Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by skigirl95 on Sun Feb 21, 2010 12:35 AM
I was diagnosed with Stage 1B cervical cancer and my dr. recommends a radical trachelectomy as I am 33 and have been trying to have a baby and won't consider options that do not allow this possibiity. My concern is that there are side effects of the trachelectomy and I am embarassed to ask my doctor. Like, if you don't have a cervix, you don't produce cervical mucus, right? meaning, sex hurts and sperm doesn't have good traveling fluid. And, does it feel different? Are tampons going to hurt, what is it like to have a catheter in and how long does it have to stay in? Any help would be appreciated. Thank you
by tkrajcar on Mon Feb 22, 2010 11:30 PM
I am 34 year old diagnosed with stage 1A cerival cancer. I had a radical trachelectomy on Feb 11. I haven't asked the surgeon about any side effects with regards to sex because my mom was with me when I went for my initial appointment. I have to admit having a catheter is awful. I had my catheter remove last Tues and am now having issues urinating and have some blood in my urine. I might have to self-catheterize which I am not looking forward to. I hope that things go well with you. I still think that this option is obviously better than a hysterectomy or radiation but it is not easy. When are you getting it done and where?
by skigirl95 on Mon Feb 22, 2010 11:59 PM
Hi! Thank you for responding. I am going for a second opinion at MD Anderson in Houston. I live in San Antonio and am in the Army so I got my initial stuff done here at Brook Army Medical Center, one of the best for the military. Thank God!!! Depending on what my second opinion says, I will probably go with whoever recommends the least invasive. My Gyn/oncologist here says I am barely 1B. I honestly will go to whichever dr, I feel most comfortable with and if one can offer a fertility expert to be present or consult with prior, I will go that route. My referral for the second opinion got processed on Friday so I have to wait a few days to schedule my appointment. My surgery will be sometime in March regardless.
I will ask my dr the next time I see him about the sex questions. I was initially pretty scared and shocked and didn't have a list when I was there. Now I do, and will ask or my husband will.
Would have having the catheter in longer have helped? I don't know about the self catheter thing. That is one of the things I am scared about. I can deal with stomach pain and going under, but I can't even look at my own blood being drawn.
Thank you so much for responding!!!
by mobilis on Tue Feb 23, 2010 09:42 AM
Are you having a vaginal or abdominal trachelectomy? I had an abdominal trachelectomy, as I had a larger size tumour. The catheter was seriously a non-issue. I had two - one "normal", and one punched through the front of the pelvis into the bladder. Both were out before I went home from hospital and I've never had any bladder problems.
Recovery took a few weeks, mainly because of the abdominal incision, but I was walking around normally within a week, working from home after two weeks and back in the office after 3 weeks.
A lack of cervical mucus might be a barrier to sperm, and you might need artificial insemination, but I know several women who have conceived naturally after a trachelectomy. Lubrication shouldn't be an issue, as your vaginal secretions are not affected. Sex doesn't seem different to me - there are others who may not agree.
by skigirl95 on Tue Feb 23, 2010 11:08 PM
As of now, I am doing the abdominal. My gyn/oncologist here says he is not familiar doing it the other way or not as comfortable. I had a lap done last year for a cyst and I was walking around in a few days and didn't stay in the hospital. I really don't want to stay overnight, but it looks like going home is not an option.I recovered pretty well since I am pretty fit, although not feeling too fit now.
Thank you for replying about the mucus/ sex question. You don't realize how much those things are part of you until you think about losing them.
I am still hoping for a miracle on my second opinion. But at least you all have made me worry less. Thank you!
by mobilis on Wed Feb 24, 2010 08:18 AM
I want to be honest with you - an abdominal trachelectomy is quite a big deal. Laparoscopic and vaginal trachelectomies seem to be far less invasive.
I needed 3 units of blood (over and above 1.5 litres of my own blood which was recovered, "washed" and returned) and woke up in ICU with my 2 catheters, a drip in each arm, an epidural drip and a drip in the jugular vein in my neck. I spent 2 days in ICU and another 3 in hospital. I even spent the night before the surgery in hospital as I had a CT scan and cystoscopy (under general anaesthetic) on the evening before. My situation might have been slightly different because I had recently given birth, so the whole cervix/uterus and surrounding area might have been more vascularised than normal, and also because my tumour was on the large side of what my surgeon is comfortable with for a trach.
So even if you have an easier time of it, I wouldn't count on being able to go home the same day, or even the next day. Be prepared for fairly major surgery. I don't want to be discouraging though - I recovered quickly after the first few days and within a few weeks I was entirely back to normal. I've felt absolutely fine ever since and all my follow ups have been clear. I'm also 18 weeks pregnant, and everything has gone very smoothly so far.
As far as sex goes, be aware that the vagina is somewhat shortened by the trach, which may or may not make a difference to you or your partner during sex.
