I really need your advice! In January I went for my first smear, which came back with severe dyskariosis and an urgent hospital referral. I had my colposcopy on the 12th of February, and they did a LLETZ there and then. Although a huge part of my cervix turned white, as well as a small part of my vaginal wall, they only removed one area that looked very suspicious. The results of the biopsy where in within a week, and it turned out to be cancer. After an MRI scan last weekend I was staged 1b1, but I don’t remember them telling me what grade, or what type of cancer is was (squamous or adeno). I think (but I’m not exactly sure) the tumour size was 6mm x 3mm. On the MRI they could not see anything.
Now the doctors presented a couple of options to me:
1) doing another LLETZ and hoping that this will be enough to take out everything, but if it turns out that it wasn’t, a radical hysterectomy will have to be done.
2) Having a radical trachelectomy with lymph nodes removed (I think he mentioned between 15 and 25 nodes)
3) Having a radical hysterectomy
As I’m only 27 and would like to have children one day, the LLETZ or trachelectomy sound like the best options. The doctor mentioned that LLETZ would be very risky here as there is a high chance that it will come back and/or not everything was removed. So I think the best option is the trachelectomy, but I am extremely scared about the complications.
I am particularly scared about developing lymphedema. I have been reading about it and when I asked my doctor about this he said it is very unlikely I will get that. However, from reading forum posts I have the impression that there are quite a lot of women that develop it. My question to all of you who had a trachelectomy or hysterectomy with lymph node removal: did you develop lymphedema? If so, how bad is it? To what extent does it affect your life?
I also read about a procedure called sentinel node dissection, where they only remove the ‘most suspicious’ nodes, if I’m correct, and this reduces the chances of lymphedema. I was wondering whether any of you had this done instead of the regular lymph node removal?
I really would like to know what the risk is and how it affects your life afterwards, so it would be great if people could present their stories about this potential complication…
Many thanks & lots of love,
PS. The surgery is provisionally scheduled for early April, so I would like to find out as soon as possible whether I might want to opt for a different treatment…