are still waiting to see someone!

When we first went to the GP they thought it might be a hernia and referred us to lower GI consultant, as Mark had private medical cover at work he decided to use this BIG MISTAKE!

He had a biopsy on 24th September, it took ages to get the results (despite being told they were on the consultants desk) we were finally told on the 7th October over the telephone, no support, no advice - just he didn't know if it could be treated!

We received a copy letter last Thursday (17th)  that he had been referred to Retroperitoneal Sarcoma Service at the Queens Medical Centre in Nottingham so we are now waiting to hear from them

Its so frustrating all this waiting! Mark is not coping very well, he really needs to talk to someone who can tell him what the treatment will be and most importantly that it can be treated, I have had to edit what I've told him from all your experiences as I don't think until a consultant explains to him, that he could cope with knowing about organs being removed along with the mass 

How long after diagnosis was it before you saw the consultant? Have you any advice to help while we wait?

Thank you xx