Pregnancy after trachelectomy

I was diagnosed with 1B1 cervical cancer during a routine checkup after the birth of my baby. I had a radical trachelectomy to remove the cervix in September 2008, and my post-op check in December 2008 was clear. During that checkup it was necessary to puncture a membrane that had grown over the opening, as it was causing menstrual blood to pool in the uterus. This was a simple and painless procedure that took about 20 seconds.

My baby was born with a heart defect and died. I desperately want to get pregnant again as soon as possible (I'm 35 years old now). I've been to a fertility specialist (FS) for advice, and have been advised that I may have difficulty getting pregnant without a cervix because without the protective benefit of cervical mucous sperm don't survive for very long.

I'm having some tests done this week to check that I am in fact ovulating properly and to check whether there is any cervical mucous whatsoever. If not, then the FS has recommended intra-uterine insemination (IUI).

I've also been told that any pregnancy will be a high-risk pregnancy, and that the chances of delivering full-term are about 60%. Although the surgeon who performed my trachelectomy is happy with the placement of the cerclage, he has warned me of the risk of second trimester miscarriage and of stillbirth and premature delivery. The FS explained that this is in some cases just a result of the weight of the pregnancy on the cerclage, and in some cases a result of infection, as the cervical mucous also contains antibodies which help to protect the uterine environment during pregnancy. Apparently these risks are very similar to those of a woman with a normal cervix who is pregnant with triplets.

I've been referred to an obstetrician who specialises in high risk pregnancies, should I actually manage to get pregnant.

Has anybody else had a trachelectomy and subsequently become pregnant or tried to become pregnant?

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Hi Mobilis,
First I want to say that I'm so deeply sorry to hear about the loss of your baby. I can't even begin to imagine that heartbreak. I also had a radical trachelectomy in September 2008, but I haven't yet tried to conceive. Thank you for posting your story and everything the fertility specialist said because I'm very much hoping that one day I'll be able to conceive. I'm only 24, so I'm nowhere near ready, but reading what you wrote informed me of so much that I didn't know, so thank you.

I know that it sounds and maybe feels impossible to get pregnant after this, but you have to remember that it is possible. I wish I could give you a first-hand account of this, but instead I can only post this link to a story I read when I first got diagnosed. http://www.mskcc.org/mskcc/html/81429.cfm. I went to Memorial Sloan-Kettering for an initial consultation, and while I decided to go with another doctor for my surgery, this story and others that Dr. Abu-Rustum told me made me realize that while it is difficult, I could be one of the lucky ones who is blessed to have a baby after this nightmare. Why not me? Why not you? It is possible.

I hope this woman's story brings you some comfort. Please let me know how this process goes for you. Good luck!!!

:)
Erin

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Hi! I had a trachelectomy in Sept 08 as well and I'm expecting. I'm 9 weeks this week. I haven't been trying, but it just happened. Every women is different. It was explained to me before my trach that I may be put on bed rest early and would have to have as stint put in place to hold the baby in, which is what the cervix does. I will be treated by a high-risk dr. through out my pregnancy, but I don't know what's in store. Like I say everyone's different, so we never know what we will experience. But I hope you are blessed to conceive. Once you choose hope, anything's possible.
Be blessed!
Quita

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I apologize, I had my trach in Sept 07, 08 I was a 1yr survivor.
Sorry.
Quita

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congrats, quita! and wishing you the best of health during your pregnancy!!!

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Congratulations Quita, have a safe and happy pregnancy. It seems that it is possible to get pregnant without intervention by a fertility expert, but I've decided to go all out since I'm already 35. One of the things that's really upset me since my trachelectomy is how difficult it is to find information about pregnancy post-op. Every site just seems to have a re-print of the same terse article giving the basic facts. It's fantastic to hear from people who have had happy outcomes. Best of luck.

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Quita, congratulations!!!!!!!!!! Please, please keep us posted throughout your pregnancy. I so agree with mobilis -- there just isn't enough info out there about pregnancy post-op. I've read that i'll be high risk, will need a high risk dr., might need bedrest, etc. But i can't find any actual stories. Does that mean weekly ultrasounds? Does it mean bedrest from 20 weeks on? Does it mean hospital bedrest? I know every case will be different, but I would love a first-hand account of it. Most of what I've found online deals with the struggle to get pregnant. There's not much about actually being pregnant.

Mobilis -- your story breaks my heart. you have been through so much. I really, really hope that this works out for you. I am wishing you much luck. I am 33 and have been told we can start trying this summer (6 months post-op). My oncologist suggested going with IUI from the beginning.

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Thanks Flowershoplady, Mobilis & BAR32! Mobilis, maybe your body needs to build it's self up too from the procedure, the last bady, ect. I hope that it does work out, but remember it won't happen when you want it. I will keep you guys posted. I do have to see the High Risk Dr. I went for my 1st visit today. I was under the impression I needed a stent put in, but my Dr. did it when he did my trach because I expressed I wanted a child. Thank God for that. I'm not sure how often I will have to see the Dr. But I will post all of it when I find out. Good Luck BAR33 this summer :-0)

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Hi Quita

It's usually a standard part of the procedure to put in an abdominal stitch, as a trachelectomy (as opposed to hysterectomy) is only done to preserve fertility.

