Hi all! I’ve been lurking for a little while, reading your questions and stories, and found them immensely helpful on my own surprise journey - thank you all for sharing. Now I have a question of my own!
My background - late last year after decades of regular negative smears, I had a routine smear performed by a gynae, as we were investigating my lower back pain which had not resolved with physio. He thought he would just rule things out, though he did say my cervix looked abnormal, and couldn’t be sure what he suspected was an ectropion was not something more sinister. So he made sure he (painfully) got cells from further up too.
I thought nothing of it, having been only with my husband for the last 20 years (I am 45 now) and been used to clear smears aside from one borderline one before I even met him. So when shortly after he called me to tell me I was HPV 18+ and he’d found CGIN, I was frankly baffled and assumed a mistake. Having since done my research, I now realise this wasn’t as impossible as it sounded, having never actually been screened for HPV before, and most GP-type smears being unlikely to detect CGIN.
A cone biopsy followed (which caused severe bleeding 12 hours after and a trip to A&E, seems pretty common on these boards recently!) which despite the gynae digging deep, he did not manage clear margins. Due to my past history of multiple abdominal surgeries, he escalated me up to an extremely reputable and lovely professor who I am very lucky to be seeing.
She ordered an MRI which came back probably clear but with the caveat there may still be something hiding behind the mess the first cone biopsy had made though it seemed unlikely. We went ahead with a hysterectomy and took my tubes too, but left the ovaries (my request) and lymph nodes as cancer had not actually been diagnosed.
To everyone’s surprise, it turned out there actually was a tumour, staged at 1A2, hiding behind the cone biopsy mess. So instead of putting all this behind me, this is only the beginning (in terms of time) with a five year follow-up now required.
My question is this - I’ve been told there is a 5% chance that there may still be microscopic tumours in my lymph glands or ovaries. I’ve been given the option to have further surgery to remove both. Alternatively, waiting and seeing is just as “right” an option, though if something does develop over the next few years, by the time it is visible, it will be more of a problem than if we removed it now. She says there is no wrong decision and it is entirely up to me.
I am completely torn on what to do. I wanted to (and did) keep my ovaries following the hysterectomy for the hormones; I’m not entirely sure if HRT (+ testosterone?) can completely replace them? I’m very hormone-sensitive, I was on HRT for the last few years for PMDD anyway. When my oestrogen is low, I am useless. I’ve also heard removing ovaries increases the risk of heart problems, and I’ve lost family members to that too soon. And I’m also worried about the risk of lymphoedema from the lymph node removal - I know a few people with it, including one who had cervical cancer, and how badly affected their lives.
All that for a 5% chance, I just don’t know if it’s worth it, particularly as if she takes the lymph nodes, she may not get all of them and there’s still a chance one with cancer may remain. Though my ovaries probably don’t have many years left in them either. On the other hand, it would be good to live without worrying as much about every new ache and pain (yes, I still have to fix my back problem after all this!!)
I know nobody here can make this decision for me, but I would love to hear people’s experiences and thoughts. Research is all very well, but that leaves me 50/50, so hearing from people who have gone through these operations (or indeed, had the choice and decided not to) would help me to make a decision I am more certain on! The hysterectomy was an obvious decision, this one is a hundred times harder.