Need Support From Far Away...How Long Can I Wait?

Hello all, I’m brand new here because I have almost nobody to talk to (especially right now in the middle of the day. My husband is at work and I have not been able to get in contact with him…and I’m not sure I want to anyway while I’m in this state…), and I needed to reach out. It doesn’t seem as though there is a whole lot of activity in this section of the forum, but I’m really hoping one of you out there might be able to give a little reassurance, as I’m feeling so panicky right now about what I’ve just been told…

I got my most recent pap done about 3 weeks ago. I thought I was in the clear. The physical test revealed nothing but a larger than usual uterus, but that’s common for me because I have adenomyosis, which has been treated for the last 3 years since I found out about it. Then the phone call came. This just after I found out I would need a very expensive crown and possibly a root canal done on one of my molars - which exploded last week.

My doc had me come in, and luckily I was in the neighborhood and could rush over. She told me CIN3 was found, and that it was a long way from cancer, but that I would have to come in next Saturday for a biopsy, and then possibly a “conization” treatment. I have no idea what any of this means for me as of right this moment, and am in a sheer panic.

I’m not entirely unfamiliar with the idea of having some abnormal cells, as in the late 90s, I was given cryotherapy to freeze some off twice, and nothing has appeared since, in all these years. I’ve gotten pap smears yearly since. The best part is, I had my usual pap done last year this time, and nothing turned up at all. I’ve just been treated for the adenomyosis as usual. How did this happen so quickly? Should I be concerned that this might be more aggressive than normal, and might develop into cancer quickly??

Here are my major problems. Not least of all, I’m in Japan, and while my Japanese is not terrible, I’m not all that great with medical terminology just yet. My doctor can speak some English, and she tried her best to explain it to me in exactly the way I typed it here. No more detail than that. I do trust this doctor, though I don’t like that she said she’d need to send me to the hospital for a certain procedure…I think the cone biopsy. I’ve had bad experiences in hospitals around here, and am not looking forward to that, especially since I’ll have to go it alone, as always, because my husband works all day and late into the night, even on weekends.

Now the big problems - MONEY. How much is it going to cost for me to get the first biopsy, then the…cone biopsy? Is that the order this all goes in? I’m not terribly clear, but I think it’s because I’m in such a panic. Does the cone biopsy get rid of the cells, or is it just another diagnostic, and there’ll be another procedure I’ll need done after that?

I know nobody can tell me what it will cost in Japan, though we are on national insurance and have a decent plan. Just to get a ballpark idea (it can’t be that terribly different worldwide, I’d hope, where there is a national insurance system, can it?), are these biopsies and surgeries terribly expensive?? Manageable? Savings draining? I need to get some sort of idea, because I have a hugely expensive event coming up about mid-November. The ball has already started rolling, and I will need to see it through. It’s already costing money we saved for a long time to come up with, so I have to figure out how we’ll be able to arrange around this, how to pay for my treatment…On top of that, I’ve just had a molar explode, which is going to cost a small fortune (which I also only JUST FOUND OUT ABOUT TODAY…in fact, the call from my gyn came a half hour after I left my dentist’s office with the bad news…just…WHY???).

I’m an absolute wreck. From what I’ve been reading on this forum and others, it sounds like the time between diagnostic testing and removal of cells is slow going. When you have CIN3, is it safe to wait a month or two after getting the first biopsy done? November is quickly approaching, and I’m just wondering if I’m going to be able to plan it so that I can make my event (3 solid weeks in November of basically a boot camp type education intensive - nothing physical, though, just learning and testing), make sure that’s paid for, then go ahead and get the conization procedure that might be recommended to me. Does this sound reasonable to anyone? Possible? Too risky to wait it out? I read somewhere that it can take up to 10 years for CIN3 to develop into cancer, but…I really don’t want to bet on it. I want to get it taken care of as soon as possible, but I do worry that my financial situation at this moment is going to make things really tough. If I can just wait until December to get it all done, it would be such a relief…

I’m just so frightened. I don’t know how this could’ve developed to such a level in only a year’s time! I have had worse than usual back pain, but my doctor told me at the time of my pap a few weeks back that it was because my uterus was inflamed, and putting pressure on my spinal nerves…I really am fearing the worst. Especially with my history of this…even though I went so many years clear of any abnormalities! Why is this all happening at once, and right before one of the biggest events I’m going to be undertaking??..I hope someone here can relate. I just don’t know where else to turn. Thanks so much in advance. I really hope I might hear from anyone who might be able to guess at some answers, here. Any shot in the dark that might sound positive, I’ll be happy to grab on to!!! I just need some hope right now that it’ll be ok. I don’t even know how I’m going to break all of this horrible news to my husband tonight.

Comment...why am I having trouble posting this? Huh...


Hello. I'm sorry you seem to be having quite a lot on your plate at the moment, and being in a foreign country certainly doesn't help.

I can't help re costs, presumably if you have some kind of health plan then you'll just pay the excess. Maybe you could call to find out?

Re the cin. You've had your smear, it's come back as cinIII. They want to confirm the diagnosis with a biopsy. In England this takes between 4-6 weeks. Then once it's confirmed, they'll want to get rid of it. In England usually they do it with a lletz. A cone biopsy is a procedure that takes off a bigger chunk of your cervix, higher up. Have a look on the Jo's website and you'll be able to see for yourself what the different procedures are for getting rid if the cin. When you see the gyn for the biopsy, you could try and ask whether they think it is cinIII, whether the area to remove is large and why they are thinking more of doing a cone biopsy rather than a lletz. Both procedures are ok. I had two lletz and a cone biopsy because my cin was recurring and they thought it might be higher in the cervix. Good luck and please try and not panic (easier said than done, I know). When I was going through all of this, I found reading the info on this website helpful, so I was armed to ask questions at my appointments. X

Thank you so much, Oldhand! I'm afraid now I've only made myself panic worse. This forum seems wonderfully supportive, but I came across another that seems to have a lot more active members talking about CIN3...and that one seems to be terribly negative. It's made me worry even more.

I can't stop wondering if these abnormal cells have been hiding through all the normal PAPs I've had, and growing worse and worse, and that once I get the colposcopy and biopsy done on Saturday, they'll find I've got full blown cancer. It was 20 years ago that I was told I had HPV - and back then, nobody seemed to know what exactly it was anyway, but then I got the cryosurgery done for the abnormal cells, then got another one done, and it disappeared for all that time. Nothing ever resurfaced. I've never had an abnormal PAP in all that time, all that time has HPV been wreaking havoc on my body? I see the word "adenocarcinoma" being passed around as something that was discovered later, and it just makes me turn completely cold with fear. I have adenomyosis, though I have been getting treatment for it for some years now, and it's under control,'s just all the "what if??" terrible questions.

I have no idea how I'm going to make it to Saturday here alone. I have nobody around to talk to about it. I don't know a single other soul who has had this problem (or will admit to it, at least). I have to thank you so much for taking the time to reach out to me, as things seem a little slow on this board. I hope it means that people have had their turns panicking about this, gotten them taken care of successfully, and gone on to live healthy, abnormal cell and cancer-free lives! I'm just so scared until Saturday, when I can finally have the next step started...

My adult son has been here visiting for the last week, and he's been here with me through it, but I will need to see him off in a few hours, and I will likely not be able to stop myself from crying. I don't want to stress him out and leave him like that, but this is just still so fresh, I have no idea how to contain myself presently. I just hope he'll understand, and not worry about it too much while he's away, back home. I don't want to be a burden on anyone.

EDIT: Just got back from seeing my son off - I did not cry.  :)