I've been seeing a fertility specialist (FS), and the good news is that there are no inherent fertility problems. Unfortunately, because there is no cervix there is also virtually no cervical mucous, which is required to keep sperm alive as the vaginal environment is too acidic for sperm. The FS did a post-coital test, where they take a sample from the uterus a couple of hours after sex - embarrassing, but after having what feels like the entire medical fraternity staring at my bits with bright lights and microscopes for the last year or so I'm almost immune to embarrassment. The results weren't good - there wasn't a single sperm alive after 3 hours. We're going for insemination (IUI) tomorrow morning - keep fingers crossed.

What did the high risk dr say to you about the risk of infection? I've been told that the absence of cervical mucous also increases the risk of infection in the uterus during pregnancy, which is one of the reasons for the high miscarriage rate.

I hope things continue to go well - have you seen the heartbeat yet? So exciting :))

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Mobilis I have my fingers crossed and said a prayer for you. I will ask about the high risk of miscarrage on tuesday. That's when I go back. Ya, you get immune to embarrassment fast. My hospital is a school and they usually have residents. You can request no residents see you, but what they heck. I learn best from experience VS lecture. I had a sonogram on Thursday 1/8. That's when they told me I was 8 weeks and I heard the heartbeat for the 1st time. I started crying cause it really hit me this is real. I've been planning my 1st Cervical Cancer Seminar, which was on 1/10, since late October and I was really busy with that, so I was in shock when I found out.
Keep us posted.
Good Luck!!!

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DH refused to go for the IUI. He cannot face all the uncertainties - the risk of miscarriage, stillbirth or premature delivery, the chance that we might have another baby with a congenital defect.

I don't know what to say. I'm absolutely gutted.

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Mobilis -- I'm so sorry that you are in so much pain. Pregnancy after trachelectomy certainly involves some soul searching, and I can only imagine how badly you want another baby. Maybe dh was just overwhelmed in the moment and the fear of losing another child was just too much for him -- Maybe he will come around? I'll be thinking of you. I've been doing alot of research for myself -- doctors can do so much for preemies these days.

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Thanks bar. Bouncing back...slowly. We'll try again next month and I'll use this time to work on my fitness, as I'm not sure what amount of exercise is recommended during pregnancy in our situation.

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Mobilis -- does that mean DH is reconsidering and may do IUI next month? I am so hopeful for you.

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Hi Bar, yes he has agreed to go ahead next month. In the meantime he's been admitted to hospital for a kidney stone... [sigh]. Sooner or later things have to start going right!

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Hi everyone, have been reading all your posts, and think you are all so brave. Im 26 and have recently been diagnosed with cervical cancer, I had a trachelectomy and lymph node removal last week, so am still recovering.

Through everything my main worry is being able to have a baby. I am so so so lucky that i already have a beautiful little boy, and thank god everyday that I got pregnant on the pill!!!

I hope that this chat page will help me stay focused, as am sure we all feel scared and even angry, but be able to support each other

xxx

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I had a trachelectomy aug. 2007. I have not tried to get pregnant. My doctor told me that I could get pregnant naturally because my cervical os is 'wide open.' I have 1 cm. of cervix left and was never told about the potential cervical mucous problem.

I did not have invasive cancer but instead have gone through 8 surgeries since I was only 26 yrs. old for recurring CIN 11/111. I refuse to give up and my oncologist now looks at me like i'm crazy. He wants me to go through a hysterectomy because I now have more precancerous abnormalities but it's unclear whether it's at the vaginal area where my cervix used to be or if it's on what's left of my cervix or both. I go into the hospital next month for more biopsies to find this out. Getting into a clinical trial is nearly impossible because my life is not in danger from advanced cervical cancer. So there is an expectation from all the doctors that I take all my parts out and move on with my life while trying to recovering from the devastation of ruined fertility and yet the likelihood of it coming back is high.

I would love to talk to someone who has experienced an abnormal pap smear after a trachelectomy.

mobilis, i am deeply sorry about your loss and i'm praying you are able to conceive soon!

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Tam, I really feel for you - you must feel as though the nightmare just won't go away. My first pap after the trachelectomy was normal, the next is only in June, but the surgeon told me that the risk of recurrence was highest during the first 2 years - I suppose by "recurrence" in this context they actually mean that they missed something.

I think that most people aren't fully aware of the brutal reality that when the medical people say that cervical cancer is "curable" they mean that your reproductive organs are dispensable. Personally I think that I could more easily live without my legs than without the ability to have children. Did you find that you were given much advice or counselling about fertility options (egg or embryo freezing and so on) before your surgery?

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I haven't been told about the cervical mucus either, but I've read about it, and I was told that the lack of it (i.e. mucus plug) can cause problems while pregnant. My dr. suggested trying IUI from the beginning, just to get the show on the road so to speak.

