Hi I’ve just joined the group as I need some support. My husband was diagnosed very late (the GP didn’t pick up on it) with a liposarcoma attached to his right kidney after having a Pulmonary Embolism and pneumonia due to the tumour pressing on all the arteries. Unfortunately because of the Pulmonary Embolism he couldn’t have surgery sooner so had two rounds of chemotherapy but it didn’t work and the tumour got bigger so the last option before the tumour reached the vena cava was surgery. It was a very scary time.
He’s under UCLH and the only Sarcoma surgeon there wasn’t available. Luckily a surgeon from the Royal Marsden agreed to do the operation. The operation went well, they removed the tumour (5 kgs), they removed the kidney, a bit of bowel and a bit of liver and he was told that he wouldn’t need radiotherapy afterwards. He’s recovered really well. He’s just had his first post op CT scan and now I’m worried because there was a mention of a fatty change between the duodenum and the vena cava and the oncologist wasn’t too reassuring. I’m worried that the cancer is coming back.
I know that the chances of recurrence are high so if anyone could share their experience with me as I feel a bit lost and alone.
Hi and welcome to the club nobody wants to join; sorry to hear about your husband and can well understand your worries especially around that operation. Good though that he has a specialist sarcoma surgeon since with these rare cancers (my wife has Leiomyosarcoma) there are not too many available and it does really make a difference.
One of the things sarcoma uk has been looking at for some time is a toolkit to help GPs pick up sarcoma - many will see only one case in their entire career so it is very easy for them to miss the signs, you can see some of this here.
Scans are pretty much always a worrying time, on here we often refer to this as scanxiety.
I do think some oncologists could do with a bit more work in the psychology stakes. A change being seen on a CT means just that and it is easy to think it can be the cancer but of course no cancer patient suddenly gets to miss out on all the other things that can get us (including excitingly other cancers - rare but it happens). My wife's chemotherapy led to her having 6 pnemothoraces and nowdays her oncology team think it more likely she will be admitted for another of those than anything related to her cancer.
As for you feeling lost and alone, well done for coming here, we understand. You might also like to join us over on Carers only forum because sometimes the most useful thing we can do is remember to look after ourselves.
<<hugs>>
Steve
