Lymphedema trachelectomy

 

Dear all,

 

 

 

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,

 

ML

 

 

 

 

 

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…

 

Hello :slight_smile:

I had a radical trachelectomy and lymph node removal in July 2013… There was also discussion about a further lletz … But they were concerned that if my margins weren’t clear the trachelectomy then wouldn’t be an option as it would prove too difficult.
To be honest I was edging towards the trachelectomy anyway. I wanted it all gone and to me the lymph node removal was an extra precaution…
I had my surgery as planned and went back to work 6 weeks later. Honestly now I feel back to normal, apart from my tiny scars (I had the procedure done keyhole) … Im lucky to have not had any further side effects.

If you have any questions feel free to PM … I don’t come on here too often anymore :slight_smile: xxx

Hi ML,

If there is one thing I've learned is everyone is different. I can share my  experience  and hope it helps. So i had lletz to remove CIN3 and then got a 1b1 diagnosis. Nothing was ever mentioned about my vaginal wall. I was given an option of trying a cone biopsy first and i was lucky to get clear margins. Do they think the cancer spread to the vaginal wall? Lletz and cone only deal with the cervix as far as i know. I also had all my pelvic nodes removed ontuesdsy so too early to give advice on that. 

EmJess can i ask were you swollen after the node removal?

 

Best of luck with everything  ML

Michelle 

Hiya :slight_smile:
I was abit swollen but only for about 6 weeks post op… I think this was due to the surgery also.

I felt back to normal about 3 months after my op xxx

Hi there,I was diagnosed 1b1 cc in Aug 13 & went on to have a radical hysterectomy by keyhole surgery with lymph nodes taken,I then went on to have 5weeks chemo/radiation because of the 1 margin by my bladder was so close and treatment was given just to be sure the cancer has no chance of returning (hopefully it won't ever)I have so far had no trouble with any lymphedema,but everyone is very different,hope this has helped in some way take care cj

Hi, so sorry to hear you are in this position. I've just been through exactly the same and I am 4 weeks post trachelectomy with lymph node removal For 1b1

the swelling has almost gone now and thank God there is no major swelling sticking around.

I was given the same options as you (although a cone biopsy was not their preffered option, they would have done it if I insisted).  They did say that regardless of whether I had a cone or trachelectomy they would still remove the lymph nodes Anyway.

lymphedema is mentioned quite a lot as you will need to take precautions to prevent it. Not really sure how frequent it is.

if you have any questions about the op please just ask. It's very fresh in my mind at the moment!

 

Hiya :-)

I had a radical hysterectomy, 17 lymph nodes removed followed by 5 weeks chemo-rads and 2 brachy. No significant side effects after 3+ years. In your shoes I would take the trachelectomy, but of course only you can select your own shoes :-)

Be lucky

Tivoli

Thank you all for your replies! It's good to know that none of you experienced any major complications or lympedema! I think I will go for the trachelectomy and hope that they won't take too much nodes out (what amount is normal?)... As for the surgery - did any of you prepare for it beforehand (fitness, diet) and did you do specific things afterwards to recover better (eating or not eating certain things, extra protein, vitamins, etc)?

Thanks a lot everyone, this forum is great and reading your stories really helped!

ML

Hi I had a trachelectomy 2 and 1/2 years ago. I never had any problems with lymphodema. I've cut my legs shaving and been eaten alive my mosquitoes and I was fine. I had an abdominal surgery and I found it tough to get back exercising etc buy only for a short while. I was off work for 8 weeks and back to normal after 3 months. Feel free to pm If u have any questions ☺

I had a large cone biopsy and lymph node disection back in Nov. I was swollen for about 6-8 weeks post-op. However after a trip away noticed that the swelling apeared to have returned (particularly after flying). i immediately contacted my CNS and was refered to lymphoedema clinic.  Within 2 weeks i had been seen and diagnosed with mild lymphoedema. I have mild swelling around the tops of my thighs and pelvic area. I now have to wear compression tights everyday (but they look pretty much like normal tights), which are designed to stop the swelling increasing. i also do a simple form of massage once or twice a day, and my fiance helps me out with this. i can't shave or wax, so have to use creams, and can't use steam rooms, or hot tubs as this increases the swelling, but all in all i haven't found that it has effected my life all that much. I was devistated when I first found out, but in reality it hasn't really been that restricting. swimming is fantastic, and I can do most excercises, including gym sessions, i just have to be careful not to overdo it, and to build up slowly!

I wouldn't let the risk of lymphoedema put you off having the trachelectomy, and personally if i was in your shoes, I would choose to have the trachelectomy. all treatments effect everyone differently, but I don't get the impression that lymphoedema is all that common. 

HI Amz,

I was very interested to read your comment. Thank you for the indepth detail. I had the same treatment but separately. So almost 2 weeks post op Im back to normal swelling wise but still a bit numb. I didnt know hot tubes, saunas ect had an effect.

Can I ask was the flight a long haul or short haul flight that you noticed swelling??

 

Michelle

Hi Michelle,

We flew to Reykjavic, Iceland, but it tool about 4hours due to a strong wind on the nose, I had had suspicions that the swelling was more than it should have been before the flight, but the flight certainly exacerbated it. We are flying to S. Africa on honeymoon in a few weeks, which will be much longer, so will be interesting to see how that works out! the saunas are a problem, as its normal to swell a bit when you are hot, but for me it exacerbates the swelling further, i shouldnt really sunbath euther, but will see how that goes in the summer!

I still have numb patches on my thighs, my consultant said that it is completely normal, and that it can take between 4-9 months to regain full sensation as they sometimes accidently 'stun' the nerves during surgery.

Amz