So ive been back at the hospital today for an EUA and to hopefully start my brachy.
Unfortunately when they put me to sleep and put the applicator in, it doesn’t reach the last bit of the tumour that is left. Apparently the scar tissue is in the way
So the doctors have said i need to do an additional 2 weeks of external radiotherapy to get rid of this last bit they are not happy with.
Has anyone else not been able to have brachy at all? Or has anyone had to have this ‘booster’ radiotherapy? I thought after 25 rounds i couldn’t have any more.
Just wondering what to expect really, Im guessing the same as the other 25, with possibly harsher side effects??
I dont have any experience of the extra radiotherapy but when i was having treatment i met a women and they couldn’t do brachytherapy on her and she had the extra external radiotherapy. Prior to brachytherapy my hospital do an MRI to check what response you’ve had and to see if brachytherapy is suitable as its not suitable for everyone. I think she coped fine.
I can feel the disappointment and worry about not being able to complete your treatment in the standard way. AMF’s experience of meeting someone who had the same issue is very reassuring - I have heard that women can have up to 28 weeks of radiotherapy, which would match with the extra 3 weeks you’ll be having. The brachy is more ‘damaging’ in any case, so that if you’re not having that but the standard radiotherapy you should be fine. The important thing is to smash that tumour! I imagine they may target just the tumour for these extra weeks. We’ll keep everything crossed for you that this works - as AMF says you won’t be the only person who hasn’t been able to take brachy - for whatever reason. Sounds like your team are on the ball and making sure you get the best care possible. Hang on in there. Xxx
Yeah i had the MRI on Friday, all looked fine the tumour has actually gone! Woohoo so they did say to me this morning they weren’t sure how brachy would go.
Just disappointed to have to do another 10 rounds, wanted it done and over with this week but never mind. Apparently my scar tissue is just 1cm to big
Thank you, yeah the team are great i cant fault them at all. Im just annoyed with my body
But as i said the oncologist today said there is no sign of residual disease so thats really positive. They just want to blast the extra bit to make sure they dont miss any microscopic bits that may be floating round.
Thank you. I did get a NED result at 3 months after treatment, but unfortunately my cancer was back within 10 months of my treatment ending. I was just unlucky. Hopefully you’ll have a successful outcome.
x
I had a total pelvic exenteration a couple of years ago, in an attempt to be rid of this, but it’s a huge thing to go through. However, I’m doing well and that’s the main thing. x
Thank you-I think we are all brave. I don’t follow everything on the forum, but I did go and read your posts about what led you to this point. How horrible to think it was all dealt with, only to discover it wasn’t. It just knocks you sideways, doesn’t it?
My surgeon tried a salvage hysterectomy after chemo rads. On reflection, I wish she hadn’t because I was opened up and simply closed up again because of radiation damage. That was really devastating for me-I was in tears in the recovery room with the lovely anaesthetist holding my hand saying how sorry she was. Then my cancer spread like wildfire in my pelvis.
Just 9 weeks later I had the exenteration, so I wasn’t in the best place physically to go through such major surgery. Knowing what I know now, I would have never agreed to the hysterectomy, and asked to go straight to the exenteration.
Yes it was a big shock to find out it had come back especially as i had clear margins, and no lymphnode involvement. I was only stage 1b2 aswell so it was definitely a shock. But hopefully this extra treatment will get rid of it for good this time.
Gosh you’ve really been through it haven’t you. Its awful having to go through it all alone aswell because of covid. But you should be so proud of yourself for getting through such a huge operation and coming out the other side. I think its amazing. I take my hat off to any lady that goes through exenteration, i really do xxx
Really hope this boost gets it for you. I went into hospital just as Covid was starting and had a lot of time on my own due to restrictions. Got discharged on the day lockdown was announced. But I went for my diagnosis alone (my choice) and we had zero help when I came out of hospital.
Would have been nice if someone had even made us a cup of tea, but no-one did. You learn to manage alone. xxx
Hi Amyr17, I just popped back onto the forum and noticed your thread. Sorry to hear your plan has had to change- must feel like a bit of a blow. However, it sounds like the treatment has worked well against your recurrence so hopefully the extra sessions will give you some reassurance. You’re such a strong woman, I know you’ll be fine. Thinking of you and sending love, xx
