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Hysterectomy booked for high grade pre-cancer cells Hysterectomy booked for high grade pre-cancer cells

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  #1  
Unread 01-21-2021, 09:42 AM
Hysterectomy booked for high grade pre-cancer cells

Hello

It's my first time posting here and I'm not quite sure which forum I belong in. After having a LLETZ loop excision and biopsy I was recently diagnosed with CIN II and CGIN and advised to have a hysterectomy since the biopsy didn't find clear margins but there was no evidence of cancer. My doctor advised a hysterectomy to be sure to eliminate the risk of developing cervical cancer. I was offered another LLETZ but he said as they will take more of the cervix there is a risk of bleeding and that smears may not be that accurate since there will be scar tissue. CGIN is also harder to detect anyway and then harder to cure if it develops into cancer.

I took the holiday period to think about it. As I am 43 and have two beautiful children already, I have decided to have the hysterectomy but I am otherwise fit and healthy. Reading other stories on here and elsewhere, everyone else seems to have a real health reason for the surgery and so feel much better after the surgery but I feel well and it's being done as a pre-emptive treatment I worry that I'm making a mistake. I am extremely nervous of the op, the recovery and of not feeling the same again! Prolapse risk scares me as does a different sex life. My husband is very supportive but it seems like a radical step. But maybe it's better this way than having to deal with another LLETZ and then have the op anyway, or deal with a cancer diagnosis at a later stage.

The op is set for Feb 2 but I can still change my mind. I'm working hard to finish all my outstanding work before planning for two full weeks off and then a slow return to work - i work for myself and at home anyway so this is possible.

I'd love to hear from anyone who has been, or who is in, my position, and what you decided and how you coped? x
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  #2  
Unread 01-21-2021, 06:53 PM
Re: Hysterectomy booked for high grade pre-cancer cells

Hello there

I have a similar story in some way to yours. The surgery is hard. You have a right to second guess your decision. I had it lapriscopically done however you spell it. I had a rough time after the surgery with bloating and gas and the intubation tube jacked up my throat and gave me sores in my mouth making it hard to eat for a week. I had to use Sepacol lozenges to help numb my mouth before eating and drinking. Most people don't get that I think. I had to have a total hysterectomy because suspicious growths were on my ovaries. They wanted me to remove one ovary completely because the tumor had cancer features and they would decide once in there after they did a quick biopsy on it if they would take the other and everything else. Because the biopsy wasn't benign but borderline they took everything including my cervix. I woke up not knowing what happened and was very upset because I wanted one ovary to avoid menopause. I have been suffering this past year because of menopause. It has changed me so much and caused so much stress on my family and me. I really need hormone therapy but my hematologist advised against taking them because I have a risk of blood clots. I am in a difficult place because of blood clotting gene. If I could go back I would have got a second surgeon's opinion. I never did because of Covid and all the fear around the time of my diagnosis. Everything was so rushed. I would say don't feel rushed into anything. Get another opinion about it. If you have to take your ovaries make sure you have a plan for hormone therapy after if you can take it. I think that would have helped my menopause symptoms immensely. I hope I am not being to negative about it. just trying to be real. I just wish I had reached out to people before I did mine.
  #3  
Unread 01-21-2021, 10:20 PM
Re: Hysterectomy booked for high grade pre-cancer cells

Hi, Molly. My situation was more or less similar. I had AIS, which is a more advanced form of CGIN, although not yet invasive cancer, and a LLETZ (or as we say in the US, a LEEP) that did not get clear margins. I was also offered either a second surgery, or a hysterectomy.

I was 44 and done having kids, but I still did not want to lose my uterus. I agree with you that it is one thing to have a hysterectomy if you've had lots of problems with bleeding, pain, etc. It's harder to get your head around if (like me) you have no symptoms at all and always had light, easy periods.

I chose the second surgery (not another LEEP but a cone biopsy, which is like a deeper LEEP) and I don't regret my choice at all. I think it was the right one. However, I wasn't able to get clear margins with that either. My doctor was willing to try one more time but said she couldn't recommend it because I had so little cervix left by that time that the chance of problems during a third surgery would be very high. So I went for the hysterectomy (and kept my ovaries, no need to remove them).

Overall, the hysterectomy went well, I had a smooth recovery and it has been fine. I've known many people who had no changes in their sex life after, and a few who have. For me, I do think sex is not quite the same fireworks as before, and I do miss it, but I do still have a happy sex life so it is workable. It's gotten better over the years as I've worked back into a "new normal". Again, I've known plenty of people who haven't had any problems at all. And otherwise, I feel pretty much the same.

Like I said, I'm glad I tried a second time to get clear margins. I would have been willing to accept a little extra risk of missing something. And I know I feel better knowing I tried everything I could. And even though it didn't work out as I'd hoped, the hysterectomy was doable also - I think either choice will be okay for you as well.

It's a hard and confusing place to be in, so just know I am sending you lots and lots of good thoughts and supportive ((hugs)). Hang in there!
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  #4  
Unread 01-22-2021, 04:48 AM
Re: Hysterectomy booked for high grade pre-cancer cells

Thank you both so much for replying! I haven't had any response on other forums. It make such a difference knowing people have been through the same experience. Until now, I had no idea so many women were impacted by HPV changes and at such risk of cancer. My two girls will absolutely be vaccinated as soon as they are old enough!

The menopause is scary enough without it being thrust upon you - I really feel for you April. That's fear for me too - that they will just yank out my ovaries too. this was heightened by the fact that on my notes at my pre-op they included an oopectomy as well (not correct spelling I know!), which was a mistake that they corrected but still had me worrying.

Juniper - our situations are very similar. one of my reasons for opting for a hysterectomy was to avoid having procedures before having to do it anyway! I'm also a worrier and will be convinced I have cancer all the time.

I'm still as undecided as I was but am now more reassured that there is life on the other side of a hysterectomy, albeit changed.

thank you for the support! It's such a scary time..

Mx
  #5  
Unread 01-22-2021, 10:43 PM
Re: Hysterectomy booked for high grade pre-cancer cells



I'm sorry you're dealing with all of this but am glad you found us. My colpo results showed cervical adenocarcinoma IAI (very early), so the surgery decision was made for me. But, like you, I really hadn't had major gyn issues, aside from irregular cycles which were managed with oral contraceptives. So, even with an actual small area of cancer, I still regretted having to remove otherwise perfectly good organs. But, I recently celebrated fifteen years with no sign of recurrence, enjoying my new normal. There definitely is life on the other side!

You mentioned that you are a worrier who would constantly be waiting for the other shoe to drop. This is a very real thing, and we even have a term for it around here: cancerhead. This can have a real effect on you both mentally and physically, so do take this into consideration along with everything else.

I know this is all very scary. But, the "good" news here is that you are catching things when there are options, and you have time to make an informed decision. We always say to do your own research, get as many opinions as you need, then do what you feel is best for yourself long term. Whatever you decide, we'll be here for you and help however we can. Sending hugs and every good thought your way!

  #6  
Unread 01-25-2021, 01:29 AM
Re: Hysterectomy booked for high grade pre-cancer cells




Which kind of hysterectomy are you having?

Like others, I already had a cancer diagnosis, so the decision for the hysterectomy was made for me.

My gynecological oncologist was AWESOME. I was back to full duty as a police officer 30 days after surgery. I fully credit Jesus and my surgeon for this. Do what the doc tells you for best recovery afterwards. Also let your doc know your concerns. If prolapse occurs someday, it can be fixed. So far, I haven't had this issue.

Having a supportive husband through all this is priceless. Let him pamper and take care of you. It's good for both of you

With cancer or pre/potential cancer, delay is never good. Better to just get it over with for best outcome and least chance of reoccurrance or progression.

Praying God blesses you with His comfort, healing, and perfect peace.


