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Just after some advice and a bit of a rant if I'm honest. I have been hesitant in posting this for a while now because I know in comparison with alot of people I've "got away" with not needing alot during my CC diagnosis and treatment. However that's not the whole picture. Bare with me this is complicated.
Following two Lletz and a lymph node removal I was staged as 1b1....just....like literally just on the next bracket. Because they had clean margins from the Lletz and there was NED in the lymph nodes that was where my treatment ended. Surgery was April 2019.
Fast forward to now, I am having so many issues still. I'm bleeding during sex (cracking as I am a newlywed) and between periods, my periods are 45ish days apart and I'm getting alot of discharge down there that isn't particularly pleasant. Sex is also quite painful still.
I have just had swabs taken to check for infection and a smear done for my check up and smear was negative for HPV which is obviously awesome news. BUT I still feel like something isn't right. I'm can't put my finger on it but I just feel like something is being missed.
I should explain for reference, that I have an unaturally large occurance of majority of types of cancer in my family, including kidney when i was 3 (yay living with one kidney- go me).
My mum has had more than her fair shares worth too....in fact she has had more than a football teams worth as she has had 18 ...yep 18 instances of cancer in varying parts of her body. Both breast, lung, kidneys and bladder. Kidneys and bladders both recurring. Other delightful diagnosis in the family have been ovarian, skin, brain....I might be missing some. Who even knows any more.
Anyway so my point is the first thing people will say I'm paranoid....well....maybe a little but probably not as much as you would expect.
Anyway on top of my gammy lady garden I have a host of other things going on. I have been tested for underactive thyroid as had various symptoms such as weight gain, hair loss and dry skin amongst others. I have had a colonoscopy as I was bleeding from the bum and my habbits had changed and I'm having ridiculous bouts of acid reflux which results in vomiting for which I'm awaiting an endoscopy. I also have breast screening which I started at the age of 30, having been told at the age of 25 ( before my cc diagnosis) that I would need screening from 30 followed by hysterectomy and mastectomy when I have had my kids (which I'm now too scared to have any in case they inherit all this rubbish).
For reference, we were tested for brca but it was negative but geneticist still recommend losing upstairs and downstairs to reduce my risk.
So far apart from an initial low thyroid reading (which upon repeat was stable,) everything has come back clear.
I feel like I'm losing my mind! I genuinely don't know where to turn now. Part of my feels like I should just opt for the hysterectomy now because I don't want to pass this "Cancer life" on to my kids. But I know that's something I can't undo once it's done. (I have an appt with gynae on Monday to discuss freezing eggs/embryos)
Has anyone had similar issues? Not all of the above obviously 🤣, but the discharge, bleeding etc.
Please tell me I'm not alone, and not nuts!
Wilms tumour, full left nephrectomy and chemo 1991. Full remission 1993
Abnormal smear, HPV detected 29.01.19
Lletz procedure and biospy 11.03.19
CC diagnosis 21.03.19 Adenocarcinoma Stage 1
25.04.19 Further Lletz and laprascopic lymphadenectomy
October 2019 - NED :)