Trachelectomy vs Hysterectomy

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RE: Trachelectomy vs Hysterectomy

by Jennifert on Thu May 03, 2007 12:00 AM

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hi ltk7321i wanted to wish you really good luck tomorrow and I will be sending hugs and love your way.   Jennifert

RE: Trachelectomy vs Hysterectomy

by Loriseattle on Thu May 03, 2007 12:00 AM

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Hi Jennifer, Thanks for the reply. I'm pretty well versed about the adenocarcinoma itself, having had since Decemeber 06 to frenetically research online, sometimes well into the night. I'm sure you know the feeling...so much information to absorb. I'm surprised my head hasn't spun off my shoulders yet. ;) I'm working with a great gynecologic oncologist who has provided great care and resources to-date. Trouble is, no one does a trachelectomy around here so neither my oncologist nor the fertility specialist I've met with know much about it statisically vs. the hysterectomy. Unfortunately, my own Google searches have only found a few articles about 5 year results of small studies that show about a 50% rate of pregnacy to 37 weeks and 95% 5-year free of recurrance. I had a PET/CT scan recently that showed a *possibility* of lymphatic involvement, but what they could see on the scan was too small to diagnose definitively, so they have to get in there and do the lymph node dissection to make the full determination. If I had the answer to this, would make the decision a little bit easier...if the lymph nodes are positive for cancer, it's a no-brainer to me. I would choose the hysterectomy without hesitation. However, if it hasn't spread and there's a chance to preserve fertility AND get all of the cancer, I feel like I should consider it. I have so many people around me encouraging me to do the hysterectomy, as I think they simply don't know much about the other procedure and are fearful that it won't get all of the cancer with increased incidence of recurrance (can't blame them, I suppose). It sounds like from your research, the recurrance rates are roughly the same with both procedures. Will continue with follow up calls to USC and Sloan to do some research...and will keep on the online research. If you have any specific URLs or literature recommendations, please let me know. I'm trying to create my own side-by-side comparison and these stats are the one item missing. Thanks, again... Much love and healing for us all! - Lori

RE: Trachelectomy vs Hysterectomy

by Jennifert on Wed May 09, 2007 12:00 AM

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lori- I hope you are doing well. I wanted to let you know there is a place in arizona that does the trachelectomy as well I believe.  I don't know if you have made progress on your other two choices you were looking into.  things are getting scary and crazier for me as I near my surgery- it is less than 2 weeks away and this week I am going in for a colonoscopy on friday to make sure everything is okay there because I have chrons/colitis as well so there is more of a risk of cancer developing in the colon anyway so my GI doctor is squeezing me in just to give me piece of mind becuase I am just scared that the adenocarcinoma could have jumped around.  I also met with my lawyer today to do my will- because I own a condo and wanted to have everything settled just to have it done.  that was a really strange experience.  anyway, hope things are going well with you. my next couple of weeks will be crazy so I don't know how much I will be online.  Take care- Jennifer

RE: Trachelectomy vs Hysterectomy

by Jennifert on Mon May 14, 2007 12:00 AM

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Hi ltk- I hope your surgery went well- I have been thinking about you.  My surgery is in 1 week- I hope i get to hear from you before I go in to see how you are doing.  my thoughts are with you- jennifer

