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Cervical Cancer at early stage but a young age... Now what do I do?

jmnagy's picture
jmnagy
Posts: 7
Joined: Sep 2008

Since May I feel like my life has been turned upside down. In May I had a stroke but I am okay. In July when I went for my annual exam I learned I had a bad pap and pelvic exam. What a shocker to a 32 female. I have been one that has gotten my yearly exams faithfully and now this news. In August I had a colposcopy and coinization done. I then learned it was Stage 1A1 cervical cancer. Today I learned what my options are...
Hysterectomy or radical trachelectomy. Wow thats news for a newly married (2 years) wanting to have children young woman. What do I do? What do I choose? I know deep down If I get the hysterectomy they should be able to remove all of the cancer and i can breathe, but I will lose my chance of having children. The Trachelectomy is new and gives young women the chance to still carry a baby but you never know if the cancer is growing or will be back. I am very scared, angry, sad and mad! What do I choose to do and how do I make this decision. I wish I could speak to someone who has had to make this decision just to give me their thoughts.

Juliagrace
Posts: 2
Joined: Nov 2004

Hi There,

A few years ago I was faced with the exact same choice you now have to make. I decided to have the radical trachelectomy. It's not an easy decision and you have to make the choice you're most comfortable with. I can tell you that my surgery went very well. I recovered quickly and have had zero issues.

It's still a pretty unusualy procedure so do some research and ask your doctor a lot of questions to help you with your decision. Even though I pretty much made my decision right away, I looked at all kinds of articles and made notes to go over with my doctor. Also, my understanding is that recurrence rates don't really differ, but your medical team are the ones to talk to all that. There just aren't that many people who've had trachelectomies so it's not like you can ask a bunch of people!

If you have any questions, just let me know. I think I still have all my articles.

sbreev
Posts: 4
Joined: Sep 2008

Hi! I am so excited to have found you both! I had my trachelectomy this past May. As you stated, there are so few of us out there. I'm 30 years old, in a serious relationship, and no kids yet. My surgery and recovery went well, but I still have a few questions. I just want to know if what I'm experiencing is normal. Please let me know if you would like to correspond. Thanks!

noluck
Posts: 4
Joined: Aug 2011

hello,

could you please tell me did you have radical vaginal trachelectomy or abdominal? who is the best surgeon?

thanks so much!!!

noluck
Posts: 4
Joined: Aug 2011

hello,

could you please tell me did you have radical vaginal trachelectomy or abdominal? who is the best surgeon?

thanks so much!!!

noluck
Posts: 4
Joined: Aug 2011

hello,

could you please tell me did you have radical vaginal trachelectomy or abdominal? who is the best surgeon?

thanks so much!!!

noluck
Posts: 4
Joined: Aug 2011

hello,

could you please tell me did you have radical vaginal trachelectomy or abdominal? who is the best surgeon?

thanks so much!!!

jmnagy's picture
jmnagy
Posts: 7
Joined: Sep 2008

Thanks for your feedback. I would love to see any articles you have or if you can recommend any websites for me to learn more. Have you had a baby since? I guess I am scared to make this decision because I dont want the cancer to come back.
Any questions you can offer for me would be great. I feel alone on this one and your the first person who has given me some feedback of this option. Jennifer

Juliagrace
Posts: 2
Joined: Nov 2004

Hi Jennifer,

I haven't had a baby since the surgery, but that's for personal not physical reasons. I'm sure my doctors would love me to try!

There are never any 100% guarantees when it comes to cancer, but the good news is that yours was caught early and is treatable. Everyone has fears about it coming back.

When do you need to make your decision? I'm traveling, but when I get back I'll be glad to dig up my "cancer" file and pull out those articles. Most of my questions were about recovery time, side effects, follow up treatment, the specifics of the surgery itself, etc. Like I said, my surgery went very well, but it is major surgery. I didn't have any problems.

Afterwards, they followed up with me every 3 months for 2 years and then we went to 6 months. It takes a while to heal up so the first trips back to the doctor required follow up tests just to be on the safe side. After my 5 year anniversary, it will be once a year.

Julia

jmnagy's picture
jmnagy
Posts: 7
Joined: Sep 2008

Julia

I would love your articles or any input. They wont do any surgery on me for another 6 weeks. They need me to heal from the coinization that happened in August. So I hope to make a decision in the next few weeks. I meet with a high risk obgyn on Monday to get some clarity on if its even possible for me to carry a baby since I also had a stoke in May. I would love to provide you my address but would rather do that offline. What would be the best way for me to get you this information. Thanks for responding and travel safe.

To our new friend,
Any advise you have out there or want to share would be very much appreciated especially since you just went thru this in May. How did you make your decision? Can I ask what your experience has been?

jeaniefrances
Posts: 4
Joined: Dec 2008

My daughter in law lost her first baby due to the fact the leep cone had weakened her cervix, the baby was perfect but her cervix would not hold her. The second time the GYN sewed her cervix shut early on but still she had problems, the baby was born weighing 1 1/2 lbs. She is now 4 years old and just the cutest little thing, and very smart. It is high risk thinning a cervix if you want to carry a full term baby, preemies cost lots and lots of money and then they still might not turn out right.

