(0)
0 Items £0.00

Worried about lymph node removal

15 posts / 0 new
Last post
Max85
Worried about lymph node removal

Hi everyone,

Just wondering if there is anyone who has been through lymph node removal and has any words of advice for me, please? 

I've had 2 LLETZ procedures and second one stages me at 1b2. Now I've been told that about 3-5% of people with my stage of cc have cancer cells in their lymph nodes so I am having these removed for this reason.

My worries are about the actual procedure and having a general anesthetic and the stress of being in that 3-5%. I know theres not actually a question in there...think I just would like to speak to someone who has been through similar.

Cheers and stay strong

Xxx

Jazza
Jazza's picture

Hi Max

According to my surgeon pelvic lymph node removal is a relatively minor operation, procedure wise.  General anaesthetics are really good these days - my surgery was 3.5 years ago and I didn't have any after effects from it unlike the one I had back in the mid 1980s (I'm one of the older ladies on this forum).  However, I also had a spinal anaesthetic and I had a thumping headache and felt somewhat off for a day or two because of that - the doc thought I'd incurred a menigism and with hindsight I would have refused it - I personally feel it's a bit of overkill in terms of pain management  but that is just my opinion.  My lymph node removal was a 5 slit laparoscopic robotic assisted  procedure and afterwards I was bit sore  and achey in my groin area and I was walking a bit like a duck because I couldn't seem to hold myself up quite as straight as normal, also my lower back felt a bit stiff.  However it all started to improve after a few days,  I can't say how long it would have been before I got back to normal(ish) because I had a radical hysterectomy 11 days later but that's another story. 

In my view the 2 worst things about the node removal  is firstly, as you already know,  the chance that your nodes have cancer cells but the odds are very much in your favour for that.  Secondly is the possibility of developing lymphoedema as a long term side effect - lymphoedema can be managed but if you develop symptoms it is important to get it diagnosed and treated promptly.  There are other risks associated with the op which will be explained to you prior to you giving consent but I didn't experience any of them. 

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Max85

Thank you for talking me through it Jazza, that's really helpful. Yes you have hit the nail on the head... the worst part is the possibility there are cancer cells in the lymph nodes. This would then mean chemo a d radio which ends mine and my partners dream of becoming parents. X

Jazza
Jazza's picture

There are a range of options in terms of fertility/having children.  I'm not au fait with them but that wouild be something for you to look into if the need arises.  Just to say I came across one poor lady who was traumatised because she had been rushed into chemo radiotherapy treatment before being given a fair chance of discussing egg retrieval etc.  In the unlikely event you find yourself in that sort of situation you might want to ask for a second opinion.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Max85

Thank you for your reply Jazza. I asked my cancer nurse about saving eggs and she had a bit of a weird reaction like it wasnt something that was routinely done or she didn't really know much about it.  Perhaps because a different department deals with that sort of treatment. Or maybe I was a bit upset and didn't make myself clear or take in what she said properly. Why do these questions always occur once you're out of the appointment! I think I will give her a call and see what she says about it. Thanks again lovely xxx

Jazza
Jazza's picture

Hi Max

If you haven't already found it here is a link about fertility on this website: https://www.jostrust.org.uk/information/living-with-cervical-cancer/fertility

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Rissag

Hi max I had lymph node removal, they did a 5 slit keyhole surgery. Mine was a sentinel lymph node removal, they took lymph nodes from my sides and pelvic and all around. In my pet scan it showed a very light shadow in my paraaorta , so they wanted to make sure there was no lymph node involvement in there. Luckily there was not , but I had a pelvic lymph node with microscopic cells in it, so they bumped me up to stage 3. In my surgery they also transposed my ovaries. Since I had that lymph node involvement they had to extend my radiation field so unfortunately the transposition wasn't successful at saving my ovaries. I think lymph node removal surgeries vary, so I think it depends on what kind you're getting. Seems like most people get just the pelvic lymph node one. Since mine was all over my abdomen I was pretty sore for quite awhile.

