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Colposcopy Results - depressing

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Loulabear
Colposcopy Results - depressing

please can someone help me decipher the letter I received.

Smear showing high grade HPV posite and severe dyskaryosis. Colposcopic impression was high grade.

Loop excision showed an extensive area of CIN III and excision margins were involved by CIN III at the ectoxervix and endocervix. The loop was received in 2 pieces both were 10mm deep.

In view of the involvement of the endicervical margin the decision by the panel is for a repeat loop excision.

So my 2nd lletz will be 6 weeks after the first.

I'm guessing its bad as the dodgy cells are deeper than they thought so they could find some cancerous ones still. I'm also worried they will recommend hysterectomy which I don't want as I would love to be able to have another baby. (I'm 35)

I'm also not looking forward to the procedure as I had a lot of discomfort the first time round. 

I suffer from mental health issues at the best of times so I'm really struggling and going to very dark places.

I want reassurance I suppose but I need to be able to be realistic as well. 

 

LaurieBeth

I am so sorry that this has happened to you.  I did not have the same situation exactly, but I did have extensive CIN III and after a cold knife cone biopsy that had clear, but close margins, I was recommended to have a simple robotic hysterectomy. I did not want more children (I was 42 and had a 9 and 11 year old already), but I did want to keep all my body parts and avoid a major surgery. I sought a second opinion, who agreed to watch and wait.  Both of my follow up appointments after the cold knife cone biopsy showed low grade changes, CIN1.  Then at the next one, six month later, it was back to CINIII and another LLETZ that showed it to be cervical cancer.  So, I had a much more invasive open abdominal radical hysterectomy a year and three months after I refused the first surgery. Sigh.

I know this is not the story you wanted, and my story has nothing to do with how your story will go. I just wanted to tell you that I feel your darkenss and despair at those kind of unexepected results.  It is hard to wrap your mind around, especially when so many women just seem to kick the virus and go on with life.  But, they don't know why some of use can't, so there is really nothing you can do except move forward with treatment and wait to see what they say and suggest.  The waiting is the worst part, so try to distract yourself from the darkness and keep busy with things you love.  All the worry in the world won't change the path you are on, so if you start feeling scared and dark, get outside, take a walk, call a friend, do anything to get your mind off all the negative thoughts. 

The good news is that CINIII is incredibly dangerous and untreated it could have ended your life.  But, you caught it.  And your doctors are worried that it is still not taken care of, so they are not going to leave you in a dangerous situation where you might lose the life that you actually have.  I know that is small consolation right now, but hold onto what you can.

Sending you my best thoughts and energy.

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

 

 

Lotty9000

Hi 

I'm sorry you are going through this. You can see my back story below but I had a second lletz 6 weeks after the first. The findings in my first lletz were unfortunately cervical cancer(adenocarcinoma) and high grade CGIN with no clear margins.  I did go one to have a hysterectomy however I did have the option after the second lletz to wait and see. I had clear margins the second time. 

What I'm going a long way around saying is that any decisions should be made with you and also taking into account the findings from your lletz and the recommended treatment. 
Hope it all goes well for you xxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma and high grade CGIN;

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

10/3/20 1st follow up including vault smear. Biopsy of presumed granulation tissue.....Confirmed negative :)

More Information

Abnormal cervical cells and treatment

Read about HPV