Sisters Endo/umbilical stage 4 diagnosis

I posted this on the nurse's board by mistake    My sister just got the news yesterday she has stage 4 cancer, it has come as a huge shock to all of us.
She had spots of blood going back 18 months ago here and there and then more blood in May last year so went to the GP.

She also has stage 4 chronic kidney disease and was seeing a renal consultant too, her bloods were taken and seemed normalish but her haemoglobin started to drop, they presumed it was due to her kidney, she kept pressing them saying she felt tired and they said her iron levels were fine, even though her red blood count was high ( I think - she is very knowledgeable about all this).  Eventually the GP sent her for an endoscopy and colonscopy and she was scanned from her neck down to her pelvis to find out where the bleeding was coming from in October.

They both come back clear and the scan revealed she had a cyst on her ovary and nodule on her thyroid, she also had a hernia (which she knew about) but because of her kidney they wouldnt operate on it.

When all the tests were done they left it and she kept asking them about the bleeding and sent numerous emails to her consultant and the GP, the consultant just said it was possibly her kidney and put her on EPO injections ( a hormonal injection to help her kidney function in Dec/Jan  ), she had a really bad reaction to it and they took her off of it after a month, In two months she put on nearly 4 stone after the injections and started bleeding from her belly button.

Finally in May she went to do a urine sample at her renal check up and it was pure blood and they still put it donw to her kidney, the next day she managed to see a clinican (as GP's were too busy!) and the clinician started to refer her to a gynea, and other departments and it culminated in a hysteroscopy about 6 weeks ago which left her pooring with blood and a referral to an oncologist and now this diagnosis, we are distraught and shocked to the core

BUT they are saying because she has stage 4 kidney disease there is nothing they can do????

She has been referred to another oncology surgeon who has agreed to see her as she is bleeding all the time since the failed hysterscopy and so her quality of life is seriously impaired.  The have found she has endometrial cancer bilateral lymph nodes and umbilical hernia cancer .  He said he may take her womb away if she passes clinical tests with the anaethetist but no radiotherapy or anything else.

I read somewhere someone who had stage 4 kidney disease and heart failure had surgery AND radiotherapy....
So surely she can have something else, she has been let down so badly by the NHS trust we are under, both her renal consultants (there were two) and two consecutive GP's 

I want to know if anyone else has experience of having kidney disease and still having other treatments for stage 4 cancer?
Thanks in advance      

  • Helo Crocodile01

    I'm so very sorry to hear about your sister's diagnosis and all that she has been through with her health over the past 18 months. It sounds like it's been an incredibly difficult time and it's understandable that you have questions and concerns about her treatment options going forwards. 

    It sounds as if your sister has quite a lot going on medically and this may be why the oncology team doesn't feel that radiotherapy is an option for her at the moment. However, I can understand why you feel that she has been so badly let down and want to make sure that this doesn't happen again. 

    We have some information on our website about getting a second opinion if this is something that your sister wanted to pursue and I'd also suggest getting in touch with the hospital PALS department. It's their role to help resolve concerns or problems when you're using the NHS and given all that your sister has been through it may be that they're able to offer some support. 

    If you'd like to talk to one of our nurses about your questions and concerns you're most welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm. I'm sure they will be happy to offer any information and support that they can. 

    I hope that the assessment with the anaethestist brings some good news and that the team is able to improve her quality of life. 

    Keep in touch and let us know how you both get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator