Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by trach8008 on Sat Aug 25, 2012 04:15 PM
Hey. I’m new on this board and am here to share my trachelectomy story. In 2010 I started getting abnormal pap smear results from the doc who was my gyno at the time. She kept performing colposcopies and the results would always come back as ‘normal’. I didn’t have any symptoms apart from intense fatigue that got worse into 2011. In the summer of 2011 my boyfriend and I moved to a new area of LA. LA is huge and I didn’t want to have to shlep all the way to Beverly Hills to see my old gyno so I got a recommendation in Pasadena to find a new one. Thank goodness I did. The first pap smear with my new gyno came back as ‘abnormal’ and Dr. Jenni Park suggested we do a colposcopy (no big surprise there.) However - unlike the last two years of colposcopy results - this time, after Dr. Park performed the biopsy, my results came back with adenocarcinoma in situ. Dr. Park said I would need a conization and maybe even a hysterectomy and referred me to Dr. Paul Lin at City of Hope. That was, without a doubt, the worst day of my life.
Dr. Lin was lovely and performed the cone about a week later. However, the pathology report came back saying they’d found that the invasion was 7mm by 20mm - too big to successfully take out by cone. The staging was IBI. I had a total meltdown in Dr. L’s office (which he assured me was a perfectly reasonable thing to do). When I calmed down he said I could choose between having an instant hysterectomy (no thanks) or he could refer to me to Dr. Lynda Roman to see if I would be a candidate for a trachelectomy (yes please). Dr. Roman learnt her technique in Montreal and the Dr. there learnt it from the original guy who pioneered it in Paris. Another reason to love the French.
After a bunch of tests and much hand wringing it turned out I was a viable candidate. Dr. Roman was training up her associate Dr. Annie Yessaian so in the end it was Dr. Yessaian who was scheduled to perform the surgery with Dr. Roman assisting her. I was scheduled to have it done at the Huntington Hospital, lapscopically inside this amazing robot machine. Dr. Yessian warned me before going in that she would be performing a lyphadectomy and if there was even a trace of any cancer in my lymph nodes she would be giving me a hysterectomy. Gulp. The surgery took 10 hours. They had a pathologist examine the lymph nodes visually when I was under. They all came back clear and Dr. Y was able to perform the trach. During the trach she put in an abdominal cerclage which will stay in forever.
Not to scare anyone - but for me, recovery was a little rough. During the surgery they put in stints to keep my ureta open and they caused me some pain during recovery. I could barely walk till I got them taken out two weeks later. The first night I got some blood clots in area and wasn’t able to urinate. However they flushed me through and all was ok after that. After the surgery I was fitted with a catheter. The catheter bothered me from the start and a few days after I left hospital I got an infection. I was readmitted with low potassium levels, and pretty bad anemia. They were considering a blood transfusion but I pulled through and a couple of days later they removed the stints and I left the hospital again. Again - this is not everyone’s experience. Some women are up and cooking dinner two days after surgery.
So after I was discharged a second time I started to make a good recovery and a couple of weeks later I wasn’t anemic anymore. After 6 weeks I went back to work and felt better than I had in a long time. Really happy and full of energy. My first follow up appointment showed that the second chemical test they did on the lymph nodes showed there was definitely no cancer in the system so no radiation would be needed. So happy. My first period was only a couple of weeks late and coincided with my next checkup. Dr. Y gave my boyfriend and I the all clear to start trying for a baby that very day. So I was given the all-clear to start trying to conceive 6 weeks after my surgery. My boyfriend and I decided to go for it straight away. I’m 35 which isn’t old but isn’t particularly young either and we were just terrified the cancer was going to come back and take away our chance. The first month of trying my boyfriend was working a gig and we didn’t have a chance to erm ‘connect’. The second month he had to leave town just when I was ovulating but 3 and 4 days before ovulation we had sex every 12 hours and that was the month I got pregnant. Two weeks and two pink lines later…best day of my life.
I called Dr. Y who was over the moon for me. She told me no sex for the duration of the pregnancy and that I would be going on bed rest at around 20 weeks. She referred me to a high-risk OB, the wonderful Dr. J, who I’ve been seeing ever since. He also says no sex, though climax is ok with him as long as it doesn’t make me feel crampy. He has said no exercise - walking and gentle yoga are ok, though no hiking. Also no bearing down (no pushing the poop out when constipated). He thinks bed rest will not be necessary as he says there’s no evidence it helps women. He says the risk for me is more from infection as I don’t have the cervical mucous plug that prevents germs getting up there. He says the risk is that bacteria gets in and eats away at the membrane sac which then can burst prematurely.
Currently I’m just over 13 weeks pregnant. So far it’s been a text book pregnancy.
At 18 weeks I’ll be seeing a perinatologist and I guess he’ll be getting the final say on the bed rest issue. The baby will be born by c-section. If I go full-term Dr. J will deliver the baby at 38 weeks. He says if I can get to 32 weeks, with the excellent neonatal care at the Huntington, the baby should suffer no long-term health issues. So, everything crossed. I’ll keep you all updated as to how it goes. I’m taking plenty of rest, trying to think positive thoughts and taking each day at a time. Good luck to all of you and I hope my story helps anyone going through this. Feel free to ask me any questions.
by kfoster on Mon Jan 07, 2013 09:31 PM
How is everything going ? I'm also 35 and 2 years ago had the trachelectomy, I'm wanting another child but am woried about the process.
by trach8008 on Mon Jan 07, 2013 10:15 PM
Hey! Well I can report that I'll be hitting 33 weeks of pregnancy this Friday and everything is still going with no hitch. I did have a placenta previa at the beginning of the second trimester that corrected itself. The previa caused one bleed out at around 14 weeks that was terrifying (I thought I was losing the baby) but everything turned out to be just fine. Other than that it has been an unremarkable pregnancy. I've been getting lots of scans that all say the same thing: the cervix above the stitch is still closed and the cervix is still measuring around 2cm.
I wasn't put on bed rest but the last couple of weeks I started working from home instead of going into the office. My OB decided it would be a good idea as precaution. I'll work from home up until a week before the c-section when I'll start my maternity leave. I've been having quite a few braxton hicks contractions the past week. I think this may have had more to do with a couple of high altitude trips we took (opps - didn't realize this was a bad idea till I googled it after the fact!) and less to do with potentially going into premature labor. But if premature labor does come, as I've already hit the 32 week mark, it's not ideal, but the baby should be ok.
She's very active in the womb. Weighs 4 and a half pounds already and is measuring on target.
So in a nutshell everything has been very normal. I've been getting paps every 3 months which have been clear. I've also been receiving weekly progesterone shots - a drug called Makena - which is supposed to prevent early labor.
Let me know if you have any questions at all.
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