External beam or brachytherapy?

I’ve had both radio (25) and brachy (2) and have had no vaginal issues whatsoever. I started using the smaller dilators before brachy started, and started using either a vibrator or a dilator a couple of weeks after brachy finished. This is to gently stretch the vagina to make internal examinations and sex more comfortable, as the scar tissue at the top can tighten up when healing and shorten the length of the vagina. I’m pretty sure mine hasn’t shortened noticeably if at all. 

You might be offered both as they target different areas. Radio covers a wide area - in my case it dealt with possible stray cancer cells in the lymphatic system. Brachy targets the underside of the cervix, which is the commonest place for endometrial cancer recurrence.

I’d encourage you to have a full and proper conversation with your CNS or a Macmillan nurse on the helpline before making any decision. I know it’s difficult not to let your mind run ahead but I’d also encourage you to try and wait on this one till you know the details of your treatment plan. I know it’s a difficult and stressful, but I’d also advise you to stop Googling - “Dr Google” is not your friend. Your cancer team are best placed to inform and advise you, as they know your own individual circumstances. 

Thanks for your reply. I don't have a team, all I know is that doctors at the cancer hospital (not my local hospital) are working on a treatment plan, but I haven't had any appointments to meet them or heard anything about the treatment plan yet.

My CNS and gynaecologist at my local hospital have broken my heart, frankly. They told me with great enthusiasm that my cancer would be 'totally cured' with radiotherapy alone, and I wouldn't be having any surgery (hysterectomy) because it 'wasn't necessary'.

Eventually I needed some pain meds and went to my GP, on looking at my notes she broke the news to me that my cancer was rare and recurrent, and there was definitely no hope of curative treatment. She explained to me, kindly but honestly bless her, how low the survival rate was, and that my outlook in particular was 'very grave'. I was not having surgery because my cancer was inoperable, not because it 'wasn't necessary'. She was very upset that the gynaecologist and CNS had happily let me leave the hospital full of false optimism. We talked about life expectancy a bit and she explained I should focus on quality of life over anything else. 

Good advice about Dr Google, every headache is a brain tumour lol. Same goes for Facebook, which my Mum frustratingly turns to for everything, despite me explaining to her there can only be so many 'supermoons' per month lol

xxxx

I had 32 external beam radiotherapy, and did have side effects during the treatment, but they disappeared quickly afterwards. I had no damage to my vagina whatsoever. I did use the dilators provided to keep the area stretched and open, and didn’t notice any changes in terms of shortening or other damage. I wasn’t able to have brachytherapy although I would have done it had it been medically possible, but it is important to note that brachytherapy treatment when you still have a womb is different to the brachytherapy treatment for ladies who have had a hysterectomy. 

I would agree with Marmite about Google-I would stay off it as it can be a scary place, and we as patients don’t have the expertise to analyse clinical studies. You said if both treatments caused damage you wouldn’t have radiotherapy, but brachytherapy is a form of radiotherapy, so would you not wish to have any treatment at all? I appreciate that you are looking for quality of life, but I would recommend talking this through very thoroughly with your doctor when you are given your treatment plan so that you are aware of all the implications of no treatment at all. 

You really have had a dreadful experience, being told that radiotherapy would be curative when this is not the case, and that must be really hard to accept. If your cancer is confined to your pelvis, it may be that surgery other than a hysterectomy could be an option. I think I’d be asking a lot of questions when you finally see your specialist. 

Sarah xx

Hi again Suki Silver, that all sounds very difficult and I feel for you with the disappointment you’ve had. I’ve come across the approach before when they lean towards only telling us what they think we can cope with, and gradually, but I’d find it difficult to find any excuse to not have told the truth. I’d suggest putting in a complaint to the Trust.

My nephew died from cancer when he was 12, he was having awful treatments and suffering dreadfully right up to his last moments, and never got to experience any kind of quality of life, even though there was no longer any chance of him surviving and hadn't been for some time.

It was an experience that haunts us and a very sobering lesson in enjoying the time you have, and not just pursuing any treatment available to the detriment of life and love.

I'm all kinds of upset at the moment because they called today saying I had missed my appointment, and the one before it, and I was dumbfounded, no-one told me about either appointment and I didn't receive any appointment letters. The CNS said 'Oh, we don't send out letters for these kinds of appointments' so how I was to telepathically know they had been made I've no idea. She was very stroppy with me on the phone about missing these (non) appointments, whereas I feel like I should be the one who's not happy! This isn't a good start, and I'm unhappy with the whole process already. After the phone conversation today all I've done is cry.

Suki silver, that really isn’t acceptable and I’m not surprised you’re upset about it all. With every one of my appointments I received a notification on my hospital app, a hard copy in the post, and a text reminder. I’d again encourage you to make a complaint via PALS and/or via your GP.

Thank you so much for your support, I've found it very comforting today, which hasn't been good day!

What is your hospital app? I'd love to get notifications of appointments like that.

Also, dumb question, what is PALS?

Hi Suki silver, bless you, you’ve had and are having such a tough time. Here’s a link for PALS - I don’t know if it applies in Scotland https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

The App is called MyMedicalRecord and I don’t know if just my hospital use it or if others do too. When all this started I received a text invite to get it to help me keep up with appointments etc. Maybe your hospital has something similar. Did they even say how you were expected to know about the appointments?

It’s called PASS in Scotland-Patient Advice and Support Service. It’s a service provided by Citizens Advice, so not quite the same as PALS in England, but you can speak to someone in person at a Citizens Advice Bureau or call/email. 

How did they send your appointment details Suki? I got a letter in the post for each one, with a text reminder. Have they made clear how you will receive future appointments? Your treatment has been very poor in terms of communication, so it’s not surprising you’re so upset. 

Sarah xx