If you're planning to get pregnant later, check with your gyn/oncologist whether he'll put in a cerclage at the same time or if you'll have to have one later. Also ask him if he will be able to retain a portion of cervix if he can do so without compromising on clear margins. I don't have any cervix left, but of all the women I know who have had successful pregnancies (or are currently pregnant), the majority have at least some cervix left - up to 1cm. That also helps with the cervical mucus issue.
by ljlj1 on Wed Feb 24, 2010 11:47 AM
hi skigirl, hi everyone!
i just had a trachelectomy done a week ago for adeno cc recurrence. as i had 2 large cones done and my pelvic lymphnodes removed a year ago to tackle my then 1a2 adeno cc, my gynonc was able to perform the trach vaginally and no aditional nodes were taken. but as it was adeno cc recurrence he wanted to be on the safe side and, like in mobilis' case, i now have NO cervix left. a transvaginal cerclage was put in during surgery but my gynonc told me that should i fall pregnant he recommends a transabdominal cerclage (TAC) AND early total cervical occlusion (ETCO) around week 9 of pregnancy. sounds a lot to me. that would mean i would then altogether have two different kinds of cerclages (trans-vaginal and trans-abdominal) and the ETCO. well, will cross that bridge when i get there...should concentrate on recovery for now...
skigirl, as i am not a 'typical' trachelectomy case and it was done vaginally, i don't know if i can be of much help. but i spent 5 days in hospital, had a catheter in for 3 days post op which did not hurt at all. except for the first day i was in no real pain and moving around by day 1 post-op. i have to say that my laparoscopic lypmh node removal a year ago hurt much more but then that was due to the abdominal incisions. recovery then took about 4 weeks, 6 until i was back at work. 12 weeks until i felt kind of normal again.
mobilis, congratulations on your pregancy! please keep us posted! i wish you all the best in the world.
by skigirl95 on Thu Feb 25, 2010 02:43 AM
Thank you all for your replies! You have given me a lot to talk to my dr about before my surgery. I am a little scared and nervous, but at least I know way more now than I did last week. And, I am so glad to here about your pregnancy. I was devestated by an early m/c before this diagnosis and am eager to get well to start trying again!! Thank you so much!
by tkrajcar on Thu Feb 25, 2010 04:19 PM
I also had a vaginal trach and lymph node dissection which I agree is the worst part of the surgery. I had the catheter in for 5 days post op and had a bit of trouble voiding after it was removed but now 14 days post op I feel much much better, almost as good as new. I agree that the worst part of the surgery was the lymph node dissection. I went home from the hospital the same day but that is largely due to Canadian Health care which is universal and free so they only keep you in the hospital for if there are complications.
My concern now is how the surgey will affect my sex life. I have a shortened vagina so if my partner is long will that make sex painful? I would love to have some feedback from people on this topic.
by lin30 on Wed Mar 10, 2010 09:36 PM
I had a radical trachelectomy on April 23, 2007 in Quebec City. My lymph nodes, the top of my vagina and most of my cervix were removed. I spent one day in the hospital before my surgery and four days after my operation. It was a tough recovery in the hospital, but I expected it because it was a major surgery. Because it was done laproscopically, I only had four tiny incisions and now only have two barely visible scars.
Only the earliest stages of cervical cancer are even eligible for rad. trac. It was a very terrifying choice to have to make. I had to choose between the trac and a radical hysterectomy. Like you, I wanted to have more children, or at least have a chance, but I was worried about my health too. This was still cancer and it can be very dangerous if it progresses. The thing that finally made me decide was that the pathologist was going to be in the operating room to check the margins of the cervix. If the margins were cancer free then I would be fine, but if there were any cells in the margins the doctor would have went ahead and taken everything out.
I had a cathedor in place after my surgery. It can be taken out three or four days after the operation. However I had a two day drive home after the hospital. When the cathedor is removed your doctor should perform a test to see if you can void the entire contents of your bladder. If you can't , then you will have to self-cathedorize. I was worried about cathedorizing myself on the drive home, so I waited to get my doctor to remove it when I got home. Luckily I had no problems once it was out.
Once I was home in my own bed, I felt great. It's important to get lots of rest and take it easy. You won't be able to work for four to six weeks and you will need some kind of support system at home. You can't lift anything! It wasn't long before I felt back to my old self.
It is much more difficult to get pregnant after this surgery because the opening is so much smaller. However, your chances are much better than not having anything done. One of the side effects of cervical cancer is infertility. The cerlage should be placed during the surgery because you will need it if you get pregnant, and it's safer than having it put in during pregnancy.
Pregnancy isn't impossible though. I am now 15 weeks pregnant, and i didn't need any help. I had assumed that some day I would need to go through in vitro to try to get pregnant. So far everything is going very well and I am awaiting my second ultrasound.
Radical Trachelectomy was the best decision for me and it has worked out because almost three years later, I havn't had any recurrances and I'm expecting the little miracle I was waiting for. I wish you the best of luck with your surgery! Do your rescearch, find out everything you can and make sure that your doctor is experienced with the procedure. God bless!
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