With respect to counseling regarding fertility options, all of my doctors kept telling me that I could always go the surrogate route. That was not very comforting to me, because i don't have any sisters or "volunteers." Ultimately, I had a three step plan for the surgery -- do the trach and leave everything, do a hysterectomy if you have to and leave the ovaries, or move the ovaries up if it looks like chemo. It was so hard not knowing what was going to happen until after i woke up. I absolutely agree with you mobilis -- by curable, they mean dispensable.

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Hi Mobilis -

I am sorry to hear about the lose of your baby. I can't even fathom how diffucult it must have been, along with your diagnosis.

While I technically didn't have a trach, because my procedure was 10 years ago and they didn't do it then, however, my procedure is almost identical to a trach. I have had two kids since having cancer and surgery. In my case, I have cervical stenosis due to the removal of my cervix, thus I have had to have my cervix fixed so it stays opened several times.

Both times I got pregnant it was high risk and had to go on bed rest, as well as was consulted for having a cerclage. In my case, I didn't need to cerclage because I keyloid scar, so my cervix and the tissue around it are horribly scarred and will not dialte or open.

However, from the day I found out I was pregnant I had to go for testing, ultrasounds and such, starting at about 6-8 weeks. I saw a fetal specialist weekly and had weekly ultrasounds from start to finish of my entire pregancy.

You will be prone to premmature birth, low birth weight and possible placenta previa (detaching of the placenta from the adominal wall). but if you follow doctor's orders, get monitored and be very careful, it might just happen.

Of course, there are other things to think about, like bed rest, no sex for the entire pregnancy (make sure your partner understands and is on board with that), as well as repeating testing weekly, which can disrupt your work schedule. You need to be sure you have a great support system and possibly discuss this with friends and family before you get pregnant to see if they are on board. Cause it does require a commitment on their end too, should you need bedrest, help around the house, or just moral support.

More importantly, talk to your doctor, find the right specialist and be sure they are willing to go along with you on your pregnancy plan too. Sometimes doctor's say get pregnant, but then forget that they are going to have to take on a high risk patient. Be sure your doctor gets it too and is willing to go through this with you, no matter what the outcome is. If they aren't willing,then look for someone else who is. They are out there, but few and far netween. Mine is an angel and I am thankful for his willingnees to take me on.

As for me, I experienced all of the above. I almost died during my first pregnancy, along with my son, and it took a long recovery (alomst a year) to recover. My second time around, was better, but almost lost the baby at 3 months, thus I was on bedrest for the next 3 months, until I hit the 6 month mark, all during the holidays (thank god for the Internet).

I do not tell you all this to scare you, but I just think it is unfair for a doctor to say go forth and have a baby without letting you know what all is involved. It can be very taxing on your life, family, friends and relationship, so be sure that you have the emotional and physical supports in place.

I really hope you get pregnant soon and that things go well. Please let us know how it goes !

PJ

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Hi Mobilis -

I am sorry to hear about the lose of your baby. I can't even fathom how diffucult it must have been, along with your diagnosis.

While I technically didn't have a trach, because my procedure was 10 years ago and they didn't do it then, however, my procedure is almost identical to a trach. I have had two kids since having cancer and surgery. In my case, I have cervical stenosis due to the removal of my cervix, thus I have had to have the opening of my uterus fixed several times in order to have a period and get pregnant.

Both times I got pregnant it was high risk and had to go on bed rest, as well as was consulted for having a cerclage. In my case, I didn't need to cerclage because I keyloid scar, so the tissue at the opening of my uterus is horribly scarred and will not dialte or open, thus maintains pregnancy.

However, from the day I found out I was pregnant I had to go for testing, ultrasounds and such, starting at about 6-8 weeks. I saw a fetal specialist weekly and had weekly ultrasounds from start to finish of my entire pregancy.

You will be prone to premmature birth, low birth weight and possible placenta previa (detaching of the placenta from the adominal wall). but if you follow doctor's orders, get monitored and be very careful, it might just happen.

Of course, there are other things to think about, like bed rest, no sex for the entire pregnancy (make sure your partner understands and is on board with that), as well as repeating testing weekly, which can disrupt your work schedule. You need to be sure you have a great support system and possibly discuss this with friends and family before you get pregnant to see if they are on board. Cause it does require a commitment on their end too, should you need bedrest, help around the house, or just moral support.

More importantly, talk to your doctor, find the right specialist and be sure they are willing to go along with you on your pregnancy plan too. Sometimes doctor's say get pregnant, but then forget that they are going to have to take on a high risk patient. Be sure your doctor gets it too and is willing to go through this with you, no matter what the outcome is. If they aren't willing,then look for someone else who is. They are out there, but few and far netween. Mine is an angel and I am thankful for his willingnees to take me on.

As for me, I experienced all of the above. I almost died during my first pregnancy, along with my son, and it took a long recovery (alomst a year) to recover. My second time around, was better, but almost lost the baby at 3 months, thus I was on bedrest for the next 3 months, until I hit the 6 month mark, all during the holidays (thank god for the Internet).

I do not tell you all this to scare you, but I just think it is unfair for a doctor to say go forth and have a baby without letting you know what all is involved. It can be very taxing on your life, family, friends and relationship, so be sure that you have the emotional and physical supports in place.

I really hope you get pregnant soon and that things go well. Please let us know how it goes !

PJ

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