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I've just had my review appointment (which can I say I'm proud as hell about, 6 months!!! So chuffed!! Considering I used to have a panic attack at the thought of going from 3 monthly to 4, I've now done 6!! And just like the rest it's totally doable...a little positivity and reminder for anyone going through this or just finished treatment that we can totally kick ass)
but I just wondered what your experiences of follow up appointments are like now, for anyone else that's around a similiar stage?
I'm 32 and I'm looking for some advice on where to go for information on hormone replacements or supplements that can help? I'm really worried about HRT as I felt like my tumour was hormone fed but I'm really worried that not having anything could do more damage as I'm pretty young and should've had a fair way to go before reaching this wonderfully unstable place they call the medically induced menopause ;)
I've been having a few niggles and my GP pretty much doesn't want to know, in fact she told me that because of what happened (the c word) that I'm looking for holes in things constantly, which has really upset me because I barely go unless I have a major niggle and has made me worry about raising stuff now. I'm quite cross about it tbf and don't think I should feel like this at all but it's like they aren't bothered.
I've asked for advice at my gynae review today and the registrar I spoke to pretty much said it's all side effects and there's not a lot they can do. I just wondered if anyone has had any luck will follow up treatment or advice? I totally get this is standard procedure for them and they see it so much, but it's so hard knowing what is normal, what's side effects from treatment and what isn't!! Does anyone else feel like you're playing a game of Russian roulette sometimes? I do wonder if it's PRD but they won't even acknowledge it's a possibility at the moment and I just feel like I'm at a loss of what to try next as I'm running out of excercises/activities and natural remedies to try.
not sure if anyone has had similar but some of the symptoms I'm really struggling with at the moment alongside the standard bladder and bowely issues, (I won't go into them all hahaha we'll be here all blooming day (hiding monkey emoji):
- hip pain (I've had a DEXA scan which is saying I need additional vitamins) i struggle with it so badly after doing excercise, walking and sometimes just laying flat sets it off.
- swelling of left leg, ankle mainly, actually just my left side of my body (massaging helps but it's very strange, not to the point where you can leave an indent by pushing but just fatter than normal and really uncomfortable).
- I also struggle with my groin, left side, like constantly feeling my underwear is too tight (I'm continuously buying bigger knickers (if that makes any sense whatsoever)
ahhh so sorry for the long ramble, any advice greatfully received.
sending love <3
2 May 2017 Smear 4/5 May 2017 Haemorrhage. 8 May 2017 Colposcopy, LLETZ, punch biopsy.10 May 2017 MRI 11 May 2017 CT 1 May 2017 suggested diagnosis of CC 23 May 2017 diagnosed CC 2b19 June 2017 Start Chemo/Rad Finished 27 July.5 August 2017 Brachytherapy18 October 2017 MRI 7 November 2017 12 week appt & MRI results - lymph nodes no longer showing, inconclusive about remaining tumour. Scan again in 3 months. February 2018 - All looks good, NED.
June 2018 - NED
October 2018 - 1 year post treatment - NED
October 2019 - 2 years post treatment still NED
September 2020 - we think still NED!? Fingers crossed!