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PLEASE HELP!!

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haylesd
PLEASE HELP!!

Im so upset with myself right now, I am 34 and  I have now been told I have high grade dyskaryosis.

I went for my colposby on tuesday this week, nurse said there was 2 areas she was concerned about and did LETZ there and then, she also said that she wanted the results fast tracked and I would have them back in 2 weeks.

Unfortunalty because I went to the appointment on my own I didnt really ask anything as I was that overwhelmed so I had so many questions going thorugh my mind but I turned into a mute. The only thing I asked was "could it be cancer" and the nurse said "yes it could be, but lets wait for the results"

I rang my docotrs today to clarifiy what the smear results actialy said as I cant view them online and the receptionist confirmed, "high grade dyskaryosis and invasive query carcinoma" 

Of course I am now ABSOLUTLY terrified because at no point as ANYBODY told me anything about invasive query carcinoma. Having looked online it says that invasive cancer in when its spread to other areas.

I dont really have any sypmtoms but for ther past year ive had back ache and also pelivc pain on an off which I have put down to stress.

Can someone please help put my mind at rest over this, has anybody had these reults and been fine?

I am so worried, my daughter is 17 and ive been married 3 years, cant think of anything at the moment accept this is all my fault for not going! My own mother had many issues that led to her having a hysterectormy aged 40 due to the same thing..

 

  • 5th June 19 - smear
  • 15th July - High grade dyskaryosis/?invasive carcinoma 
  • 23rd July - colposcopy, LLETZ biopsy taken
  • 6th September - Met the consultant to discuss results. Stage 1A2 confirmed, unclear margins on biopsy. Unable to perform 2nd LLETZ due to alot of cervix being taken away on previous biopsy.
  • Hysterectomy booked for 15th October
  • Pre-op done 11th October, all good to go for next week!
Total Hysterectomy completed with ovarian conservation. Waiting for pathology report.
Lotty9000

Hi Hayley 

Im sorry you are going through this tough time. I probably can’t put your mind at rest regards whether it is CC or not but I can tell you it’s not your fault. Please don’t blame yourself, you’ve been and got your smear,it doesn’t matter if it’s the 1st one you’ve had or the 100th, you went. 

I know it’s really scary at the minute,worrying,not knowing. If they fast track your results hopefully you’ll get them after about a week or 2. I know this sounds like a horrendous wait but it will come round quickly. 

I hope that it is not CC obviously but if it is you can fight whatever it is. There are lots of women on here who have had various stages of CC who have been NED (no evidence of disease) after treatment. Try not to panic until you know what you’re dealing with.

Thinking of you xxxx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

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:-)

Cherryelm

Hello Hayley I will not tell you not to worry because we all do it when we are looking at a cc diagnosis. What I will say is query is a term that medical staff use to mean maybe not definitely. Nobody knows until all your results are in. In the mean time do nice things treat yourself and your family even if it's simple things like girly shopping with your daughter or a date night whatever the outcome this is all doable. Good luck and take care x

Smear test march 2018: CIGN

LLETZ April 2018: no clear margins

2nd LLETZ May 2018 Adenocarcinoma

Staged 1b1 pattern A following eua and mri.

Radical laproscopic abdominal hysterectomy with sentinel lymph node removal July 19th 2018

July 31st 2018 oncology follow up tumour removed no lymph node involvement. No further treatment needed

October 2018 check up all well.

 

haylesd

Thank you both of you! Im still waiting for my result so still very nervous. Had a couple of drinks over the weekend and went out for a nice meal with hubby. Just want the results now so I can deal with he iether way. I will keep you updated. xx

 

  • 5th June 19 - smear
  • 15th July - High grade dyskaryosis/?invasive carcinoma 
  • 23rd July - colposcopy, LLETZ biopsy taken
  • 6th September - Met the consultant to discuss results. Stage 1A2 confirmed, unclear margins on biopsy. Unable to perform 2nd LLETZ due to alot of cervix being taken away on previous biopsy.
  • Hysterectomy booked for 15th October
  • Pre-op done 11th October, all good to go for next week!
Total Hysterectomy completed with ovarian conservation. Waiting for pathology report.
Lotty9000

Hope you enjoyed your weekend. Good for you for getting out!

Definately keep us updated.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 

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:-)

haylesd

I had a lovely weekend thank you! So Im day 8 and still waiting. Ive called the doctors and they havent heard anyhting and nothing is showing on my record. Just need to keep waiting, all this waiting is sending me insane! Im so depressed, I go on holiday next week and ive now realised i cant even weart my bikini bottoms as I cant wear tampons. I can cope not going in the pool or sea but going to be so annoyed at having to keep my shorts on all the time! Im also having some very odd period pains and very watery dishcharge. Which to be fair I was getting before for quite some time but I thought it was a weak pelvic floor but clearly not! Just another sypmtom I think I missed. Mind is lieratlly driving me mad.

