There aren't too many threads here talking about the experience of having a RVT and recovery, so I wanted to start one in case helpful for others in the future. Please do add comments below if you've had an RVT - appreciate everyone's experience will be different so it's great to learn!
My RVT (with pelvic lymphanedectomy) was 10 days ago. A few things were unexpected for me so I've shared them below. These may come across as 'bad' things so I want to headline first that overall my experience has been positive! I am recovering well, feeling like myself and thankful that there seem to be few side effects other than a slightly sore and swollen tummy and groin area. Will add another comment in a few weeks to update on longer term recovery.
The unexpected things:
- Shoulder and arm pain: When I woke up from the surgery, the first thing I noticed was extreme pain in my neck, shoulders and arms. I hadn't expected this and was worried the surgery had done some damage! The nurses were suprised when I asked them about it, so I did some Googling and apparently this is fairly common with this specifc type of surgery due to a build up of carbon dioxide (used to inflate your abdomen to help the surgeon do his/her/their bit!) and the angle your body is at. It passed over the first few days.
- Infection: I was unlucky to contract a UTI which doubled the length of my stay in hospital. The combo of pain + lots of sickness + loneliness (no visitors thanks to COVID!) did take its toll on my spirits but apparently a UTI is fairly common and nothing to worry about (even though I felt like I was on my last legs - I've never really been unwell before so it was a bit of a shock!). Had a couple of rough days but the hospital was the best place to be and antibiotics have knocked it on the head.
- Tinzaparin injections: Following the surgery the hospital put me on 28 days of injections to help prevent blood clots. I've done IVF before and was very relaxed about self-injecting, however this one hurts more so wanted to share a few suggestions I found online and seem to be working for me in case helpful. 1) numb the leg before injection OR do before getting out of bed whilst skin still warm 2) push liquid in very slowly.
Overall I am recovering well and feel thankful that for now I seem to be having few side effects. Will add another comment in a few weeks to update on longer term recovery.
Good luck to anyone going through the surgery / recovery x
I can't help too much about your procedure as I've not had one, but I did have a LLETZ under GA last week and I had exactly the same neck issue! It was so painful for almost a week. My neck felt hard and bruised and swollen, and my shoulder blades were killing. I also had a lot of problems with mucus on my chest for a few days and my throat was so sore I lost my voice. I was expecting pain down below, not up the other end!
A week in my neck is a bit better now but still tender. Hope you recover okay x
Hey! I'm having my op on Tuesday. However, I've been told that due to Covid abs baring any complications I'll be out that day. Is this normal? I'm slightly worried about it.
Im schedule for robotic radical trachelectomy and lymphadenectomy on march 3rd im scared as hell!! I was diagnosed with stage 1 A.1 cancer squamous carcinoma I had a aggressive cone biopsy my margin was my margin was clear I was referred to a gyno/oncologist. I did MRI and pet scan they both showed I may still have something either cancerous or precancerous deeper in my cervix. No spread or invasion in nearby tissues or lymph nodes..??? thank God.. I am now scheduled for robotic radical trachelectomy and lymphadenectomy on March 3rd. At first I told my doctor if we coud just do another cone but he wants to the trachelectomy to be 100% safe and cancer free and do a cerclage to preserve my fertility since I still want another baby.
The doctor wants me to take 6 weeks off from work!! how long were you in the hospital he said I will only stay over night!!! im super nervous. He said he would do sentinels lymph node biopsy just to be sure nothing spread there. mri and pet scan result it was clear I didnt want him to remove it unless its positive im scared of edema!!
Following my 10 day update, I'm at the 8-week post-surgery mark so wanted to share how the recovery experience has been for me. Headline = almost fully recovered!
Week 1 - As alluded to in my first post, the first week was harder than I expected but I suspect much of that was down to the UTI infection.
Week 2 - Movement was still limited and I needed to keep up with the pain relief, particularly at night. Wasn't able to sit for prolonged periods without pain so probably spent 75% of my time in bed. Tummy etc. still swollen. Got the great news that there was NED in the extracted tissues which was a huge relief :)
Week 3 - Stopped taking pain relief and started going for gentle (very slow!) walks up and down my street. Returned to work at ~50% capacity (I have a desk job so can WFH) - was more tired than usual and it wasn't easy to spend all my time sitting in a chair so I did work from bed for a couple of days! I picked up my 8 month old nephew (who weighs about 8kg) a few times a day, probably shouldn't have done but couldn't resist the cuddles :)
Week 4 - This is when I started to feel more back to normal with swelling etc. reducing and walking improving. By the end of the week I managed a 2 hour walk in the park with a doctor friend who didn't seem to notice anything was going on, which I took as a good sign that I was well on the road to recovery!
Week 5 - Back to work 100%, no real issues sitting and energy levels getting close to usual.
Week 6 - 3 out of my 4 incision scars were all nicely healed at this point with the surrounding tissue also back to normal. However one scar has been more challenging and has puckered. As I increased movement (e.g. a 3 hour walk on the weekend) the pain around the scar was quite intense. Otherwise, feeling good.