  • 01/22/2019 abnormal pap results 
  • 04/04/2019 colposcopy/ punch biopsy 
  • 04/15/2019 diagnosed with squamous cell carcinoma stage 1b2 6cm tumor 
  • 5/10/2019 egg retrieval surgery. 2 eggs retrieved and frozen 5/23/2019. 5 slit laparoscopic lymph node removal surgery and ovary transposition. 1pelvic lymph node involvement, bumped up to stage 3
  • 6/19/2019 started radiation and chemo
  • 8/5/2019 4 brachytherapy. Finished cancer treatment 25 radiation 5 chemo and 4 brachytherapy,Awaiting scan in November 
Pet scan results NED 11/13/19
Max85

Thanks for your reply Rissag. Im sorry to hear the transposition didn't work but congratations on completing your treatment.

That's the thing with the lymph nodes isn't it...until they get them out and have a look they don't know if or how much they are involved.

Just had my surgery date through for the 25th August...how long did it take for you to get your results after they were removed? 

Xxx

 

 

FeelingTheFear

Hi 

I had lymph node dissection at the same time as radical hysterectomy, so not quite the same situation as you and Jazza and difficult for me to differentiate which was due to what procedure. I was terrified of what would be found in the lymph nodes, fortunately they were clear, and I am now just keeping an eye on my right groin which may have lymphoedema or may just be normal post op swelling and nerve damage. Watching for lymphoedema, keeping as active as possible and taking extra care of the skin on my legs and feet is something I accept as my new normal. 

I'd never had an anaesthetic before my op but I was lucky that I woke up feeling pretty good, I didnt have any nausea or vomiting, and I was able to eat and drink right away (always did have a good appetite!) As jazza says, the drugs and dosage they use are getting better and better all the time.

Its more than likely that your nodes will come back clear but this procedure will give you that peace of mind in knowing for sure, I sincerely hope you will get that reassurance and can get back to planning a happy future with your husband 

All the best xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Max85

Our journeys so far seem quite similar... but you are a few months ahead of me having had your treatment and now waiting for your follow up.

Thank you for sharing your thoughts with me.

I have been advised that the 2 LLETZ treatments were enough to get rid of my cancer and that a hysterectomy would not be needed but that there may be pesky cancer cells in my lymph nodes. Do you mind if I ask if you had any scans to look at your lymph nodes before it was decided to remove them, please? I was told by one doctor I would have and MRI and CT scan to see if any were inflamed but I haven't had either of these and have just been told they will take some out to check them under the microscope.  I know this is more certain than a scan, but I worry about having a general anesthetic. 

Xxx

anna82

Hi! I've had my lymphnodes removed, they need to do it in order to be sure there aren't any microscopic cancer cells, which can't be seen on the scans. I did have the MRI beforhand to make sure the cancer hasn't spread beyond the cervix. In

terms of surgery and anaesthetic it was ok, I could go home after one night in the hospital, but I was also terrified about the results which I got 3 weeks later.. All nodes were clear so no further treatment. 

Good luck, I hope it all goes well for you! 

Max85

Thank you for your message anna. I am hoping and praying I am in the same position as you soon as the thought of losing my chance to have children is breaking my heart. It's so cruel that a disease that affects me also affects my loved one so much even if it is cured and I can walk away from it. 

Do you mind saying what stage you were please?

Xxx

anna82

I know the feeling!! I was staged at 1b1, they gave me about the same chance of finding cancer in the lymph nodes as they did for you.. A lot depends on your cancer type, depth and lots of other factors, but the fact that they want to go ahead and remove them is already positive, that means they think they'll most likely be clear and want to give you the best chance to preserve your fertility. 

xx

LaurieBeth

I also had lymph nodes removed as part of my radical hysterectomy for 1B1, but they were looked at in a scan before removal.  They looked normal, but still had to be removed because there can be microscopic cancer cells.  Mine were all clear!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

FeelingTheFear

I had an MRI and PETCT which both looked clear but due to the scans not being able to pick up microscopic cancer I had to have them out anyway. The scans are probably more about making sure that chemorads are not a better course of treatment as a clear scan seems to mean you still get your lymphnodes out regardless 

xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

More Information

Treatments for cervical cancer