Uterine Sarcoma

Hi garden nut,

Its a completely individual choice, you can stick with your hospital and your team or ask for a second opinion from a bigger cancer centre hospital. The bigger centre might know more about your type of cancer and have more experience of dealing with it / treating it, but that's guesswork on my part, your local team might have lots of experience too.

For a proper medical opinion you could contact the gynaecologist nurse specialist at the eve appeal at: https://eveappeal.org.uk/supporting-you/ask-eve/ 

Did they tell you how they intend to monitor you and how often? I.e. Will you have scans, will it be three or six monthly check ups?

lots of love

xxx

Hi

I am sorry to hear about your diagnosis. I guess you know that uterine sarcoma means the cancer started in the muscle of your womb rather than the lining or endometrium. It is uncommon but as far as I know (and I’m not a medic) it’s treated the same as endometrial cancer. And again as far as I know, endometrial cancer that has spread to lymph nodes would usually be treated with chemo and/or radiotherapy after surgery. 

I am not a doctor but I am an informed patient and if I was in your position I would definitely be seeking a referral to a specialist gynae cancer centre. But do check this out either with Ask Eve or indeed Sarcoma UK. 

This link might help: 

https://sarcoma.org.uk/sarcoma-types/gynaecological-sarcoma

Knowledge is power! 

Good luck 

Xx

Thanks Daloni

I agree Knowledge is power!

I guess I should have said that the reason that I'm not being offered radiotherapy or chemotherapy is because the cancer was low grade and therefore doesn't respond to either, but I'm not sure if this changes when it has spread to the lymph nodes. The team at the hospital where I had the op were consulting with Sarcoma experts at Bristol, so I'm hoping I'll be referred there.

Basically I'm feeling a bit frustrated because it seems a long time since the op now and, though I have had a phone call from the consultant surgeon, who explained a few things, I haven't yet had anything in writing or any follow up appointment. Maybe I should just be happy that there is nothing urgent that needs doing, but I feel a bit in limbo.

Anyway I've decided I'm going to phone the hospital today and see if there is any news, so thank you helping me to think this through.

Gardennut xx

Thanks Arla

I noticed on line that there is a Sarcoma centre in Bristol, so I'm hoping to be referred there. My problem at the moment is that I'm still waiting for a follow up appointment, so all the info that I have is from a phone call from the consultant surgeon. She did say that she was consulting with an expert from Bristol about future treatment, but, because the cancer was low grade, it wouldn't respond to chemo or radiotherapy. So at the moment I'm not sure what the treatment would be, though hormone therapy was mentioned as well as wait and see. I'm hoping there will be scans and regular check ups though.

Thanks for your advice. I probably just need to be more patient, but the op was organised at top speed (20 days from first seeing my GP!!) so I'm not used to waiting.

Garden Nut xx

HI Arla

Just spoken to the hospital where I had the op and they are referring me to the Sarcoma Centre in Bristol which is taking some time, but I'm happy with that now.

XX

Hi Daloni

Just managed to talk to my cancer care nurse, where I had the op, and she said I AM going to be transferred to the Bristol Sarcoma centre, which is what is taking the time. I don't need another scan just now, as the CAT scan I had before the op 'covered everything'. So I'm happy with all this.

Thanks for your help.

XX

Hi garden nut,

im glad that things are moving on now and it sounds like the sarcoma centre will have lots of information for you, they will hopefully give you a clinical nurse specialist who can keep you updated even if you are on a wait and see plan. I know how frustrating waiting is.

You coiuld ask your new team about Clinical trials, Daloni has loads more information about them than I do and will hopefully fill you in soon, but if they are something you were considering there are some tests that help with eligibility that you could ask about, as far as I understand there are genetic tests that take a while to get the results for, so it'd be good to kick them off if they were suitable for your circumstances. 

Please let us know how you get on

lots of love

xxx

Thanks Arla

I'm looking forward to finding out more info from the Sarcoma team at Bristol. I get the impression that the consultant where I had the op, who is lovely and did a great job with the surgery,  is sort of finding out about this kind of cancer as she goes along. I'm not sure about being involved in trials, but I guess its something I do need to consider.

I'm not too worried about wait and see. I had breast cancer 9 years ago and should have had radiotherapy, but had a bad infection that took so long to heal, that it was too late, so all I have had is tamoxifen - which ironically, I think I read somewhere, could be a risk factor for uterine cancer. I know this is not the same type of cancer, but I hope can put it to the back of my mind between appointments, like I did before. If I was younger I'd probably have a different attitude and be disappointed I couldn't have chemo and radio therapy, but just now I'm enjoying being pretty fit coming up to 70.

Thanks for making things so clear and yes I'll let you know how I get on.

All the best

XX

Hi

I am very pleased to hear this news. You’ll get the best care from well informed clinicians at a specialist centre. I think Bristol might also have a Maggie’s Centre? I’m not sure. But there are great places for the wrap around care such as psychological support and complementary therapies. 

If you do embark on the clinical trials route then I’m happy to answer any questions I can. I’m in a clinical trial now and I am a lay member of a trials management group so I’m reasonably well informed. 

Stay well! 

Xxx

Thanks Daloni

I'm quite looking forward to going to Bristol. I'm bit frightened to drive and park there, but luckily its quite easy to reach by bus and any appointments can be enlivened by shopping and meeting friends for lunch!!

I will get back to you if there are any relevant trials to consider. Its great to have access to someone who knows things from the patient's point of view.

All the best.

xxx