One patient with glioblastoma still alive nine years later
by Trach1 on Wed Jan 07, 2009 12:00 AM
by herenow on Thu Jan 08, 2009 12:00 AM
I don't know if other women on the board have had the surgery you had. I sure somebody does answer your questions. If not, are there other forum boards specifically for women who have undergone a trachelectomy? I'm wondering if Jo's Trust would be a good place to look if nobody gets back to you here.
From what I have read, you will require a cervical stitch and more than likely bedrest. The child will also be delivered via ceasarian. A friend of one of my closest friends got pregnant after a trachelectomy, years ago, and did deliver a healthy baby boy, this way. Unfortunately, I didn't know her well enough, and my friend lost contact with her. I wish I knew where she was because I'd love to put her in contact with you, so she could tell you what to expect during pregnancy. At the time, I had never heard of that surgery, and didn't even know it was called a trachelectomy. I was just so happy her doctor had made sure she could still have a baby.
If your doctor isn't giving you helpful information, though, please don't hesitate to get a different doctor. You deserve only the best, caring doctor who wants you to have all the information you need to prepare you.
by somer on Fri Jan 09, 2009 12:00 AM
by chemiszt24 on Fri Jan 09, 2009 12:00 AM
Both of you ladies may want to check out the GYN Girls group on Yahoo. Several of the women in that group have had the same surgery and some have had even more extensive surgeries.. they would likely be able to answer more of your questions about recovery and life after surgery..
by DCgirl on Fri Jan 16, 2009 12:00 AM
I am that same situation. I had the surgery in September 2007. We are trying to conceive now. My oncologist put the stitch in place during my surgery, so double-check if your doctor did the same. If not, you'll need to get it put in. My gyno said that if I needed the stitch, it would require another surgery, so definitely check. Pregnancies after this surgery are considered high risk, though from what I have found, most of the pregnancies go pretty smoothly. You will definitely have a c-section and most likely will have it early - big babies can cause real problems because you just don't have a lot of cervix left. You'll want to make sure you are scheduled to deliver at a hospital who has at least a level IV NICU just in case. The only real problems that have been brought up to me are: (1) reccurance of the cancer (highly unlikely), (2) trouble trying to conceive - scar tissue, etc., and (3) possible bed rest during 2nd and/or 3rd trimesters. Also, if you are having trouble conceiving, you have to be careful with what you try IVF-wise. You cannot carry multiples, so you and your doctor really need to discuss what your options are. If you have an oncologist and a gyno, like me, then you want to work with them both to keep them informed of what is happening.
Pregnancies do occur, which is why they do the surgery. There isn't a lot of research out there, but there is some. Most people who have tried to get pregnant after this surgery have been successful, so keep your hopes up!
by Trach1 on Wed Jan 21, 2009 12:00 AM
by somer on Wed Jan 28, 2009 12:00 AM
You are so lucky!!! It has been 9 months for me and I still haven't had a period! I never realy thought it would be something I missed, but it is. My onco, gyno, and reproductive endo all think I'm ovulating and that everything is working correctly. They think I have some scarring that is covering the opening and it just can't get out. I had another day procedure to try and remove it about a month ago. I hope it comes soon!
My onco also said wait about a year to try, but my gyno (who was in the room with us during the conversation) said 6 months is enough time. I was also told by a perinatalogist (dr for high risk pregnancies) that bed rest would probably be involved. She also said if you're not pregnant after 3 months of trying on your own, to see an infertility specialist for IUI. She also warned that multiples would be out of the question.
I am so glad you are both on this site! I have felt so alone about this. I'm in Houston in one of the largest medical centers and even my doctors don't know what to tell me sometimes!
by tubleweed on Fri Mar 06, 2009 12:00 AM
Bar32, DCgirl, Somer,
I spotted your messages and just wanted to tell you there is hope.
My wife had a radical trachelectomy in Dec. '06 and we are now expecting. We conceived spontaneously.
She is at 34 weeks and doing well. She's not on bedrest is still working and looks great. 4 Weks to go! Wish us luck ad good luck to all of you.
by nrbsun on Thu Apr 02, 2009 12:00 AM
I am so glad that I found this site and all of these posts. I was just diagnosed with Stage 1B1 cervical cancer in March. I have never had an abnormal pap, irregular periods or any symptoms. I am scheduled for a radical tracelectomy in two weeks. I am nervous but I feel fortunate that I have the possibility of having children. I just got married last June and my husband and I were just beginning to start trying to have children when we got the diagnosis. It has been an emotional roller coaster.
Do you mind if I ask you how your surgery went? How long were you in the hospital? Was the recovery long and painful? Thank you all for sharing your stories.
by DCgirl on Tue Apr 07, 2009 12:00 AM
My surgery went well, with the exception of a couple of nicks to my urethrea, which is not uncommon. Small parts, very close together...I had a cathedar for an extra 2-3 weeks. You will have pain - take the drugs. They cut through several layers of muscle, so doing everything from laughing to walking will hurt for a while. Putting a pillow on your stomach with a little pressure will help alleviate some of the pain - especially when you laugh or sneeze. The nurses will want you up and walking in a couple of days. It sucks, but you gotta do it. Remember to breathe in through your nose and out through your mouth - big deep breaths - it will help with the pain. Let people do things for you. I had about 4 weeks at home when I needed help. The last two weeks, not so much except for lifting heavy stuff. Get yourself a one step stool to put next to your bed - trust me, it is so helpful when getting in and out of bed. It is a lifesaver! Also - it may help if you have something to sit on in the shower.
I'm not going to lie and tell you it is easy. It is not, but it is totally worth it. Just make sure you have friends or family to rely on during your recovery. Be honest with your doctor about pain. And remember that if you push yourself too hard on a day you feel good, you'll be setting yourself backwards in recovery 2-3 days. Take it easy and remember that, in the end, it is worth it! Good luck and keep me posted!!
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