RE: Trachelectomy vs Hysterectomy

by Ltk7321 on Tue May 15, 2007 12:00 AM

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Hi Jennifer (and all), I am happy to report that I had the trachelectomy and that I did not have to have the hysterectomy.  In fact, the first thing I asked when I woke up was....what did I have done?  I also just got word back yesterday that my complete pathology report came back negative and so the cancer had not spread outside the cervix.  SO that was really good news!  The folks at Sloan are great.  I spent 4 days in the hospital.  The first two days I had an epidural, that would make me feel nauseous and dizzy for about the first 15 min every time I hit the button to give myself an increased dose.  Surgery was a Friday, on Sunday morning, they took me off the epidural and onto oral pain reliveres (percocet) becasue I was able to eat solid food.  The percocet I feel was better as it didn't give me the nausea or dizzyness.  Friday, I was pretty mich out of it and didn't feel too too much pain, although it was still uncomfortable.  The day after was the worst.  Very painful, despite the pain relief, but it was tolerable pain.  They perfomed the surgery through the abdomen rather than the vagina, and when they had me sit up and sit in a chair Saturday, that was very very uncomfortable.  On Sunday I started taking small walks, very slowly and very carefully.  Be sure to get up and walk around maybe twice a day while you are in hospital, the first time you get up will be hell, but I promise you that it gets better and makes you feel better.  The first week out of the hospital I was so tired all the time.  I'd be awake for maybe 2 hours, then take a nap.  I'd get up a few times and walk around the house a little.  It made me feel better to do that.  It's amazing how much you need your stomach muscles and what you can't do without them.  Basically I can't do much.  You do learn to use your arms and shoulders and upper body to move around and what not, but it is essential that you have someone there at your house or stay with someone for a while when you get out of the hospital.  My friend has been taking care of me and it's been sucha  blessing.  I am a very independent person, but I need help in doing everything from getting dressed to taking a shower to fixing meals.  SO please make sure you have someone who you are comfortable with.  I have gone through bouts of depression but am trying to remain positive.  I know I've written a novel here so I'll stop here and post agin in a day or two.  Jennifer, if you have any questions about your upcoming suregry, please ask I would be more than happy to answer them.  I hope you (and everyone else reading this) is doing well and hanging in.  This is a very difficult time and I know that it's hell.  I fell better today physically than I did 3 days ago, emotionally, I'm not sure, still working on that.  But again, if I can share anything about my experience to help you prepare for yours please please ask. 

RE: Trachelectomy vs Hysterectomy

by Jennifert on Wed May 16, 2007 12:00 AM

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Hi- I am so happy to hear you are doing well- I was getting concerned. Were they planning on doing the surgery abdominally?  Mine they are doing vaginnally except for the nodes of course.  I hear the recovery is easier with it vaginally.  I am so glad your pathology came out well. I was praying for you.  Do you have any bladder issues?  I am worried about that? I know there is a chance they can hurt the bladder with the surgery so that scares me.  She told me I will prob only be in hosp 2 days but everything i have heard and read says 3 days is minimum and average. Were you able to wear your own PJ's in the hosp?  I went a little crazy with buying comfortable and pretty pajamas for recovery.

My surgery is Tuesday. I am Scared. Remember how you said you were surprised I found a doc in Ct to do my surgery well I talked to my doc about it and I guess i am the first to have in done in CT.  She did these in AZ at her previous hospital with a world renowned doctor. Now that she is in CT and my case presented to her she decided to do it and she is having the doc she worked with fly in with her.  Kind of exciting. 

 As for your depression, have you thought of asking your doc for an antidepressant? That could be helpful, if you are not already on one.  I am on Prozac and it is very helpful for me at this point. I still have my down days where I am overwhelemed but it does help me a lot. 

Stay in touch.,  jennifer 

RE: Trachelectomy vs Hysterectomy

by Ltk7321 on Thu May 17, 2007 12:00 AM

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Hi Jennifer, I meant to reply yesterday but was so tired that I spent most of the day asleep.  I think i may have over-exerted myself on Sunday as I am feeling a bit more pain and an more tired than I was on Saturday.  I am so happy to hear that you are having your surgery done vaginally as I also have heard that the recovery is less painful and is quicker.  How long does your doctor say it will take?  Are you working....how long of time off did she advise?  They have me not returning to work until 6/28. 

 I haven't had any bladder issues (yeah).  But my doctor did tell me about all the potential risks while doing the surgery.  I had a cathedar placed during the surgery and then had it removed about 10 days after the surgery date.  Are they having you go home with the cathedar or do they think they will take it out prior to you leaving?  Let me know as I can tell you what to expect.  From what my doctor has told me, they risks of injuring the bladder are small, but since they will be working in that area it's always a possibility so they want to be sure they tell you all the risks up front.  Did your doctor tell you of any risks with regards to the bowels?  Again, small risks but things they tell you so you are prepared. 

 I also went out and bought pretty and comfortable pj's.  I have found that louging in some nice comfortable pj pants that tie rather than elastic and camisole type tops are the best!  I found some cute ones at Kohl's and Target.  You can wear them in the hospital, I pretty much stayed in the hospital gowns myself.  Changing was uncomfortable and the gowns are so easy to slip on and off that I just stuck with those. 

I can totally relate with how you are feeling right now.  I too was so scared for days prior to the surgery and the morning I went into the hospital I had such anxiety.  They gave me a sedative prior to inserting the epidural and it worked wonders.  It really calmed me.  It was nice to have that calm as I was beign wheeled into the OR where they gave me the anesthetic that put me to sleep.    Has your doctor told you what the plans are for anesthetic? 

