Told my Lymph Node Secondary Cancer is Incurable what next?

Hi Ramsbottom and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not in your position but I noticed that your post hadn't had any replies yet. As you know, the online community is divided up into different support groups so I'm going to suggest a couple for you to join where you're more likely to get answers to your questions as well as support. 

The first is the soft tissue sarcoma group which would be a great place to ask your questions about treatment and the second is the living with incurable cancer group where you'll find others who have been told that their cancer is treatable but not curable.

If you'd like to join either or both of these groups, just click on the links I've created and then join and post in the same way as you did here. You can also join in with existing conversations by clicking on 'reply'.

When you have a minute, it would be great if you could update your profile with information on your diagnosis and treatment so far as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thanks for the advice I have updated my profile and joined the "living with incurable......." group. I don't expect replies to be honest, I suspect my profile is rather different to most people on here. Anyway, Appreciate your help, thank you R 

Hi Ramsbottom, please excuse me if I seem to ask an obvious question but surely there must be an oncologist or nurse specialist who can give you more definite ideas re what you may expect from your disease process?  I find it incredibly bad if the doctors who have been treating you cannot give you specific answers so you can plan the rest of your life more clearly.  

I have no knowledge of the specifics of your diagnosis and wouldn't ever tell anyone on here a prognosis even if I could hazard a reasonable guess (was a palliative care nurse) as I'm on here as a fellow cancer sufferer only.  I really hope you can find a person to give you some answers. X

Thank you for your reply. The problem appears to be that secondary cancer arising from metastasis of myxoid sarcoma is very unusual, if you read the research papers it's almost unknown, so there isn't any research to go on. So all I am trying to do is be positive and live life as well as I can, while I can. But whether I have weeks, or months, or years.....who knows. But thank you for your concern, it's much appreciated. R          

Hi, a quick Google threw up an interesting article from 2021. I'm not good at transferring links so here's the info. 

"Future Oncology".  Volume 17, no.20 ---- 'Pharmacotherapy for liposarcoma: current and emerging synthetic treatments '. 

It's a thorough article with trials shown and includes info on possible immunotherapy trials too.  All the stats are heading towards maintenance like melanoma I feel and certainly the overall current survival rates should be largely ignored as with melanoma as the speed of new meds and trials is increasing every day.  Hope it's of interest x

Hello, I am sorry for your diagnosis but wanted to tell u a bit about my story to give you some hope. Hope is everything. I had bowel cancer late 2013, removed and chemo for mop up as was in some lymph nodes. Told it was all successful. 2016 I got metastasis in my Liver. 3 tumors. Chemo for 6 months then a very big operation that was successful. 2018 Sept. I was told it was in my lymph nodes, a pet scan showed it in various places within my body. I was told I cld have chemo and live 1 to 3 years, without I would have not 6 months. So that was 4 1/2 years ago. I wasn’t supposed see my 60th birthday but I have against all odds and my 61st. Miracles can happen for some people so why not you. Keep positive and live your life. I know it’s scarey at times . I’m going for my 6 months results today and I’m scared today. Good luck and health

I'm sorry for the delayed reply for some  reason I have only just seen this. Thank you for sharing the article, I will follow it up. R. 

Dear Lynne, thank you so much for sharing your story. Hope is indeed everything. R.

Hi there, my husband 50 years old had a myxoid liposarcoma tumor removed from his hip 2 years ago and has recently had a lump come up on his neck, his doctor has referd him back to his oncologist as from yesterday and now we wait for him to be seen. His was stage 3 he has the most positive outlook as I am the worrier, I hope you are living life to the fullest. 
it is rare form of cancer, he had a fall from his bike 8 years prior. Landing on his hip. We have an amazing team at derby and Nottingham hospitals looking after him. 
As we start this second journey I wish you well 

Hi Scot48, I am truly sorry to hear that your husband's cancer may (but lets hope not) return. Staying positive is everything. My cancer is also stage 3, I had radiotherapy in January 2024 which so far appears to have had some effect as the tumours appear to have shrunk. So at the moment I am indeed getting on with life as much as I can. I was very fortunate that my employer was very supportive. I am now retired. Interesting that you linked the cancer with your husband's fall. A lot of oncology consultants are dismissive of stories like that, saying it's an old wives tale. Cancer research UK say "Sometimes people think that an injury has caused a cancer. There's no evidence that an injury of any kind can cause a sarcoma". I am not so sure. I believe it.  It's interesting because I was bitten by a dog on my left knee exactly, to the pinpoint spot, precisely where the soft tissue sarcoma came up, about three years previously. So my money is on cause and effect. I also had a lot of stress in my life mostly work related from a previous job and there is a clear link between stress and cancer.  

I absolutely wish you both all the very best and hope that even if the cancer has returned, it can be dealt with effectively. I am told (by the consultant) that myxoid sarcoma's are highly responsive to radiotherapy. He should be able to have RT as the new incidence (if that is what it is) is in a different place to the first time. Good luck and prayers to you both.