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1B1 cone & lymphadenectomy

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Dukesy
1B1 cone & lymphadenectomy

Hi there, I have been reading these forums for the last month or so since being diagnosed with stage 1B1 cc and they have been a godsend for helping me to understand everything that's going on and how I am certainly not alone in this journey.

Last week I had a cone biopsy as the surgeon wanted to see what he was dealing with and I have just been told that I will need a further cone (as he wasn't happy with the margins) and a lymphadenectomy to remove my lymph nodes. I was just wondering if anyone else had had a cone and lymphadenectomy and how long it took for you to recover? did you need to stay in hospital overnight and how long were you off work for? 

Thanks so much ladies xxx

Helsweld

Hi. I didn't have a cone but I did have a radical hyst with lymph nodes out. I would imagine you may have to stay one night, just so you can be seen by lymphedema specialists. My recovery was fine, much quicker than expected, even after the hysterectomy. Good luck, h x

Michelle 86
Michelle 86's picture

Hi Dusky,  

I have had the same treatment and diagnosis as you. In my experience I didn't rest enough after my second cone...not realising how thin my cervix was. After a week I felt find so I was up and about as usual but later found that I should have been more careful. I have lymph nodes removed in a separate op...This was my consultants decision. So I had the op at 7am. I had a catheter put in during it. After I felt ok...A little sore but manageable. I had swelled a lot all over, the trapped air escaping was probably the most uncomfortable. Lots of burping is good, peppermint tea helps to disperse the gas too. I was allowed home next day but had to pass a certain amount of urine...After the catheter this was tricky but finally got home about 6pm. I was a stone heavier leaving the hospital...all water retention. They never told my how much I would swell....including my pubic area. I was so upset i called the nurse but she said it is normal. Two weeks later I was back to normsl size and weight. I was signed off for two weeks and got another two weeks from the doctor. They also advised phased return to work so I did mornings only for 2 weeks. 

Sparkle NZ is on here and also had the same treatment x

Hope this helps.

Best wishes

Michelle 

Clear smear April 2012

pain and bleeding Novors appointment

Colposcopy Nov 14- CIN 3 and cervical erosion

Dec 2014 LLETZ  GA

Jan 15- CC 1b1

Jan 15- MRI CT scan

27th Jan- cone biopsy GA

Feb follow up- clear margins 

March Lymph node removal

19th March ALL CLEAR ☺

June Clear smear no HPV

Dec 15 horrendous periods, discharge/spotting, ultrasound booked

Feb 16 stenosis hysteroscopy booked Feb 2016

Feb 16 cervix dilated,uterus drained.

 Dec-16 scan confirming  stenosis

Feb 17 hysteroscopy Cervix dilated, uterus drained, iud inserted under GA

Dec 17 Clear smear

Dukesy

Thank you so much Michelle and Helsweld. It is so good to hear from someone who has had the same treatment as what the doctors are suggesting for me. It's a big relief to see that there is light at the end of the tunnel. I'm a little worried this weekend as one week after my cone biopsy the bleeding appears to have got heavier and I even passed the gauze packing that they put up there to help with the initial healing. That was not a pleasant experience! Not sure I'm resting as much as I should be as I was straight back to work on the Monday after having my op on the Friday before and haven't really spent much time with my feet up. Just wondering if I should be worried that the bleeding has increased in volume since the op? I guess the important thing will be to fully rest after I've had my second cone and lymphadenectomy. The thought of my legs swelling up petrifies me!

Michelle 86
Michelle 86's picture

Hey Dukesy 

I bled for 6 weeks after mine. I think it's just gauging yourself really..signs of infection like pain, strange smell for discharge would be warning signs. Always better to be safe than sorry so get it checked out if you are worried. The swelling was a bit of a shock to be but knowing it us normal and goes down will get you through. Also everyone is different so it may not be as bad for you.

Definitely light at the end of the tunnel...A couple of months and you will be back to yourself.

Best wishes

Michelle 

Clear smear April 2012

pain and bleeding Novors appointment

Colposcopy Nov 14- CIN 3 and cervical erosion

Dec 2014 LLETZ  GA

Jan 15- CC 1b1

Jan 15- MRI CT scan

27th Jan- cone biopsy GA

Feb follow up- clear margins 

March Lymph node removal

19th March ALL CLEAR ☺

June Clear smear no HPV

Dec 15 horrendous periods, discharge/spotting, ultrasound booked

Feb 16 stenosis hysteroscopy booked Feb 2016

Feb 16 cervix dilated,uterus drained.

 Dec-16 scan confirming  stenosis

Feb 17 hysteroscopy Cervix dilated, uterus drained, iud inserted under GA

Dec 17 Clear smear

Dukesy

Just thought I'd give a little update as I had my lymphadenectomy on Friday. Unfortunately the bleeding i spoke about in an earlier post resulted in a secondary haemorrhage and I had to be admitted to A&E and stay overnight for observation. I can't stress enough taking the time to recover after just a cone biopsy. I thought I was invincible and went back to work after just a weekend off. My body certainly needed more than that.

I'm now at home after my lymph node removal and quite swollen in the lady parts and stomach. I think the worst part of the recovery is trying to get rid of the gas they pump inside you to be able to locate the lymph nodes when it's done laparoscopicly. I've felt unbearable pain in my shoulders and rib cage which has set me off into mild panic attacks. Best thing to do is concentrate on your breathing and keep taking those pain killers. Codeine will become your new best friend!

Hopefully every new day I'll feel a little bit stronger and feel more like myself. I've been signed off work for the next four weeks so hopefully this will give me the time to recover properly.

 Now it's just the agonising wait for the results of the lymph nodes. I don't have LVSI and my MRI looked ok but I'm still petrified that i may have positive nodes which ultimately means my chances of ever being a mum are pretty slim. I hope anyone else recovering from treatment are doing well. Lots of love to you all xx

Michelle 86
Michelle 86's picture

Glad to hear you are now back home and on the mend. Wishing you all the best with your results.

Best Wishes 

Michelle 

Clear smear April 2012

pain and bleeding Novors appointment

Colposcopy Nov 14- CIN 3 and cervical erosion

Dec 2014 LLETZ  GA

Jan 15- CC 1b1

Jan 15- MRI CT scan

27th Jan- cone biopsy GA

Feb follow up- clear margins 

March Lymph node removal

19th March ALL CLEAR ☺

June Clear smear no HPV

Dec 15 horrendous periods, discharge/spotting, ultrasound booked

Feb 16 stenosis hysteroscopy booked Feb 2016

Feb 16 cervix dilated,uterus drained.

 Dec-16 scan confirming  stenosis

Feb 17 hysteroscopy Cervix dilated, uterus drained, iud inserted under GA

Dec 17 Clear smear

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