  #7  
Unread 01-26-2021, 03:44 AM
Re: Hysterectomy booked for high grade pre-cancer cells

Thank you for your replies. You are all so amazing and so strong to have coped so well with all of this.

I'm having a total laparoscopic hysterectomy - removing tubes but keeping both ovaries. It's one week today until the surgery and I'm more accepting of it. And I also know how bloody lucky I am to have caught it so early as I am very much aware of how many women don't get the choice I have.

I'm trying to get some running in on the treadmill as I know it will be a while before I can properly run again and I'm tidying the house and cooking/freezing meals for my kids. I haven't told them yet but will do in the next few days - need to have a reassuring look on my face when I do it rather than a scared stiff one! Have started getting things I need for the hospital, which isn't easy due to Covid - we are all locked in again in the UK so having to order everything as I am also isolating before the surgery. Covid test booked for Saturday!

thanks again for your advice. xx
  #8  
Unread 01-26-2021, 05:41 PM
Re: Hysterectomy booked for high grade pre-cancer cells

MollyBoots good luck with your surgery, I had a similar surgery to another poster above, I had an early stage cancer but I was not done having kids (actually mine was found during fertility treatment), devastating is an understatement. However, I do have one son and we are pursuing other means to grow our family. I have my first post-op follow-up (not surgery follow-up but six month check) and I’m nervous but I do know that I made the absolute best decision to significantly reduce my chance of recurrence. There is nothing like peace of mind, especially since I had the cancer and had ZERO symptoms of any issues. I personally know two women who lost relatives to cervical cancer, so yes it is an emotional process but I am physically better, back to running, taking bootcamp classes, yoga, etc. Mentally I don’t feel burdened by making a choice that would have me constantly worrying.

I had my surgery during COVID so no visitors or support, that was hard but my surgeon was great and I recovered well at home (except for the terrible gas and intestinal pain, OUCH). You got this!
  #9  
Unread 01-26-2021, 06:33 PM
Hysterectomy booked for high grade pre-cancer cells

[FONT="Arial[/font]
  Quote:
Originally Posted by MollyBoots View Post
Hello

It's my first time posting here and I'm not quite sure which forum I belong in. After having a LLETZ loop excision and biopsy I was recently diagnosed with CIN II and CGIN and advised to have a hysterectomy since the biopsy didn't find clear margins but there was no evidence of cancer. My doctor advised a hysterectomy to be sure to eliminate the risk of developing cervical cancer. I was offered another LLETZ but he said as they will take more of the cervix there is a risk of bleeding and that smears may not be that accurate since there will be scar tissue. CGIN is also harder to detect anyway and then harder to cure if it develops into cancer.

I took the holiday period to think about it. As I am 43 and have two beautiful children already, I have decided to have the hysterectomy but I am otherwise fit and healthy. Reading other stories on here and elsewhere, everyone else seems to have a real health reason for the surgery and so feel much better after the surgery but I feel well and it's being done as a pre-emptive treatment I worry that I'm making a mistake. I am extremely nervous of the op, the recovery and of not feeling the same again! Prolapse risk scares me as does a different sex life. My husband is very supportive but it seems like a radical step. But maybe it's better this way than having to deal with another LLETZ and then have the op anyway, or deal with a cancer diagnosis at a later stage.

The op is set for Feb 2 but I can still change my mind. I'm working hard to finish all my outstanding work before planning for two full weeks off and then a slow return to work - i work for myself and at home anyway so this is possible.

I'd love to hear from anyone who has been, or who is in, my position, and what you decided and how you coped? x
  #10  
Unread 01-26-2021, 06:35 PM
Hysterectomy booked for high grade pre-cancer cells

  Quote:
Originally Posted by Kariberries1 View Post
[FONT="Arial[/font]
Hi Molly, I think you should do the surgery..I had 4 laser surgeries done and my hpv kept coming back. It is expensive and emotionally tiring to keep having those procedures done. I'm glad I had my hysterectomy a year ago. I only wish I would have done it sooner..
Good luck
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