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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

I figured I'd give an update to what's going on since having my trachelectomy last Wednesday. I know a lot of you have followed my story (under the thread "adenocarcinoma in situ -- cone biopsy), but for those who don't know, here's a quick recap of my situation: after 20 years of clean paps and faithful visits to the ob/gyn, I was diagnosed with high risk HPV in May 2008; I then had a colpo and cold knife cone biopsy, and in January 2009 was diagnosed with Stage Ia2/Ib1 adenocarcinoma. I am 39, have no children, and preserving fertility was/is a great concern, so I opted for a trachelectomy (cervix removal only). I had that procedure performed by a Yale gyn/onc with a laparoscopic approach last Wednesday 2/25/09.

As I was going through this whole process, I was desperate for info from someone who actually had a trachelectomy, so that's why I'm starting this thread -- to share my experience, and hopefully help someone else who may be considering this procedure. In the spirit of not making this one post extremely long, I will probably write some, and then add other stuff as I think of it. However, please feel free to ask any questions you like!! I know that there are a LOT of very personal concerns associated with this whole procedure, and if you feel more comfortable, I also don't mind if you PM me, and I will try to get back to you. I hope this doesn't turn out too boring, but I know I would have liked to know every detail of this beforehand, so here goes.

The plan for my surgery was a little different than usual, because the usual procedure is to go in and take some pelvic lymph nodes (in case my, my doc agreed to use the dye so he could identify and take the sentinel nodes, but then he also insisted on taking a few more); they send the nodes to pathology, and then if they are clear (and thankfully, mine were!), and then they proceed with removing the cervix (they take nearly all, and leave usually anywhere from 5-10mm) as well as a small portion of the vagina and the parametrial fat; usually they will send the margin to pathology to check that it is clear, and if it is they close you up, and if not, then they do a hysterectomy. I had opted to not have the hyst under any circumstance at that time, so my doc told me he wouldn't send my margin to frozen section for analysis, but would just close me up. However (and this is what took more than six hours as opposed to 2 1/2), he DID decide to send my sample down for testing, thankfully got a clean margin, but then he went back and took a little more, "just to be extra sure." He also did a cystoscopy (scope of the bladder) to make sure there were no problems there (and thankfully again, there weren't). I didn't know this ahead of time, but apparently they can't/don't always reconnect all of the nerves, blood vessels, et cetera -- BUT, he said he was able to reconnect everything for me (he was very happy to report this!!), and so he just stayed as long as he needed to, and as he said, was able to get me THE best possible result. I am so grateful!!!

The whole thing was done laparoscopically, with a DaVinci robot assist. I have four small cuts, two on each side of my pelvis, between the hip and the belly button, and one through my belly button that I can't even see. The smallest is about 10mm, and the largest is maybe an inch. The next day I developed some mild bruising around the incision sites, which were either secured with steri-strips or some other invisible/dissolvable stitches, because I didn't see anything other than the gauze and the plastic stuff they put over it to make it stick to you!

My surgery was scheduled for 7:30 a.m., and I was initially told that my surgery would last about 2 1/2 hours (it ended up being more than six!!). They did the usual set up with the IV, and after everyone involved in my care talked to me, including my surgeon, they started to wheel me towards the operating room. However, the resident (who I met for the first time that morning) upset me with some misinformation she gave me, and I started crying, so thankfully the anesthesiologist kicked in the Versed and other drugs and I was out before I made it down the hall.

I came to a little after 3:00 and thought what the heck, I must have had a hard time coming out of the anesthesia, because I had expected to be awake much earlier. Since I was frightened they would find positive lymph nodes and not be able to do the surgery, the first thing I asked was what had happened, and I was told that I did great, and that the nodes were negative. I was of course relieved, and went back to sleep. Around 4:30 they started moving me to my hospital room. At that point I wasn't in a lot of pain per se, but was very nauseous from the anesthesia, and could not even tolerate ice chips or a sip of water, although they said I could start on liquids. I actually couldn't tolerate even the ice until close to 10:00 p.m., but I had the nausea problem after anesthesia the last time as well, so it must just be me.

As soon as you come around, they put these "boots" on your legs, which go from the knees down to your ankles, and which inflate and deflate, to keep your circulation going. They actually felt pretty good, kind of like a little calf massage, but the constant buzzing of the machine was annoying!! They also make you sit up and dangle your legs over the bed within a few hours (for me, 8:00 pm), and I actually felt good enough to try standing up, which I did for just a few minutes.

