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Petrified sister :(

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Saslou1
Petrified sister :(

My sister had her smear - 

11 weeks later result showed ab cells and high grade HPV

4 weeks later seen at hospital called back 3 weeks later for treatment by laser.

at appointment doc noticed signficant changes from appointment 3 weeks previous and said “we are passed that now, cannot perform laser treatment won’t be effective”

2 weeks later attended clinic for punch biopsy - 5 taken

2 weeks later we are here and attending appointment for results and treatment plan this week

 

her appointment has been cancelled with gyne and booked in oncology for same date and time, does this mean what I think? Trying to be the strong one but so frustrated with the waiting and no one will tell her anything over the phone 

Lotty9000

Hi 

It might not be as bad as you assume. Sometimes the oncology team get involved for high grade changes that are extensive, or that require much closer monitoring. It may be that your sister does receive a cervical cancer diagnosis unfortunately I can’t reassure you that’s it’s not but there are other reasons. 

Hope you’ve not got long to wait. 

Xxxxx

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:-)

Saslou1

Thank you for your reply! Trying to tell myself all will be ok but can’t help panic can you! And such a wait with results and no one will tell her anything over the phone so she just feels fobbed off! 

She initally went for treatment following colonoscopy but once their doctor commented on significant change since he saw her just 3 weeks previous, and that this treatment wouldn’t be effective for her now so I’m expecting to hear the CC words, am I right to be reassuring her she will be ok and probably be nothing serious? Or should I be realistic but supportive? The whole thing makes me so nervous because I just want to do and say the right thing! 

Lotty9000

It’s really tough.

Whatever the results are it’ll be ok, you can reassure her you’ll be there for her regardless. If it is CC hopefully it’s early stage and therefore curable. I think you just need to be supportive.

When is her appointment? Hoping not a long air, it’s really frustrating that they won’t give you answers over the phone but that’s policy and they cannot help that.

xxxxx

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:-)

Saslou1

Her appointment was supposed to be 9:40am tomorrow morning! Called at 5pm tonight to cancel and told her that biopsy results are back but have been sent off for further testing a consultant will call her (no idea when) and wait for a new appointment in the post! She’s an absolute wreck! Totally disgusted in our NHS she had her smear in January for goodness sake! 

This conversation should have come from the consultant with his findings and explanation of why her appointment is cancelled! 

haylesd

I understand your concerns about your sister but to say your digsuted in the NHS I find quite a harsh remark. Yes your sister had her smear in Jan, however its not like shes not had no action since then, the NHS is extremly bust at the moment as we all know. If there was any major concern they would have had her back in alot sooner. Once CC is detected they tend to worj very quickly. Its doesnt mean that she will have CC just because they see Oncoloy, high grade can also be the cause too and the fact they want to keep an eye on her. Her next appointment will come through for the next week or so. Where I live our Gyne Oncoly unit is a specalist unit that provided for 5 other regions and i havent had to waitlong for my appointments. The nonly delay was my actaukl smear results, but they delay was as a whole nation due to the fact how many woman are having them done, which isnt a bad thing

Try and stay strong and I think its nice your thinking of her that much, dont get anrgy because that certianly wont help your sister when she does go to see the consulant.

x

 

  • 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.
Saslou1

So true! 

Disgusted is strong, just hard when I’ve other friends had their smear abnormal results and treatment within 3 weeks in our area and the lack of communication. Nurse calls her with this info but when she asks for more info they can’t tell her  

Saslou1

Thank you for your reply and reasoning! 

Good luck with your surgery xx

Heavensnewangel

I went through a similar situation. I will apologize ahead of time if this is long, I'll try to make it short but not want to leave things out as it may help you. Last November, I went for a pap.I was 50 years old and never had a pap in 25 years. 3 Weeks later I get a call to go for a colposcopy scheduled for December 18th, they took 3 biopsies at the time...

Fast forward, 3 weeks later (early January), I get a call to go for a leep on February 8th...February 8th, she was all ready to do it and said to the nurse, no I am not going to give her a leep, I'm going to take more biopsies...So  like you and your sister, I was worried where my heart was pumping...I'm thinking, yep it's cancer because after the biopsies.  she did another pelvic test to feel... So right then, I'm thinking she sees something suspicious as she wants to feel...She took about 3 more biopsies higher up.  After it was all done, I came out and asked her, is it cancer, and she said no its severly high grade and the whole cervix is completely white so we're going to give you a cone...

UPDATE: I had the cone done on April 18th and saw her on May 2nd and I got the all clear with clear margins...I got back October 21 (next week) for my 6 month follow up.

Hope this helps as when I was told to go for the leep, she couldn't do it and arranged for the cone instead.  Like you, I was scared to death and the staff and doctor told me nothing until I asked was it cancer..Doctor didn't tell me nothing until I saw her on March where she explained all the results and said it was a pre-cancer...She said, "Oh I don't like to give results until everything is in"..."Like yeah, that helped calm me down doc "sarcastically" ...It terrified me more because one tends to think they will tell you if its good news right away saying "don't worry I don't think it is anything" unstead I got silence so I'm thinking she was suspicious of cancer and woulnd't tell me until she knew for sure.  (that is where my mind set was). The only thing that did keep me sane and calmed down was the time span between appointments..I kept my mind at "well if its anything serious, they would have me in right away...I've lost many family members to cancer, including a mother to cervical cancer, so I know when they do find it suspicious, they don't wait 3 weeks between each appointment to see you It moves much faster, so I did think of that to get me through 4 months of waiting "from November to March" before knew it was just a pre-cancer.

And when I mean fast, my mother was in remission for 8 years and she went for a ct for a hernia and when the results came in her doctor called and said we seen changes, and put her on hold and called "princess Margaret" this is a cancer hospital where she dealt with her cancer the first time, and after the doctor came back on the phone and said you have an appointment with Princess margaret on Monday with the doctor who treated her for cancer the first time...this was a Friday they told her, and her appointment was for Monday..It takes months to get an appointment with her Gyn cancer doctor, and she got right in...So that's what I mean by fast. Her cancer was back, and he didn't need a biopsy to confirm it. He just give her a pelvic and said "yep, there it is" the cancer's back. He felt the tumor. 

Saslou1

Reassuring to hear the inital stages all take some time! 

She has logged a complaint with the hospital now because she’s been told conflicted information, a nurse called and said her biopsy had showed anomalies and had been sent back and her consultants secretary has confirmed this is not true and her biopsy results are not even back yet! So we do feel a lot better that it’s all still wait and see rather than they know and she doesn’t. Next appointment booked for 1/11 x

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Abnormal cervical cells and treatment

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