New here! Background + need to make a decision over further surgery.

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.

Thank you!!

Hi Exhausted,

I think you’ve probably answered your own question, actually. With your family history and other complications I would think you would probably be better opting for the ‘wait and see’ approach, especially as you’re still recovering from a hysterectomy. IF there are ongoing problems (and the important thing is that you are monitored VERY REGULARLY) then there are other options to surgery - if the cancer returns there is the possibility of chemo and radiotherapy. Many ladies have been down this road after hysterectomy when it was found that something reoccurred or was not cleared. This is something you would discuss with your Gynae oncologist.

None of us know the future, and if you do have to return for treatment nothing that happens is a ‘good option’ as cancer is just a nasty thing to have to deal with. But maybe don’t put yourself through everything at once.

Hi Exhausted04

A tricky decision indeed.

The side effects of my treatment include bladder and bowel issues and I’ve forgotten what a vagina was intended for but by far the worst side effect of my cancer treatment is lymphoedema. In my experience the oncologists tend to make light of lymphoedema and it wasn’t even mentioned in my latest follow up report despite me emphasising how much it has adversely affected my life. It doesn’t help that lymphoedema services across the UK are patchy - pretty poor where I live based on my experience of the last 12 months - I haven’t been able to get a new compression stocking that controls my swelling since last Spring and trying to get it sorted has been a nightmare. Sorry about the rant but that’s how much of a pain it is. That said I believe that most people don’t get lymphoedema as a result of removal of the pelvic lymph nodes and of those that do some only get it mildly. FYI there is a treatment (only available privately - expensive) that MAY help to prevent lymphoedema; this is LVA surgery - see the following link:

I guess I couldn’t have escaped damage to my lymphatic system given my cancer was stage 2A1 (squamous cell) and I was told that I had a significant risk for recurrence if I didn’t have chemo-radiotherapy. So at least there is some consolation that if it hadn’t been for all my treatment I might be in a very different situation to the one I’m in now - NED so far. However your current situation is different to what I was facing when I consented to my treatment - I wasn’t offered a choice. Just a thought but do you know if you have increased risk for recurrence because you had CGIN?


Hi Exausted,

I think it is a difficult decision to make, looking myself The odds were against me, I got adenocarcinoma which is not detectable from smear tests (less than 20% of the cases), I was diagnosed at 2B even though I had regular smear tests, so I had chemo/ rads and brachytherapy. Also, I am not on HRT as it is not recommended for my condition and I was only 33. If I had the option for a RH without chemo I would do it . If you have microscopic cancer in your lymph nodes then it means that it has the tendency for metastasis. You better know now than later because later it might be more difficult to treat especially if it reach distant organs which you will need to go though a more intense chemo regime. Hope all the best with your choose.

Maria xxx

Thank you everyone, I truly appreciate your thoughts! Frankly lymphoedema does scare me, and if the lymph nodes all came back clear but I developed lymphoedema as a result, and the odds seem higher of that happening than of the cancer having spread, that would be a hard thing to live with. Not that it would change the physical aspect of lymphoedema, but psychologically it would be a challenge, especially knowing it was fully my decision. Psychologically it would be easier to live with if it later turned out to be the right choice even if it physically made no difference.

Out of my three friends I know with serious lymphoedema, one I am now sure must have got it as a result of her cervical cancer treatment many years ago (I have not spoken to her about all this yet as it is very recent, but I will if she’s happy to) and she had the surgery at great expense, and does look so much better. The other two have it “naturally” - one has decided to live with it as she feels she can cope right now. The other is having a truly horrendous time and is now too overweight to have the surgery - in fact any surgery - even if she could afford it (she can’t). It goes without saying I have heard so much from all three about how the medical profession brushes aside those with it. And that scares me!

If they find microscopic cancer in the lymph nodes I would most likely need chemo or similar anyway, but at least it would be caught early and I wouldn’t need more hardcore chemo or similar, plus a much smaller chance of it having metastasis. There’s only a 5% chance of them finding anything. However, mine was also adenocarcinoma (already rare) and it was hiding despite an MRI and multiple biopsies (pretty sure that’s going to be very rare too). I know logically that no matter how many times you roll a dice, it doesn’t make any other number any more likely than others to come up again, but as human beings we unconsciously DO try and see patterns and assume if we had an odds-defying result twice, then a third time seems likely too. This does not help with my decision-making when people ask what my gut says - my gut is not helpful with this, it is trying to see patterns based on previous experience!

I will be monitored very regularly, and it sounds like if anything is going to make a move, it will do so in the next few years (I will confirm this with her). It’s a good question to ask if CGIN makes it more likely - as I know it has a nasty tendency to have skip lesions within the cervix anyway so maybe it does something similar here. Everything she took out had clear margins, and she said everything she saw when operating (open surgery) looked fine to her and she is an extremely experienced gynae oncologist, though of course she does not have microscopes for eyes! My recent MRI of that area and a recent CT scan were all clear too.

I am now leaning more towards not having it done, even though there is still that 5% risk. It’s going to be a gamble whatever I choose. Perhaps I need to find out a bit more about how much worse things might be if that 5% risk turned out to be true if I waited until something showed up on monitoring, versus having it taken out now pre-emptively. That is, after all, what I’m actually gambling with should I be that 1 in 20. Plus I have been through a lot of surgery recently anyway as jacks says - two minor and one major, all under general anaesthetic. I genuinely need to physically recover to say nothing of the mental stuff!

Thank you for listening to my rambles and thought processes - your replies have all helped me immensely!

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