(0)
0 Items £0.00

suspicious direct message

9 posts / 0 new
Last post
55
suspicious direct message

Hello I have just received a direct message which looked suspicious - like a scammer. I have blocked and deleted it but I wanted to warn others that this has happened. How do I report it to Jo's moderators?

 

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result - June 2020 repeat colposcopy & pap - all clear - discharged from hospital - next smear in 3 yrs Back again August 2020 following post menopausal bleed; more tests! Turned out to be hormonal/menopause related but they also discovered a small ovarian cyst which they will check again in 4 months; cyst was not related to bleeding

Izzzy76

Had the same message, just deleted it

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
emmz13

I can't access my messages so I guess it's finally a bonus lmao xxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

Jazza
Jazza's picture

Hi 55

You can report the suspicious message by e mailing:  [email protected]   

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
55

Hi Jazza

Thanks for explaining how to report the problem

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result - June 2020 repeat colposcopy & pap - all clear - discharged from hospital - next smear in 3 yrs Back again August 2020 following post menopausal bleed; more tests! Turned out to be hormonal/menopause related but they also discovered a small ovarian cyst which they will check again in 4 months; cyst was not related to bleeding

FeelingTheFear

I had it too! Made me really angry that these scammers are preying on the people who use these forums :-(

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!

Debbie Kilmister

Good Morning, 

We are aware of this issue with these scam messages, these messages are not from Jo's Trust. 

Please do accept our sincere apologies that this is happening. 

We take this very seriously and recognise the distress that these messages can cause. 

We are dealing with this issue as a priority and hope to have it resolved as soon as possible. 

Again, please do accept our apologies. 

With all best wishes

Debbie 

Support Services Manager 

55

Hello Debbie

Thank you for your message and your help

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result - June 2020 repeat colposcopy & pap - all clear - discharged from hospital - next smear in 3 yrs Back again August 2020 following post menopausal bleed; more tests! Turned out to be hormonal/menopause related but they also discovered a small ovarian cyst which they will check again in 4 months; cyst was not related to bleeding

Triumph-Girl

I've received one too, have followed the instructions and deleted

  • 20 yrs ago CIN3 diagnosed, diathermy loop and cone biopsy, annual smears for 10 yrs, asked for 3 yearly but told not necessary
  • Mar'20 ultrasound showed pyometrium? and left ovary cyst?
  • Mar'20 hysteroscopy and biopsy showed pyometrium and scc
  • Apr 20 MRI concludes 1B cervical tumour and 1A endometrial tumour
  • May 20 Total abdominal hysterectomy and bilateral oophorectomy
  • May 20 pathology shows 4cm SCC in cervix, scc in lymph vessel and margins not clear.
  • July 20 PET scan shows possible small node
  • July 20  CT scan clear
  •  Aug 5 chemorads and 2 brachytherapy
  • end date 15 Sep