Tests and Investigations- Retroperineal Mass

Hi HuddsSteve

Google can be helpful if we know what constitutes both good and current information but it can also be a great way of finding horror stories as people more often share bad news that good - often newspapers do the same.

You clearly have quite a good doctor as there is a big drive to get patients to the sarcoma teams early.

We have a lot of information on different types of soft tissue sarcomas, my wife has Leiomyosarcoma and her route to diagnosis was long and not without many incidents so the final diagnosis actually ended up being something of a relief in that we finally knew what we were dealing with Her primary was probably removed with surgery (though we did not know that at the time!) and two rounds of chemotherapy put the rest to sleep - living with cancer now for over six years and still going strong.

You being healthy will count for a lot.

You might also like to look at the information from sarcoma uk.

<<hugs>>

Steve

Hi 

I think you can get benign sarcomas that can still grow large and be troublesome (lots of subtypes). Unfortunately theres so much room in retroperitoneal area they often get large before located. Did you have contrast on the CT scan? I was told before my biopsy result that the presentation of the tumour on mri and ct indicated likely cancer but biopsy was needed to confirm. In hindsight fatigue was pretty bad in the months before it was located which I recognise as a big indicator for me. It wasn't tiredness that sleep fixed. Hoping for a good outcome for you..please know there are lots of treatments. I just kept busy whilst waiting 

Annie

Fab thanks for the reply . 

I did have contrast yes but the doctors have said they’re still trying to rule cancer out and are sending me for MRI and biopsy to confirm . Even if it’s benign will it show up on a CT/ ultrasound, I guess it would wouldn’t it? 

still waiting to hear from sarcoma clinic but should be in the next couple of days I think . 

fatigue seems to be ok for me I went to Jordan 3 weeks ago and was fine and the only symptom I have is pain down my left hand side in my abdomen and in my side and leg , which has got worse over time . 

im off work at the minute but keeping busy during the day and trying to really keep positive ! 

Hi yes it would still show...I'm allergic to contrast but mine still shows. I understand the contrast makes cancer glow in difference to normal tissue though some sarcomas may be very slow growing. Good about not feeling fatigued. My tumour was 10x8x7cm and I was that tired I had to sit down every ten minutes. 

Hi HuddsSteve , just wondered how you are getting on and if you had a diagnosis.

  could I ask how long ago have you been diagnosed and what stage? I am like you had a long lasting fatigue, have a large lump ( about 7 x 5 cm but it’s only what’s protruding) on the back of my pelvis. Ultrasound showed it is not a cyst or lipoma, mri next but I am extremely scared. I have a 3 month old baby and explained a lot of my symptoms with pregnancy. When I noticed my lump gp did not send me for a cancer route straight away and it took 2 months to wait till mri. The lump has grown and I have also started feeling very dizzy so extremely scared that it is cancer (soft tissue sarcoma suspected) and that it is very advanced. 

Hi 

Sorry to hear about this worrisome time. There can be lots of different explanations and findings for these growths so try to keep busy while you wait. I totally understand your worry. I was diagnosed December 2021 after my tumour was located in October 2021 and had mri then ct then biopsy. I had 3 chemo in January 2022 that didn't work so had radiotherapy to the pelvic tumour. I have lung metastases also. Radiotherapy concluded in May and I've been stable since meaning no growth since and pelvic tumour is gradually shrinking. Lungs been stable without conventional treatment. I do however use many alternative treatments including diet supplements hyperbaric oxygen and cbd oil to name a few. If theres anything ican help you with please reach out. I've been in your position and emotionally its testing initially but not knowing is always the worst and once you have an outcome there are many treatment options both conventional and natural x

P.s.mine is leiomyosarcoma 

Hi Annie, thank you so much for your time and reply. I really appreciate it. What a worrying and difficult journey you had. I am glad to hear that your lungs have been stable and pelvic tumour is shrinking. That gives me a glimpse of hope although I also lost a lot of weight and even muscle, so just so incredibly scared of the prognosis if this turns out to be cancer.

i am trying to keep busy but because so unwell it reminds me every time of a possibility of an advanced disease. I know I need to pull myself together but at the moment it’s so testing and I can’t say that I am coping.

I really hope that thee will be treatment available for me, whatever they find.