 

  • 5th June 19 - smear
  • 15th July - High grade dyskaryosis/?invasive carcinoma 
  • 23rd July - colposcopy, LLETZ biopsy taken
  • 6th September - Met the consultant to discuss results. Stage 1A2 confirmed, unclear margins on biopsy. Unable to perform 2nd LLETZ due to alot of cervix being taken away on previous biopsy.
  • Hysterectomy booked for 15th October
  • Pre-op done 11th October, all good to go for next week!
Total Hysterectomy completed with ovarian conservation. Waiting for pathology report.
Julia9054

Hey Hayley

I think watery discharge is normal.

I had it lightly at first and then getting heavier until day 7 after my lletz. Then I started bleeding and bled for about 5 days - about as much as a light period. Then a sort of stained discharge (yuk, sorry!) for about another week. Panty liners were enough to cope with this so you may be ok if they fit in your bikini.

There seems to be a wide range of normal though.

haylesd

Just to update. Didnt get my results before holiday. Got a txt when away for an appointment whilst still away. Rang up to change and obviously wont tell you anything over the phone. Now home and Had my letters off he hospital. The first one was just a basic one with all options on it saying it could be more treatment or just to see a doctor. The 2nd one that has come says my appointment has been changed with Mr Todd. I've googled him and he's the consultant for gyne oncology in our local hospital. So obviously need some sort of treatment that requires seeing someone in oncology. More waiting and more not sleeping now as my appointment is another week away!! Any advice welcome Xx

 

  • 5th June 19 - smear
  • 15th July - High grade dyskaryosis/?invasive carcinoma 
  • 23rd July - colposcopy, LLETZ biopsy taken
  • 6th September - Met the consultant to discuss results. Stage 1A2 confirmed, unclear margins on biopsy. Unable to perform 2nd LLETZ due to alot of cervix being taken away on previous biopsy.
  • Hysterectomy booked for 15th October
  • Pre-op done 11th October, all good to go for next week!
Total Hysterectomy completed with ovarian conservation. Waiting for pathology report.
Lotty9000

Hi Hayley

As we’ve said before the waiting is awful. It’s hard not to let your mind run away with you isn’t it. It will be easier once you know exactly what is going on and what the plan is from here. 

I had stage 1A adenocarcinoma detected from my lletz specimen. I had a second lletz and am having a hysterectomy on Thursday. 

Thinking of you and I have everything crossed that it’s nowhere near as bad an you have imagined.xxxx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

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:-)

haylesd

Can I just ask, how come they have offered the HS if your margins on your 2nd LLETZ? Something ive seen on here many times. Is it just as a precaution? Again, my mind is overdrive with me being told I will be having some further treatment on Friday. I can only presume it will be another LETTZ like yourself.

xxx

 

  • 5th June 19 - smear
  • 15th July - High grade dyskaryosis/?invasive carcinoma 
  • 23rd July - colposcopy, LLETZ biopsy taken
  • 6th September - Met the consultant to discuss results. Stage 1A2 confirmed, unclear margins on biopsy. Unable to perform 2nd LLETZ due to alot of cervix being taken away on previous biopsy.
  • Hysterectomy booked for 15th October
  • Pre-op done 11th October, all good to go for next week!
Total Hysterectomy completed with ovarian conservation. Waiting for pathology report.
Lotty9000

Hi Hayley

The options discussed following 2nd lletz were 

1. 6 monthly colposcopy for the next 5 years

2. Hysterectomy 

My issue was I had adenocarcinoma which is glandular CC, not usually picked up on a smear, hence colposcopy and not smears. If I had squamous cell CC I probably would’ve opted for 6 monthly smears as changes more easily detected. The issue with colposcopy was as it was glandular they may not be able to see the endocervical canal well enough to assess and then they may be offering further lletz which would be my 3rd and although possible would potentially lead to being offered hysterectomy again. 

I opted for hysterectomy for peace of mind to an extent,it wasn’t an easy decision tbh, I had lots of debates,also I’m 39 and completed my family. I had some irregular bleeding over the 3 weeks before I had surgery which helped make my mind up. Turns out after my hysterectomy the consultant came and spoke to me and said that looking at my cervix they wouldn’t have been able to see anything as it’s had quite extensive lletz including a top hat proceedure so it was the right decision.

I suppose it depends on everyone’s individual circumstances. If I was 25 with no kids I may have chosen differently.

Dont know if that helps?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 

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:-)

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