sbreev
Posts: 4
Joined: Sep 2008

I am lucky enough to live in Houston and referred myself to MD Anderson Cancer Center. Even though they are the best at what they do, I was still only the 22nd patient to have a radical abdominal trachelectomy there. The decision wasn't hard for me. There was no way I was having an unnecessary hysterectomy. I still want to have children. The trach seemed to be my only option. I needed to get rid of cancer, but still keep important child-bearing organs! This was my fisrt surgery ever, so it was really scary. I completely understand how alone you are feeling. I didn't have anyone to talk to about what I was going to do. I still feel alone. My surgery was successful; the cancer is gone, but I still have so many questions that no one seems to be able to answer. My doctor is great, but sometimes I feel like she's trying to figure this all out too since the procedure is relatively new. The only info I had was my research from the internet and an article she gave me. I hope this helps some. Please let me know if you have any specific questions.

jmnagy's picture
jmnagy
Posts: 7
Joined: Sep 2008

Thank you all for your feedback. I have done lots of reading and lots of soul searching on this. Plus I have asked my doctors a ton of questions. Most recently I talked with a high risk obgyn and was provided all the risks of having a baby. Not only because of the cervical cancer but that I also had a stroke in May. I have lots to consider and right now I feel my best decision is to move forward with a robotic laprascopic hysterectomy. Which I will have done in November. I want this cancer gone and I dont want to put a child at risk for me. I am thankful I have the love and support of my family and friends. I am also glad I had the chance to learn from you and your experiences. But this time I feel that this is whats right for me. I hope to keep in touch and share how it went. Thank you for you kind words and the information you have shared. Jennifer

sbreev
Posts: 4
Joined: Sep 2008

Julia,

I've been searching for someone to talk to about my experience since surgery. Would you mind email corresponding with me about your recovery?

Thanks,
Somer

Jennifer,

Good luck with everything!

indigo9
Posts: 3
Joined: Dec 2008

I'm 23 and was just diagnosed with 1a1 as well. I'm not interested in having children, but I think I'll be opting for the trachelectomy in hopes of minimal side effects. From what I've read, it is supposed to be a safe choice for early stages like we have, when there's no reason to believe the uterus has been affected. But it is definitely not an easy decision.

I'd be very interested to hear how recovery has gone for those of you who've already gone through it. I'll be having some lymph nodes removed as well since mine is adenocarcinoma, so of course worried about possible lymphedema. Glad to hear exercise might help with that.

sbreev
Posts: 4
Joined: Sep 2008

It sounds like you and I have had similar experiences. I was first diagnosed with an adenocarcinoma and had a LEEP cone to remove some of my cervix. It was in tht pathology report that the invasive cancer cells were found. I had a trachelectomy at the end of May. They also removed a few lymph nodes for testing, and thankfully, the results were clear. This was the first major surgery I have ever had. They did it abdominally. My scar is right at my bikini line and has healed nicely. I was in the hospital for 4 days and home from work for 6 weeks. The first few weeks were tough, just because I was uncomfortable and I had a catheter. My parents and boyfriend were great at taking care of me. My advice is to take it slow and take the entire six weeks to rest. I did have a few complications. My bladder had a tought time and I failed my first void test. The catheter had to stay in for close to 2 weeks. That sucked! It made me nervous too. I thought it would never go back to normal, but it did in time. I also, even now, have not had a period. It's been 8 months. I just recently had an out-patient procedure to remove some scar tissue. Hopefully, it will correct the problem. Other than that, every thing else has been okay. I've had 2 pap smears and both were clear! Please let me know if you have any specific questions. Good luck with everything!

Somer

jmnagy's picture
jmnagy
Posts: 7
Joined: Sep 2008

Well its December 21 a few days before Christmas and I feel good. I decided to do the hysterectomy to remove the the cancer. At the age of 32 it was the hardest decision to make but I needed to know the cancer was out of me. My body has healed pretty good. They did a laproscopic robotic surgery and I went home from the hospital in 24 hours. I had one complication about 2 weeks post surgery. I was bleeding but I went back to the hospital and it was scar tissue that had released. It scared me but now I am taking it easy. I think its important to listen to the doc's even though you feel okay. Your body needs to heal and so do you mentally. I also think its important to talk thru this with someone. You cant do this alone and you need emotional support all around you. Thanks to all of you that have written. I feel good and I return to work tomorrow. 6 weeks off not so bad.

indigo9
Posts: 3
Joined: Dec 2008

Thank you for posting that update, Jennifer! So glad to hear your recovery has gone (mostly) well. Home after 24 hours-- that is awesome! The hospital I go to performs robotic procedures too, so maybe I'll be feeling as well as you do six weeks later. :)

The reminder to not overdo it is a good one. After my cone biopsy, as soon as I felt okay I almost forgot it even happened. I ended up moving around/lifting/etc too much... that was a mistake! I'll definitely try to remember that after my next procedure.

Anyway, thanks again for the update. So glad to hear you're feeling better, especially in time for the holidays. Best wishes to you.

jmnagy's picture
jmnagy
Posts: 7
Joined: Sep 2008

All,
I think it has been great being able to connect online and communicate with you all about my experience and learning about yours. Its now December 29 and I am happy to report I am all clear. So much of this is because I got the information I needed, I talked with great doctors and I have the love and support of family and Friends. But most of all I kept a positive attitude. All I can say is a positive attitude will help you get thru these down times. Believe me I wanted to cry and be sad and there are still times but what I learned is life is precious and I am happy to be alive and healthy! Good luck to you all and Happy 2009!

foreversha
Posts: 1
Joined: Jul 2011

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