New on here

Hi Marliee and welcome to the group

I’m very sorry to read about your daughter’s diagnosis, and appreciate as a mum myself you must feel devastated.

Are you able to share with us the treatment which is planned for your daughter? It would be helpful for anyone else who might currently be going through it to be able to help with their experiences. For example is it chemotherapy or immunotherapy or a combination of both? Will she have radiotherapy?  I know it’s a lot to take in and process when it’s a new diagnosis, but there are different drugs which have different potential side effects. I say potential because not every patient experiences treatment in the same way. 

The main thing is to take things day by day, and be guided by what your daughter wants and needs from you. Of course I am speaking from the point of view of being a patient, so my perspective will be different. What I most appreciated was calmness and not having my partner falling apart or crying (which luckily didn’t happen). 

Practical help like preparing food, dealing with housework, taking her to appointments etc-anything I wasn’t able to do myself was a godsend. In addition to all the practical things you might be able to help with, I think just being there if you can is really important and a comfort. You say the treatment will be horrendous, but you don’t yet know how it will be, or how your daughter will cope with it. Things may not be quite as bad as you imagine, so it’s best not to assume things before they happen and try and keep a positive mindset.

Do you know when your daughter’s treatment will start? 

Sarah xx

Hi. Thank you for replying....she has to have her mark up scan and another mri on tuesday, then the following monday she has a kidney function test...she has got blood tests to do tomorrow.  Hopefully within the next few weeks her treatment will start.  She is having five weeks of radiotherapy and chemotherapy then she will have the brachotherapy.  The cancer has just gone onto her bladder so they say that once the treatment starts shrinking the tumour,  which is 8cm, there could be a hole so she will need surgery.  

Hi Marliee 

Thanks for coming back to clarify. Many of us have done this treatment regime, usually with Cisplatin chemotherapy, but some have had other drugs which might be the case for your daughter, given her stage.

You need to be advised of all of the potential side effects in order to consent to treatment, but your daughter may not experience them. My main side effect from my chemoradiation was fatigue, with some bladder and bowel issues (cystitis and diarrhoea). Any side effects should be mentioned to the team treating her and she will be given meds to help. She will also be given anti sickness medication. 

When my cancer recurred it also went over my bladder, but I’d already had all the radiation I could have at that point so I didn’t end up with a hole (I’m guessing they may be meaning a fistula?). However, that’s something to be dealt with if it happens, rather than when as it’s not certain it will.

Kidney function tests and blood tests will be standard going through chemo, as it can be hard on the kidneys, so blood tests will happen in advance of each chemo treatment. The marking/planning scan should not take long, just to mark the tiny tattoos which will be used to line up the radiotherapy machine. I would recommend an empty bowel for this scan, as having a full bowel can mean the scan not being able to be done.

I wasn’t able to have brachytherapy myself, but many others in the group have had it so would be able to share advice on that.

Sarah xx

Hi.   My daughter is having cisplatin aswell

Hi Marliee,

I just wanted to say hello and send my best wishes for your daughter during this difficult time. I recently went through the chemo / radiotherapy that your daughter will have and I had Cisplatin too. I was terrified by it all but it was best to just take it one day at a time and follow the instructions as closely as possible. My main symptoms were nausea and troubles eating, but they gave me meds for this and I slept through a lot of it. Before I started I had had a radical hysterectomy, so I was already feeling beaten up, after the surgery I was told that it had spread to one of my lymph nodes, which had also been removed, hence the need for further treatment. Every case is different but we all share the need for help, love and compassion. I'm sure it must be very difficult to have to face your child going through this, but you can be her rock (as my husband was for me) and help her through it. The best thing is we aren't the only ones and a lot of people have done really well on the treatment we all seem to get.

Good luck and let us know how you are getting on,

Love Lulabell