I was told that they had Toradol going in my IV from the time I came to until a few hours later, but I asked them to stop it since I suffer from migraines and tend to get rebound headaches from Toradol (I didn't remember to tell them this beforehand, since I didn't know what they were giving me for pain beforehand -- if you have any issues like this, I would definitely let them know ahead of time. Yes, they ask if you have any allergies, but anyway, I goofed on this one). I also had a terrible migraine at that point, and they let me take an imitrex to get rid of it (I had a migraine going into surgery, and woke up with one as well).

At that point, my biggest problem -- and it was considerable, although definitely manageable -- was gas pain/pressure, which settled right under both ribs. It literally felt like someone was ripping my ribs apart. I found that I actually got some relief from putting the bed upright, as opposed to laying down flat, although I was in and out of sleep all night, mostly due to my discomfort from the pressure. Where you would expect pain, I didn't have that much! I did have a little wheezing and coughing, and was terrified that I'd rip apart my insides every time I coughed (they tell you to put a pillow over your belly to help, but I didn't find it did anything). You also have to suck this little machine that measures how deeply you breathe, because they want to make sure you don't develop pneumonia. They said do it ten times per hour, and I made sure to do it!

When the night nurse saw that I was channel surfing at 2:00 a.m. and was concerned that I wasn't sleeping, she gave me both a sleeping pill and something for the gas pain. She also gave me this abdominal binder thingy, which is kind of like an elastic corset. I had it on about 10 minutes, then undid the velcro and took it off. I had enough pressure going on, and the last thing I wanted was that thing on me! She said some people feel more secure with it on, as some people feel like their insides are falling out (although she also said most patients were hyst patients, not trach patients). Anyway, I didn't like it!!

I woke up around 6:30a.m., and they told me I could go to liquid diet, but I didn't feel like eating. Shortly after that they said I could go to a full diet, but again, I wasn't much interested, although I did eat a little oatmeal and some banana (later I had an italian ice!). The pressure feeling just made me not want to put anything more into me!!! I almost forgot the "best" part, the lovely catheter....while I was glad not to have to get up to go to the bathroom, the feeling that there was something in there was most annoying (and I still have the thing right now, although it should be coming out tomorrow, hopefully!!). Late in the morning I was told I could go home if I wanted to, although I must admit I seriously considered asking to stay another day, mostly because of the gas pain. I talked with my nurse, who asked why I didn't ask for something for the pain, and promptly came back with some percocet and motrin for me! In anticipation of leaving, I also sat up and then stood, and started feeling better once I was totally upright, so I decided I felt well enough to go home.

They sent me home with scripts for percocet (which I have not had to take yet!!), 800mg motrin (which I took every six hours for the first two days, and at this point am only taking 2X a day, if that) and Mylecon (although insurance wouldn't pay for it and we had to buy it over the counter). I was lucky to have my cousin be able to stay with me for the first couple nights, and if you are having this done, you will definitely need help! Especially with the catheter, which I constantly felt like I was going to pull out, bending over to get off my shoes was problematic, and in general I just felt better having someone there to help me with stuff. When choosing clothes to go to/from the hospital, definitely take slip on shoes (no sneakers like silly me!!) and definitely loose pajama pants with no real waistband. They sent me home with the big catheter bag that hangs, and a leg one that is much smaller but straps to your leg so you can move around. I had heard beforehand that boy shorts are a great underwear choice when you are dealing with a catheter, and I am so glad I took that advice! I bought a few pairs, a size bigger than normal so that they're nice and loose, and they are working out great with this catheter. Look for cotton ones so a pad will stick nicely to it (although I have only had to use pantyliners, and am not really having more than a tiny amount of discharge, and only once or twice had a little blood-tinged discharge). I also choose ones that are smooth on top rather than a real waistband, so they are not pinching/rubbing against the small incisions on my belly.

So for now I'm going to leave you all with this: I had the big bag cath the first night, and upon sitting down when I got home, one of my cats immediately went for the tube and tried to chew on it, I kid you by the next morning, I opted to change to the leg one!!

I have my one week follow up tomorrow, and am hoping they will have my final pathology report, although I doubt it'll be ready yet. My doc told me everything is fine, but of course we need to have the final while I am 99% relieved, I am still afraid that final pathology will find something, as unlikely as that is. The best part of this whole procedure was having my family come into my recovery room and tell me how happy my doc was that I had such a good result, and that everything came back clean! Now I want to see it in black and white on the final report....

More updates as I have the energy....

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