CervCa got all clear from cone,but hyst recommended

Hi

I got diagnosed cc Ia1 end March; had cone biopsy in May with all clear nearly 2 weeks ago. Total hyst is recommended for me from gyn/oncol team. Keep ovaries. However, as I am treated at this stage, decision is mine. I have appt on 11 June to book op/make final choice. And what a choice! It's becoming all I'm thinking about.

I am mostly thinking of having op since the alternative of close monitoring and worry of recurrence would just be in my head all the time. Although still monitoring anyway. However, when I read about possible sexual issues after hyst, I am terrified I might make wrong choice when I don't have to have this op. That's biggest issue for me, and not easy to talk to docs about! (I have mentioned it though, but all I got was that cervix removal and sex research is 'inconclusive'). I've tried to read loads, but can't get a sense really of what the risks are either way (no treatment risk vs hyst risk).

Anyone else been in this situation or have any info/thoughts?

thanks for listening x

Hi I have recently been in a similar situation. My smear showed moderate changes but colposcopy/biopsy came back 'ungraded' favouring high, so it was explained that I was at least CIN 3. I also had breast cancer two years ago when I was 38 which is estrogen receptor positive. My gyn/onc didn't offer me a loop or cone he thought going straight in for a total hysterectomy was the best option for me. I had 5 weeks to get used to the idea and I had my TLH/ BSO on the 25th may. I had all the same concerns as you, especially the ovary and cervix removal. They have taken everything and so far I feel no different whatsoever!! I'm still having t same urges as before which is very frustrating as I still have weeks to wait yet!! That side of my marriage is very important to us both. I've had night sweats which I was having anyway due to taking tamoxifen and they are not too bad at all but apart from that I feel exactly the same. Peace of mind is wonderful, I had an ovarian cancer scare earlier this year which turned out to be an ovarian cyst but after already having breast cancer I thought I was going to die. I couldn't look at my children without crying it was a truly awful time and I never want to feel like that ever again. My husband couldn't leave me on my own for longer than 20 mins as I would have a panic attack but now it's all been taken away so has the risk. I am hoping surgical menopause won't be too bad as I am not allowed to take hrt.
Good luck with your decision, I'm happy to answer any questions x

Oh thanks for your reply. Yes, it's the peace of mind that is swinging it very much in favour of hyst for me. Hey, i'm soo glad it went well for you. I have heard quite a lot that there can be high urge for it quite soon after - less than a week in your case. We still haven't had intercourse since cone biopsy 4 and half weeks ago. Outercourse is good though. (Only recently learnt that word lol). Thinking of trying though. It is very encouraging to hear that women feel normal afterwards. Oh so much worry sometimes xxx

Hi bea725. I am sorry you had a cervical cancer diagnosis. I had a radical hysterectomy for 1B1 adenosquamous cervical cancer 2 years ago. If it were me I would do the hysterectomy, cancer is nothing to mess with. You're better off getting it all out before it spreads. Why didn't your gyn/oncologist recommend surgery to begin with? What grade is it? Also, regarding the sexual issues, Sex is basically the same for me. I wouldn't base your decision just on that. I'm surprised your gyn/onc team is letting you choose. Let us know if you have any more questions.

I have - or had - Ia1, and the cone biopsy removed it all, clear margins, no spread etc. It is my choice because it has been treated by the cone. The recommendation is to have hysterectomy because if not there is very close monitoring. I am tending towards hysterectomy, it's just that everytime I read that it should be a last resort decision, or that someone has had problems afterwards, I am wondering if it is the right decision. I have read plenty about Ia1 being treated by conization only, and plenty of references to it being treated by hysterectomy as a gold standard. As I say, it is hard to make a decision. I am tending towards hyst as know I will worry every time smear/colposcopy comes up.

Even with the hysterectomy there is still worry and lots of check-ups. You still will get vaginal cuff smears as well. It would be a hard decision.

s
Lisa

(((bea725)))

Do you know what cell type you have (squamous or adenocarcinoma)? I was a stage IAI with adenocarcinoma which was diagnosed at colpo/biopsy. My gyn/onc said if I'd had squamous cell he might have been willing to consider a less invasive treatment with very close follow-up but not with adenocarcinoma as it can "hide" and have skip lesions, meaning it could still be missed even with close follow-ups.

If your gyn/onc isn't making a recommendation one way or the other, I'd ask them if it were their mother/daughter/wife what would they recommend.

As the others have said, cancer is nothing to be taken lightly, and you have indeed been diagnosed with cancer, not pre-cancer, dysplasia, etc. Not to scare you, but we have had a few ladies initially treated conservatively only to have a recurrence with a more difficult situation later on. Side effects and the like from surgery can all be managed, but you need to be around in the first place!

Do your research, get as many opinions as you need, then do what you feel is best for yourself long term.

Hi again
Thanks so much for your thoughts. I think you're right that it's nothing to mess with. My gyn/onc would like me to have hyst, no question. He also said that even close monitoring can indeed miss things - eg cells can be further in cervix - well I should know anyway as I've had normal smears all along until, age 49, 3 years after normal smear, get high grade dysplasia and early cancer - wham. I guess they monitor closely because there is always a concern, however small, that it could recur/could be missed. I have squamous cell btw.

I am going to go with hyst. It feels such a big thing though, I wake up every morning feeling anxious, with it on my mind. I'm doing things, but it's a worry. I just want to get it out of the way and move on. It's beginning to sink in also that it is/was cancer, it's serious, and will require ongoing check-ups.

Can I just ask - what monitoring eg vaginal vault/cuff smears do people have afterwards? And is this because HPV can cause VAIN etc?

Good wishes to all of you x

It does take a bit for things to sink in, but it now sounds like you're ready to kick this to the curb, AND YOU WILL!! My follow-up schedule (and what seems to bethe same for most ladies) was pap/exam every three months for two years, every six months for three, then back to an annual.

BTW, squamous cell is the more common, less-aggressive cell type which is also "good" news. (((HUGS)))

Yes, it does take a while to fully sink in - there are different aspects, levels of sinking in I have found. The whole thing so far has been so quick (not that it felt like it at the time).

About the monitoring, it seems like there is more concern earlier on in case it recurs, or in case something was missed then? (and hopefully just checking to see that that isn't the case). And after that, if anything does happen, it will be picked up by less frequent check ups? And with no cervix, there is a much lower risk. As my gyn/onc said - 'no cervix, no cervical cancer'. I'm aware, and as he said, that HPV can cause other stuff too (hence vaginal vault smears), but cc is the most common outcome.