Please let me know how you doing and if you have more questions.  I am praying for you and keeping you in my thoughts.  Do something really fun this weekend as it may help to relieve a little bit of the anxiety and fear you are feeling.  Surround yourself with the person or people that make you feel comfortable.   Take care and please keep in touch! 

 

RE: Trachelectomy vs Hysterectomy

by Jessicag74 on Fri Jun 15, 2007 12:00 AM

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LTK, Jennifer, and others,

 Thanks for letting me share in your experiences.  I was diagnosed cervical cancer stage 1a2 about 2 weeks ago, and am now scheduled for a trachelectomy at Johns Hopkins on July 11.  It has been very helpful reading about your experience, and I will use some of your suggestions.  I have to admit, I am also getting more nervous as I read your posts.  I am 32, no kids, but desperately want to carry a pregnancy.  I think I am partly in denial, and am just so overwhlemed- my dad died of pancreatic cancer just 5 weeks ago, and it just feels like too much sometimes.  So it's good to have others who are going through the same things.  If you would continue to share your recovery experiences, I think it would be very helpful- even the pajama info was great.  When do you feel like you would/did go back to work?  I have a pretty sendentary job, but the surgery seems like a bigger deal than I expected.  Thanks, and wishing you quick recovery!

Jessica

RE: Trachelectomy vs Hysterectomy

by Jennifert on Fri Jun 15, 2007 12:00 AM

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On 5/1/2007 Loriseattle wrote:

Hi Ltk7321 and JenniferT, This is Lori in Seattle, WA. My situation mimics yours very closely...34 years old, no children, stage 1A2/1B1 (I'm on the cusp) adenocarcinoma, 3mm-4mm tumor. I have been given the overwhelming task of choosing between three surgery options this month with tentative surgery scheduled for May 23 (all with an accompanying lymph node biopsy): 1) repeat the cone biopsy that didn't get all of the tumor, 2) radical trachelectomy, or 3) radical hysterectomy with removal of one ovary. I'm so very frustrated/scared/angry/confused at the moment, as so many well-intentioned people are trying to encourage me towards the full hysterectomy and I really would like to consider the trachelectomy. However, as you've mentioned, it's not as widely known or performed so I think this scares folks. I was told about Sloan-Kettering and USC Norris Hospital in So. Cal. I'm shortly going to seek the help of a counselor to help me sort out some of the questions. My friends and family are also very supportive, but seem to see only one solution. I would VERY much like to talk with both or one of you after you've had the procedure or just with additional thoughts/insights...it's so helpful to know what it's like, how you recover, etc. and could use the solidarity of someone else who is going through this. I'm feeling a little lost at the moment because this particular situation is rather rare. I will be hoping for the best for you in each of your situations...sending happy energy and strength. - Lori

Hi Lori,  I just wanted to let you know how things are going for me- I am sorry I did not write sooner.  I am 3 1/2 weeks post op from my trachelectomy and doing okay.  They took out 24 lymph nodes, all of which were negative for cancer.  I had a cone biopsy before and they did fine some remaining cancer in the cervix during this procedure but the margins were negative enough so that they only needed to do the trachelectomy.  The recovery was really difficult. I had to go home with a cathether for 10 days and have still been having some bladder issues- a lot of pressure and difficutly emptying my bladder completely.  I have also had a lot of problems with constipation from the pain pills so I had to discontinue them after the first week and just suffer with the pain.  I hope you are doing well with whatever you decided to do and I am so sorry I didn't post sooner- i had a difficult few weeks. Jennifer

RE: Trachelectomy vs Hysterectomy

by 7352n on Mon Jun 25, 2007 12:00 AM

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I am scheduled for the trachelectomy on July 12th.  I am also 32 and my husband and I had just decided to start trying for our first baby in the fall when we found out that I had cervical cancer.  Given that I asked my gynecologist how soon we can try for a baby when she was doing my cone biopsy to deal with the abnormal PAP result, she was talking trachelectomy in the same breath she told us that I had cancer.  I didn't realize they were so hard to come by until I started googling as I was immediately referred to the only hospital in our city that does them and was scheduled for the first available surgery date.

I also want to say a huge thank you for those who shared their experiences, especially the pyjama tip... I've been wondering about that :)!  Given that I feel completely healthy this whole thing feels very surreal:  like Jessica said, it seems like a much bigger deal than it feels. 

I was told that if "all goes as planned" I will probably be ok to return to my desk job in 4 weeks and that we should start trying to get pregnant as soon as I am healed from the surgery. 

 Good luck to all with recoveries and getting pregnant! 

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