Week 7 - Had my examination at the start of the week, was told I am healing well and hopefully the puckered scar and area around it should improve with a bit more time. My surgeon recommended Kelo-cote to help improve the appearance of the scars, and said it would be okay to start more intense exercise e.g. jogging.
Week 8 - Am now pretty much back to normal! I do have the occassional spikes of pain in the abdominal area, particularly around the puckered scar, but nothing that interrupts normal activitiesl. The main area of change is fitness. My benchmark for fitness has always been that I can run 10km in about an hour (I'm not a runner but I do this a couple of times a year to check my cardio fitness!). However at the moment I don't even feel like I could run 2km, even walking (albeit long distances) can start to get tiring. I've gained a few kilos as a result of reduced activity levels since my diagnosis so I am definitely keen to get more active again, but appreciate I have to build up my fitness slowly and stay focused on health over appearance so it may be a while before I'm back to my 10km-benchmark!
Hope this helps, appreciate we will all have different experiences and for many of us taking this route for fertility preservation this is only one of several hurdles. I've seen a few good posts here re: post trachelectomy preganancy that are giving me hope :)
Best wishes to anyone going through the surgery / recovery x
I forgot to mention periods - think I'm having them, but the level and length of flow has changed (lighter for longer). I've only had 2 since the op, the first being only a fornight after, so I need to monitor for a few more months. The surgeon said it's not unusual for periods to be different post-surgery, the positive is that there is flow.
Hi Im also now on my 3rd weeks post trachelectomy post up!! I am feeling good.. been walking no issues... been cleaning and cooking!! I had robotic surgery my first 1 week was hard second weeks I stop taking my pain meds because it makes me more sick. Thank God I had no complications except the first week I had really bad constipation I hated it.. but got better on the second week!!! my pathology came back its all clear!! as matter lf fact the cervix that they removed was clean I guess my first surgery (cone biopsy) got the cancern out it was only 1.0mm squamous carcinoma. But both mri and pet scan result shows I may still have cancer deeper in the cervix but pathology result it was only chronic inflammation. I guess its better to be safe and sorry. Doc said its good preventative anyways for the cancer not to comeback plus He put a cerclage already so we can try to have a baby in 6 months!! I will be back to work in after 6 weeks post up!!! 3rd only and im feeling really good all incision is healed but I still feel pressure in my abdomen every now and then!! but all in all got really lucky!!
Following my 8-week post-surgery update, thought I'd share a 4 month update. Headline - mostly back to normal. A few things to note:
- My periods have definitely changed. They've gone from 2-3 days of heavy flow to 7 days of spotting followed by 1-3 days of light/medium flow. The positive is that they are coming.
- My vagina is sorer and 'raw-er' than it used to be. I've been a bit nervous about intercourse, though I was given the all clear at 6 weeks, however I have been having IVF and the scans have been much more uncomfortable versus previously. My surgeon recommended I use vaginal dilators which I'm sure would help, I'm just in avoidance mode right now! I am more aware of occassional pangs of tightness down there, but it's very minimal and nothing to complain about. I guess the point I'm making is that it does feel different and that's worth being prepared for, but nothing to be scared about. Our bodies are constantly changing anyway, this is just more marked!
- There are no real limitations on the fitness front any more (though I'm a few kilos out of shape!!) - I have been able to hike, run, do strength training, play tennis, etc. I introduced things slowly to see how my body felt, but would say it was around the 2.5-3 month mark that I started to feel like I wasn't being impacted by the surgery.
Think those are the key things from a trach-specific perspective.
On the broader cervical cancer front, I think I'm feeling okay about things...I guess the ongoing worry is if there are any lingering cancer cells that the surgery didn't get (but I know we are managing that as best as we can through the regular scans and examinations). The other thing that's on my mind and I'm struggling to find much information on is the fact that I still have an HPV infection/my husband could pass it back to me - so surely there is a risk that a 'new cancer' could form if my body can't clear that infection? It obviously didn't succeed in clearing the infection when I first got it (hence the tumour!) and my immune system is not as strong as it used to be with all it's been through lately (surgery, IVF, stress). So I feel like I'm at risk of this all happening again, and potentially in a new area that's harder to detect/treat? Not sure if others have recieved any guidance on this - Iogically I think if it was a significant risk then oncologists would be talking more about it, so probably nothing to get too worried about.
Hello,
Thank you so much for your posts. I’ve found them really useful as I grapple with the decision between trachelectomy and hysterectomy for a stage 1B. I particularly appreciated your description of how your vagina feels now. I’ve started thinking about that this week. I have had 3 babies pass through there so have experienced vaginal changes before but the surgery seems like a different kettle of fish.
Regarding HPV, my husband was concerned about this too. The surgeon said that it would still be in my body and that very rarely HPV can set up in the vagina, for example, but that it is way more at home in the cervix, hence our tumours! There is no treatment for it. Perhaps our bodies will manage to flush the virus out more easily if there is less of it and no cosy cervix for it to invade?
I really hope you are doing well and have good pregnancy news soon!
Xx
