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Radical hysterectomy Q

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NightFury
Radical hysterectomy Q

Hello ladies

I am new here, looking a bit of support and info! 

But first things first. 

I had a smear test back in Dec, abnormal cells detected, was awaiting colposcopy. Due to pandemic it was delayed till end of May. It confirmed abnormal cells and LLETZ performed, 2 wks after was called in (silly me thought it is just follow up app) to be told biopsy confirmed cervical cancer. Had MRI scan 2 weeks ago, 1a2 confirmed. At the app with consultant he reccomended radical hysterectomy (which does not really bother me as I have 2 children and our family is complete).

I am awaiting operation date and googling the possible outcomes (I know, not the wisest thing to do).

Any ladies on here could share their experience? What to expect before, during and after the surgery? 

I now have to self isolate till surgery (due to the COVID19 risk) so plenty of time on my hands and plenty of dark thoughts about too mainly about surgerys side effects - and it scares the hell out of me...

Tomorrow is my pre-assessment telephone consultation, anything I should ask? 

Many thanks in advance

Take care 

Jazza
Jazza's picture

Well sorry you find yourself in this club but welcome, there are lots of lovely ladies here who will support you.

It would help to share relevant experience if you can say whether you going to have laparoscopic surgery or open surgery.  I'm assuming you will be having pelvic lymph node dissection - so just to let you know that sometimes this is done as an initial separate surgery and sometimes at the same time as the hysterectomy.  If I knew then what I know now I would ask if the surgeon does nerve sparing surgery - it was only after my op and I was having bladder problems that my surgeon told me he didn't always do nerve sparing albeit I was a challenging case as my cancer (stage 2A) was at the upper limit for surgery. 

And, definitely stay away from Google for this - it will only hinder.

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
NightFury

Hi 

Thank you for your reply! And answering your question- this I still don't know. 

My cons told me that during LLETZ a good bit of my tumor was removed however the MRI still showed that cancer is still there - they will be considering whether to do open or laparoscopic surgery couple of days prior. I don't know why, to be honest I cried during the app and could not think of any questions. Just at home I discovered that the tumor I have is adenocarcinoma which dr google states it's a rare form of cc. 

Consultant advised me that according to the newest research open hysterectomy has lower chances for return of cancer but he said it will be discussed at the MDT days before the op. 

Thank you for the suggestion I will ask this question! They told me they will remove everything apart of ovaries so I am assuming that they will remove pelvic nodes too! 

Thanks again

 

Jazza
Jazza's picture

I would suggest it's worth writing down your questions before your phone consultation tomorrow - it's easy to forget things when you are trying to take on board what the doc is saying to you during an appointment.

Mine was the more common squamous cell carcinoma but there are ladies on this forum who have been diagnosed with adenocarcinoma.

All the best

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
NightFury

Thank you 🌺

FeelingTheFear

Hi nightfury 

I had open radical hysterectomy and lymphadenectomy in May. I was absolutely terrified (hence my username) but I got through it, and im feeling good again :-)

There are lots of aspects of the experience I would be happy to share with you so do feel free to message me or ask any specific questions. 

Good luck with your pre op assessment, I found mine was very thorough and I was given a lot of info so have a pen and paper handy to jot it all down. 

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!

LaurieBeth

Hello nightfury!  Like FeelingtheFear I had a radical open hysterectomy with lymph node dissection ten weeks ago.  It was terrifying and no walk in the park, but ten weeks out I am doing great.  I would direct you to the treatment page.  FeelingtheFear and I had a long thread there creatively called "Radical Hysterectomy" (ha!) and we both put a lot of details in about our experiences.  If you have specific questions feel free to message me at any time.  This is all fresh for me and I have a lot of thoughts.  Or post the specific questions here and the recent RH girls will overload you with advice and insights.

Best of luck and keep us posted!

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

 

 

NightFury

Thank you LaurieBeth! I am just getting to know this website and forum so thank you so much for pointing me to yours + FeelingTheFear post! I've read it all and not sure how I feel now. 

FeelingTheFear has sent me a lovely guidance on the op and recovery itself which sort of prepared me and took a bit of "the fear of unknown" out of my shoulders but geez the post in treatment with step by step scared the life out of me... and I also want to thank you for that as I like to be prepared for the worst.

When I read the posts on this forum I am so angry that cancer exists and we have to go through this! 

Again - thank you - I am now well prepared mentally of what will come. Now just the wait for the actual date of surgery! 

Take care! Xx

LaurieBeth

Sorry for any fear I caused, but I desperately needed information before my surgery, and I wanted to have it out there in the world for others who might be like me.  I am going to be honest--the first couple of weeks were less painful tand traumatizing than I expected.  I think you will find the same--you will build it up so much that you almost can't help but be pleasantly surprised. I was just caught off guard by how feeble I was for how long--I expected to bounce back in a few weeks, and it is just not that kind of surgery.  But even though I was feeble, I was not in agonizing pain all the time.  I actually was sent home with ONLY ten pain pills...not even enough for two full days.  I only took eight of them.  And I really was fine. I was just slow, sore, and tired...for a long time it seemed.  But by week two, I was up and moving around quite a bit each day.  It takes patience more than anything and support, which is luckily something we can help to provide you!

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

Totally agree with Lauriebeth, it was a whole lot less traumatising and painful than I expected too. But on the flipside i was tired, slow and sore for longer than I expected, and sometimes that was frustrating, which likely comes across in some of my posts on that recovery thread 

I would do it all again 10x over if it meant I could kick cancer's arse!

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

Cervical cancer