Here we go again...

Hi everyone,

I'm a newbie to this; have considered posting before but I'm aware so many people have suffered so much more at the hands of this disease than I have; I'm sorry if my complaints sound trivial, but I'm getting to my wits end and really just need to vent as I'm feeling pretty alone. Apologies also if I ramble, I have a tendency to do so, so would quite understand if you opt to stop reading!

To introduce myself, I'm 26 years old, living and working in London, I'm a former MDT coordinator specialising in urology (and to a lesser degree, gynaecology), and I currently run a lung cancer chemotherapy trial at a university. Working so closely with cancer for quite a while now seems to compound my struggle to remain positive about my own illness; in truth it feels like a bit of a cruel irony, especially as I can't seem to get ahead at the moment. I am newly single, without kids, and have a supportive (if slightly baffled) family; I wish it were easier to speak to them about this but I feel like they can't see why I'm so worried - I don't know whether they have fully digested my diagnosis or understand the different scenarios I am facing. Perhaps I am being needlessly pessimistic, but given my occupation and repeated worrying diagnoses, I can't seem to snap out of it.

So...onto the reason I'm posting...I went for my 2nd post-diagnosis colposcopy today; as mentioned in my signature, I was diagnosed with T1A1 adenocarcinoma last year, fully excised with clear margins in November, no perineural or lymphovascular invasion, so for bad news, it was pretty good news. I had a colposcopy in May this year which was a difficult examination due to the scar tissue, but which showed some more naughty cells; a biopsy a few weeks later showed CIN and a LLETZ a few weeks after that showed CIN 2 (fully excised with clear margins).

This was a matter of concern for me, one I've not really been able to get to the bottom of; my cancer arose from glandular cells, and the subsequent neoplasia arose from squamous cells - so logically, they shouldn't really be related...I assumed it must have instead been caused by a reinfection...(which I now realise was probably just twisted logic designed to support the idea that I might one day get over this!) I'm conscious that in cancer there are no rules or definites, and even when biologically something seems to make no sense it doesn't mean it can't happen...this is really tough for me as like everyone else I just want a bit of clarity. Anyway...after that 'all clear' I decided to abstain from unprotected sex - although I had a boyfriend at the time (now an ex!) I thought it best not to tempt fate and try and give my body a break.

...So to today's colposcopy - I went in, the dyes showed nothing, but my oncologist noted a tiny white patch which could be little papillae further into the cervix, or could be more misbehaving cells. She took a smear and a biopsy and told me to call Monday when they will hopefully have a result from the smear at least (...I'll call Friday and Monday, just to be sure!) The thing I'm feeling so concerned about is the fact despite the likelihood of having been reinfected in the last 6 months is slim to none, and despite the fact that all cancer and neoplastic cells have been removed with clear margins several times, this keeps happening, and the only good news I seem to get is post-surgery. Obviously I may be worrying about nothing and won't know until I get the smear/biopsy result back from this batch...I just think about what would happen if there is something to worry about, and it's not pretty. Next stop, I guess, is hysterectomy, which at 26 seems like a pretty horrendous prospect (even though I'm sure I'll cross that bridge if I get to it...I'll have to...)

Has anyone else experienced this? Where surgically you keep getting the 'all clear' but cells keep coming back as neoplastic? Has anyone else had both glandular and squamous cell change? I'm aware that you can get mixed cell carcinomas but don't really understand how that happens, especially as in my case the severity of neoplasia would be different for each cell type.

Anyway, if anyone can offer any thoughts on that verbal diarrhoea I'd really appreciate it!


Hi Addends,

I’m sorry you’re facing this after already having been through and got the all-clear. I don’t have the answers you’re looking for but wanted to say hi!

I had adeno - so just the glandular cells. I’m sure you know all this already - but my understanding is that the changes are from an infection, HPV, which most ladies have, but most simply fight the infection off with no worries. For us unfortunates, it develops into CIN, which can develop to cancer if unchecked. So, you had the CIN removed, with clear margins, and therefore got the ‘all clear’. However despite protecting yourself from re-infection, you may still be carring the infection - ie it’s laying dormant? Could that be why you may have changes again?

Early changes (yours can only be very early due to your history) can be dealt with simply, and often don’t call for drastic measures such as hysterechtomy - certainly on someone of your age.

I can relate to your worry, and I’m sure your family’s reaction (or non reaction!) is just their own coping method. Nothing is worse than waiting for the results. Diagnosis is better than waiting!

I doubt anything I’ve said has helped as I’m sure you know lots more about the condition than I do, but I just wanted to offer some thought/comfort.

I will keep my fingers and toes crossed for you. Come to the forum to vent/ask/cry/laugh whenever you need to - it really helped me!

Keep smiling!

Lisagp x x x