My mum has metastatic endometrial clear cell carcinoma .
10 years ago she had her first cancer . It was in her womb . Endometrial clear cell carcinoma (she’s had a complete hysterectomy ( inc lymph nodes, ovaries, fallopian tubes). It was stage 1a , grade 3 . )
she’s recently been diagnosed with 1 tumour of metastatic endometrial clear cell carcinoma but it’s in her lower bowel ( distal sigmoid ) which is the same cell as her previous womb cancer . I have contacted her Mc Milan nurse.
mum has had an MRI AND PET SCAN. Had a CT on this Sunday.
I’m not satisfied I ( plus both my parents) are concerned they aren’t being completely honest.
I asked what stage this cancer is at they state “ we don’t stage or grade cancers now “
they are saying it’s the same stage/grade as 10 years ago .
her oncologist said they could do open surgery, remove the affected bowel and she’d have a stoma bag .
now they say she’s having keyhole. Plus stoma bag . And saying my mum must’ve Miss heard him before. They diagnosed in may 2023
no surgery until 20 th October 2023 !
bowel surgeon hasn’t been in touch. mums had ct scan yesterday. She was meant to have a MRI but they refused ( as she had stitches in her eye lid ). eye dept not taking stitches out until 22nd sept! oncologist said “ well we’ve got until 20th oct to get the MRI !
my mums having more pain all over her abdomen and slight blood loss from her bowels ( which they are aware of).
to me they’re messing her around and I feel there’s more to this than they’re telling us
I am sorry to hear that you feel your mum is being messed about by her care team. Has your mum had a biopsy taken during some of her tests? It would be most unusual for them not to be completely honest in such a situation - they usually don't hide anything and err more on the side of being brutally honest.
October seems a long time to have to wait from May for surgery, but it sounds as if they are still carrying out further tests. If her latest CT scan doesn't clarify things for them, they may still want to give her an MRI. Are you attending the hospital with your mum, when she has her appointments? It sounds as if she might fare better if you did. It is all too easy to get overcome by medical terminology. Have you asked why they have changed their plans to do open surgery and have now decided to carry out keyhole? You might find it helpful to write down any questions you have and attend her appointment when she returns for her CT results. Has she been told when the results will be back yet?
I notice that our moderator, Jenn, has replied to you in another thread with some good advice about contacting PALS. They should be able to help you to resolve some of your problems and let you move forward.
I sincerely hope that things start moving for your mum soon and you can get more clarification as to what is going on.
Please keep in touch and let us know how mum gets on. We are always here for both of you.
